My surgeon gave me the option! I was like, “if you take it, where do…things…go? Will I turn into a puppet?” 😂
I decided to let him yeet it because NO MORE PAPS!
Damn, you're lucky! I still have to get my annual every year and pap every 2 years, even without my cervix.
I did ask my surgeon a very similar question though😂
I still have a cuff, which means every couple of years (due to my medical history) I get a pap. This year is my off year, thank goodness
Eta: most are not required to continue having a pap, even every couple of years. My own personal medical history and the cancer risk in my family means i still have to endure and get an annual exam every year, my doctor only does the pap every 2 years though
My guess is because removing the cervix sounds scary, but the vast majority of people who have a hysterectomy had their cervix removed. So I always assume it is more of a "it's not as bad as it sounds to remove it!" vibe instead of "ahh life is awful if you leave it" vibe.
But I also have a habit of assuming the best in people 😅
Yes this,
This is exactly how I see it too.
I am not sure about the intention behind OPs post tbh.
At the end of the day, this is a forum where we all come together to chime in and help one another.
If a post specifically asks for everyone else to abstain and only wants people with their intact cervix to reply, then ofc I understand.
Otherwise, I also enjoy having a variety of feedbacks in the reply section. Most importantly, we’re not entitled to people’s time and them sharing their experiences. I am always super grateful that people take precious moments out of their days to contribute to this forum
Lastly, this post isn’t about me but just wanted to say that I am quite attached to this forum as this is the main reason how I was able to survive the dark days of going though a hysterectomy and then the recovery part all alone.
🫶🏾
To be fair, that's not an issue that's confined to this sub. I think it's just a Reddit thing. "Doctors of Reddit, what's the most interesting medical case you've seen?" "Not a doctor, but my mom's friend's boyfriend is a lawyer, and he had a client once that was a vet tech....." I'm always so befuddled lol
My perception is really different from yours. I didn’t keep my cervix and when a person posts something that legitimately seems to warrant opinions/experience pro/con and I answer it’s actually pretty common for someone on the pro-cervix team to comment *under* my comment about how great the cervix is. I would really rather they just make their own comment.
This is personal opinion, but I think that lately this sub has really gotten people worked up into cuff anxiety in ways that aren’t helpful to many people. I’ve seen people with cancer that are more afraid of having a cuff than not getting all the cancer out. I’ve seen people 6 MPO that are afraid to live their lives. A lot of us end up needing to have the cervix removed. If I think someone might benefit from hearing that it can be absolutely fine (in fact is fine most of the time) I’ll tell them so.
Honestly, yes. This sub has made me so petrified of cuff tears. I had my surgery on 5/29 and I constantly think about it and the thought freaks me out sooo much. I also agree with your point about people making their own comments instead of commenting under my comment; people will say, "I'm not invalidating your experience, but..." and then write about their experience that's opposite to mine or irrelevant to mine. Like please, just make your own comment...
I’m almost 1 year post op. Follow your doctor’s recovery to the letter, be conservative about it even. Insist that they look at their handiwork at 6, 8, or 12 weeks - whenever they’re going to release you for activity.
Once they do, start slowly but start! Lift things. Have sex, if that’s part of your life. Get out and move. Living your life is the way to get confident.
My external incisions are barely even visible anymore! There’s no reason to believe my inside incision isn’t also healed.
I hope your fears go down with time. I had my surgery 1.5 years ago. No scares of a tear or issues with one. I don’t have a cervix either. I think there are more like me but since we have nothing to report we leave the sub and the ones who live in fear or have had it happen sound so much louder. (Think of it reviews for anything. It’s either the really good or really bad, the it went according to plan people rarely make a review).
Totally. I definitely know that the loudest voices in spaces such as these are people who are being inquisitive or are documenting experiences that may not be the norm. A hysterectomy is a very common procedure and I know most people's surgeries go well and they heal just fine. I just tend to be a more anxious person who spends a lot of time researching, which can be a downfall. I have medical trauma so it all kind of comes from that too. I'm glad you're doing well, and thank you!
I understand your concern, I truly do. I've been there, many times. But after 17 years post-op (I was 25 when I had my complete hysterectomy and ooporectomy), I've come to peace with my body, I've never torn and cuff tears are extremely rare (1% or less of patients experience one).
You're still getting used to your new body and self post-op. Give it some time and know that the odds are in your favor of NOT having a cuff tear.
I get tired of seeing people post comments like, don’t let your doctor take your cervix or it will ruin your life!!! I am thrilled that mine was removed but according to OP, I guess I’m not allowed to comment. 🙄
I always worry about people keeping their cervix because HPV and cervical cancer is so common among those of us old enough to have missed the vaccine. I don’t understand why you’d want to keep your cervix when you are already having surgery and keeping it serves no purpose AND it could kill you.
I had my cervix removed because of cancer risk, and basically, the cervix is the lower part of the uterus, so if there is uterine cancer, it can be in the cervix. At 66 I just didn't want to deal with any more cancer worries and biopsies. I read up on cuffs, and cuff tears, and they seem to be pretty rare -- much less frequent than this board suggests. I think there is too much worry around cuff tears than actually happen. YES, you need to be careful after surgery. But the incidence of a bad outcome is pretty low. We're all scaring ourselves for no reason.
I don't think I've commented on posts where people have specifically kept their cervix/ want to keep their cervix and are looking for info or experiences about that. I will say that if someone is trying to decide whether or not to keep theirs, the reason I had mine removed was because I had endo growing on mine and so keeping mine seemed like more of a con than anything. Any other endo folks may want to consider that as well. Otherwise, my mom kept her cervix and she never had any bleeding or issues after her surgery at all.
I think this question is best left up between the patient and doc. What does the doc say? Will they even leave the cervix in when doing their procedure? Keeping your cervix because of some mystical belief about its purpose is just so stupid. If you had lung cancer are you telling your doc, just keep the little piece on the right. If you have uterine cancer, it can be in your cervix, too. Listen to your doc. You're not the doc. Listen to your doc.
I wholeheartedly agree that medical decisions should be made in collaboration with the doctor and the individual patient. But I do not agree with invalidating another persons belief about their own body. To call a belief “stupid” shows how narrowly you view the spectrum of beliefs people have about the body and what is ok to do and what not to do.
I used to follow the same line of thinking and would blindly follow whatever advice or medication the doctor was giving and asked no questions. They were the “authority” and that made them somehow all knowing. And that line of thinking has taken years off of my life because of careless mistakes from those “all knowing doctors.”
If the doctors won’t give a space for the patients to ask questions or express their own beliefs about the body and be willing to collaborate with them, where else can they get those questions answered? It’s completely normal to go to another source to try and find the information. If doctors want patients to go to them with questions or concerns and not to the internet, then they need to figure out how to answer the questions in office without brushing off their patients or just straight up ignoring us. They need to do the work of reading different studies and being up to date on all the latest research. But let’s be for real, and come back to earth. Doctors are not all knowing and they have the same 24 hours in a day we all get. It’s nearly impossible to stay up to date on every little nuanced disease and all the research that’s happening. Wouldn’t be a much better system if doctors lost their ego about knowing all and accepted that the patient has done research about the symptoms they’re experiencing. Maybe they could see the research as a patient taking an active role in bettering their health, instead of fearing what they have found from Dr. Google. If that research topic didn’t apply to that patient, wouldn’t it be better to have a conversation about what the research shows and how that varies with the patients presentation?
What a completely different view I (and probably many others) would have on healthcare workers if they could stop pretending they’re the only ones with access to knowledge. If the symptoms don’t seem to fit their algorithm, maybe work with the patient to figure out what is going on instead of brushing off very real symptoms and presentations as “faking” or “drug seeking.” It really would be a different world if doctors and all healthcare workers stopped using the oppressive system that has been built to “weed out the ones faking, lying, or only have anxiety.” I do have health anxiety, but that anxiety is never relieved by being told how unrealistic that fear is by someone who is cold and uncaring. But an honest conversation with a professional who can meet me where I am at and help me understand what is happening in my body, does help relieve my anxiety.
I am not a doctor. That’s correct. But my belief is that the doctor is the expert in their field of medicine. I am the expert on my own body. They do not have the lived experience of being in my body 24/7. I do. A patient’s beliefs about their own body needs to be respected, and not only allowed but actively invited into every conversation about what options are available. Doctors do not have to live with the results of whatever medication was given or procedure was done to another persons body. But the patient does. Which is why I am a huge advocate for active collaboration with the patient and their medical team to decide what is the best course of action is, for that individual patient. I will happily give every doctor the respect that they have earned, when they earn it. But I will not hand over my autonomy to another person just because they have some extra letters after their name. And I sure as hell won’t listen to another human being who actively dehumanizes me when my views do not match their own beliefs.
