Not nearly as bad as people will share I’m sure, but I had a doctor suggest a glass of wine for my pain. I told her I have a family history of addiction and she was like “well, it’s just a glass. It should be fine as long as you don’t make a habit.” YOU ARE TELLING ME TO MAKE A HABIT OF IT. Also I think a glass of wine will be quite insufficient and probably not a good thing to mix with NSAIDs????
WHAT?? Wine also causes bloating and discomfort, which can irritate endo symptoms. All alcohol does. That's so messed up. "A glass of wine a night" IS A HABIT. Also, wine isn't a pain killer??? The heck was this doctor on?
I'm floored.
She said it was “a mild muscle relaxant.” But I don’t think that’s what you need when your cramps turn your legs into jello and your body flashes hot and cold and you’re afraid you might collapse waiting for the elevator to come down two flights.
Alcohol causes inflammation which is a major factor in so many forms of pain including endo?? Lol baffling.
I wish I could say I never heard this advice before. I asked for help sleeping through the pain & got “a glass or two of wine before bed” despite family history of alcoholism 😩
How about instead of prescribing wine which will only lead to inflammation and in excess, a flare up. Why don't we prescribe the drugs that have been developed to treat this pain.
Ugh, I don’t get why people think this helps pain? I had endo pain while I was pregnant and my FILs girlfriend told me I should start drinking a glass of wine a night. This woman works in healthcare 😳
Honestly it annoys me so much that I need a script for painkillers that 5 years ago were over the counter (in my country) whereas I can walk into a bottle-o and grab enough alcohol to kill me. Or if I tried cannabis for pain relief then I’d be arrested and loose my job. Alcohol does so much more harm with less benefits
Luckily I have access to fully legal marijuana where I live. I can take tiny doses of gummies so I don’t get high but still get pain relief and anti inflammatory benefits.
I don’t know if it would be suitable for me and I’m not the person fighting for legalization but I do feel there are more dangerous things that the government lets us have. I understand people abuse opioids but some of us just are in pain. Lots of people abuse alcohol yet it’s perfectly legal for anyone over 18 here.
I’m hardly an evangelical of weed, but it is 100% less harmful than alcohol or opiates. I take like 1-2mg of THC at a time, usually with 10-20mg of CBD or other non psychoactive compounds. I don’t like being high generally, and in such low doses I don’t really feel anything except maybe a tiny bit of relaxed silliness.
I had a male doctor recommend wine to me for my pain (vulvodynia), and refused to refer me because he said I’m a “good girl” and didn’t want to “expose me” to different doctors (since at the time I had only slept with one person). Suffice it to say I fired him after that and found a gyno who was actually willing to listen and help find the real problem of vulvodynia
Ew! This is wrong on so many levels, but that last part 🤢 I don't "expose" myself to doctors, and I don't think anyone who would consider medical examinations to be equivalent to having been "exposed" to genitals should be a doctor.
Yuck.
Right?!? I was shocked he said that. But I straight up was like no I want the referral and he said no.
Also earlier than the above, I had told an NP sex was so painful my ex and I stopped having it and NP told me to “push past the pain, otherwise he would leave me”. I was like nope we’re in a loving and committed relationship and do other things instead.
I had one nurse say that my symptoms are related to a STI - even after I had all tests came back negative. I said, I have been married with one partner for over 10 years - and she said, "well, men cheat and he will probably give you an STI."
This was said to me when I was a VIRGIN teen when I started experiencing pain/symptoms! Was given a shot of antibiotics, a round of oral antibiotics, and weirdly enough no STD test 🤔
I had the same thing happen when I went to the emergency room for pain. The doctor told me I had pelvic inflammatory disease. I had just had my youngest 3 month before. I was also married and knew there was no way that’s what it was.
My old doctor said the cure to my endometriosis was to just get pregnant again, cuz while pregnant the symptoms “subside”. Ok cool, so just be pregnant for the rest of my life I guess?
20 kids later 🙄 I swear that doctors don't understand how stupid that sounds. "Just get pregnant" as if it's going to the store and getting a jug of milk. Do they not realize that you have to deliver the baby? And then raise the baby for 26 years?!
Ya brb gonna tell my bandaid child that since they're born that now I'm in too much pain to cope....like how do they even expect this to be a solution it's insane to me. I had a doctor say some people feel better with pregnancy...I never even mentioned wanting to be pregnant, I was seeing her for chronic pain.
Conspiracy theory: Endo was created to ensure the Handmaid’s tale would take place bc we would all just have to keep being/getting pregnant to have relief of our symptoms 🤢
Why tf are Drs, particularly the male ones, obsessed with fertility and having more kids? I've had multiple male Drs say these kinds of things to me throughout my life.
Ooof this one is way too common. I've had it twice myself. My gyn's original plan, after he found out I am hetero and committed ), was to perform a lap right before my then boyfriend and I decided to start trying for kids. Then my bf and I could get busy as soon as possible after my recovery to increase my chances at pregnancy??
I had not even stated by this point if my boyfriend and I wanted kids or not (plot twist, we don't).
I was told this too by a male gynaecologist- go get pregnant and your symptoms will disappear! Went and paid privately to see an excellent female gynaecologist and found out I have a less than 1% chance of conceiving naturally. Funnily enough I’ve not gone back to him!
I had a doctor (GP) tell me there was no way I have endometriosis because I had a C-Section and they didn’t find it then (even though they weren’t looking for it, and just trying to get my baby out safely).
I was officially diagnosed a few months later during a lap. I wrote a complaint to that doctor after.
Good on you sending that complaint. A C-section wouldn't see endo in depth either. The point of a laparoscopy is that they have cameras. C-section like you said is focused on the child.
I'm so sorry your doctor was so dismissive. I feel like doctors forget that they technically work for us. 🙄
Before I knew what was happening to me (and before I knew about Endo), I spent 3 days unable to move from the pain off the couch and this was after my period had ended so I was confused. I had a pap smear that was irregular recently before this and I was terrified I had cancer or something else. I called and messaged my gyno with anything to ease my pain and anxiety. I was taking 3 ibuprofen every 3 hours and it didn't touch the pain. Her nurse called back after 3 days and literally said "Dr. Soandso doesn't want to see you. She said take some ibuprofen and that should help. She'll see you at your next pap smear." I was absolutely devastated, I never cried so hard.
I always say how grateful I am that I had such a large endometrioma and got diagnosed pretty quickly with Endo. Because I can't imagine people who go through this for years/decades and no one believes them.
Edit: I wanted to add that I stuck with the same gyno this whole time for some reason and when they finally found the huge endometrioma, she really came in with her tail between her legs to "diagnose" me with endometriosis. That felt good.
I love that they finally diagnosed you but I absolutely despise that they were so dismissive of your symptoms to begin with. "See you at your next pap" THATS A WHOLE YEAR... I would have cried too being tossed like that 😧
-you’re crying alot (from being in pain so bad I thought I was dying) do you have a therapist ?
-I’m not going to give you drugs
-you’re choosing to suffer by not going on birth control
-the first thing said to me was “I’m not doing surgery”
-women go thru a lot of pain. It’s normal
Pain is most certainly not normal. Also how is it that doctors think that bandaid medicine like birth control or ibuprofen will resolve the issue?
ALSO YOURE CRYING ALOT?! Bye. Of course we're crying because that's literally how 1. Bad the pain hurts and 2. How traumatizing these medical experiences are.
Thank you for sharing. I'm so sorry these doctors gaslit you and dismissed you. You're not alone
Honestly, definitely not as bad as what’s been posted here (yikes you guys) but it’s more been attitudes that were the worst.
I remember I told two ER nurses that I had two vaginal deliveries without pain meds (to explain that I’m not just a wimp) and that my endo pain was worse, they both laughed and said “I don’t think so.” I asked what I could do, answer was “take Panadol.” I said, “I already did that, it didn’t work. I wouldn’t be here if it did.” Response was repeated and dismissive. “…Just take Panadol.”
Just remembered this one, it isn’t endo specific — but definitely a female health issue — I went to my doctor concerned that I had prolapsed, he examined me and yelled “argh! It’s all floppy and baggy!” I felt awful and ashamed but thought okay, I have an answer. He sent me to a gynaecologist who was dumbfounded and said I was completely normal. I didn’t believe her, had it checked twice more by two other doctors. First doctor had made me feel so gross that I couldn’t believe there wasn’t anything wrong.
LMAO truth on the Andrew Tate of a doctor. I like to think I would have kicked that guy in the face but realistically I'd be in shock that was even said to my face.
It would shock me into a state of paralysis 😂
Floppy and baggy- sir you are a doctor, please use the terms vaginal laxity and prolapse while you stare directly into my cervix and lie to me.
It was so disappointing because this GP has been my doctor since I was 16 and I’m 39 now, and he’s usually so understanding and amazing. I actually really value him, it was so saddening that he made me feel so crappy. I now consult a gyn for everything vagina/vulva related, he no longer does my Pap smears or examines me. He’s just my doctor for prescriptions, referrals and “my knee hurts” or “I have a UTI”. That’s it!
I'd argue that this is just as bad as comments posted on here too. It's dismissive, it's humiliating, and overall you flat out aren't believed. I'm sorry that was your experience.
Side note TWO VAGINAL DELIVERIES WITHOUT MEDS?!? You're a queen, holy smokes. That says a LOT that the endo pains were worse than delivering a child. This validation I think will help others too. Thank you for sharing.
Oh, thank you! Honestly, first one I waited too long to ask for drugs and by the time I wanted them, they wouldn’t have kicked in in time (argh!) and then the second one I decided I could do purely because of the first one. I ended up asking for pethidine at the end, but she was born a few minutes later before it kicked in!
TW!! It's my first time posting, hopefully it's okay, will remove if it's not.
One of the many times I visited my previous doctor to discuss the unbearing pain within my cycle and during sex, he went all out and said that it was due to me being SAed almost 10 years ago (when I was about 13!!!! Ffs) and that I had not psychologically healed from that which is what caused my pain and that I needed to get my shit together.
Plot twist, he had done surgery to remove 3 cysts on my ovaries just months before the SA. Now, 10 years later and with my diagnosis, turns out I might be infertile due to malpractice on his end during that surgery.
I hate that man and my new gyno hates him too.
Holy shit I'm so sorry. Thank you so much for sharing. I hate him too, did you ever report him for malpractice? If not, totally okay and understandable, I'm just curious.
How is it that they just make up diagnoses like that? How does he just guess that it was from being SA'ed? Like. No. Actually do your job and investigate the source of the pain.
TW one of my first OBGYN doctors practically assaulted me by forcing my Pap smear to be done. She threatened to take away my birth control if I didn't go forward with the smear. I've never been able to put in a tampon. She hardly shoved the speculum (it was a small pediatric one too) in me and I screamed and kicked so hard. She then takes it out and is like "oh you have vaginismus"
Yeah thanks for listening to me lady 🙄
Anyway, I'm sorry again what you went through and the infertility. My heart is with you 💛 thank you for sharing
Thank you✨
So I actually have my first follow up with the new gyno tomorrow and I guess we'll discuss if it is in fact due to malpractice, if it is, I will definitely see what I can do, I don't know much about the whole process in my country and it's a bit scary but I definitely feel that if it's the case I have to advocate for myself.
Right??? Huge prick!!!!
Omg I'm so sorry you experienced that, one would think that a female gyno would be a tad more delicate and understanding no? But turns out they are also part of the problem, hope you never have to experience that again😠
Thank you for answering and sharing as well, although it can be tough at times, it helps us to know we are not alone 💕
“I think this is just how you are and you need to find ways to cope and live with it.”
ETA special shout out to all the gastroenterologists who told me that “that’s not how the body works” when I explained I was bleeding rectally with ovulation and menstruation.
ME TOO! I had my colon removed and a bowel resection because my endo was imbedded into my colon. The gastroenterologists all told me I had endo before my several OBGYNs. Thank you for sharing.
"That's just how you are" what does that even mean. Human bodies are all the same in that something is wrong when we have pain... I'm so sorry.
And even if it is just how I am, we live in the modern world with medical solutions that can help! I’m thankful that to have found doctors who believe and are willing to help me. Turns out all my pelvic floor muscles are dysfunctional from excessive constant pain so even if I don’t have bowel endo, they are finding solutions for me. They don’t disregard what I say, even if my issue ends up not being direct endometriosis in that location.
We all are warriors having to deal with this.
I was told surgery was off the table until I lost 10% of my body weight, then when I saw an endo specialist, at the end of my first meeting with him when he confirmed I could get a laparoscopy, I said what about my weight…
He said WHAT ABOUT IT!!
I said what do you mean I was told by the other doctor who referred me that surgery was off the table until I lost 10% of my body weight, he said no that’s ridiculous, your quality of life is more important than losing weight.
He said the risks are minimal and he would be worried if I was much larger, but as I’m not, it’s not a concern…
I cried happy tears… surgery is on the 31st May, I am so excited…
He is also taking my fallopion tubes, because I said I wanted permanent sterilisation, all doctors since I was 18, have said no you haven’t had kids, or no you’re too young…
Thank you for sharing, I LOATHE doctors that blame weight first and foremost. I'm so so so happy you got a second opinion who listened to you and was willing to work with you not against you! Congrats on your surgery date!!! I hope it goes so well and you're free from the endo pain!
Wow! With every statement my face got redder and redder and tears of rage welled up in my eyes. The fucking AUDACITY! Who fucking raised these people?!
Same. It's the system. A trend I've seen on this reddit page is how common it is for doctors to tell us our unbearably excruciating agony is normal and then laugh at us or blame us for it. I think this helps to raise awareness too. I'm very humbled (idk if that's the word I want) to see people sharing and the compassion peer-to-peer. Thank you for your empathy and care for all of us. 💛
I had a gyno come in with two young students (I didn’t know would be there btw) my first time at this office. I was getting a pap and pelvic exam (that I didn’t know I was getting). She then tells me based on my symptoms that she did think I had endo then said “it’s not that bad, you’re not gonna die!” Then she did the pelvic exam in front of these two young students abruptly said “warm goo incoming!” And shoved a finger up in there as forcefully as she could…mean while I am on the table squirming in pain while this young male and young female are just standing there watching… it was mortifying and felt kind of degrading. She put me on bc and that bc messed me up (as most do I told her this) then she scolded me for not taking it the whole three months trial. She actually wanted to do a lap on me but she was so unfriendly and off putting I just didn’t trust her.
I hate when they try to make jokes in the pap and pelvic exams. It's so triggering for a lot of people and then they have the audacity to be dismissive and physically harmful. I had a similar experience with my vaginismus. I was physically unable to have the speculum in me because of how bad my vaginismus was, but my OBGYN was determined and tried to shove harder. It just made me kick and scream louder. Then she was like "huh. I think you have vaginismus. The pelvic walls are too tight for the speculum"
Meanwhile I'm crying and screaming in agony.
Thank you for sharing. Medical assault should be a category of complaint.
i was diagnosed with endo years ago after an endometrioma was found on CT, but i've never had a lap (partially because getting proper care where i live is next to impossible). i was going over my medical history during an appointment with a new doctor, and he asked if i'd had surgery - i said no, and then i literally watched him backspace and delete endo off my chart.
WHAT!!! He deleted endo just because you didn't have surgery?!? That's messed up. That's like deleting diabetes off your chart if you can't afford/don't have access to insulin. I'm so sorry. Thank you for sharing!
Wowww wtf?? What happened after that?
What happened to me feels somewhat similar. I had a laparoscopy but only when they wanted to check fallopian tubes when I wasn't getting pregnant. During the lap they also found some endometriosis so hey there you have it right? That's my diagnosis, after being dismissed as the doctor said I couldn't have it because he didn't see it on ultrasound or MRI 🙄 But they never actually put it in my medical history apart from the surgery report that wasn't really available for me to read... They also never mentioned it themselves when I finally had a follow up appointment two months later to discuss fertility treatment etc. I had to ask about the endo myself, but it was like they thought: well we removed it so now it's not a problem anymore?! Note that they were definitely not specialists and I'm certain there's still more endo that they didn't see, plus there's still the DIE in my uterosacral ligaments that they weren't able to remove... This was a year ago and I'm still really angry with these people.
that's genuinely insane, i'm so sorry that happened to you 😭
that doctor was a surgeon (doing a non-endo-related surgery on my uterus) so i'm not in his long term care, but it felt like gaslighting x10000. i'm pregnant right now so endo treatment is on hold, but hoping i can get back on waitlists to see a surgeon for a lap next year.
One Swedish gynecologist told me I was too sensitive when I had a lot of pain from her examination. She hurt me a lot. I also had no Endometrisosis according to her. I went to London for surgery with Peter Barton Smith and it took him 5 hours of excision to remove all the endo I had, and also removed a polyp from my uterus. I am so grateful for my surgery experience with him and that he listened to my symtoms and believed me, first time I was treated with respect by a gynecologist.
I'm so so so grateful you found a doctor who listened to you and that you were able to have a truthful, trustworthy relationship with. It makes having endo 1000x harder when you get doctors like your Swedish gyno.
🙄🤢 why are we just breeding material. It's like we aren't humans that have feelings, just a baby factory. I'm so sorry. Also incredibly inappropriate for any age, BUT 13?!??? WTF!!!
A few years ago I went to an OB for a skin condition on my upper thigh/groin, and asked if she thought it was just an ingrown hair or something else. She didn’t even look at it and asked, “Have you tried not shaving?” Obviously yes, I tried not shaving, and it had been a recurring issue for over 5 years. She then said “I don’t know, you should google it.” Then LEFT THE ROOM.
I found another doctor who then referred me to a dermatologist and was diagnosed with HS with a single look. It’s so frustrating because she could have sent me to a dermatologist then, saved me 2 more years of suffering, and prevented so much scarring in that area.
Excuse me?! Google it?! They literally are the same people that tell us "stop googling your symptoms." Did you ever report that other doctor for medical neglect or anything? That's wild that they were like ¯\_(ツ)_/¯ and left...
Right?? I’m still baffled because I’ve always been told NOT to do that! I never did report her, but the next time I went to that clinic she was no longer there… So hopefully that means nobody else had to deal with her!
My first gyno appointment/pelvic exam was last year. I went with my fiancée (I’m a lesbian). The exam was excruciating, I cried the entire time because of the pain. My doctor didn’t stop or ask me if I was okay, she just kept going without even talking to me of telling me what she was doing. My fiancée said she’s never seen me cry so much since she’s known me. And I’m a crybaby lol. At the end, she told me I was in pain because “I haven’t been with a man YET.” Yet?? I’m almost 26 and I’ve known that I’m gay since I was 11, clearly I’m not planning on ever being with a man. She also put in my notes that I’m “virginal with female relationship” even though I told her I’m sexually active. I got an transvaginal ultrasound a month later, in my notes she put that there was a Hyperechoic area with some internal vascularity found in my right adnexa. Never called for a follow up or anything so I messaged her and asked what it was. She said “it’s all very normal. Likely a benign ovarian cyst.” But my ovaries were not visualized. Other people have told me it isn’t normal but I’ve not been back to her, I’m trying to find a new doctor but frankly I’m too scared and traumatized from the experience to even have another exam. I still don’t know what they found on that ultrasound or what it means
Can you transfer your results to a new specialist when you find one? I went through so many doctors and it was incredibly traumatizing. Also how unprofessional all around. Assuming you've had penis sex, not following up, not checking on you during your pap exam, that's a huge mess of a doctor. I'm so sorry and I hear you. Those results sound intimidating. Take your time looking for a specialist. I'm happy that your fiancé was supporting you. I hope that she treats you well with this medical trauma. 💛
Thank you very much. That’s the plan :) I’m hoping I can find somebody good with trauma too, the thought of another pelvic exam gives me extreme anxiety/panic so it’d be nice to find a specialist who is helpful with that
After my diagnostic lap/ablation (diag Stage 3), I started having more pain and it was new. Spasms, jelly legs, squeezing pain, severe cramps when constipated. I had never had these prior to the surgery, just bladder symptoms. When I tried talk to my surgeon about it, she passed me off to a nutritionist who said to me "This pain is due to the amount of fat you have around your abdomen. Here are some exercises to try." Handed me a packet and shooed me out. I cried for days. I had been the same weight for at least 8 years at that point and knew it wasn't to blame.
Why do doctors always dismiss our pain and concerns off as a weight issue? I'm so sorry but I appreciate you sharing this. After having surgery, it's a lot harder, if not impossible, to exercise strenuously with endo. The only safe exercise I can do is swimming and walking. Stairs, crunches, weights, running, etc. I'm at risk of pain or my bladder falling down (had a hysterectomy so nothing is there to hold things up).
I'm glad that you know it's not you. They're just a bad doctor.
I had been waiting months to get a referral to a specialist. I went for an appointment with my primary care and told her I needed a referral to an endo specialist. She looked me in the eyes and refused because “endometriosis is not real. Some women just can’t handle period pain” and then she told me if I came back and paid for another appointment that she’d give me a referral then. I left and changed drs. Months later I had surgery and was diagnosed.
Happy ending, I'm glad to hear that you had surgery and got diagnosed by someone that believed you. For your pcp to tell you that endometriosis is not real, that's flat out malpractice. I'm so sorry she gaslit you. Your pain is real. Your diagnosis of endo is real. 💛 thank you for sharing
I had an amazing surgeon for my second endo surgery, but when he came in to our recovery room post-op (me and a friendo had surgery on the same day) he commented how both surgeries went well and how they were quite similar surgeries, but that the main difference was my 83kgs more weight. If I wasn’t so shocked and high on pain meds, I may have said something but yeah. Being called fat after a huge surgery sucks. Endo had taken my ability to move and exercise and it felt like I was being blamed for it. I have struggled with ED stuff in the past so this has all caused some relapses in my eating issues (bc I still can’t work out “vigorously” daily for 30 mins as my doc recommended).
Thats horrid. Endo causes so much damage to us in our everyday lives, that all affects our mobility, our bloating, our swelling, our diets, appearance, and overall self esteem.
Your weight is the last thing anyone should be concerned about after a procedure with endo. I'm so sorry but I appreciate you for sharing because I feel that too. I've had ED since I started my period at age 12. I think it was a coping mechanism for the pain that no one diagnosed until I was 25.
👏👏👏 I'm so glad you knew what you went through. Wanting to say STFU to doctors is so real.
Also literally regardless of the size of the cysts, they're going to hurt like a mf. Same with endo. Just because someone has one spot and isn't riddled doesn't mean it doesn't hurt just as much.
I'm proud of you for your self-compassion. Thank you for sharing!
My family doctor (GP? PCP? How is it called?) suggested I started taking Xanax because I'm just incredibly anxious. In her opinion my pain and pelvic tension and tummy problems are just anxiety. She basically said it's all in my head. So sick and tired, after almost 18 years of pain, of hearing this....
Get 5th, 6th, 7th opinions. I was told it was in my head too. Starting at 12 years old. My therapist a couple of months ago told me that I have medical ptsd and part of that is being not believed by doctors. I'm so so sorry you're experiencing this. I hope you find a doctor that listens and works with you vs against you
“Have you tried Ibuprofen?” - Euhm yes, for 12 years now, it has given me no pain relief and now I have gastritis….
And
“You have such a tiny cervix. It’s so tenie tiny” (said in a baby voice) - thanks a million, like what am I to do with that info? Am I supposed to exercise my cervix to make it bigger?!!!!! Also don’t talk to my vagina that way, not a pleasant thing to do with your bare ass on a table and a speculum up your hoohaa….
I had a consultant complain about the size of my chest, saying the size of it may make surgery more difficult because of the position they put you in. It was said in a way that made it clear she thought I'd ordered them this size so it was my fault, rather than just genetics.
Like, cool? I have fibrous dense breast tissue, they do not shrink when the rest of me does, so short of getting a reduction they're going to be the size they are, there's literally nothing I can do about that. It'd be handy if I could change the size of them at will Doc, but that's not how it works.
Ibuprofen and Tylenol have destroyed my body too from taking so much. I'm sorry to hear that you have gastritis because of it.
I made a similar comment on someone else's post but I absolutely despise doctors that crack jokes during paps, and I want to extend that to baby voices and cooing. "Awww so tiny!" Don't treat me like a kid and like that's a cute, not serious thing. It is serious and life impacting. Thank you for sharing.
We should make a red flag list for doctors. If they use baby talk at you 🚩 if they just prescribe you ibuprofen 🚩 if they joke about your body 🚩 if they want you to lose weight before a laparoscopy 🚩
After explaining to a new doc all my symptoms, she ordered a CT scan, and three ultrasounds that obviously showed nothing. I continued to tell her I suspected it was endo, SHE suggested that I needed to eat more yogurt as “I probably needed probiotics” and I’d feel better after that.
Oh my lord. Not the yogurt prescription 🚩 I'm so sorry that she was incompetent. I hope that you are able to find a new doctor that takes your concerns seriously. CT, MRI, and all my ultra sounds never showed any signs of endo. When I got my laparoscopy, they told me they would set me higher than stage 4 if they could. And my hysterectomy later on turned out to take 11 hours of picking it out. Thank you for sharing.
Um... that's an ideal solution but not realistic. "The less stress you have, the better. Quit everything!" Yeah okay.
I'm so sorry he was so incompetent🙄🤦♀️
He was terrible. My spouse went with me to that appointment and still randomly says, "I can't believe that doctor."
God, what an idiot. He literally did nothing for me and then wanted me to follow up in a month after doing his 'treatment.' Which was to get off my medications and eat more fiber. News alert, people go to specialists having done the basic shit already.
I have so many, but my most recent favorite:
I am prescribed a 5 mg dose of morphine pills for when I have bad pain episodes. However, picking up my last prescription I noticed the dosages were labelled different. One says 1-2 every 6 hours as needed and one says 1 pill every 4. So I asked the pharmacist what dosage I should follow as I’m incredibly scared of opioids.
This man dead ass looks me in the eye and tells me to take as much as I can handle and leaves it at that. I was like well should I pair my prescriptions with a naxolone kit to keep at home in case I overdose? Like Jesus Christ.
Holy shit. My mom went to pick up my prescription today and the pharmacist said that I was only given 2 pills of OxyContin and he upped it by more than double what the doctor prescribed. Then tells my mom "make sure she doesn't take too much" like bro you doubled my dosage...
I hope that your morphine pills helped you and don't cause any withdrawals or overdosing. That's horrifying 1-2 pills every 6 hour or 1 every 4 is VERY different, especially with opiates. Even pharmacists think they're god and can just tell us what to do, even having no background on why we are taking it. 🙄
TW: potential ED trigger
A few years back I (25 femme) went to a neurologist to see if my pain was due to nerve damage (it ended up being a combo of endo and hypermobility but besides the point). I asked him to run an EMG on me and he refused until i lost 50lbs. (i am 5'4 and at the time weighed probably 170. there was no way i was losing 50lbs). He said
"come back once you've lost 50lbs and we'll run the test, if you can't lose the weight come back and we'll try sewing your mouth shut."
i laugh at how ridiculous it was now, but at the time it was understandably hurtful and infuriating.
EXCUSE ME?!? That is incredibly disrespectful! Trying to see your mouth shut?!? Weight has nothing to do with these procedures, it's a lame excuse for them to not do work. I'm so so so sorry they said that to you. 💛 I hope you found a better professional or will find one that will work alongside you and your needs
20 babies later 🙄 surprise the endo is still there and you have 20 lives to raise and take care of. I've heard this response so much, I'm gonna start asking the docs that tell me that if they'll pay child support 💀
I was 23 and experiencing hypothyroidism, fibromyalgia, and endometriosis. Even with meds I was having the most difficult time in my life and then I hd a huge endo flare. I went to the Dr, had a lap to diagnose endo. Dr refused to stage me, but damage had been done. My uterus is now pulling to the left due to scar tissue and a ligament gluing tissue together. Implants found in my pouch of Douglas, ovarian cyst drained, ect. So, not a great year for me.
First thing out of tha jerks face in my post op appointment was "easiest treatment is pregnancy, you have a boyfriend right?"
....
Um no, I'm 23 and have been diagnosed with 3 chronic conditions in one year. We had just graduated college and hadn't gotten our "career" jobs yet....if we were gonna have kids we were gonna wait AT MINIMUM 3 years. We were poor, I was sick, and you want me to introduce a new life to this mess?....nah man.
Well of course I went way overboard and it was just a suggestion. Yeah guy, just a suggestion, sure it was. Fucking asshole.
Holy fuck. "Yeah pay for my child support, doc." Like no. Why are we just breeding mules in society?! I'm so sorry this happened. I hope you found better specialists that listen to you. What ended up happening?