I reply because most people who make the decision to keep their cervix is out of fear, or misinformation. I have a cuff and my quality of life in general, and sex life specifically is 10000% better now than before. I just want people to know they don't have to be afraid of the cuff. My gyno STRONGLY suggested removing, and I REALLY REALLY REALLY didn't want to I was ABSOLUTELY TERRIFIED of sex being worse etc... but 100% of my fears were unfounded. I'm glad I listened to my surgeon (who she herself also had a hysterectomy, and her cervix removed, so she spoke to it on a personal level which gave me so much more confidence to have it removed)
This. I also think the people that have sexual dysfunction afterwards are actually suffering from a hormonal issue. I don’t think it has anything to do with the cervix.
i think it is likely because most of the people on here had theirs removed but still want to help if they can and sometimes the questions can be answered despite the surgery being total or supracervical. what i can say is i have been reading this reddit for a year now while preparing for my own surgery and i have noticed that a lot of people think the healing time is shorter with the supracervical however i have read many many posts to the contrary.
i believe it really comes down to wanting to help in a way that ensures the poster is fully informed.
I think manner of surgery is also a huge indicator of recovery time. I had a vNotes procedure and I honestly was great after a week. I didn’t lift anything heavy and waited to have sex for 8 weeks but other than those two restrictions, I was feeling amazing post surgery despite having everything removed but the ovaries. My pain was limited to surgery day, and day 2. I spotted once on surgery day but it was like a drop of blood when I was home. For me the post surgery constipation was the real devil and coming off of that anti-nausea patch with my vision.
Life has been a breeze since surgery and I’m so relieved and happy I had everything removed that needed to go. Plus my last yearly was so fast and easy. No more paps is HELLA AMAZING.
i had TLH with BS and i came home with a catheter for 3 days and my recovery has been very easy (knock on wood as i am only 9 days postop) i have not taken anything other than regular strength advil since whatever was given during surgery, i have not need the pain meds at all and other than my restrictions i am doing everything (not everything lol more like walking around my property, sitting on my deck and helping with little chores when i can) so cervix or not i feel like my personal experience has been smooth.
I think also sometimes people just want to educate so people can make an informed choice. Some people on here speak about the cervix as if it’s a separate thing but in reality is basically part of the uterus so if you have problems related to your uterus there is a chance you will still have those problems if you keep it.
Basically it’s not so highly recommend to be removed for no reason. Ultimately it’s always a persons choice when it comes to what they do in regards to their body. But for myself I always just want to feel fully inform before making a choice and sometimes doctors don’t explain all the aspects super well so people here do it instead.
Hello friend, I fully agree that most doctors do not provide enough information for women to make decisions optimally. Many doctors are not aware of the potential sexual side effects of hysterectomy, whether supracervical (SH) or total hysterecgomy (TH). My surgeon who has been performing hysterectomies for more than 20 years, four or five days a week, had no idea that during orgasm the cervix dips imto the vaginal canal (Ref. Kinsey Institute).
When I told my doctor that I wanted a LASH, she asked why because the TH is most commonly done. I had to present my arguments. She agreed with me after we spoke and said she did not want to remove anything I did not want to remove. My cervix is healthy, and I have no pre-existing risk of factors for cervical cancer.
Before my fabulous LASH in January, I was given no articles or direction to any info regarding sexual satisfaction after my procedure by my surgeon. IMO, this should be standard information presented to women. Instead, I had to rely on my educational background to search through PubMed and other peer reviewed article sites. Many women do not have the luxury of being able to do that or just don't know how.
Your statement that "there's a chance that your cervix will have the same problems" is correct vs no cervix. However, there is also a small chance that a cuff will have problems too. The post surgical outcomes seem to be nearly identical. (https://pubmed.ncbi.nlm.nih.gov/30910330/)
There are some studies that show women who kept their cervix are happier sexually afterwards. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC65528/#:~:text=Forty%2Dthree%20percent%20(n%20%3D,%3D%202)%20of%20SCH%20patients.) However, there are some studies that show an equal satisfaction rating. It's so individual!
Do you have any links to peer reviewed articles stating that if you have problems with the uterus, there will statistically be more problems with the cervix as opposed to women who did not need a hysterectomy? My surgeon did not believe there was a large risk. She said the percentage of women experiencing problems with their healthy cervixes post hysterectomy was so low that she could not give me statistics. She had to dig and she still could not find anything.
In some women, there's a possibility albeit a very rare one of growing fibroids not on the uterus or on the cervix. For example, this woman had one grow in her vaginal wall. I've seen studies where they grew in the abdominal cavity even without a cervix. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4149111/
In a very small proportion of women (.4% according to some studies) may grow fibroids back on their cervix. I was willing to take that risk. I respect it another woman does not want to take the risk, though.
This research indicates that a laparoscopic abdominal supracervical hysterectomy is slighly superior in terms of less urinary infections post surgery vs the TH.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8396917/
The cervix has its own area of the medial cortex that triggers during stimulation which is distinguishable from stimulation of the vagina, clitoris, and nipples. It really is its own thing sometimes, at least according to the nerves it is.
The vagus nervous connects to the cervix, but not the upper body of the uterus. It should definitely not be removed without a lot of thought.
I don’t know why you picked my comment specifically to do this on. Like I said it’s ultimately a persons choice to do whatever they want to do. Op asked a question and I answered.
In my case I have stage 4 adenomyosis, so if I were to keep the cervix that would still be an issue. I doubt I’m the only woman in this thread with that same issue. I’m not gonna go through major surgery only to be left with more pain on the other side because I’m afraid of a cuff, or a “diminished sex life”
When talking to real women in my life who have had hysterectomies none of them have had issues with their cuff or their sex life. I take those conversations as having value.
You sound awfully defensive towards someone who said “it’s your choice”
I also never said there weren’t issues with the cuff, they are just more wildly educated on by surgeons and that’s the difference…
I was worried about losing my cervix but I’m glad it’s gone. I always had a tender cervix that at times caused pain during intercourse. I am now 4 months post-op and can say that the sex is so much better. I didn’t realize how much pain I was having until the uterus and cervix were gone.
The simplest answer is that the majority of surgeries (at least ones that get posted about here) have had it removed. So people can only speak from that perspective but still want to offer insight into if that was a good or bad decision for them. For some it was an excellent decision (like myself) and for others they have dealt with tears, infections, discomfort or pain, prolapse, or loss of sexual function/sensation.
So for those like me we provide the reassurance that it's possible to have it removed if that's the direction someone decides and they could be alright. Others are providing their experiences that maybe keeping the cervix would be a better option because they had x, y, z complications with their removal.
I will say that if you kept your cervix then you can't speak about cuff tears because you don't have a cuff. A cuff is formed surgically when the cervix is removed. So the only people that can speak to the benefits or the downsides of a cuff are those that have experienced having one. You could speak to the benefits you've had while keeping your cervix and the healing process as well as symptoms you've experienced with keeping it.
I wasn't a candidate to keep my cervix and I always remind people that their body might decide yes or no for them. My cervix was actually horrific. The surgeon said this during surgery. I woke up during so I wasn't supposed to hear "What a horrific cervix." I got therapy and no sign of PTSD from that experience since it is a scary thing but due to my life not that bad goes here.
I try to tell people they need to assess with their doctor because there's a ton of reasons to keep or to get rid of the cervix. That period risk was why we already planned to get it gone as well as the high risk of cervical cancer in my family. Then it did some things unrelated to cancer that were just wild. It had multiple openings, some random tube like structures that tried to make new openings, was twisted the opposite direction of my twisted uterus, and more.
The concern of a tear or less sexual satisfaction were not ones for me. I can't control the future but I can do everything possible to ensure I heal well and take care of myself. I couldn't have sex due to the whole "Get mildly horny and you will begin to hemmoragh" thing.
There's a lot of "Made to order" in hysterectomy talk that seems to forget that there's a strong possibility we don't get a say.
My surgeon told me no when I asked. Didn't press and didn't want to shop around for the option. Good call. I had a cervix just riddled with what shouldn't be there. Cuff is fine, sex is great. I don't even think about it anymore. I'm back to normal activities and hobbies (horseback riding and strength training)
because if you kept your cervix, commenting about the cuff is meaningless. people who got rid of their cervix can't have them put it back or grow a new one.
people who are on the fence about keeping their cervix should be informed about the risks. some people might not know that mini periods can occur. imagine if you didn't and then you had surgery but still had mini periods. that might be really upsetting.
also, cervical cancer is nothing to balk at. it's cancer. you could die. that's not a controversial statement. I've seen lots of comments of people with cuffs who are just trying to be reassuring to those on the fence *because* cervical cancer is a risk. it's easy to be really scared about the cuff because we are so much likely to hear bad stories than good. an unremarkable recovery is less likely to be remarked upon. sharing positive stories is a way to combat that for people who might be on the fence.