I went on his second treatment plan which was a med that put me into perimenopause for a year. It was rough, I didn't respond well to the med. Made me super angry all the time.
On a positive note, my boyfriend and I got married three years later, had my daughter 3 years after that and then my son 2 years after. Still have endo tho....lol
2 things come to mind....
You're having sex wrong.
You have septicemia (He didn't tell me to go to the hospital, and I knew that wasn't it as I had no symptoms of that. He is about to get out of prison for malpractice)
HUH? "Having sex wrong" like... how would they know? And why is that the first thing that comes to mind for a doctor.
I'm glad he went to jail but also how many people did he hurt in his malpractice?
I'm happy you survived him. Thank you for sharing 💛
I was hospitalized two years ago for a huge cyst on my ovary and the general surgeon said oh she looks fine she doesn’t need surgery. Then the nurse told me that I had nothing to cry about. I was in severe pain and no one was telling me what was going on.
This is what I JUST experienced like less than 30 minutes ago. I went to the ER by ambulance because the pain was so horrible, I couldn't move and kept puking because of how much I was hurting. They said I had a 7cm cyst on my right ovary and then they speculated that it was twisted. They then told me that if I had a uterus and was fertile, they would have done urgent surgery on me. But because I didn't have a uterus and I'm infertile, it wasn't serious... meanwhile they were pumping me with so many different pain drugs. I was discharged because they felt that there was nothing they could do...
I'm so sorry but I really appreciate you sharing because I just experienced this similarly today. 💛
Had pain so severe from sex that I almost threw up and passed out. (I didn't only because I've passed out before and saw the signs) The doctor told me "It doesn't sound that bad, other people have it worse. Use a vibrator next time." ( I was.)
Had *severe* pain after endo surgery and was intolerant to the painkillers prescribed, ended up in the ER after a few days where they gave me painkillers to last one day. I called a clinic to get new meds and that doctor angrily asked me why I'm taking painkillers at all and why I went to the ER. He told me "Pain won't kill you, you know." And told me to stop taking ALL meds (including the prescribed tylenol, advil, naproxen) and to call him the next day. I did none of those things.
A doctor told me that "All the doctors around the world have decided we don't do surgery for endometriosis."
A doctor told me that if I won't get another IUD (I'd had a terrible experience with mine and had it removed after a year of trying) then my only other solution for endometriosis is a hysterectomy.
Had a doctor tell me "The best birth control is abstinence." when I wanted to switch mine.
I'm surely forgetting some.
> "All the doctors around the world have decided we don't do surgery for endometriosis."
When you're trying to get a diagnostic lap, it really does feel like this. Like they'll move heaven and earth, but will refuse to do a lap.
This physically made me sick and angry. I'm so sorry you faced these experiences. The pain meds comment from that doctor, that's absolutely fucked up. "Pain won't kill you" yes it can stfu. TW warning: suicide
As a result of my extreme pain, I had almost took my life. That is such a dangerous thing for your doctor to say to someone with extreme pain.
Thank you so much for sharing. I hope that you will find a medical team that hears you and actually works with you, not against you
Exactly!! Thank you for sharing also. Pain can and does lead to death- whether it is suicide or a shock to the system. He was such a condescending prick too.
I hope you aren't in so much pain anymore. 💕
Was That Vegan Teacher ™ your doctor?! I don't know how to respond to this. How in the world does endo relate to meat and byproduct intake?! Did you end up trying it??
Hell no! I reduce dairy and meat intake but I eat a lot of eggs, fish and some chicken and turkey and I personally believe that to be healthier for me. I take suplimements/ vitamins too! I listen to my body first. He looked as sickly as the Vegan Teacher actually... no surprise.
About 10 minutes before I went down for my lap my gynae came and tried to talk me out of the surgery and said “you know you don’t have any symptoms of endometriosis”. This was after 6 YEARS of me constantly telling him about my debilitating symptoms, pain so severe I was passing out and my legs were just giving out, massive amounts of rectal bleeding, hip pain so severe I couldn’t do anything but lie as still as possible and sob, periods that would last a minimum of 2 weeks, blacking out on the toilet because of how bad the pain of trying to have a bowel movement is, pain levels so severe that morphine wasn’t helping enough for me to function. I had a spinal collapse years prior to this, I had evidence that I knew what serious pain was, I had the nerves in my back compressed for 3 weeks causing permanent nerve damage, I had 2 discs pressing on my spinal cord for those 3 weeks and this doctor STILL implied I was just bad at dealing with minor pain. I should’ve slapped him.
Ah yes, because depression causes us physically debilitating pain in our pelvis every period cycle 🙄 I'm so sorry for your experience with their malpractice
"You should get pregnant and continue to have kids until you reach menopause" the same doctor also told me that "endometriosis is a working woman's disease and it wouldn't be a thing if you all got married and had kids"
"I think this is an issue with your pituitary gland." When I asked her if i should see an endocrinologist or a neurologist, she told me no and that "this is how your life will be."
My last gyno told me "you should do yoga" and then said he liked patients with autism idek where the last statement came from
Edit: i have autism and i still dont know why he said that
Uhhhhhhhh I don't know how to describe it but that whole encounter even in just a comment in reddit is a huge 🚩
"Do yoga, I like patients with autism" that's sketchy sounding. I'm so sorry.
Ugh. He was annoyed that I was there for help he gave me the “your pain can’t be that bad. Women all
Over have their periods and they function just fine. If you lost weight all your symptoms would disappear” I told him my weight had nothing to do with it. I’ve had my period since I was nine and dealing with this. He snapped at me and said “look you have had your period for a while now. I don’t understand why your not use to the symptoms by now” yup really helpful doctors visit…
I said it feels like there are bubbles popping in my uterus and she said “that’s not a thing”. I KNOW ITS NOT A THING IM JUST TELLING YOU WHAT IT FEELS LIKE
Another said that I would HAVE TO go on Lupron in order to get the lap done. This was maybe 4/5 years ago? Never went on it of course and waited YEARS to see a specialist and now my lap is in a month
the other week i was practically begging my doctor to check my hormonal levels, and not only did she refuse because im “too young so it’s probably fine” (im 22), but she also told me im just watching too much tiktok and she knows its been “popular on there right now” 😐
i only even use tiktok for watching edits and animal videos. but sure, it was that and not my exhaustive list of estrogen dominance symptoms lmfao
That's so aggravating. This is a great time to get your hormone levels checked. Doctor work for us and I think they forget that. I hope you're able to get another doctor's opinion or another specialist that believes you and listens to you.
Any doctor that tells patients to "stop googling symptoms" or "stop watching tik tok" is a red flag. They are making way too many assumptions off the bat. That shows me they are not trustworthy
One specialist last fall completely disregarded my abnormal symptoms and didn't do anything for me said not to worry about my appendix, it was a gut surgeon, turns out I needed my appendix out and a small portion of my colon, thankfully I met different professionals who listened and advocated for imaging. I already knew I had Endo but it had progressed over the course of several years.
In the ER at age ~16 the first time my cramps made me faint and vomit, the male nurse took me seriously, but as soon as the female doctor showed up she literally told me nothing was wrong and, "You're just growing up, sweetie.🥰" (I'd had my period for 4 years at that point, so that was a strange thing to say regardless, as if I wasn't used to it???)
I'd made a list of symptoms prior to coming, already had immense medical trauma, and the hospital was a last resort. She said it was all normal, come to find out much later that it was endo and a UTI.
Growing pains 💀yeah the only thing painfully growing is the tissue disease in our body that you're not looking at. It's strange that the female doctor was so dismissive but the male nurse was actually listening. Then again, I've had better luck with nurses than doctors.
I'm sorry that you had to find out way later the reason for the pain, vomiting and fainting. 💛 thank you for sharing.
My first lap was at 18. They didn’t find any endo but found ‘damage’ and everything inflamed. They never thought of looking at why. A few months later we learnt the issue when my appendix ruptured and the surgeon said it looked like it was ‘leaking’ for many months and causing lots of damage and I was days from turning septic.
... "oh the basement is flooding..." *never investigates the source* *house starts to fall apart*
"😲 oh no what happened!"
That's so stupid. I can't comprehend their thought process that led them NOT to investigate.... what the hell. I'm so sorry. What ended up happening?
I had a doctor ask what medications I was on in the ER and everytime i stated a medication he said “whats that for?” In a rude tone as if he l didnt want me on it, he later said “why do you have a heart monitor youre a healthy 22 year old girl” as if I hadnt been in the ER for my heart rate/POTS ??? After having a laparoscopy a month prior as well mind you
"Im taking these PRESCRIPTION MEDICATIONS for funsies because MY DOCTORS PRESCRIBED THEM to me because ¯\_(ツ)_/¯ "
What the fuck is wrong with doctors?! Don't act like you don't have my chart in front of your face, read it and come back to me. I'm so sorry. What an absolute prick.
"Do you have a partner? Oh you do? You should try to have a baby as soon as possible as it will cure the disease"
First of all, I was 19. Second, I'd been with my partner for 6 months. Third, maybe I didn't want children? Fourth, I did/do want children and never had/never will have them. Fifth, pregnancy is not a cure.
So, a bit of back story first, I drove my cousin to see her GP as she had a UTI. The GP starting going on about how she needed a chlamydia test and should book in for one. The urine test came back positive for a UTI and the GP said "oh, well you should be checking for chlamydia anyway."
So a few weeks later, I was at work and a client hit me in my lower abdomen. The following morning, I woke up to bleeding (I didn't have irregular bleeding at the time as it was well controlled by the combined contraceptive pill.) So I was a bit alarmed that I was hit in the abdomen hard enough that it caused bleeding.
I booked an urgent appointment to see a Doctor, and it turned out to be the GP that my cousin had seen. I explained the situation to her, and she said "I think we should test you for chlamydia". I told her that I didn't think it was necessary as I had an STI test four years prior which was clean, my husband's was also clean, and we are monogamous. She pushed for a chlamydia test.
The chlamydia test was negative, and the bleeding had stopped by the time the results had come back, so no further action was taken and I never did find out why a whack to the lower abdomen caused bleeding.
I also never found out why that doctor was so obsessed with diagnosing people with chlamydia either.
Malpractice. What the heck? After a hit like that, I feel like they should have done an ultrasound or a CT scan? Maybe even a transvaginal imaging? That could have been serious. I'm so sorry they were incompetent. That's so alarming
As we lay on the bathroom floor after vomiting from pain and having to call out of work for the second time this week because we can't move and the pain meds aren't touching it. Yeah... don't think about it 🙃
I'm so sorry that was a doctor's response... that's so stupid
I think I was 16 at the time and I went to a children’s ER for severe abdominal pain. After having my appendix and ovaries checked, they pulled my mom out of the room and basically said they need to test me for an STI and if I didn’t agree they wouldn’t treat me further. They also pressured me not tell my mom, probably because she’s a health care attorney and they can’t threaten not to treat me if I’m not tested for an STI. The whole experience was… shameful? I was released after seven hours with a diagnosis of “belly pain.”
That nurse really has no clue! I'm so sorry that happened to you 💔
A rheumatologist told me to lose weight and try yoga. That its also my fault I'm in pain due to multiple surgeries! He was such a jerk..
Some words that trigger me now is when I'm told to seek therapy! Seriously? It's on my medical chart that I have been in therapy going on 6 years almost.. but that doesn't matter right?
Right after my painful cystoscopy with my pants still off the doctor told me I must be confusing my period blood with my urine. He said I wasnt able to tell and to not come back for a follow up visit. I was 30 yrs old, clearly I knew the difference. It turned out that i had stage 4 endo on my ureter. That doctor was such a prick.
The list goes on and on.
"Yeeees, and we should probably try to find out \*why\*, should we not?"
It's like when bloods come back as "tell patient normal". That's lovely, we have found out some things it isn't, can we continue to look for what it might be? It's infuriating.
A medical professional I was seeing for pain told me I should have gotten pregnant to avoid my current situation. When I didn't react, they repeated the comment. I am child-free and very content with my decision but I was annoyed as hell.
To avoid?! Yeah because raising a whole ass child for 26 years is a great medicine for a disease with no cure 🙃 I'm so happy for you being content and child free. Doctors expect us to just keep popping out babies so we can avoid endo but like... it never goes away....
I went into my first OB appointment in a new town/state. This doctor was who everyone I knew in my town recommended. Upon the first five minutes of her walking in, she said after looking at my first lap surgery report that I was a “mess” and she wanted to make it clear that she wouldn’t be touching me (her exact words). Also she felt the need to emphasize that having this disease was not my fault just “bad luck”. Her assistant had set up the room for a pelvic exam and when I asked if I’d be having one she said, “I really don’t see the point in doing that today. Do you?” And she ushered me toward the exit door. Cried in my car and couldn’t even return to work because she made me feel so disgusting.
You're not alone. That happened to me today at the hospital. I was in the ER with a 7cm cyst rupture on my ovary and the doctors initially wanted to do surgery. But then they told me that I was too "medically complex" and "an enigma" and they didn't feel comfortable doing the surgery. Then they told me that they made calls to other hospitals and said the same thing. They ended up discharging me with 10/10 pain and told me "pain management" was the solution.
I hear your pain and I'm so so so sorry. It does feel humiliating and hopeless. It made me feel not human and gross. I'm so sorry but I appreciate you sharing because I really related to you and your experience. It makes me feel not alone. Thank you 💛🫶
That is so ridiculous they discharged you without actually fixing the problem. And if they can’t fix that problem they need to find someone who can because that’s basic patient care. I’m sorry you experienced this, I hope you find a doctor that truly cares. My current OB & oncologist made me feel heard and respected. I knew I was in the right hands when they said “whatever you want to do we’ll do it” after giving me all my options.
I’m currently recovering but I finally feel relief after many years of pain. I hope you find some relief and adequate care very soon 💛
"I don't know why you have pain. Some women just have more pain" after my most recent lap where he didn't find anything. I had Endo confirmed 10 years ago in my first lap..
His solution is an IUD (or trying yet another BC). I cry when I have exams because it is so painful. How would I manage an IUD??
Exactly my feelings on an IUD. Are you in any position to find a new doc? Don't cave into solutions, and trust your gut. If it doesn't feel right, don't do it, and hold your ground. An IUD would have probably caused me severe damage if I followed that solution before I got my hysterectomy. Stay strong my friend 💛🫶
No kidding, I'm afraid of most doctors too. Women's healthcare is bad in general, but it's 10x worse for black and indigenous women. I'm so sorry this was your experience and they just assumed you were active based on your skin.