I didn't keep my cervix, but for a while my anxiety over the cuff made me wish I did. if someone is that committed to keeping their cervix I'm not gonna argue with them. but people should know the risks, and being reassuring about the cuff to a person may ultimately end up with a cuff is not a bad thing.
If a woman has had pre-cancerous paps or she has the brca2 gene, I would yank it in the heartbeat. My best friend has the brca2 gene and had a radical hysterectomy 6 years ago. She says her sex life is better than ever was, and it was really epic before.
To counterpoint that, I really wanted to keep my cervix, it's healthy, and my body was telling me to keep it, so I did. If keeping the cervix is an option not contraindicated by health reasons, those making the choice should be aware of the potential sexual side effects. In general, there is a slightly higher rate of sexual satisfaction in women who keep their cervixes. Is also pretty unique to United States to do the total hysterectomy. In Eirope, the supra cervical is standard.
Info re: sexual satisfaction in both types of patients
https://www.bumc.bu.edu/sexualmedicine/informationsessions/sexual-dysfunction-after-hysterectomy/
More information on the potential side effects of hysterectomy, both supracervical and total:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3090744/
I had my doctor take it all (ovaries too). I just turned 49 and can manage with hormone replacement. Since my uterus loved to grow crap (adenomyosis) and I did have cancerous cells ten years ago it wasn’t worth keeping. Orgasms are still fantastic and I just don’t miss it. I also didn’t want to run the risk of bleeding because it can happen if you keep your cervix. I figured if she was in there to just take it out and I was close to menopause so leaving anything that could potentially grow cancer didn’t make sense to me.
I don’t care what others choose to do and am here to give my story and four months post surgery I’m loving life!!
Well for one thing, there’s so much disinformation about how keeping it is integral to orgasming, among other myths which leads to resistance to removing it—the gold standard recommended by the top women’s health physicians and academics in the country. I encountered all those “warnings” and more, which is how I ended up with my surgeon teaching me about what a bad idea it is.
Also there’s a considerable amount of regret when keepers end up having to do paps, get endo, cervical cancer, or in some awful cases grow fibroids on a bit of flesh that should’ve been removed.
There is a dearth of information on woman’s health and that is both infuriating and even deadly. We’re trying to set the record straight.
I think it’s important to set the record straight, absolutely, but I also find it saddening that the general consensus on this sub seems to be that cervix removal is the best option for everyone, and discussions and threads about those who kept their cervix are mostly filled with those who have cuffs.
I didn’t have mine removed, I wouldn’t feel it appropriate to tell my story in a post asking for experiences about having a cuff, but it always seems to be (as OP said) that the comments in cervix discussion are filled with people with cuffs dismissing any value to the cervix.
Merely wanting to keep as much of your body in tact as you can (if it’s healthy) is just as valid a reason as any. I just wish there was a little more support for everyone finding their own way.
We’re all having these surgeries for such varied reasons and we should be respectful of one another’s choices. Whilst you’re correct that some women regret keeping their cervix, some also regret removing it. The cases for regret should inform our choices — sure, but they won’t always be relevant to us personally.
Because an enormous amount of people ask some variant of “did you doctor give you a choice?” Or “why did you decide what you did?”
My doctor did give me a choice so I will respond when people ask those type of questions. If it’s “only those with a cervix respond” then no I wouldn’t respond.
From my perspective, it's because, as someone put it, the cervix by itself is nothing but a cancer bomb waiting to go off. That's the primary reason I wanted mine gone.
Yeah there's the blood and the cervical mucus/discharge, but in reality, I think the biggest reason to get rid of the fucking thing is the cancer risk.
So to answer why, I like to remind people that hey, *cervical cancer is a thing!*
That is simply not true though. It is absolutely not a "cancer bomb" waiting to go off. No more than your skin or your pancreas is, much less even.
"In 2022, it is estimated that a female has a 1 in 180 (or 0.56%) risk of being diagnosed with cervical cancer by the age of 85. In 2020, there were 165 women aged 25–74 who died from cervical cancer, which is a mortality rate of 2 deaths per 100,000 women in the population."
>No more than your skin or your pancreas is
Maybe so, but I can't just get rid of those. Without a uterus the cervix is pretty much useless, and there still is a risk of cervical cancer, whatever those chances might be.
I had my cervix removed. I don't offer opinions on whether people should or shouldn't because I really think that's a doctor/patient conversation. That goes for either keeping it or removing it! We can't possibly know everyone's personal risks, needs, or preferences.
I will say that I made my choice because I personally had no use for my cervix, had no risk factors that made me lean towards keeping it, and the only thing it could have done for me was become a potential cancer site. Mini periods and pap smears weren't a concern for me either way.
I believe it is because most people who have had hysterectomies and had their cervix removed simply do not see a downside to it. I know my surgeon told me it was very important to take it out as cervical cancer is a very scary and quite common problem for women.
I honestly don’t feel any different with the cuff whatsoever, so why would I not have had the cervix removed?
I went back and forth on having mine removed until I voiced my concerns to my doctor and she completely wiped away all my worries and I became more than determined to have my cervix removed. I had my hysterectomy 5/31 due to Adenomyosis. She said adeno and endo can also be in the cervix so if you leave it, you chance having the hysterectomy for virtually no reason because you could still have it there and it will cause pain/symptoms. You also risk still having periods. Though lighter, you can still bleed. You also still have risks for cervical cancer. I was also told that if I don't remove the cervix, she couldn't go vaginally/laparascopically and would have to open up my abdomen and therefore have a much longer recovery time and probable abdominal scarring. She also said that "shortening of the vagina" from removing your cervix isn't true. If anything, it elongates it. Also, depending on the structure, a lot of women have pain with deep penetration and it's mostly due to the cervix. I was one of those! I was told I will no longer have an issue with it being gone! Honestly, so many more pros to having the cervix removed. Just because you see things on the internet doesn't make them true or even true for most. The internet can be a resourceful tool, but it can also hurt a lot of people for no reason whatsoever by giving people completely unnecessary anxiety.
I think for a lot of people who speak up like that, that specific piece of information is the one that talked them into the procedure, like the checkmate in their own decision. It's less often you have a checkmate sort of reaction to keeping it.
ETA: it wasn't a planned procedure in my case so I had very little time to decide what I wanted, and the nature of my situation meant that I never ever ever wanted to have the possibility of bleeding from there ever again 🤣 it was horrifying to think it could potentially bleed whenever it wanted AFTER the procedure, so it was a checkmate for me.
My GYN/oncologist advised removing everything, because I had a fast-growing tumor that was possibly malignant. And there was something about how the tissues of the reproductive organs are very similar, and a cancer in one sometimes indicated another. Or something. It's been a few years & the details have faded.
Usually I'm a very inquisitive & informed patient. But I was so freaked out by the cancer possibility that my reponse was basically YES YES RIP IT ALL OUT. I was already post-menopausal & had no use for them anyway.
The tumor turned out to be benign, but the ovary that grew it was cancerous. It was caught early, and I did a course of chemo to boost my odds.
I regret nothing (about the surgery).
A lot of people get a hysterectomy due to endo, adeno, cancer, or period related dysphoria and in those cases I think it's worth pointing out that a supracervical procedure may not solve their problem. If someone has already made up their mind I don't comment, but more often I see posts from people who are on the fence because of cuff anxiety. Cuff problems are overrepresented online because people with no post-surgical complications normally stop posting and just move on with their lives. I think people who've had positive experiences comment so much to try to balance out the scary posts because the truth is that the majority of people have zero cuff complications. Sometimes a poster is just needs to hear "no your organs aren't going to all fall out and yes your sex life will be fine".
I couldn't wait to yeet my cervix. I was like "please lengthen the runway!" But I had insane adhesions and my cervix was colon were enmeshed and now I'm stuck with the thing.
I don't remember if I've ever commented on a post with questions for people who kept their cervix. I don't think so. If I did though it would only be for the reason another person has stated, seeing someone desperate to keep their cervix because they're scared of cuff tears or other complications that are very very unlikely. Even on this post someone has said that removing the cervix causes a "huge" risk of prolapse, which is patently untrue.
If you want to keep it and your surgeon agrees, excellent. I'm not going to warn anyone off that - personally I never found smear tests to be that unpleasant and a mini period wouldn't be a big deal after years of normal periods. If my surgeon had not recommended I lose it (size, type and position of fibroids), I would still have it. I just don't want anyone to fight to keep it against their surgeon's advice, for the wrong reasons.
I think those of us who have had a total hysterectomy answer because we want to share what we have learned from our doctors and our personal experiences. For me, if the question seems to be coming from fear, I generally will answer because I’m guessing the surgeon didn’t take the time to answer any questions or reduce their anxiety by giving them facts. This is my own bias because of the surgeries I have had previously and had to use the internet because the surgeon did not/would not answer those questions.
I have a history of medical trauma and I was so incredibly lucky to find a surgeon who knew that and when talks of a hysterectomy were happening, he opened up time and space for me to ask questions or to talk about the fears. After I had expressed what was going through my head and keeping me up at night, he then went through each fear/question and answered them with his expertise and a knowledge of my past complications so that I could have a more complete answer of what was something I really needed to be aware of or concerned about and which ones I could let go of because my risk for that complication was unlikely. I know that many people, especially in the US do not have surgeons like this. So I answer on occasion to hopefully give a clearer picture and help ease another person’s anxiety. I’m not trying to answer to clutter up the feed. I’m answering with the hope that my experience can be of help to another person.
I also recognize that the majority of people on this subreddit are either here prepping for surgery or they’ve had complications from this surgery and want others to be aware of what can happen. Most of the people who have a “standard”, uneventful recovery don’t stay on this sub because they don’t need it anymore. I’m somewhere in the middle, my recovery has been 95% uneventful but things have come up and it’s nice to be able to have a place to come and talk about it, because I don’t have anyone in my circle who have had this surgery and so have no idea what I’m talking about. But I’m not super active on the sub like I was pre-surgery.
Because once it’s gone, all the risks it carries goes with it. Some people want to keep it and don’t understand what it means - that they can still get cervical cancer and fibroids and still have adenomyosis and that if it needs to be removed later it’s a major surgery that can be worse than the hysterectomy itself. I believe the hysterectomy itself also has to be abdominal.
Conversely, cuff tears are extremely rare. As in none of the doctors I’ve discussed a hysterectomy with have ever had a patient with a tear.
Everyone has to make their own decision but people choosing a cuff know there’s a slight risk of a tear down the road. Thats the only risk. People wanting to keep their cervix don’t usually know that that means long term and the risks they’re signing up for. So people chime in and let them know.
I think a few points should be slightly tweaked here —
The cuff tear isn’t the only risk, there is an increased chance of prolapse in cuff vs cervix. Women who don’t keep their cervix *may* also struggle with lubrication or sexual dysfunction. More short lived, but there is a delay in recovery for cuff vs cervix in terms of how long to wait for intercourse post surgery also.
That doesn’t mean these bad things will happen, but like the things you listed for keeping the cervix, it can.
The hysterectomy itself doesn’t *have* to be abdominal. Vaginal hysterectomy can still be performed whilst keeping a cervix but it usually needs to be requested with a surgeon who is familiar, as it isn’t the standard.
However, it’s important for everyone weighing up both options that everything is *may happen* — we truly don’t know how any operation will impact us personally. I think we all have these surgeries for such different reasons and have different symptoms and histories, and that needs to be weighed up.
"The hysterectomy itself doesn’t *have* to be abdominal."
_____
Sometimes it does, depending on the reason for surgery. For example, I learned from my surgeon that laparotomies are associated with better outcomes for those with cervical cancer, so that's the method used.
Here's one example of the research:
Rodriguez J, Rauh-Hain JA, Saenz J, et al
Oncological outcomes of laparoscopic radical hysterectomy versus radical abdominal hysterectomy in patients with early-stage cervical cancer: a multicenter analysis
International Journal of Gynecologic Cancer 2021;31:504-511.
https://ijgc.bmj.com/content/31/4/504
I get that it sometimes does, but it doesn’t in every case - some are performed vaginally/laparoscopic. That’s all I was adding — it isn’t always an abdominal surgery.
Yes, and that's an important point to make. I was just adding this particular example, especially because it came as an unhappy surprise to me that I wouldn't be able to have it done laparoscopically.
I think it probably is both — the question is why people with cuffs seem to be the most vocal participants on threads asking about the experience of keeping your cervix after hysterectomy.
I’m guessing that when people answer and had it removed, their doctor gave them information about their own personal risk of cancer, endo or adeno continuing to grow, etc. that had not occurred to them until their doctor answered that question for them. So when the question about keeping the cervix is asked and is posed as a what did your doctor say or did they give you an option, we who had that type of discussion want to share our experiences and why we had our removed, as their doctor may not have shared those possibilities with them.
My doctor gave me risk scenarios about the cuff too, things that hadn’t occurred to me — but there are people in this thread saying those without a cuff shouldn’t answer questions about the cuff. I’m (and OP seems to be also) wondering why this seems to often be the case.
- Thread about those who have the cuff: don’t speak up unless you have one.
- Thread about those who kept their cervix: full of comments saying they had theirs removed.
I’ve seen this brought up before by people with cervixes — perhaps those who have a cuff don’t notice it because they’re in the majority, but it seems like threads asking about the experience of cervixes post-hysterectomy are mostly full of information on why it’s a bad idea to keep it and a lot of judgement about any justifications people have for keeping it. Any risk for cuffs seems to be minimised, any positive for cervixes is seen as a “myth”. Both have positives and risks.
That’s the nature of surgery, we don’t know how it will impact us personally. You work out with your surgeon the best approach for your individual case with your individual risk factors and hope it will work out.
I’d just like to see more support for one another’s experiences on here. It doesn’t impact each other if we keep or remove a body part; I wish it didn’t have to feel like this feud.
Maybe we need to make a pinned post about the pros and cons of both so people can be informed and just let the whole debate be done with.
I agree it should be a more welcoming space to share all experiences without the fear of unjust judgment. I gave my reason for when and why I put an answer on the threads. I’m seeing via this thread that my impact is not matching my intention with posting and will change what I share on certain threads from now on. I can’t change what I have done in the past, but learning that this opinion or experience is not what is sought after will change my future posts. My intent was to never judge anyone for what decision they arrived at with their doctor. I appreciate you taking the time to share your thoughts with me.
Thank you for being open, by no means was this directed at you personally though, and I don’t think it’s ever appropriate to judge someone for past behaviour — we should ALL as humans be constantly open to improving. And that goes for those with cervixes too — we can probably be a bit defensive and apologies if I came off that way.
I appreciate your gentle response!
I appreciate you too! I didn’t take it as a personal attack but was apologizing because I’m sure I may have made a comment that was hurtful or felt judgmental to some and that is never my intention.
I think most on this thread can feel defensive of their choices because, at least for me, I’ve had to defend my choices to people in real life even when they don’t even deserve a response. Having this surgery seems to be a very touchy subject for people for whom me personally having this surgery has nothing to do with them. I’ve had random coworkers be angry at me for having a surgery to better my life. 😳 So for me it feels almost an automatic response to go on the defensive about the details of my surgery.
My guess is that probably they have worse experience and that makes them bold? I mean, I do have a grudge against my inner parts because how dare they be such jerks?
I try not to give advice about something I have zero knowledge of. I do state that I wasn't given an option and the reasons behind my doctor taking everything. I would never presume what it's like to keep an organ since all of mine are long gone.
Perhaps people are trying to share their reasons for not keeping their own cervix, but doing a poor job expressing it? That's just a wild guess, though, as I really can't speak for others and their thoughts.
I had my cervix removed because of my doctor’s concern with it, which pathology results confirmed. It would have come out eventually regardless.
Being informed is the best thing so you know what to ask your doctor in case you have the options.
I think we post what it’s like without one because most of us went through the panic of what happens if it’s gone. There are stipulations about making sure it’s healed bc again, a lot of us feel a lot better after surgery and it’s easy to overdo it and delay healing. The fear of having them take it was way way worse than actually having it gone. It’s reassuring but also cautioning what it will mean. I know I worried I wouldn’t be able to orgasm or that I’d prolapse or tear. And all my fears were just fears. I healed great and no negative experiences with sex.
If your question was why do people who removed their cervix comment on those who choose to keep it, I think there are a couple of things to consider. 1. Are they commenting after the person has posted they decided to keep their cervix or did they comment while the poster was considering whether to keep the cervix or not. If there is a decision being made it seems to make sense to hear from both sides. 2. Everyone here has lived with a cervix. Not everyone here has lived without one. So in this weird instance, those who had them removed can actually speak to issues involved with a cervix.
In a way yes, this tracks - you’ve had a cervix and a cuff, but you haven’t experienced a keeping a cervix post hysterectomy (which has its own experience of recovery, was there bleeding, sexual pain etc.)
That’s often what people are asking about — and all of us in this sub can only answer personally about one or the other. I dunno that it makes sense that those with a cuff are informing on what they’ve *heard* about the experience of cervix post hysterectomy, but it’s not really right to share info we’ve heard about the cuff as someone with a cervix.