I don't know why doctors are so quick to jump to conclusions about stds when we are presenting no symptoms other than pelvic or abdominal pain. And to automatically not believe people when they say they aren't active.
Also - I just had my cyst rupture yesterday morning and they told me the same thing, that I didn't need to take time off of work... yet they're prescribing me opiates. I'm so sorry that they didn't at least give you pain medication. That's so awful. I hope you found a new professional who listens to you 💛
Countless stories about what doctors have said to me as whole, but this is the only endo related one.
You know how doctors always say something like "and if the pain gets too bad, let us know"? I spent years not calling doctors about my pain levels because I had no real point of reference to know how bad was too bad.
Then I ended up in ED for three days for a 6mm kidney stone that did not pass on its own. I'd spent weeks up to that point just ignoring the pain because it felt "*almost* as bad as my typical period pains.
Next time I saw my male NP at my GP's office, he again said something about calling for bad pain. I explained to him about the kidney stone, then said "so how exactly will I know if it's *too* much pain?" Dude was thrown by that one and didn't really know what to tell me.
But that's when I started to realize what my pain tolerance is and began to mention my pains more to the doctors.
What we need is those electric shock things that pregnant wives put on their partners to "feel their pain of labor" or periods. I'm sure if you shocked that doctor with your Level 11 shock, he would have been on the floor peeing.
I'm so sorry. Were you ever able to find someone to get you a laparoscopy?
Right after sticking a speculum in my ass and me saying that this is an embarrassing and uncomfortable situation:
“Why is it embarrassing? It’s not embarrassing?” **in a patronizing tone**
And, I quote, “There’s nothing wrong, that’s just how God made you Princess”
His name was Dr. Sparkul ✨
🙄🤦♀️
Gynaecologist said “we’ve eliminated everything physical” in regard to what was causing the severe pain 6 weeks post op following a laparoscopy where they found endo but said it was only small amount and you wouldn’t get much pain from it.
She essentially eluded to the fact she thought it was all in my head.
Went to another doctor and they diagnosed severe adenomyosis 🙃
Lovely. Very helpful to "eliminate everything physical" and basically tell you to get out of your head. I'm so glad that you found another doctor who was able to diagnose you correctly. I hope that you are getting the care that you need now. That's so awful that the first doctor put you through all that mental gaslighting. 💛
I feel so bad for all of you. So many crappy drs. I was diagnosed in about 1987-I was 17 and never really had a bad experience except for not excising the lesions and lasering them so I had to keep having surgeries until I found a world renowned surgeon who took care of it finally. I had 5 surgeries and now in menopause. One bizarre situation, I was in constant pain for a month, I had surgery, woke up to the dr saying it was too complicated and she didn’t do anything. Had to go to Mayo Clinic to get it taken care of. Pain meds never helped and took so much ibuprofen that I go ulcers. Most of the time I would writhe in pain asking my bf/husband to knock me out. Of course he wouldn’t-dammit.😬
SOOO many to choose from! Let's see, a doctor prescribed me darvocet N for my painful cramps. And shocker, it did NOTHING for my pain.
But the kicker is when he sent me away with my script, he knew I was leaving for college in a month, and he actually encouraged me to DRINK ALCOHOL in college while on these meds. I'm not making this up. Yes a doctor encouraging an underage person to take a deadly cocktail of drugs. And let's not forget, how alcohol and endo are not a good mix to begin with. Wtf...
This same doctor refused to prescribe birth control pills for my suspected endo pain since he was a staunch Catholic doctor who my super religious mother required me to see while under her insurance plan. So instead he prescribed me a narcotic.
Not thinking to research this as Google was a new concept at the time, one Fri night in college, I took a dose of the darvocet n and had a drink with some friends and immediately felt ill effects from the mixture (heart palpitations, overall malaise, etc.) I knew something was wrong. I then realized that I could have died had I listened to this quack of a doctor and went on with my night.
He literally tried to kill you... I'm so glad you're here today because OMG that's so fucked up.
That there is malpractice big time. Someone else commented that their doctor prescribed alcohol basically too. And opiates.
Dr. Google is reliable, I don't care what doctors think. Dr. Google can and does save lives. I'm so so so glad that you were able to resist doctor's orders. It's so hard too as a young person because you see doctors as authority and to listen to them. Growing up for me was realizing that doctors don't know as much as we think. They know anatomy. That's it. Thank you for sharing your story. I feel like we need to write a book of essays on people's experiences. 😭
I had a male doctor recommend wine to me for my pain (vulvodynia), and refused to refer me because he said I’m a “good girl” and didn’t want to “expose me” to different doctors (since at the time I had only slept with one person). Suffice it to say I fired him after that and found a gyno who was actually willing to listen and help find the real problem of vulvodynia
Holy shit that's so creepy! "Good girl?!!" No doctor should ever be saying that. I'm worried about other patients this doctor had that didn't meet his standard of "good girl"
Excuse me?! Mine was the opposite. They prescribed me a billion different pain meds but refused for a long time to give me any lap or hysterectomy. That's outrageous they were so quick to just remove the organ without pain mitigation first. I'm so sorry
Not specific to endo but my IUD was recently lost in my uterus and my doctor told me more testing, like the pelvic x-ray suggested in the ultrasound report, wasn’t warranted. Also that radiology doesn’t understand why things get ordered.
This is the same doc though who told me getting an IUD would prevent endo…
8 years ago I had a doctor say endo? And then say nvm she’s too young for a lap or to do further testing for it. I was 12. Got diagnosed at 19. Could’ve saved me a lot of stress and agony
"it could be interstitial cystitis, go ahead and google that" -gyn in post-op follow up. Post op for a lap in which they didn't bother to biopsy me.
"It could be pelvic congestion syndrome which you'll have to google" - Internal medicine specialist who took the whole appointment to recall the name of the syndrome.
Long before those two, while I was finding a general physician. I tried one, and after he refused to refer me to a gynecologist, he made a hand motion towards the gym across the parking lot and said something along the lines of "that is a wonderful gym and most women find relief with exercise. A gym membership is something you really should consider, or the River valley" (our town has good trails)
He was pointing to a gym I'd had a membership with since it opened 6 or 7 years prior and frequented regularly. I could have out-run, out-bench, out leg press, out deadlift, out-sit up this doctor on the spot. But I have big tits and wide hips naturally so how could his ignorant ass possibly know I had an exercise routine? 🫨 I was in a point in my life where I was hell-bent on powering through the pain as so many advised to do. Im pretty sure my over zealous exercise routines in my early 20s CONTRIBUTED to my pain if anything, but thanks, DOC! 🫡
I’m not a religious person but had gone through so many gynos trying to understand my pain (“periods hurt!”) and a friend swore by a specific one who was quite religious. I went. They must have thought I was doctor shopping because instead of trying to help me figure out what was causing me to black out in pain they told me to “call the candyman” 🙄
Oh I got a go one!
Had check up about a week after full hysterectomy. Telling the GP (regular had been suspended for refusing to prescribe birth control) that I was feeling really good, happy, had such a reduction in pain. He; A White, mid aged man told me that any residual pain I might have in the next few weeks is likely the result of my mind processing the trauma of a DV relationship over a decade ago…
Excuse me? You mean to say if I have any post-op pain it must be from my womanly emotions and experience that I’ve been heavily treated for and worked through that you would have found in notes that are 10 years old and not having my ovary, tubes, cysts and uterus removed recently?
No way…
HUH?!?? You literally had a surgery... of course it's gonna be physical residual pain. Additionally, your brain will likely be focusing on rewiring that area because you are missing some organs 💀 (I say this because after 9 months from my hysterectomy, I had a ghost uterus in me. Like I hyper-felt like it was there. Weirdest tinge)
He's ridiculous I'm so sorry he said that. That's also dangerous for a doctor, who is not a mental health clinician, to be just assuming physical pain is ptsd related. wtf
Not technically endo-related but one time a doctor asked if I’m sexually active, to which I said yes. He asked if there was any possibility I could be pregnant, and I said no, I’m a lesbian. He then proceeds to waggle his eyebrows suggestively and say “well, sometimes lesbians like to sleep with men” with this nasty smirk. That was the last time I had a male doctor, and I never will again.
Currently trying to get a diagnosis but when I was in a lot of pain mid cycle and literally couldn’t stand straight, I had a nurse immediately say “We don’t prescribe opioids” (live in a city that has a really bad opioid crisis at the moment), and I was confosued because I was asking for a biopsy and ultrasound (neither of which I got because it wasn’t “necessary”) but I guess the $300 bill afterwards wasn’t necessary either 🙃
For real??? That's the first thing they said... I hate when doctors rule testing out as "unnecessary" they literally are even the ones paying for the bill. Just listen to us and give us the tests 😭
Also $300 for the visit they didn't do anything at? Real. I didn't have insurance for the second part of my endo journey and I'm pretty sure I spent like 8 months of rent on just a handful of appointments. I'm so sorry this happened.
Don't give up on finding a doctor that will listen to your concerns. It's exhausting but they are out there. It's 1000% okay to ask for referrals too.
At my 2 week post-op, my doctor recommended getting pregnant (and spending a year breast feeding lmao, as if everyone can do that) to stop symptoms. This was extremely tone deaf after I spent the entire summer worrying I was infertile after my ex of several years, who I thought I would spend the rest of my life with, gave me an STD.
Trauma informed doctors are so rare sometimes. Also wtf. Doc can pay for child support then if he's prescribing a literal child to our bodies like that 💀I'm so sorry this happened. I hope you were able to seek out another doctor that listened and actually was willing to work with you on solutions. 💛 thank you for sharing
I was called a whore at 16 years old, in front of my mother (who absolutely handled the situation appropriately), by a female gynecologist when we were first starting my endo journey. I ended up losing some body parts, and was not having sex at the time of the appointment, so that doctor was so far out of line she should be on Pluto.
She is absolutely responsible for my problems not getting treated in a timely manner, and directly contributed to the abuse I endured from my parents because of her fear mongering and slut shaming.
Before I knew what I had I was getting constant “UTIs” which I now know we’re just flare ups
I was in the hospital for one and the doctor came in asking me questions about my symptoms and the last one he asked was “well which way do you wipe?” I was mortified.
Whhhhhh... why do they think we are so dumb. I would have been mortified by that question too. I'm so sorry, did he at least give you proper treatment or did he dismiss your medical concerns?
I've been told it's normal I must have a low pain threshold, one saud hurry up and have a baby, one said its ibs and these are all doctors and just the tip of the iceberg.. ugh
I feel you. I've been told these same things from several doctors. We gotta write a book with these horror stories I swear 😭 thank you for sharing. And saying that's just the tip of the iceberg is REAL.
"I want to prescribe you medication." "I won't take medication if it will affect my hormones as I'm trying to balance them." "They're not hormonal pills." "What are they then?" "They cure endometriosis." After telling my gynae there's no cure he still tried to push me said medication. We went back and forth a few more times before he admitted they're hormone pills. The day my lap was confirmed I requested a referral to another hospital. Wasn't having someone who blatantly lied and was extremely unprofessional do any sort of surgery on me.
Got the good ol "youre just being dramatic/its because you have anxiety" for the first 19 years of my life by a rich male doctor who refused to do any actual tests until i got a female doctor and within weeks figured out that not only was my uterus malformed, its riddled with adenomyosis and ive also been intersex the whole time recieving the wrong hormones from my body and flaring up my symptoms tenfold. I love men! 😊😊😊😊😊❤️❤️❤️❤️❤️❤️
Incredible. The amount of malpractice you faced as a child into adulthood all to be met with someone that actually knows what to look for and gave you LITERAL life-changing news in just a few weeks of knowing you. I'm so sorry.
I went to the er (a crappy one but only one where I was living) before I was diagnosed and was in horrible pain. I had an iud at the time and thought that’s what it was. The er doctor told me “maybe I don’t know. You’ll have to see a gynecologist for that.” When it was 3am in a Friday. Idk like call one?? Apparently he couldn’t help me and sent me home with “idk.” The clinic there had a 3 month wait even if you were already a patient so I drove 3 hours to see my old obgyn to find out I had a hemorrhaging cyst. Great work from that er doctor having a CT scan of my abdomen but couldn’t tell me that.
Haven't really commented or written anything, so I don't know whether or not there needs to be a TW or not, so I apologize in advance.
I had just been taking into the ER after having an attempt, and I'm pretty foggy. I'm still not sure where I am completely, and this nurse comes up to me to take my blood, and I have an insanely huge fear of needles, so I started to freak out. She stopped, looked me dead in the eyes, and said to me that "it's just all in my head. I need to stop overreacting. " I ended up having 2 seizures partly because of fear of having to have blood taken but also because of what i had done but I obviously know that my fear is in my head, but in that situation, I feel it was very much the wrong choice for her to say that
Not nearly as bad as people will share I’m sure, but I had a doctor suggest a glass of wine for my pain. I told her I have a family history of addiction and she was like “well, it’s just a glass. It should be fine as long as you don’t make a habit.” YOU ARE TELLING ME TO MAKE A HABIT OF IT. Also I think a glass of wine will be quite insufficient and probably not a good thing to mix with NSAIDs????
WHAT?? Wine also causes bloating and discomfort, which can irritate endo symptoms. All alcohol does. That's so messed up. "A glass of wine a night" IS A HABIT. Also, wine isn't a pain killer??? The heck was this doctor on? I'm floored.
She said it was “a mild muscle relaxant.” But I don’t think that’s what you need when your cramps turn your legs into jello and your body flashes hot and cold and you’re afraid you might collapse waiting for the elevator to come down two flights.
Alcohol causes inflammation which is a major factor in so many forms of pain including endo?? Lol baffling. I wish I could say I never heard this advice before. I asked for help sleeping through the pain & got “a glass or two of wine before bed” despite family history of alcoholism 😩
How about instead of prescribing wine which will only lead to inflammation and in excess, a flare up. Why don't we prescribe the drugs that have been developed to treat this pain.