Maybe it’s best that we all just speak about our personal experiences? I dunno how we get around this issue, it seems to have become divisive.
My curiosity is why respond when the question is directed particularly to people who chose to keep theirs. There's always someone answering the question they weren't asked.
So… OP is clearly wondering — why is the reverse okay? If what you’re saying is true, posts about having a cervix post hysterectomy then shouldn’t be filled with comments from people who had it removed saying why it’s better.
Truth is, there is always one path we don’t know about personally because we chose a fork in the road. We all need to be kinder to one another. Having a cervix or not doesn’t impact anyone but the patient themselves and there seems to be a lot of judgement about “myths” for those who don’t have it removed. Nobody needs to justify why they didn’t choose to have an organ removed.
As far as I can tell, the majority of us hyster sisters had them removed. I had dysplasia, along with a family history of breast cancer - that means I was at an elevated risk for cervical cancer. Between those two things and the adenomyosis that was eating me alive, doc said it had to go. I can’t speak to anyone else’s experience, but that’s mine. My cuff was slow to heal, but it did heal eventually.
I TOTALLY get what you’re saying!!! I’ve made my decision on my surgery with my doctor’s input (who agrees keeping it makes sense for me). I have used the search bar to find answers about certain things to expect after surgery from people who have also kept their cervix. It’s so hard to find the answers I’m looking for because I have to comb through so many answers on posts specifically asking about supracervical surgeries that are about getting rid of the cervix. I love that people want to help, but it really is not helpful adding experiences completely unrelated to the question. I want to add I’m not talking about posts where people ask for opinions on both and what people think is a better option. I’m talking about posts like, “When did you return to work after your hysterectomy if you kept your cervix?”
I had my laparoscopic hysterectomy (took everything except the ovaries) in Feb of this year for suspected endometriosis (suspected by experts, based on my pain level/cycles and past responses to hormonal birth control). Turns out I’d didn’t have endo, but I did have chronic cervicitis (my cervix was inflamed basically all the time, even worse during ovulation/period) so while I picked the ‘radical’ approach of a hysterectomy to address my suspected endo, it turns out if I’d have gone the more conservative exploratory surgery route, I would have needed to have future surgery to remove my cervix to actually address my real problem.
Happy to report that I’m doing great in recovery. I was home day-of (my surgeon looked for me after her next surgery to check in and I’d already been discharged), back at work (desk job, WFH) in 3 weeks with less pain than I had from my pre-surgery symptoms. I didn’t bleed after like 1 day of being home, and had no cuff issues like I’d scared myself reading this sub ahead of my procedure. 8 weeks later I started pelvic floor PT (suuuper recommend), and am making improvements every week (never been terribly athletic in my life)!
I do still have some mood/cramping issues once a cycle (1-3 days), but no more paps, 0% risk of cervical cancer, and no more chronic cervicitis is serving me really well.
I had mine taken out when I hat my hx. Honestly I was worried about it at first, but I can finally have sex properly and not just the tip, because I don’t have a giant bowling ball blocking the way.
I also had the option. I have mild gender dysphoria and not having the cervix I think helped eliminate 90% of my dysphoria.
I haven't had any bad response to not having it so for me it was the right choice.
My cervix was the entire reason for my hysto - it was aggressively trying to grow cancer and had to go, there was no question for me. The rest were really just collateral damage. Kept my ovaries but yeeted everything else. Healed brilliantly, I’m 6MPO now and zero regrets
I had mine removed. No tears. If people listen to dr and not do anything dumb like have sex too early then no risk. Best decision I ever made. I still orgasm and its way better in my opinion.
I think there’s just so much cuff anxiety in general. The main thing I see and I say the same thing too…is yayyyy no cervix means I’ve never and will never have a Pap smear. True, never had one but docs are scary in general and I don’t want anyone looking there.
I opted to surrender any parts of my internal system that had any sort of abnormal cellular growth. Originally I wanted to keep my tubes and cervix, but I have a history of paps with abnormalities and imaging showed that there were some small growths on my tubes.
If I were certain that I’d be able to access quality medical care a decade down the road, I would have tried to keep my cervix. But ultimately, I decided to opt for a more radical procedure now, rather than putting myself through the possibility of more surgery in the future. I’m 54 and in generally good health. I’m now going on 8wpo and feeling great on some days, needing lots of naps on others.
I chose the best course of action for my needs and budget. Sometimes I dislike being American because of the fact that I have to consider budget when it comes to medical care, but here we are…
August 17th will be my one year post op mark. I don’t make comments warning about cuff tears because just doing simple online searches about hysterectomies and risks will provide information that can scare people easily. Between that and scouring the subreddit for information I had gotten quite freaked out about possibly having a cuff tear happen.
I had my uterus,tubes,cervix removed and I still need phap smears once a year to test for cancer so I think it just makes it so I don’t need to get tested for cancer as often: initially I thought my ob/gyn might spare the cervix but he removed it anyways during surgery and I had done a phap smear a week before my surgery so I got a letter from a cancer screening place and was upset because I thought like why do I have to do another surgery but at my in person follow up appointment the ob/gyn said the cervix was removed too and I was so happy.
I had cervical ectropion and aggressive vaginal endometriosis, so keeping my cervix simply was not an option.
My mother was worried about cervical cancer, so she nixed hers.
Our health history means we are simply safer without it, but that may not be the case for many, like preventative mastectomies for those at high risk of breast cancer. Getting rid of the cervix was just the safest and smartest option.
I never knew people kept their cervix. My surgeon basically told me that if I kept mine, it’d eventually lead to issues so it’s common sense to take it out. All I wanted remaining were my ovaries and vagina. Everything else got removed. I’m debating going back and having my ovaries removed but idk if that’d then make me have to live a life of being on hormones
My cervix was chronically inflamed. I didn’t want something hanging out in my body that was always inflamed. If it wasn’t - I still would have had it removed - why? I feel like it would serve zero purpose for it to be hanging out in there. 🤷🏻♀️
I’m two years post op and didn’t keep mine. I had many massive fibroids throughout my uterus and I didn’t want the chance for them to grow on my remaining cervix. Technically it’s basically the same type of tissue and they can grow there. I did t want to have surgery again in the future for the same thing. No uterus, no need for the neck of the uterus either!
I wasn't given an option. My main issue was large fibroids and my surgeon explained that if she left the cervix there's a high incidence of the body just aggressively making more fibroids on the remaining tissue. So I got the cuff. My body did respond that way and made growths on the ovary. Not had any cuff issues and I'm fine to have lost the cervix. I think it's normal for people to be nervous about getting a cuff because it feels more like messing with the vagina.
I had a good cuff experience but it isn't the choice for everyone and at the end of the day it's going to come down to an individual and their doctor.
Someone posted a very good thread about actual data on cuff issues today and it's a very good resource for those worried about it or exploring the option.
I had my total hysterectomy November 2022. Just did my first pap but not the smear portion mainly a cuff check and pelvic exam. She said since my past Pap smears were not abnormal she didn’t think she would need to. I might have her do it next year tho to be on the safe side. However, I did choose to do a cuff vs keeping my cervix bc I’m 45 and felt it would be more harmful to keeping it due to family history of cervical cancers. This way I don’t have to do surgery a second time.
My surgeon gave me a choice. I chose to have mine removed mainly due to the high risk of cervical cancer in my family. I also had abnormalities where it just made more sense for me to have it removed.
Got mine done yesterday and I'm so glad it's over with.
What was the question? The only things I have after surgery are my two ovaries.
I was on extended bed rest because my recovery didn't go well and it's still not well. I was never cleared for sex because my ob/gyn didn't did her job effectively for after surgery care.
So my husband and I waited 5-6 months after surgery to have sex but then had to stop because I had another abdominal surgery. Waited another 5-6 months.
So I never had cuff repair. And no one has checked my vagina canal or cuff since 3 weeks after my TAH 17 May 2022. (Shrugs)
I love reading everyone's situations. Every woman is different and has her own reasons. The question was more why do you answer questions about keeping it, not why you kept it.
My surgeon gave me the option! I was like, “if you take it, where do…things…go? Will I turn into a puppet?” 😂 I decided to let him yeet it because NO MORE PAPS!
The kids just make a u-turn and exit onto the sheets, toilet or in your undies 😂
Yep! I actually jump in the shower for a minute with the handy spray hose because it’s easier than toilet paper down my legs. All clean!
Oh my god I’m so confused
Like a boss!
What are ‘the kids’?!
Sperm.
LMAO
The kids!!🤣
Not a puppet 😂😂😂
He laughed, thank god!