The sleep doctor told my mom the same thing despite her being on ambien
Ugh, I don’t get why people think this helps pain? I had endo pain while I was pregnant and my FILs girlfriend told me I should start drinking a glass of wine a night. This woman works in healthcare 😳
Dear lord
Honestly it annoys me so much that I need a script for painkillers that 5 years ago were over the counter (in my country) whereas I can walk into a bottle-o and grab enough alcohol to kill me. Or if I tried cannabis for pain relief then I’d be arrested and loose my job. Alcohol does so much more harm with less benefits
Luckily I have access to fully legal marijuana where I live. I can take tiny doses of gummies so I don’t get high but still get pain relief and anti inflammatory benefits.
I don’t know if it would be suitable for me and I’m not the person fighting for legalization but I do feel there are more dangerous things that the government lets us have. I understand people abuse opioids but some of us just are in pain. Lots of people abuse alcohol yet it’s perfectly legal for anyone over 18 here.
I’m hardly an evangelical of weed, but it is 100% less harmful than alcohol or opiates. I take like 1-2mg of THC at a time, usually with 10-20mg of CBD or other non psychoactive compounds. I don’t like being high generally, and in such low doses I don’t really feel anything except maybe a tiny bit of relaxed silliness.
I had a male doctor recommend wine to me for my pain (vulvodynia), and refused to refer me because he said I’m a “good girl” and didn’t want to “expose me” to different doctors (since at the time I had only slept with one person). Suffice it to say I fired him after that and found a gyno who was actually willing to listen and help find the real problem of vulvodynia
Ew! This is wrong on so many levels, but that last part 🤢 I don't "expose" myself to doctors, and I don't think anyone who would consider medical examinations to be equivalent to having been "exposed" to genitals should be a doctor. Yuck.
Right?!? I was shocked he said that. But I straight up was like no I want the referral and he said no. Also earlier than the above, I had told an NP sex was so painful my ex and I stopped having it and NP told me to “push past the pain, otherwise he would leave me”. I was like nope we’re in a loving and committed relationship and do other things instead.
I think we’d all end up with alcohol dependence if it was effective for the pain!
I have also been told this, and also by a female gynecologist.
I have had this said to me too! I wish I would have reported them but I was so much younger and naive
This is wild. What lazy "advice" my word! Especially since you were open with the doctor and they persist??
I had one nurse say that my symptoms are related to a STI - even after I had all tests came back negative. I said, I have been married with one partner for over 10 years - and she said, "well, men cheat and he will probably give you an STI."
OMG that's sickening. "Well men cheat" she was totally projecting her trauma on you. So inappropriate.
This was said to me when I was a VIRGIN teen when I started experiencing pain/symptoms! Was given a shot of antibiotics, a round of oral antibiotics, and weirdly enough no STD test 🤔
I had the same thing happen when I went to the emergency room for pain. The doctor told me I had pelvic inflammatory disease. I had just had my youngest 3 month before. I was also married and knew there was no way that’s what it was.
Yikes! Talk about crossing a line. How do you say something like that to a stranger??
My old doctor said the cure to my endometriosis was to just get pregnant again, cuz while pregnant the symptoms “subside”. Ok cool, so just be pregnant for the rest of my life I guess?
20 kids later 🙄 I swear that doctors don't understand how stupid that sounds. "Just get pregnant" as if it's going to the store and getting a jug of milk. Do they not realize that you have to deliver the baby? And then raise the baby for 26 years?!
Ya brb gonna tell my bandaid child that since they're born that now I'm in too much pain to cope....like how do they even expect this to be a solution it's insane to me. I had a doctor say some people feel better with pregnancy...I never even mentioned wanting to be pregnant, I was seeing her for chronic pain.
Conspiracy theory: Endo was created to ensure the Handmaid’s tale would take place bc we would all just have to keep being/getting pregnant to have relief of our symptoms 🤢
Why tf are Drs, particularly the male ones, obsessed with fertility and having more kids? I've had multiple male Drs say these kinds of things to me throughout my life.
Ooof this one is way too common. I've had it twice myself. My gyn's original plan, after he found out I am hetero and committed ), was to perform a lap right before my then boyfriend and I decided to start trying for kids. Then my bf and I could get busy as soon as possible after my recovery to increase my chances at pregnancy?? I had not even stated by this point if my boyfriend and I wanted kids or not (plot twist, we don't).
I was told this too by a male gynaecologist- go get pregnant and your symptoms will disappear! Went and paid privately to see an excellent female gynaecologist and found out I have a less than 1% chance of conceiving naturally. Funnily enough I’ve not gone back to him!
I had a doctor tell me this too
I had a doctor (GP) tell me there was no way I have endometriosis because I had a C-Section and they didn’t find it then (even though they weren’t looking for it, and just trying to get my baby out safely). I was officially diagnosed a few months later during a lap. I wrote a complaint to that doctor after.
Good on you sending that complaint. A C-section wouldn't see endo in depth either. The point of a laparoscopy is that they have cameras. C-section like you said is focused on the child. I'm so sorry your doctor was so dismissive. I feel like doctors forget that they technically work for us. 🙄
My c-section 2 months ago, and I had to fight to get them to tell me they found a new spot on my ovaries
Before I knew what was happening to me (and before I knew about Endo), I spent 3 days unable to move from the pain off the couch and this was after my period had ended so I was confused. I had a pap smear that was irregular recently before this and I was terrified I had cancer or something else. I called and messaged my gyno with anything to ease my pain and anxiety. I was taking 3 ibuprofen every 3 hours and it didn't touch the pain. Her nurse called back after 3 days and literally said "Dr. Soandso doesn't want to see you. She said take some ibuprofen and that should help. She'll see you at your next pap smear." I was absolutely devastated, I never cried so hard. I always say how grateful I am that I had such a large endometrioma and got diagnosed pretty quickly with Endo. Because I can't imagine people who go through this for years/decades and no one believes them. Edit: I wanted to add that I stuck with the same gyno this whole time for some reason and when they finally found the huge endometrioma, she really came in with her tail between her legs to "diagnose" me with endometriosis. That felt good.
I love that they finally diagnosed you but I absolutely despise that they were so dismissive of your symptoms to begin with. "See you at your next pap" THATS A WHOLE YEAR... I would have cried too being tossed like that 😧
-you’re crying alot (from being in pain so bad I thought I was dying) do you have a therapist ? -I’m not going to give you drugs -you’re choosing to suffer by not going on birth control -the first thing said to me was “I’m not doing surgery” -women go thru a lot of pain. It’s normal
Pain is most certainly not normal. Also how is it that doctors think that bandaid medicine like birth control or ibuprofen will resolve the issue? ALSO YOURE CRYING ALOT?! Bye. Of course we're crying because that's literally how 1. Bad the pain hurts and 2. How traumatizing these medical experiences are. Thank you for sharing. I'm so sorry these doctors gaslit you and dismissed you. You're not alone
Honestly, definitely not as bad as what’s been posted here (yikes you guys) but it’s more been attitudes that were the worst. I remember I told two ER nurses that I had two vaginal deliveries without pain meds (to explain that I’m not just a wimp) and that my endo pain was worse, they both laughed and said “I don’t think so.” I asked what I could do, answer was “take Panadol.” I said, “I already did that, it didn’t work. I wouldn’t be here if it did.” Response was repeated and dismissive. “…Just take Panadol.” Just remembered this one, it isn’t endo specific — but definitely a female health issue — I went to my doctor concerned that I had prolapsed, he examined me and yelled “argh! It’s all floppy and baggy!” I felt awful and ashamed but thought okay, I have an answer. He sent me to a gynaecologist who was dumbfounded and said I was completely normal. I didn’t believe her, had it checked twice more by two other doctors. First doctor had made me feel so gross that I couldn’t believe there wasn’t anything wrong.
“It’s all floppy and baggy” whaaaat. You found the Andrew Tate cult member doctor I guess.
LMAO truth on the Andrew Tate of a doctor. I like to think I would have kicked that guy in the face but realistically I'd be in shock that was even said to my face.
It would shock me into a state of paralysis 😂 Floppy and baggy- sir you are a doctor, please use the terms vaginal laxity and prolapse while you stare directly into my cervix and lie to me.
It was so disappointing because this GP has been my doctor since I was 16 and I’m 39 now, and he’s usually so understanding and amazing. I actually really value him, it was so saddening that he made me feel so crappy. I now consult a gyn for everything vagina/vulva related, he no longer does my Pap smears or examines me. He’s just my doctor for prescriptions, referrals and “my knee hurts” or “I have a UTI”. That’s it!
Oh my gosh you still see him. I hope he ate his words when he got the reports back from the professionals.
I'd argue that this is just as bad as comments posted on here too. It's dismissive, it's humiliating, and overall you flat out aren't believed. I'm sorry that was your experience. Side note TWO VAGINAL DELIVERIES WITHOUT MEDS?!? You're a queen, holy smokes. That says a LOT that the endo pains were worse than delivering a child. This validation I think will help others too. Thank you for sharing.
Oh, thank you! Honestly, first one I waited too long to ask for drugs and by the time I wanted them, they wouldn’t have kicked in in time (argh!) and then the second one I decided I could do purely because of the first one. I ended up asking for pethidine at the end, but she was born a few minutes later before it kicked in!
I mean esp the first one
TW!! It's my first time posting, hopefully it's okay, will remove if it's not. One of the many times I visited my previous doctor to discuss the unbearing pain within my cycle and during sex, he went all out and said that it was due to me being SAed almost 10 years ago (when I was about 13!!!! Ffs) and that I had not psychologically healed from that which is what caused my pain and that I needed to get my shit together. Plot twist, he had done surgery to remove 3 cysts on my ovaries just months before the SA. Now, 10 years later and with my diagnosis, turns out I might be infertile due to malpractice on his end during that surgery. I hate that man and my new gyno hates him too.
Holy shit I'm so sorry. Thank you so much for sharing. I hate him too, did you ever report him for malpractice? If not, totally okay and understandable, I'm just curious. How is it that they just make up diagnoses like that? How does he just guess that it was from being SA'ed? Like. No. Actually do your job and investigate the source of the pain. TW one of my first OBGYN doctors practically assaulted me by forcing my Pap smear to be done. She threatened to take away my birth control if I didn't go forward with the smear. I've never been able to put in a tampon. She hardly shoved the speculum (it was a small pediatric one too) in me and I screamed and kicked so hard. She then takes it out and is like "oh you have vaginismus" Yeah thanks for listening to me lady 🙄 Anyway, I'm sorry again what you went through and the infertility. My heart is with you 💛 thank you for sharing
Thank you✨ So I actually have my first follow up with the new gyno tomorrow and I guess we'll discuss if it is in fact due to malpractice, if it is, I will definitely see what I can do, I don't know much about the whole process in my country and it's a bit scary but I definitely feel that if it's the case I have to advocate for myself. Right??? Huge prick!!!! Omg I'm so sorry you experienced that, one would think that a female gyno would be a tad more delicate and understanding no? But turns out they are also part of the problem, hope you never have to experience that again😠 Thank you for answering and sharing as well, although it can be tough at times, it helps us to know we are not alone 💕
“I think this is just how you are and you need to find ways to cope and live with it.” ETA special shout out to all the gastroenterologists who told me that “that’s not how the body works” when I explained I was bleeding rectally with ovulation and menstruation.
ME TOO! I had my colon removed and a bowel resection because my endo was imbedded into my colon. The gastroenterologists all told me I had endo before my several OBGYNs. Thank you for sharing. "That's just how you are" what does that even mean. Human bodies are all the same in that something is wrong when we have pain... I'm so sorry.
And even if it is just how I am, we live in the modern world with medical solutions that can help! I’m thankful that to have found doctors who believe and are willing to help me. Turns out all my pelvic floor muscles are dysfunctional from excessive constant pain so even if I don’t have bowel endo, they are finding solutions for me. They don’t disregard what I say, even if my issue ends up not being direct endometriosis in that location. We all are warriors having to deal with this.
Um hrm thanks good to know
I was told surgery was off the table until I lost 10% of my body weight, then when I saw an endo specialist, at the end of my first meeting with him when he confirmed I could get a laparoscopy, I said what about my weight… He said WHAT ABOUT IT!! I said what do you mean I was told by the other doctor who referred me that surgery was off the table until I lost 10% of my body weight, he said no that’s ridiculous, your quality of life is more important than losing weight. He said the risks are minimal and he would be worried if I was much larger, but as I’m not, it’s not a concern… I cried happy tears… surgery is on the 31st May, I am so excited… He is also taking my fallopion tubes, because I said I wanted permanent sterilisation, all doctors since I was 18, have said no you haven’t had kids, or no you’re too young…
Thank you for sharing, I LOATHE doctors that blame weight first and foremost. I'm so so so happy you got a second opinion who listened to you and was willing to work with you not against you! Congrats on your surgery date!!! I hope it goes so well and you're free from the endo pain!
Wow! With every statement my face got redder and redder and tears of rage welled up in my eyes. The fucking AUDACITY! Who fucking raised these people?!
Same. It's the system. A trend I've seen on this reddit page is how common it is for doctors to tell us our unbearably excruciating agony is normal and then laugh at us or blame us for it. I think this helps to raise awareness too. I'm very humbled (idk if that's the word I want) to see people sharing and the compassion peer-to-peer. Thank you for your empathy and care for all of us. 💛
I had a gyno come in with two young students (I didn’t know would be there btw) my first time at this office. I was getting a pap and pelvic exam (that I didn’t know I was getting). She then tells me based on my symptoms that she did think I had endo then said “it’s not that bad, you’re not gonna die!” Then she did the pelvic exam in front of these two young students abruptly said “warm goo incoming!” And shoved a finger up in there as forcefully as she could…mean while I am on the table squirming in pain while this young male and young female are just standing there watching… it was mortifying and felt kind of degrading. She put me on bc and that bc messed me up (as most do I told her this) then she scolded me for not taking it the whole three months trial. She actually wanted to do a lap on me but she was so unfriendly and off putting I just didn’t trust her.
I hate when they try to make jokes in the pap and pelvic exams. It's so triggering for a lot of people and then they have the audacity to be dismissive and physically harmful. I had a similar experience with my vaginismus. I was physically unable to have the speculum in me because of how bad my vaginismus was, but my OBGYN was determined and tried to shove harder. It just made me kick and scream louder. Then she was like "huh. I think you have vaginismus. The pelvic walls are too tight for the speculum" Meanwhile I'm crying and screaming in agony. Thank you for sharing. Medical assault should be a category of complaint.
i was diagnosed with endo years ago after an endometrioma was found on CT, but i've never had a lap (partially because getting proper care where i live is next to impossible). i was going over my medical history during an appointment with a new doctor, and he asked if i'd had surgery - i said no, and then i literally watched him backspace and delete endo off my chart.