My doctor called it a tube sock😆
I call it my dead end. 😂
It’s my cul-de-sac 🤣
Damn, you're lucky! I still have to get my annual every year and pap every 2 years, even without my cervix. I did ask my surgeon a very similar question though😂
Wait, you are being given paps even though you don't have a cervix?
I will still get them as my surgery was due to cervical cancer. They call it a vault smear 🤢
THEY CALL IT WHAT 🤣🤣
Isn’t it the worst? Gives me the ick
Oh wow and I thought ghost period was the weirdest new term
What a name.
So hideous.
I still have a cuff, which means every couple of years (due to my medical history) I get a pap. This year is my off year, thank goodness Eta: most are not required to continue having a pap, even every couple of years. My own personal medical history and the cancer risk in my family means i still have to endure and get an annual exam every year, my doctor only does the pap every 2 years though
The cuff should still be checked for prevancerous cells.
Agree. My obgyn said I still need to get them too even though no uterus, no cervix and no fallopian tubes here.
My guess is because removing the cervix sounds scary, but the vast majority of people who have a hysterectomy had their cervix removed. So I always assume it is more of a "it's not as bad as it sounds to remove it!" vibe instead of "ahh life is awful if you leave it" vibe. But I also have a habit of assuming the best in people 😅
We all need to be like you and assume the best in people! That is a wonderful trait!
Yes this, This is exactly how I see it too. I am not sure about the intention behind OPs post tbh. At the end of the day, this is a forum where we all come together to chime in and help one another. If a post specifically asks for everyone else to abstain and only wants people with their intact cervix to reply, then ofc I understand. Otherwise, I also enjoy having a variety of feedbacks in the reply section. Most importantly, we’re not entitled to people’s time and them sharing their experiences. I am always super grateful that people take precious moments out of their days to contribute to this forum Lastly, this post isn’t about me but just wanted to say that I am quite attached to this forum as this is the main reason how I was able to survive the dark days of going though a hysterectomy and then the recovery part all alone. 🫶🏾
❤️
To be fair, that's not an issue that's confined to this sub. I think it's just a Reddit thing. "Doctors of Reddit, what's the most interesting medical case you've seen?" "Not a doctor, but my mom's friend's boyfriend is a lawyer, and he had a client once that was a vet tech....." I'm always so befuddled lol
My perception is really different from yours. I didn’t keep my cervix and when a person posts something that legitimately seems to warrant opinions/experience pro/con and I answer it’s actually pretty common for someone on the pro-cervix team to comment *under* my comment about how great the cervix is. I would really rather they just make their own comment. This is personal opinion, but I think that lately this sub has really gotten people worked up into cuff anxiety in ways that aren’t helpful to many people. I’ve seen people with cancer that are more afraid of having a cuff than not getting all the cancer out. I’ve seen people 6 MPO that are afraid to live their lives. A lot of us end up needing to have the cervix removed. If I think someone might benefit from hearing that it can be absolutely fine (in fact is fine most of the time) I’ll tell them so.
Honestly, yes. This sub has made me so petrified of cuff tears. I had my surgery on 5/29 and I constantly think about it and the thought freaks me out sooo much. I also agree with your point about people making their own comments instead of commenting under my comment; people will say, "I'm not invalidating your experience, but..." and then write about their experience that's opposite to mine or irrelevant to mine. Like please, just make your own comment...
I’m almost 1 year post op. Follow your doctor’s recovery to the letter, be conservative about it even. Insist that they look at their handiwork at 6, 8, or 12 weeks - whenever they’re going to release you for activity. Once they do, start slowly but start! Lift things. Have sex, if that’s part of your life. Get out and move. Living your life is the way to get confident. My external incisions are barely even visible anymore! There’s no reason to believe my inside incision isn’t also healed.
Thank you, I appreciate that 🙏🏼
This is so important!
I hope your fears go down with time. I had my surgery 1.5 years ago. No scares of a tear or issues with one. I don’t have a cervix either. I think there are more like me but since we have nothing to report we leave the sub and the ones who live in fear or have had it happen sound so much louder. (Think of it reviews for anything. It’s either the really good or really bad, the it went according to plan people rarely make a review).
Totally. I definitely know that the loudest voices in spaces such as these are people who are being inquisitive or are documenting experiences that may not be the norm. A hysterectomy is a very common procedure and I know most people's surgeries go well and they heal just fine. I just tend to be a more anxious person who spends a lot of time researching, which can be a downfall. I have medical trauma so it all kind of comes from that too. I'm glad you're doing well, and thank you!
I understand your concern, I truly do. I've been there, many times. But after 17 years post-op (I was 25 when I had my complete hysterectomy and ooporectomy), I've come to peace with my body, I've never torn and cuff tears are extremely rare (1% or less of patients experience one). You're still getting used to your new body and self post-op. Give it some time and know that the odds are in your favor of NOT having a cuff tear.
Thank you 💗 Appreciate your comment!
Not to mention, we're all individuals with individual health histories. Not all of us are even given the option, I sure wasn't.
I get tired of seeing people post comments like, don’t let your doctor take your cervix or it will ruin your life!!! I am thrilled that mine was removed but according to OP, I guess I’m not allowed to comment. 🙄 I always worry about people keeping their cervix because HPV and cervical cancer is so common among those of us old enough to have missed the vaccine. I don’t understand why you’d want to keep your cervix when you are already having surgery and keeping it serves no purpose AND it could kill you.
I don’t really understand what your question is
Same. Came to say this.
Glad to see I’m not the only one.
Happy cake day!
Thanks! 😊
I'm also confused. She said there's a question in the title but neither paragraphs have a question mark.
She is asking why people who have had a total hysterectomy answer questions people ask specifically about a supracervical hysterectomy.
I had my cervix removed because of cancer risk, and basically, the cervix is the lower part of the uterus, so if there is uterine cancer, it can be in the cervix. At 66 I just didn't want to deal with any more cancer worries and biopsies. I read up on cuffs, and cuff tears, and they seem to be pretty rare -- much less frequent than this board suggests. I think there is too much worry around cuff tears than actually happen. YES, you need to be careful after surgery. But the incidence of a bad outcome is pretty low. We're all scaring ourselves for no reason.
Same. It had to go. 57. And I agree about the relative risk.
I don't think I've commented on posts where people have specifically kept their cervix/ want to keep their cervix and are looking for info or experiences about that. I will say that if someone is trying to decide whether or not to keep theirs, the reason I had mine removed was because I had endo growing on mine and so keeping mine seemed like more of a con than anything. Any other endo folks may want to consider that as well. Otherwise, my mom kept her cervix and she never had any bleeding or issues after her surgery at all.
This is what happened with my cervix, honestly I don't even notice it's gone🤷🏼♀️
I think this question is best left up between the patient and doc. What does the doc say? Will they even leave the cervix in when doing their procedure? Keeping your cervix because of some mystical belief about its purpose is just so stupid. If you had lung cancer are you telling your doc, just keep the little piece on the right. If you have uterine cancer, it can be in your cervix, too. Listen to your doc. You're not the doc. Listen to your doc.
I'm not sure what this has to do with my comment?
I wholeheartedly agree that medical decisions should be made in collaboration with the doctor and the individual patient. But I do not agree with invalidating another persons belief about their own body. To call a belief “stupid” shows how narrowly you view the spectrum of beliefs people have about the body and what is ok to do and what not to do. I used to follow the same line of thinking and would blindly follow whatever advice or medication the doctor was giving and asked no questions. They were the “authority” and that made them somehow all knowing. And that line of thinking has taken years off of my life because of careless mistakes from those “all knowing doctors.” If the doctors won’t give a space for the patients to ask questions or express their own beliefs about the body and be willing to collaborate with them, where else can they get those questions answered? It’s completely normal to go to another source to try and find the information. If doctors want patients to go to them with questions or concerns and not to the internet, then they need to figure out how to answer the questions in office without brushing off their patients or just straight up ignoring us. They need to do the work of reading different studies and being up to date on all the latest research. But let’s be for real, and come back to earth. Doctors are not all knowing and they have the same 24 hours in a day we all get. It’s nearly impossible to stay up to date on every little nuanced disease and all the research that’s happening. Wouldn’t be a much better system if doctors lost their ego about knowing all and accepted that the patient has done research about the symptoms they’re experiencing. Maybe they could see the research as a patient taking an active role in bettering their health, instead of fearing what they have found from Dr. Google. If that research topic didn’t apply to that patient, wouldn’t it be better to have a conversation about what the research shows and how that varies with the patients presentation? What a completely different view I (and probably many others) would have on healthcare workers if they could stop pretending they’re the only ones with access to knowledge. If the symptoms don’t seem to fit their algorithm, maybe work with the patient to figure out what is going on instead of brushing off very real symptoms and presentations as “faking” or “drug seeking.” It really would be a different world if doctors and all healthcare workers stopped using the oppressive system that has been built to “weed out the ones faking, lying, or only have anxiety.” I do have health anxiety, but that anxiety is never relieved by being told how unrealistic that fear is by someone who is cold and uncaring. But an honest conversation with a professional who can meet me where I am at and help me understand what is happening in my body, does help relieve my anxiety. I am not a doctor. That’s correct. But my belief is that the doctor is the expert in their field of medicine. I am the expert on my own body. They do not have the lived experience of being in my body 24/7. I do. A patient’s beliefs about their own body needs to be respected, and not only allowed but actively invited into every conversation about what options are available. Doctors do not have to live with the results of whatever medication was given or procedure was done to another persons body. But the patient does. Which is why I am a huge advocate for active collaboration with the patient and their medical team to decide what is the best course of action is, for that individual patient. I will happily give every doctor the respect that they have earned, when they earn it. But I will not hand over my autonomy to another person just because they have some extra letters after their name. And I sure as hell won’t listen to another human being who actively dehumanizes me when my views do not match their own beliefs.
I reply because most people who make the decision to keep their cervix is out of fear, or misinformation. I have a cuff and my quality of life in general, and sex life specifically is 10000% better now than before. I just want people to know they don't have to be afraid of the cuff. My gyno STRONGLY suggested removing, and I REALLY REALLY REALLY didn't want to I was ABSOLUTELY TERRIFIED of sex being worse etc... but 100% of my fears were unfounded. I'm glad I listened to my surgeon (who she herself also had a hysterectomy, and her cervix removed, so she spoke to it on a personal level which gave me so much more confidence to have it removed)
This. I also think the people that have sexual dysfunction afterwards are actually suffering from a hormonal issue. I don’t think it has anything to do with the cervix.
I agree about the sexual disfunction. Sex is SO psychological, too, that it could be a mental factor as well.
I agree!
i think it is likely because most of the people on here had theirs removed but still want to help if they can and sometimes the questions can be answered despite the surgery being total or supracervical. what i can say is i have been reading this reddit for a year now while preparing for my own surgery and i have noticed that a lot of people think the healing time is shorter with the supracervical however i have read many many posts to the contrary. i believe it really comes down to wanting to help in a way that ensures the poster is fully informed.
I think manner of surgery is also a huge indicator of recovery time. I had a vNotes procedure and I honestly was great after a week. I didn’t lift anything heavy and waited to have sex for 8 weeks but other than those two restrictions, I was feeling amazing post surgery despite having everything removed but the ovaries. My pain was limited to surgery day, and day 2. I spotted once on surgery day but it was like a drop of blood when I was home. For me the post surgery constipation was the real devil and coming off of that anti-nausea patch with my vision. Life has been a breeze since surgery and I’m so relieved and happy I had everything removed that needed to go. Plus my last yearly was so fast and easy. No more paps is HELLA AMAZING.
i had TLH with BS and i came home with a catheter for 3 days and my recovery has been very easy (knock on wood as i am only 9 days postop) i have not taken anything other than regular strength advil since whatever was given during surgery, i have not need the pain meds at all and other than my restrictions i am doing everything (not everything lol more like walking around my property, sitting on my deck and helping with little chores when i can) so cervix or not i feel like my personal experience has been smooth.
May your recovery continue to be fast and smooth!
I think also sometimes people just want to educate so people can make an informed choice. Some people on here speak about the cervix as if it’s a separate thing but in reality is basically part of the uterus so if you have problems related to your uterus there is a chance you will still have those problems if you keep it. Basically it’s not so highly recommend to be removed for no reason. Ultimately it’s always a persons choice when it comes to what they do in regards to their body. But for myself I always just want to feel fully inform before making a choice and sometimes doctors don’t explain all the aspects super well so people here do it instead.
Hello friend, I fully agree that most doctors do not provide enough information for women to make decisions optimally. Many doctors are not aware of the potential sexual side effects of hysterectomy, whether supracervical (SH) or total hysterecgomy (TH). My surgeon who has been performing hysterectomies for more than 20 years, four or five days a week, had no idea that during orgasm the cervix dips imto the vaginal canal (Ref. Kinsey Institute). When I told my doctor that I wanted a LASH, she asked why because the TH is most commonly done. I had to present my arguments. She agreed with me after we spoke and said she did not want to remove anything I did not want to remove. My cervix is healthy, and I have no pre-existing risk of factors for cervical cancer. Before my fabulous LASH in January, I was given no articles or direction to any info regarding sexual satisfaction after my procedure by my surgeon. IMO, this should be standard information presented to women. Instead, I had to rely on my educational background to search through PubMed and other peer reviewed article sites. Many women do not have the luxury of being able to do that or just don't know how. Your statement that "there's a chance that your cervix will have the same problems" is correct vs no cervix. However, there is also a small chance that a cuff will have problems too. The post surgical outcomes seem to be nearly identical. (https://pubmed.ncbi.nlm.nih.gov/30910330/) There are some studies that show women who kept their cervix are happier sexually afterwards. (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC65528/#:~:text=Forty%2Dthree%20percent%20(n%20%3D,%3D%202)%20of%20SCH%20patients.) However, there are some studies that show an equal satisfaction rating. It's so individual! Do you have any links to peer reviewed articles stating that if you have problems with the uterus, there will statistically be more problems with the cervix as opposed to women who did not need a hysterectomy? My surgeon did not believe there was a large risk. She said the percentage of women experiencing problems with their healthy cervixes post hysterectomy was so low that she could not give me statistics. She had to dig and she still could not find anything. In some women, there's a possibility albeit a very rare one of growing fibroids not on the uterus or on the cervix. For example, this woman had one grow in her vaginal wall. I've seen studies where they grew in the abdominal cavity even without a cervix. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4149111/ In a very small proportion of women (.4% according to some studies) may grow fibroids back on their cervix. I was willing to take that risk. I respect it another woman does not want to take the risk, though. This research indicates that a laparoscopic abdominal supracervical hysterectomy is slighly superior in terms of less urinary infections post surgery vs the TH. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8396917/ The cervix has its own area of the medial cortex that triggers during stimulation which is distinguishable from stimulation of the vagina, clitoris, and nipples. It really is its own thing sometimes, at least according to the nerves it is. The vagus nervous connects to the cervix, but not the upper body of the uterus. It should definitely not be removed without a lot of thought.
I don’t know why you picked my comment specifically to do this on. Like I said it’s ultimately a persons choice to do whatever they want to do. Op asked a question and I answered. In my case I have stage 4 adenomyosis, so if I were to keep the cervix that would still be an issue. I doubt I’m the only woman in this thread with that same issue. I’m not gonna go through major surgery only to be left with more pain on the other side because I’m afraid of a cuff, or a “diminished sex life” When talking to real women in my life who have had hysterectomies none of them have had issues with their cuff or their sex life. I take those conversations as having value. You sound awfully defensive towards someone who said “it’s your choice” I also never said there weren’t issues with the cuff, they are just more wildly educated on by surgeons and that’s the difference…
I was worried about losing my cervix but I’m glad it’s gone. I always had a tender cervix that at times caused pain during intercourse. I am now 4 months post-op and can say that the sex is so much better. I didn’t realize how much pain I was having until the uterus and cervix were gone.
The simplest answer is that the majority of surgeries (at least ones that get posted about here) have had it removed. So people can only speak from that perspective but still want to offer insight into if that was a good or bad decision for them. For some it was an excellent decision (like myself) and for others they have dealt with tears, infections, discomfort or pain, prolapse, or loss of sexual function/sensation. So for those like me we provide the reassurance that it's possible to have it removed if that's the direction someone decides and they could be alright. Others are providing their experiences that maybe keeping the cervix would be a better option because they had x, y, z complications with their removal. I will say that if you kept your cervix then you can't speak about cuff tears because you don't have a cuff. A cuff is formed surgically when the cervix is removed. So the only people that can speak to the benefits or the downsides of a cuff are those that have experienced having one. You could speak to the benefits you've had while keeping your cervix and the healing process as well as symptoms you've experienced with keeping it.
I wasn't a candidate to keep my cervix and I always remind people that their body might decide yes or no for them. My cervix was actually horrific. The surgeon said this during surgery. I woke up during so I wasn't supposed to hear "What a horrific cervix." I got therapy and no sign of PTSD from that experience since it is a scary thing but due to my life not that bad goes here. I try to tell people they need to assess with their doctor because there's a ton of reasons to keep or to get rid of the cervix. That period risk was why we already planned to get it gone as well as the high risk of cervical cancer in my family. Then it did some things unrelated to cancer that were just wild. It had multiple openings, some random tube like structures that tried to make new openings, was twisted the opposite direction of my twisted uterus, and more. The concern of a tear or less sexual satisfaction were not ones for me. I can't control the future but I can do everything possible to ensure I heal well and take care of myself. I couldn't have sex due to the whole "Get mildly horny and you will begin to hemmoragh" thing. There's a lot of "Made to order" in hysterectomy talk that seems to forget that there's a strong possibility we don't get a say.