WHAT!!! He deleted endo just because you didn't have surgery?!? That's messed up. That's like deleting diabetes off your chart if you can't afford/don't have access to insulin. I'm so sorry. Thank you for sharing!
Wowww wtf?? What happened after that? What happened to me feels somewhat similar. I had a laparoscopy but only when they wanted to check fallopian tubes when I wasn't getting pregnant. During the lap they also found some endometriosis so hey there you have it right? That's my diagnosis, after being dismissed as the doctor said I couldn't have it because he didn't see it on ultrasound or MRI 🙄 But they never actually put it in my medical history apart from the surgery report that wasn't really available for me to read... They also never mentioned it themselves when I finally had a follow up appointment two months later to discuss fertility treatment etc. I had to ask about the endo myself, but it was like they thought: well we removed it so now it's not a problem anymore?! Note that they were definitely not specialists and I'm certain there's still more endo that they didn't see, plus there's still the DIE in my uterosacral ligaments that they weren't able to remove... This was a year ago and I'm still really angry with these people.
that's genuinely insane, i'm so sorry that happened to you 😭 that doctor was a surgeon (doing a non-endo-related surgery on my uterus) so i'm not in his long term care, but it felt like gaslighting x10000. i'm pregnant right now so endo treatment is on hold, but hoping i can get back on waitlists to see a surgeon for a lap next year.
One Swedish gynecologist told me I was too sensitive when I had a lot of pain from her examination. She hurt me a lot. I also had no Endometrisosis according to her. I went to London for surgery with Peter Barton Smith and it took him 5 hours of excision to remove all the endo I had, and also removed a polyp from my uterus. I am so grateful for my surgery experience with him and that he listened to my symtoms and believed me, first time I was treated with respect by a gynecologist.
I'm so so so grateful you found a doctor who listened to you and that you were able to have a truthful, trustworthy relationship with. It makes having endo 1000x harder when you get doctors like your Swedish gyno.
13 in the ER for a baseball-sized ovarian cyst (which turned out to be an endometrioma). “Well at least you’ll be fine with childbirth pain!”
🙄🤢 why are we just breeding material. It's like we aren't humans that have feelings, just a baby factory. I'm so sorry. Also incredibly inappropriate for any age, BUT 13?!??? WTF!!!
A few years ago I went to an OB for a skin condition on my upper thigh/groin, and asked if she thought it was just an ingrown hair or something else. She didn’t even look at it and asked, “Have you tried not shaving?” Obviously yes, I tried not shaving, and it had been a recurring issue for over 5 years. She then said “I don’t know, you should google it.” Then LEFT THE ROOM. I found another doctor who then referred me to a dermatologist and was diagnosed with HS with a single look. It’s so frustrating because she could have sent me to a dermatologist then, saved me 2 more years of suffering, and prevented so much scarring in that area.
Excuse me?! Google it?! They literally are the same people that tell us "stop googling your symptoms." Did you ever report that other doctor for medical neglect or anything? That's wild that they were like ¯\_(ツ)_/¯ and left...
Right?? I’m still baffled because I’ve always been told NOT to do that! I never did report her, but the next time I went to that clinic she was no longer there… So hopefully that means nobody else had to deal with her!
My first gyno appointment/pelvic exam was last year. I went with my fiancée (I’m a lesbian). The exam was excruciating, I cried the entire time because of the pain. My doctor didn’t stop or ask me if I was okay, she just kept going without even talking to me of telling me what she was doing. My fiancée said she’s never seen me cry so much since she’s known me. And I’m a crybaby lol. At the end, she told me I was in pain because “I haven’t been with a man YET.” Yet?? I’m almost 26 and I’ve known that I’m gay since I was 11, clearly I’m not planning on ever being with a man. She also put in my notes that I’m “virginal with female relationship” even though I told her I’m sexually active. I got an transvaginal ultrasound a month later, in my notes she put that there was a Hyperechoic area with some internal vascularity found in my right adnexa. Never called for a follow up or anything so I messaged her and asked what it was. She said “it’s all very normal. Likely a benign ovarian cyst.” But my ovaries were not visualized. Other people have told me it isn’t normal but I’ve not been back to her, I’m trying to find a new doctor but frankly I’m too scared and traumatized from the experience to even have another exam. I still don’t know what they found on that ultrasound or what it means
Can you transfer your results to a new specialist when you find one? I went through so many doctors and it was incredibly traumatizing. Also how unprofessional all around. Assuming you've had penis sex, not following up, not checking on you during your pap exam, that's a huge mess of a doctor. I'm so sorry and I hear you. Those results sound intimidating. Take your time looking for a specialist. I'm happy that your fiancé was supporting you. I hope that she treats you well with this medical trauma. 💛
Thank you very much. That’s the plan :) I’m hoping I can find somebody good with trauma too, the thought of another pelvic exam gives me extreme anxiety/panic so it’d be nice to find a specialist who is helpful with that
After my diagnostic lap/ablation (diag Stage 3), I started having more pain and it was new. Spasms, jelly legs, squeezing pain, severe cramps when constipated. I had never had these prior to the surgery, just bladder symptoms. When I tried talk to my surgeon about it, she passed me off to a nutritionist who said to me "This pain is due to the amount of fat you have around your abdomen. Here are some exercises to try." Handed me a packet and shooed me out. I cried for days. I had been the same weight for at least 8 years at that point and knew it wasn't to blame.
This thread is making me want to commit atrocities. What a terrible terrible and disgraceful doctor.
Why do doctors always dismiss our pain and concerns off as a weight issue? I'm so sorry but I appreciate you sharing this. After having surgery, it's a lot harder, if not impossible, to exercise strenuously with endo. The only safe exercise I can do is swimming and walking. Stairs, crunches, weights, running, etc. I'm at risk of pain or my bladder falling down (had a hysterectomy so nothing is there to hold things up). I'm glad that you know it's not you. They're just a bad doctor.
I had been waiting months to get a referral to a specialist. I went for an appointment with my primary care and told her I needed a referral to an endo specialist. She looked me in the eyes and refused because “endometriosis is not real. Some women just can’t handle period pain” and then she told me if I came back and paid for another appointment that she’d give me a referral then. I left and changed drs. Months later I had surgery and was diagnosed.
Happy ending, I'm glad to hear that you had surgery and got diagnosed by someone that believed you. For your pcp to tell you that endometriosis is not real, that's flat out malpractice. I'm so sorry she gaslit you. Your pain is real. Your diagnosis of endo is real. 💛 thank you for sharing
I had an amazing surgeon for my second endo surgery, but when he came in to our recovery room post-op (me and a friendo had surgery on the same day) he commented how both surgeries went well and how they were quite similar surgeries, but that the main difference was my 83kgs more weight. If I wasn’t so shocked and high on pain meds, I may have said something but yeah. Being called fat after a huge surgery sucks. Endo had taken my ability to move and exercise and it felt like I was being blamed for it. I have struggled with ED stuff in the past so this has all caused some relapses in my eating issues (bc I still can’t work out “vigorously” daily for 30 mins as my doc recommended).
Thats horrid. Endo causes so much damage to us in our everyday lives, that all affects our mobility, our bloating, our swelling, our diets, appearance, and overall self esteem. Your weight is the last thing anyone should be concerned about after a procedure with endo. I'm so sorry but I appreciate you for sharing because I feel that too. I've had ED since I started my period at age 12. I think it was a coping mechanism for the pain that no one diagnosed until I was 25.
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👏👏👏 I'm so glad you knew what you went through. Wanting to say STFU to doctors is so real. Also literally regardless of the size of the cysts, they're going to hurt like a mf. Same with endo. Just because someone has one spot and isn't riddled doesn't mean it doesn't hurt just as much. I'm proud of you for your self-compassion. Thank you for sharing!
My family doctor (GP? PCP? How is it called?) suggested I started taking Xanax because I'm just incredibly anxious. In her opinion my pain and pelvic tension and tummy problems are just anxiety. She basically said it's all in my head. So sick and tired, after almost 18 years of pain, of hearing this....
Get 5th, 6th, 7th opinions. I was told it was in my head too. Starting at 12 years old. My therapist a couple of months ago told me that I have medical ptsd and part of that is being not believed by doctors. I'm so so sorry you're experiencing this. I hope you find a doctor that listens and works with you vs against you
“Have you tried Ibuprofen?” - Euhm yes, for 12 years now, it has given me no pain relief and now I have gastritis…. And “You have such a tiny cervix. It’s so tenie tiny” (said in a baby voice) - thanks a million, like what am I to do with that info? Am I supposed to exercise my cervix to make it bigger?!!!!! Also don’t talk to my vagina that way, not a pleasant thing to do with your bare ass on a table and a speculum up your hoohaa….
I had a consultant complain about the size of my chest, saying the size of it may make surgery more difficult because of the position they put you in. It was said in a way that made it clear she thought I'd ordered them this size so it was my fault, rather than just genetics. Like, cool? I have fibrous dense breast tissue, they do not shrink when the rest of me does, so short of getting a reduction they're going to be the size they are, there's literally nothing I can do about that. It'd be handy if I could change the size of them at will Doc, but that's not how it works.
Ibuprofen and Tylenol have destroyed my body too from taking so much. I'm sorry to hear that you have gastritis because of it. I made a similar comment on someone else's post but I absolutely despise doctors that crack jokes during paps, and I want to extend that to baby voices and cooing. "Awww so tiny!" Don't treat me like a kid and like that's a cute, not serious thing. It is serious and life impacting. Thank you for sharing. We should make a red flag list for doctors. If they use baby talk at you 🚩 if they just prescribe you ibuprofen 🚩 if they joke about your body 🚩 if they want you to lose weight before a laparoscopy 🚩
After explaining to a new doc all my symptoms, she ordered a CT scan, and three ultrasounds that obviously showed nothing. I continued to tell her I suspected it was endo, SHE suggested that I needed to eat more yogurt as “I probably needed probiotics” and I’d feel better after that.
Oh my lord. Not the yogurt prescription 🚩 I'm so sorry that she was incompetent. I hope that you are able to find a new doctor that takes your concerns seriously. CT, MRI, and all my ultra sounds never showed any signs of endo. When I got my laparoscopy, they told me they would set me higher than stage 4 if they could. And my hysterectomy later on turned out to take 11 hours of picking it out. Thank you for sharing.
Saw a gastrointerologist that said, "The less medicine, the better. Get off everything!" as he was talking out of the room.
Um... that's an ideal solution but not realistic. "The less stress you have, the better. Quit everything!" Yeah okay. I'm so sorry he was so incompetent🙄🤦♀️
He was terrible. My spouse went with me to that appointment and still randomly says, "I can't believe that doctor." God, what an idiot. He literally did nothing for me and then wanted me to follow up in a month after doing his 'treatment.' Which was to get off my medications and eat more fiber. News alert, people go to specialists having done the basic shit already.
I have so many, but my most recent favorite: I am prescribed a 5 mg dose of morphine pills for when I have bad pain episodes. However, picking up my last prescription I noticed the dosages were labelled different. One says 1-2 every 6 hours as needed and one says 1 pill every 4. So I asked the pharmacist what dosage I should follow as I’m incredibly scared of opioids. This man dead ass looks me in the eye and tells me to take as much as I can handle and leaves it at that. I was like well should I pair my prescriptions with a naxolone kit to keep at home in case I overdose? Like Jesus Christ.
Holy shit. My mom went to pick up my prescription today and the pharmacist said that I was only given 2 pills of OxyContin and he upped it by more than double what the doctor prescribed. Then tells my mom "make sure she doesn't take too much" like bro you doubled my dosage... I hope that your morphine pills helped you and don't cause any withdrawals or overdosing. That's horrifying 1-2 pills every 6 hour or 1 every 4 is VERY different, especially with opiates. Even pharmacists think they're god and can just tell us what to do, even having no background on why we are taking it. 🙄
how can the pharmacist change the quantity?? i thought it was only up to the doctor
TW: potential ED trigger A few years back I (25 femme) went to a neurologist to see if my pain was due to nerve damage (it ended up being a combo of endo and hypermobility but besides the point). I asked him to run an EMG on me and he refused until i lost 50lbs. (i am 5'4 and at the time weighed probably 170. there was no way i was losing 50lbs). He said "come back once you've lost 50lbs and we'll run the test, if you can't lose the weight come back and we'll try sewing your mouth shut." i laugh at how ridiculous it was now, but at the time it was understandably hurtful and infuriating.
EXCUSE ME?!? That is incredibly disrespectful! Trying to see your mouth shut?!? Weight has nothing to do with these procedures, it's a lame excuse for them to not do work. I'm so so so sorry they said that to you. 💛 I hope you found a better professional or will find one that will work alongside you and your needs
“Just get pregnant and your endo will go away.” 🙄 -a fertility dr
20 babies later 🙄 surprise the endo is still there and you have 20 lives to raise and take care of. I've heard this response so much, I'm gonna start asking the docs that tell me that if they'll pay child support 💀
I was 23 and experiencing hypothyroidism, fibromyalgia, and endometriosis. Even with meds I was having the most difficult time in my life and then I hd a huge endo flare. I went to the Dr, had a lap to diagnose endo. Dr refused to stage me, but damage had been done. My uterus is now pulling to the left due to scar tissue and a ligament gluing tissue together. Implants found in my pouch of Douglas, ovarian cyst drained, ect. So, not a great year for me. First thing out of tha jerks face in my post op appointment was "easiest treatment is pregnancy, you have a boyfriend right?" .... Um no, I'm 23 and have been diagnosed with 3 chronic conditions in one year. We had just graduated college and hadn't gotten our "career" jobs yet....if we were gonna have kids we were gonna wait AT MINIMUM 3 years. We were poor, I was sick, and you want me to introduce a new life to this mess?....nah man. Well of course I went way overboard and it was just a suggestion. Yeah guy, just a suggestion, sure it was. Fucking asshole.
Holy fuck. "Yeah pay for my child support, doc." Like no. Why are we just breeding mules in society?! I'm so sorry this happened. I hope you found better specialists that listen to you. What ended up happening?
I went on his second treatment plan which was a med that put me into perimenopause for a year. It was rough, I didn't respond well to the med. Made me super angry all the time. On a positive note, my boyfriend and I got married three years later, had my daughter 3 years after that and then my son 2 years after. Still have endo tho....lol
2 things come to mind.... You're having sex wrong. You have septicemia (He didn't tell me to go to the hospital, and I knew that wasn't it as I had no symptoms of that. He is about to get out of prison for malpractice)
HUH? "Having sex wrong" like... how would they know? And why is that the first thing that comes to mind for a doctor. I'm glad he went to jail but also how many people did he hurt in his malpractice? I'm happy you survived him. Thank you for sharing 💛
I asked them how they have sex because I thought it was he puts his penis in my vagina and moves in and out until we finish
I was hospitalized two years ago for a huge cyst on my ovary and the general surgeon said oh she looks fine she doesn’t need surgery. Then the nurse told me that I had nothing to cry about. I was in severe pain and no one was telling me what was going on.
This is what I JUST experienced like less than 30 minutes ago. I went to the ER by ambulance because the pain was so horrible, I couldn't move and kept puking because of how much I was hurting. They said I had a 7cm cyst on my right ovary and then they speculated that it was twisted. They then told me that if I had a uterus and was fertile, they would have done urgent surgery on me. But because I didn't have a uterus and I'm infertile, it wasn't serious... meanwhile they were pumping me with so many different pain drugs. I was discharged because they felt that there was nothing they could do... I'm so sorry but I really appreciate you sharing because I just experienced this similarly today. 💛
Had pain so severe from sex that I almost threw up and passed out. (I didn't only because I've passed out before and saw the signs) The doctor told me "It doesn't sound that bad, other people have it worse. Use a vibrator next time." ( I was.) Had *severe* pain after endo surgery and was intolerant to the painkillers prescribed, ended up in the ER after a few days where they gave me painkillers to last one day. I called a clinic to get new meds and that doctor angrily asked me why I'm taking painkillers at all and why I went to the ER. He told me "Pain won't kill you, you know." And told me to stop taking ALL meds (including the prescribed tylenol, advil, naproxen) and to call him the next day. I did none of those things. A doctor told me that "All the doctors around the world have decided we don't do surgery for endometriosis." A doctor told me that if I won't get another IUD (I'd had a terrible experience with mine and had it removed after a year of trying) then my only other solution for endometriosis is a hysterectomy. Had a doctor tell me "The best birth control is abstinence." when I wanted to switch mine. I'm surely forgetting some.
> "All the doctors around the world have decided we don't do surgery for endometriosis." When you're trying to get a diagnostic lap, it really does feel like this. Like they'll move heaven and earth, but will refuse to do a lap.
This physically made me sick and angry. I'm so sorry you faced these experiences. The pain meds comment from that doctor, that's absolutely fucked up. "Pain won't kill you" yes it can stfu. TW warning: suicide As a result of my extreme pain, I had almost took my life. That is such a dangerous thing for your doctor to say to someone with extreme pain. Thank you so much for sharing. I hope that you will find a medical team that hears you and actually works with you, not against you
Exactly!! Thank you for sharing also. Pain can and does lead to death- whether it is suicide or a shock to the system. He was such a condescending prick too. I hope you aren't in so much pain anymore. 💕
When diagnosed with stage 4 endometriosis I was asked to go on a vegan diet.
Was That Vegan Teacher ™ your doctor?! I don't know how to respond to this. How in the world does endo relate to meat and byproduct intake?! Did you end up trying it??
Hell no! I reduce dairy and meat intake but I eat a lot of eggs, fish and some chicken and turkey and I personally believe that to be healthier for me. I take suplimements/ vitamins too! I listen to my body first. He looked as sickly as the Vegan Teacher actually... no surprise.
About 10 minutes before I went down for my lap my gynae came and tried to talk me out of the surgery and said “you know you don’t have any symptoms of endometriosis”. This was after 6 YEARS of me constantly telling him about my debilitating symptoms, pain so severe I was passing out and my legs were just giving out, massive amounts of rectal bleeding, hip pain so severe I couldn’t do anything but lie as still as possible and sob, periods that would last a minimum of 2 weeks, blacking out on the toilet because of how bad the pain of trying to have a bowel movement is, pain levels so severe that morphine wasn’t helping enough for me to function. I had a spinal collapse years prior to this, I had evidence that I knew what serious pain was, I had the nerves in my back compressed for 3 weeks causing permanent nerve damage, I had 2 discs pressing on my spinal cord for those 3 weeks and this doctor STILL implied I was just bad at dealing with minor pain. I should’ve slapped him.
“Maybe you’re just depressed. Let’s try depression medication” when I was already on an anti-depressant, and it showed in my chart 🙃
Ah yes, because depression causes us physically debilitating pain in our pelvis every period cycle 🙄 I'm so sorry for your experience with their malpractice
"You should get pregnant and continue to have kids until you reach menopause" the same doctor also told me that "endometriosis is a working woman's disease and it wouldn't be a thing if you all got married and had kids" "I think this is an issue with your pituitary gland." When I asked her if i should see an endocrinologist or a neurologist, she told me no and that "this is how your life will be."
Oh my gosh this makes me want to punch these people in the face!
My last gyno told me "you should do yoga" and then said he liked patients with autism idek where the last statement came from Edit: i have autism and i still dont know why he said that
Uhhhhhhhh I don't know how to describe it but that whole encounter even in just a comment in reddit is a huge 🚩 "Do yoga, I like patients with autism" that's sketchy sounding. I'm so sorry.
Ugh. He was annoyed that I was there for help he gave me the “your pain can’t be that bad. Women all Over have their periods and they function just fine. If you lost weight all your symptoms would disappear” I told him my weight had nothing to do with it. I’ve had my period since I was nine and dealing with this. He snapped at me and said “look you have had your period for a while now. I don’t understand why your not use to the symptoms by now” yup really helpful doctors visit…
I said it feels like there are bubbles popping in my uterus and she said “that’s not a thing”. I KNOW ITS NOT A THING IM JUST TELLING YOU WHAT IT FEELS LIKE Another said that I would HAVE TO go on Lupron in order to get the lap done. This was maybe 4/5 years ago? Never went on it of course and waited YEARS to see a specialist and now my lap is in a month
the other week i was practically begging my doctor to check my hormonal levels, and not only did she refuse because im “too young so it’s probably fine” (im 22), but she also told me im just watching too much tiktok and she knows its been “popular on there right now” 😐 i only even use tiktok for watching edits and animal videos. but sure, it was that and not my exhaustive list of estrogen dominance symptoms lmfao
That's so aggravating. This is a great time to get your hormone levels checked. Doctor work for us and I think they forget that. I hope you're able to get another doctor's opinion or another specialist that believes you and listens to you. Any doctor that tells patients to "stop googling symptoms" or "stop watching tik tok" is a red flag. They are making way too many assumptions off the bat. That shows me they are not trustworthy
One specialist last fall completely disregarded my abnormal symptoms and didn't do anything for me said not to worry about my appendix, it was a gut surgeon, turns out I needed my appendix out and a small portion of my colon, thankfully I met different professionals who listened and advocated for imaging. I already knew I had Endo but it had progressed over the course of several years.
In the ER at age ~16 the first time my cramps made me faint and vomit, the male nurse took me seriously, but as soon as the female doctor showed up she literally told me nothing was wrong and, "You're just growing up, sweetie.🥰" (I'd had my period for 4 years at that point, so that was a strange thing to say regardless, as if I wasn't used to it???) I'd made a list of symptoms prior to coming, already had immense medical trauma, and the hospital was a last resort. She said it was all normal, come to find out much later that it was endo and a UTI.
Growing pains 💀yeah the only thing painfully growing is the tissue disease in our body that you're not looking at. It's strange that the female doctor was so dismissive but the male nurse was actually listening. Then again, I've had better luck with nurses than doctors. I'm sorry that you had to find out way later the reason for the pain, vomiting and fainting. 💛 thank you for sharing.
My first lap was at 18. They didn’t find any endo but found ‘damage’ and everything inflamed. They never thought of looking at why. A few months later we learnt the issue when my appendix ruptured and the surgeon said it looked like it was ‘leaking’ for many months and causing lots of damage and I was days from turning septic.
... "oh the basement is flooding..." *never investigates the source* *house starts to fall apart* "😲 oh no what happened!" That's so stupid. I can't comprehend their thought process that led them NOT to investigate.... what the hell. I'm so sorry. What ended up happening?
I had my appendix removed and a IV antibiotics etc. I was young and bounced back fairly quickly.
I had a doctor ask what medications I was on in the ER and everytime i stated a medication he said “whats that for?” In a rude tone as if he l didnt want me on it, he later said “why do you have a heart monitor youre a healthy 22 year old girl” as if I hadnt been in the ER for my heart rate/POTS ??? After having a laparoscopy a month prior as well mind you
"Why do you have a heart monitor....?" "I thought it would be a fun thing to do.. why do you fucking think??"
"Im taking these PRESCRIPTION MEDICATIONS for funsies because MY DOCTORS PRESCRIBED THEM to me because ¯\_(ツ)_/¯ " What the fuck is wrong with doctors?! Don't act like you don't have my chart in front of your face, read it and come back to me. I'm so sorry. What an absolute prick.
"Do you have a partner? Oh you do? You should try to have a baby as soon as possible as it will cure the disease" First of all, I was 19. Second, I'd been with my partner for 6 months. Third, maybe I didn't want children? Fourth, I did/do want children and never had/never will have them. Fifth, pregnancy is not a cure.
A doctor told me to get pregnant. Like sir, no thanks?
So, a bit of back story first, I drove my cousin to see her GP as she had a UTI. The GP starting going on about how she needed a chlamydia test and should book in for one. The urine test came back positive for a UTI and the GP said "oh, well you should be checking for chlamydia anyway." So a few weeks later, I was at work and a client hit me in my lower abdomen. The following morning, I woke up to bleeding (I didn't have irregular bleeding at the time as it was well controlled by the combined contraceptive pill.) So I was a bit alarmed that I was hit in the abdomen hard enough that it caused bleeding. I booked an urgent appointment to see a Doctor, and it turned out to be the GP that my cousin had seen. I explained the situation to her, and she said "I think we should test you for chlamydia". I told her that I didn't think it was necessary as I had an STI test four years prior which was clean, my husband's was also clean, and we are monogamous. She pushed for a chlamydia test. The chlamydia test was negative, and the bleeding had stopped by the time the results had come back, so no further action was taken and I never did find out why a whack to the lower abdomen caused bleeding. I also never found out why that doctor was so obsessed with diagnosing people with chlamydia either.
Malpractice. What the heck? After a hit like that, I feel like they should have done an ultrasound or a CT scan? Maybe even a transvaginal imaging? That could have been serious. I'm so sorry they were incompetent. That's so alarming
“Try not to think about it”
As we lay on the bathroom floor after vomiting from pain and having to call out of work for the second time this week because we can't move and the pain meds aren't touching it. Yeah... don't think about it 🙃 I'm so sorry that was a doctor's response... that's so stupid
I think I was 16 at the time and I went to a children’s ER for severe abdominal pain. After having my appendix and ovaries checked, they pulled my mom out of the room and basically said they need to test me for an STI and if I didn’t agree they wouldn’t treat me further. They also pressured me not tell my mom, probably because she’s a health care attorney and they can’t threaten not to treat me if I’m not tested for an STI. The whole experience was… shameful? I was released after seven hours with a diagnosis of “belly pain.”
You need a brain scan..
For what?! How did they justify that suggestion?!
That nurse really has no clue! I'm so sorry that happened to you 💔 A rheumatologist told me to lose weight and try yoga. That its also my fault I'm in pain due to multiple surgeries! He was such a jerk.. Some words that trigger me now is when I'm told to seek therapy! Seriously? It's on my medical chart that I have been in therapy going on 6 years almost.. but that doesn't matter right? Right after my painful cystoscopy with my pants still off the doctor told me I must be confusing my period blood with my urine. He said I wasnt able to tell and to not come back for a follow up visit. I was 30 yrs old, clearly I knew the difference. It turned out that i had stage 4 endo on my ureter. That doctor was such a prick. The list goes on and on.
When I was 16 a male doctor told me that "sometimes girls just hurt."
"Yeeees, and we should probably try to find out \*why\*, should we not?" It's like when bloods come back as "tell patient normal". That's lovely, we have found out some things it isn't, can we continue to look for what it might be? It's infuriating.
A medical professional I was seeing for pain told me I should have gotten pregnant to avoid my current situation. When I didn't react, they repeated the comment. I am child-free and very content with my decision but I was annoyed as hell.
To avoid?! Yeah because raising a whole ass child for 26 years is a great medicine for a disease with no cure 🙃 I'm so happy for you being content and child free. Doctors expect us to just keep popping out babies so we can avoid endo but like... it never goes away....
We need to start reporting these medical professionals. Let’s see how they like saying this BS when they’re out of a job
I went into my first OB appointment in a new town/state. This doctor was who everyone I knew in my town recommended. Upon the first five minutes of her walking in, she said after looking at my first lap surgery report that I was a “mess” and she wanted to make it clear that she wouldn’t be touching me (her exact words). Also she felt the need to emphasize that having this disease was not my fault just “bad luck”. Her assistant had set up the room for a pelvic exam and when I asked if I’d be having one she said, “I really don’t see the point in doing that today. Do you?” And she ushered me toward the exit door. Cried in my car and couldn’t even return to work because she made me feel so disgusting.
You're not alone. That happened to me today at the hospital. I was in the ER with a 7cm cyst rupture on my ovary and the doctors initially wanted to do surgery. But then they told me that I was too "medically complex" and "an enigma" and they didn't feel comfortable doing the surgery. Then they told me that they made calls to other hospitals and said the same thing. They ended up discharging me with 10/10 pain and told me "pain management" was the solution. I hear your pain and I'm so so so sorry. It does feel humiliating and hopeless. It made me feel not human and gross. I'm so sorry but I appreciate you sharing because I really related to you and your experience. It makes me feel not alone. Thank you 💛🫶
That is so ridiculous they discharged you without actually fixing the problem. And if they can’t fix that problem they need to find someone who can because that’s basic patient care. I’m sorry you experienced this, I hope you find a doctor that truly cares. My current OB & oncologist made me feel heard and respected. I knew I was in the right hands when they said “whatever you want to do we’ll do it” after giving me all my options. I’m currently recovering but I finally feel relief after many years of pain. I hope you find some relief and adequate care very soon 💛
"I don't know why you have pain. Some women just have more pain" after my most recent lap where he didn't find anything. I had Endo confirmed 10 years ago in my first lap.. His solution is an IUD (or trying yet another BC). I cry when I have exams because it is so painful. How would I manage an IUD??
Exactly my feelings on an IUD. Are you in any position to find a new doc? Don't cave into solutions, and trust your gut. If it doesn't feel right, don't do it, and hold your ground. An IUD would have probably caused me severe damage if I followed that solution before I got my hysterectomy. Stay strong my friend 💛🫶
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No kidding, I'm afraid of most doctors too. Women's healthcare is bad in general, but it's 10x worse for black and indigenous women. I'm so sorry this was your experience and they just assumed you were active based on your skin. I don't know why doctors are so quick to jump to conclusions about stds when we are presenting no symptoms other than pelvic or abdominal pain. And to automatically not believe people when they say they aren't active. Also - I just had my cyst rupture yesterday morning and they told me the same thing, that I didn't need to take time off of work... yet they're prescribing me opiates. I'm so sorry that they didn't at least give you pain medication. That's so awful. I hope you found a new professional who listens to you 💛
Countless stories about what doctors have said to me as whole, but this is the only endo related one. You know how doctors always say something like "and if the pain gets too bad, let us know"? I spent years not calling doctors about my pain levels because I had no real point of reference to know how bad was too bad. Then I ended up in ED for three days for a 6mm kidney stone that did not pass on its own. I'd spent weeks up to that point just ignoring the pain because it felt "*almost* as bad as my typical period pains. Next time I saw my male NP at my GP's office, he again said something about calling for bad pain. I explained to him about the kidney stone, then said "so how exactly will I know if it's *too* much pain?" Dude was thrown by that one and didn't really know what to tell me. But that's when I started to realize what my pain tolerance is and began to mention my pains more to the doctors.
When my gyno refused to do a laparoscopy, and I asked why his answer was, 'you're just sensitive to pain'.
What we need is those electric shock things that pregnant wives put on their partners to "feel their pain of labor" or periods. I'm sure if you shocked that doctor with your Level 11 shock, he would have been on the floor peeing. I'm so sorry. Were you ever able to find someone to get you a laparoscopy?
I had a doctor tell me “get a new job, get a new husband, get a new car, and maybe you won’t be stressed and in pain anymore”
Right after sticking a speculum in my ass and me saying that this is an embarrassing and uncomfortable situation: “Why is it embarrassing? It’s not embarrassing?” **in a patronizing tone** And, I quote, “There’s nothing wrong, that’s just how God made you Princess” His name was Dr. Sparkul ✨ 🙄🤦♀️
Gynaecologist said “we’ve eliminated everything physical” in regard to what was causing the severe pain 6 weeks post op following a laparoscopy where they found endo but said it was only small amount and you wouldn’t get much pain from it. She essentially eluded to the fact she thought it was all in my head. Went to another doctor and they diagnosed severe adenomyosis 🙃
Lovely. Very helpful to "eliminate everything physical" and basically tell you to get out of your head. I'm so glad that you found another doctor who was able to diagnose you correctly. I hope that you are getting the care that you need now. That's so awful that the first doctor put you through all that mental gaslighting. 💛
I feel so bad for all of you. So many crappy drs. I was diagnosed in about 1987-I was 17 and never really had a bad experience except for not excising the lesions and lasering them so I had to keep having surgeries until I found a world renowned surgeon who took care of it finally. I had 5 surgeries and now in menopause. One bizarre situation, I was in constant pain for a month, I had surgery, woke up to the dr saying it was too complicated and she didn’t do anything. Had to go to Mayo Clinic to get it taken care of. Pain meds never helped and took so much ibuprofen that I go ulcers. Most of the time I would writhe in pain asking my bf/husband to knock me out. Of course he wouldn’t-dammit.😬
SOOO many to choose from! Let's see, a doctor prescribed me darvocet N for my painful cramps. And shocker, it did NOTHING for my pain. But the kicker is when he sent me away with my script, he knew I was leaving for college in a month, and he actually encouraged me to DRINK ALCOHOL in college while on these meds. I'm not making this up. Yes a doctor encouraging an underage person to take a deadly cocktail of drugs. And let's not forget, how alcohol and endo are not a good mix to begin with. Wtf... This same doctor refused to prescribe birth control pills for my suspected endo pain since he was a staunch Catholic doctor who my super religious mother required me to see while under her insurance plan. So instead he prescribed me a narcotic. Not thinking to research this as Google was a new concept at the time, one Fri night in college, I took a dose of the darvocet n and had a drink with some friends and immediately felt ill effects from the mixture (heart palpitations, overall malaise, etc.) I knew something was wrong. I then realized that I could have died had I listened to this quack of a doctor and went on with my night.
He literally tried to kill you... I'm so glad you're here today because OMG that's so fucked up. That there is malpractice big time. Someone else commented that their doctor prescribed alcohol basically too. And opiates. Dr. Google is reliable, I don't care what doctors think. Dr. Google can and does save lives. I'm so so so glad that you were able to resist doctor's orders. It's so hard too as a young person because you see doctors as authority and to listen to them. Growing up for me was realizing that doctors don't know as much as we think. They know anatomy. That's it. Thank you for sharing your story. I feel like we need to write a book of essays on people's experiences. 😭
I had a male doctor recommend wine to me for my pain (vulvodynia), and refused to refer me because he said I’m a “good girl” and didn’t want to “expose me” to different doctors (since at the time I had only slept with one person). Suffice it to say I fired him after that and found a gyno who was actually willing to listen and help find the real problem of vulvodynia
Holy shit that's so creepy! "Good girl?!!" No doctor should ever be saying that. I'm worried about other patients this doctor had that didn't meet his standard of "good girl"
“I can’t give you pain meds but I can give you a hysterectomy.”
Excuse me?! Mine was the opposite. They prescribed me a billion different pain meds but refused for a long time to give me any lap or hysterectomy. That's outrageous they were so quick to just remove the organ without pain mitigation first. I'm so sorry
Not specific to endo but my IUD was recently lost in my uterus and my doctor told me more testing, like the pelvic x-ray suggested in the ultrasound report, wasn’t warranted. Also that radiology doesn’t understand why things get ordered. This is the same doc though who told me getting an IUD would prevent endo…
Uhhhhmmmm that's absolutely absurd I'm so sorry! I was also told IUDs would cure endo... they're so stupid. What ended up happening to your iud?
8 years ago I had a doctor say endo? And then say nvm she’s too young for a lap or to do further testing for it. I was 12. Got diagnosed at 19. Could’ve saved me a lot of stress and agony
"it could be interstitial cystitis, go ahead and google that" -gyn in post-op follow up. Post op for a lap in which they didn't bother to biopsy me. "It could be pelvic congestion syndrome which you'll have to google" - Internal medicine specialist who took the whole appointment to recall the name of the syndrome. Long before those two, while I was finding a general physician. I tried one, and after he refused to refer me to a gynecologist, he made a hand motion towards the gym across the parking lot and said something along the lines of "that is a wonderful gym and most women find relief with exercise. A gym membership is something you really should consider, or the River valley" (our town has good trails) He was pointing to a gym I'd had a membership with since it opened 6 or 7 years prior and frequented regularly. I could have out-run, out-bench, out leg press, out deadlift, out-sit up this doctor on the spot. But I have big tits and wide hips naturally so how could his ignorant ass possibly know I had an exercise routine? 🫨 I was in a point in my life where I was hell-bent on powering through the pain as so many advised to do. Im pretty sure my over zealous exercise routines in my early 20s CONTRIBUTED to my pain if anything, but thanks, DOC! 🫡
I’m not a religious person but had gone through so many gynos trying to understand my pain (“periods hurt!”) and a friend swore by a specific one who was quite religious. I went. They must have thought I was doctor shopping because instead of trying to help me figure out what was causing me to black out in pain they told me to “call the candyman” 🙄
It ain’t that serious
Oh I got a go one! Had check up about a week after full hysterectomy. Telling the GP (regular had been suspended for refusing to prescribe birth control) that I was feeling really good, happy, had such a reduction in pain. He; A White, mid aged man told me that any residual pain I might have in the next few weeks is likely the result of my mind processing the trauma of a DV relationship over a decade ago… Excuse me? You mean to say if I have any post-op pain it must be from my womanly emotions and experience that I’ve been heavily treated for and worked through that you would have found in notes that are 10 years old and not having my ovary, tubes, cysts and uterus removed recently? No way…
HUH?!?? You literally had a surgery... of course it's gonna be physical residual pain. Additionally, your brain will likely be focusing on rewiring that area because you are missing some organs 💀 (I say this because after 9 months from my hysterectomy, I had a ghost uterus in me. Like I hyper-felt like it was there. Weirdest tinge) He's ridiculous I'm so sorry he said that. That's also dangerous for a doctor, who is not a mental health clinician, to be just assuming physical pain is ptsd related. wtf
Not technically endo-related but one time a doctor asked if I’m sexually active, to which I said yes. He asked if there was any possibility I could be pregnant, and I said no, I’m a lesbian. He then proceeds to waggle his eyebrows suggestively and say “well, sometimes lesbians like to sleep with men” with this nasty smirk. That was the last time I had a male doctor, and I never will again.
EWWWWWW THATS SO ICKY AND UNSAFE!!! Im so sorry that was your experience and im so glad to hear that you found another doctor. Jesus Christ 🤢
Currently trying to get a diagnosis but when I was in a lot of pain mid cycle and literally couldn’t stand straight, I had a nurse immediately say “We don’t prescribe opioids” (live in a city that has a really bad opioid crisis at the moment), and I was confosued because I was asking for a biopsy and ultrasound (neither of which I got because it wasn’t “necessary”) but I guess the $300 bill afterwards wasn’t necessary either 🙃
For real??? That's the first thing they said... I hate when doctors rule testing out as "unnecessary" they literally are even the ones paying for the bill. Just listen to us and give us the tests 😭 Also $300 for the visit they didn't do anything at? Real. I didn't have insurance for the second part of my endo journey and I'm pretty sure I spent like 8 months of rent on just a handful of appointments. I'm so sorry this happened. Don't give up on finding a doctor that will listen to your concerns. It's exhausting but they are out there. It's 1000% okay to ask for referrals too.
At my 2 week post-op, my doctor recommended getting pregnant (and spending a year breast feeding lmao, as if everyone can do that) to stop symptoms. This was extremely tone deaf after I spent the entire summer worrying I was infertile after my ex of several years, who I thought I would spend the rest of my life with, gave me an STD.
Trauma informed doctors are so rare sometimes. Also wtf. Doc can pay for child support then if he's prescribing a literal child to our bodies like that 💀I'm so sorry this happened. I hope you were able to seek out another doctor that listened and actually was willing to work with you on solutions. 💛 thank you for sharing
I was called a whore at 16 years old, in front of my mother (who absolutely handled the situation appropriately), by a female gynecologist when we were first starting my endo journey. I ended up losing some body parts, and was not having sex at the time of the appointment, so that doctor was so far out of line she should be on Pluto. She is absolutely responsible for my problems not getting treated in a timely manner, and directly contributed to the abuse I endured from my parents because of her fear mongering and slut shaming.
Before I knew what I had I was getting constant “UTIs” which I now know we’re just flare ups I was in the hospital for one and the doctor came in asking me questions about my symptoms and the last one he asked was “well which way do you wipe?” I was mortified.
Whhhhhh... why do they think we are so dumb. I would have been mortified by that question too. I'm so sorry, did he at least give you proper treatment or did he dismiss your medical concerns?
I've been told it's normal I must have a low pain threshold, one saud hurry up and have a baby, one said its ibs and these are all doctors and just the tip of the iceberg.. ugh
I feel you. I've been told these same things from several doctors. We gotta write a book with these horror stories I swear 😭 thank you for sharing. And saying that's just the tip of the iceberg is REAL.
"I want to prescribe you medication." "I won't take medication if it will affect my hormones as I'm trying to balance them." "They're not hormonal pills." "What are they then?" "They cure endometriosis." After telling my gynae there's no cure he still tried to push me said medication. We went back and forth a few more times before he admitted they're hormone pills. The day my lap was confirmed I requested a referral to another hospital. Wasn't having someone who blatantly lied and was extremely unprofessional do any sort of surgery on me.
“You’re just a child, you don’t need to worry about all this” I was 23, and in constant pain.
Calling someone a child when they are literally an adult is a massive red flag. Like. Then send me to pediatrics tf
Got the good ol "youre just being dramatic/its because you have anxiety" for the first 19 years of my life by a rich male doctor who refused to do any actual tests until i got a female doctor and within weeks figured out that not only was my uterus malformed, its riddled with adenomyosis and ive also been intersex the whole time recieving the wrong hormones from my body and flaring up my symptoms tenfold. I love men! 😊😊😊😊😊❤️❤️❤️❤️❤️❤️
Incredible. The amount of malpractice you faced as a child into adulthood all to be met with someone that actually knows what to look for and gave you LITERAL life-changing news in just a few weeks of knowing you. I'm so sorry.
I went to the er (a crappy one but only one where I was living) before I was diagnosed and was in horrible pain. I had an iud at the time and thought that’s what it was. The er doctor told me “maybe I don’t know. You’ll have to see a gynecologist for that.” When it was 3am in a Friday. Idk like call one?? Apparently he couldn’t help me and sent me home with “idk.” The clinic there had a 3 month wait even if you were already a patient so I drove 3 hours to see my old obgyn to find out I had a hemorrhaging cyst. Great work from that er doctor having a CT scan of my abdomen but couldn’t tell me that.
I had a female ER doctor try to convince me that my anxiety was causing my pelvic & abdomen pain
“ most women just take a handful of Tylenol and they’re fine “
Haven't really commented or written anything, so I don't know whether or not there needs to be a TW or not, so I apologize in advance. I had just been taking into the ER after having an attempt, and I'm pretty foggy. I'm still not sure where I am completely, and this nurse comes up to me to take my blood, and I have an insanely huge fear of needles, so I started to freak out. She stopped, looked me dead in the eyes, and said to me that "it's just all in my head. I need to stop overreacting. " I ended up having 2 seizures partly because of fear of having to have blood taken but also because of what i had done but I obviously know that my fear is in my head, but in that situation, I feel it was very much the wrong choice for her to say that