My surgeon told me no when I asked. Didn't press and didn't want to shop around for the option. Good call. I had a cervix just riddled with what shouldn't be there. Cuff is fine, sex is great. I don't even think about it anymore. I'm back to normal activities and hobbies (horseback riding and strength training)
My experience as well! We didn't even know all the fuckery going on in my cervix until it was out.
because if you kept your cervix, commenting about the cuff is meaningless. people who got rid of their cervix can't have them put it back or grow a new one. people who are on the fence about keeping their cervix should be informed about the risks. some people might not know that mini periods can occur. imagine if you didn't and then you had surgery but still had mini periods. that might be really upsetting. also, cervical cancer is nothing to balk at. it's cancer. you could die. that's not a controversial statement. I've seen lots of comments of people with cuffs who are just trying to be reassuring to those on the fence *because* cervical cancer is a risk. it's easy to be really scared about the cuff because we are so much likely to hear bad stories than good. an unremarkable recovery is less likely to be remarked upon. sharing positive stories is a way to combat that for people who might be on the fence. I didn't keep my cervix, but for a while my anxiety over the cuff made me wish I did. if someone is that committed to keeping their cervix I'm not gonna argue with them. but people should know the risks, and being reassuring about the cuff to a person may ultimately end up with a cuff is not a bad thing.
If a woman has had pre-cancerous paps or she has the brca2 gene, I would yank it in the heartbeat. My best friend has the brca2 gene and had a radical hysterectomy 6 years ago. She says her sex life is better than ever was, and it was really epic before. To counterpoint that, I really wanted to keep my cervix, it's healthy, and my body was telling me to keep it, so I did. If keeping the cervix is an option not contraindicated by health reasons, those making the choice should be aware of the potential sexual side effects. In general, there is a slightly higher rate of sexual satisfaction in women who keep their cervixes. Is also pretty unique to United States to do the total hysterectomy. In Eirope, the supra cervical is standard. Info re: sexual satisfaction in both types of patients https://www.bumc.bu.edu/sexualmedicine/informationsessions/sexual-dysfunction-after-hysterectomy/ More information on the potential side effects of hysterectomy, both supracervical and total: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3090744/
I had my doctor take it all (ovaries too). I just turned 49 and can manage with hormone replacement. Since my uterus loved to grow crap (adenomyosis) and I did have cancerous cells ten years ago it wasn’t worth keeping. Orgasms are still fantastic and I just don’t miss it. I also didn’t want to run the risk of bleeding because it can happen if you keep your cervix. I figured if she was in there to just take it out and I was close to menopause so leaving anything that could potentially grow cancer didn’t make sense to me. I don’t care what others choose to do and am here to give my story and four months post surgery I’m loving life!!
My doctor had me at “no more paps” Plain and simple for me lol 😆
Well for one thing, there’s so much disinformation about how keeping it is integral to orgasming, among other myths which leads to resistance to removing it—the gold standard recommended by the top women’s health physicians and academics in the country. I encountered all those “warnings” and more, which is how I ended up with my surgeon teaching me about what a bad idea it is. Also there’s a considerable amount of regret when keepers end up having to do paps, get endo, cervical cancer, or in some awful cases grow fibroids on a bit of flesh that should’ve been removed. There is a dearth of information on woman’s health and that is both infuriating and even deadly. We’re trying to set the record straight.
I think it’s important to set the record straight, absolutely, but I also find it saddening that the general consensus on this sub seems to be that cervix removal is the best option for everyone, and discussions and threads about those who kept their cervix are mostly filled with those who have cuffs. I didn’t have mine removed, I wouldn’t feel it appropriate to tell my story in a post asking for experiences about having a cuff, but it always seems to be (as OP said) that the comments in cervix discussion are filled with people with cuffs dismissing any value to the cervix. Merely wanting to keep as much of your body in tact as you can (if it’s healthy) is just as valid a reason as any. I just wish there was a little more support for everyone finding their own way. We’re all having these surgeries for such varied reasons and we should be respectful of one another’s choices. Whilst you’re correct that some women regret keeping their cervix, some also regret removing it. The cases for regret should inform our choices — sure, but they won’t always be relevant to us personally.
Because an enormous amount of people ask some variant of “did you doctor give you a choice?” Or “why did you decide what you did?” My doctor did give me a choice so I will respond when people ask those type of questions. If it’s “only those with a cervix respond” then no I wouldn’t respond.
From my perspective, it's because, as someone put it, the cervix by itself is nothing but a cancer bomb waiting to go off. That's the primary reason I wanted mine gone. Yeah there's the blood and the cervical mucus/discharge, but in reality, I think the biggest reason to get rid of the fucking thing is the cancer risk. So to answer why, I like to remind people that hey, *cervical cancer is a thing!*
That is simply not true though. It is absolutely not a "cancer bomb" waiting to go off. No more than your skin or your pancreas is, much less even. "In 2022, it is estimated that a female has a 1 in 180 (or 0.56%) risk of being diagnosed with cervical cancer by the age of 85. In 2020, there were 165 women aged 25–74 who died from cervical cancer, which is a mortality rate of 2 deaths per 100,000 women in the population."
>No more than your skin or your pancreas is Maybe so, but I can't just get rid of those. Without a uterus the cervix is pretty much useless, and there still is a risk of cervical cancer, whatever those chances might be.
I had my cervix removed. I don't offer opinions on whether people should or shouldn't because I really think that's a doctor/patient conversation. That goes for either keeping it or removing it! We can't possibly know everyone's personal risks, needs, or preferences. I will say that I made my choice because I personally had no use for my cervix, had no risk factors that made me lean towards keeping it, and the only thing it could have done for me was become a potential cancer site. Mini periods and pap smears weren't a concern for me either way.
I believe it is because most people who have had hysterectomies and had their cervix removed simply do not see a downside to it. I know my surgeon told me it was very important to take it out as cervical cancer is a very scary and quite common problem for women. I honestly don’t feel any different with the cuff whatsoever, so why would I not have had the cervix removed?
I went back and forth on having mine removed until I voiced my concerns to my doctor and she completely wiped away all my worries and I became more than determined to have my cervix removed. I had my hysterectomy 5/31 due to Adenomyosis. She said adeno and endo can also be in the cervix so if you leave it, you chance having the hysterectomy for virtually no reason because you could still have it there and it will cause pain/symptoms. You also risk still having periods. Though lighter, you can still bleed. You also still have risks for cervical cancer. I was also told that if I don't remove the cervix, she couldn't go vaginally/laparascopically and would have to open up my abdomen and therefore have a much longer recovery time and probable abdominal scarring. She also said that "shortening of the vagina" from removing your cervix isn't true. If anything, it elongates it. Also, depending on the structure, a lot of women have pain with deep penetration and it's mostly due to the cervix. I was one of those! I was told I will no longer have an issue with it being gone! Honestly, so many more pros to having the cervix removed. Just because you see things on the internet doesn't make them true or even true for most. The internet can be a resourceful tool, but it can also hurt a lot of people for no reason whatsoever by giving people completely unnecessary anxiety.
I think for a lot of people who speak up like that, that specific piece of information is the one that talked them into the procedure, like the checkmate in their own decision. It's less often you have a checkmate sort of reaction to keeping it. ETA: it wasn't a planned procedure in my case so I had very little time to decide what I wanted, and the nature of my situation meant that I never ever ever wanted to have the possibility of bleeding from there ever again 🤣 it was horrifying to think it could potentially bleed whenever it wanted AFTER the procedure, so it was a checkmate for me.
My GYN/oncologist advised removing everything, because I had a fast-growing tumor that was possibly malignant. And there was something about how the tissues of the reproductive organs are very similar, and a cancer in one sometimes indicated another. Or something. It's been a few years & the details have faded. Usually I'm a very inquisitive & informed patient. But I was so freaked out by the cancer possibility that my reponse was basically YES YES RIP IT ALL OUT. I was already post-menopausal & had no use for them anyway. The tumor turned out to be benign, but the ovary that grew it was cancerous. It was caught early, and I did a course of chemo to boost my odds. I regret nothing (about the surgery).
A lot of people get a hysterectomy due to endo, adeno, cancer, or period related dysphoria and in those cases I think it's worth pointing out that a supracervical procedure may not solve their problem. If someone has already made up their mind I don't comment, but more often I see posts from people who are on the fence because of cuff anxiety. Cuff problems are overrepresented online because people with no post-surgical complications normally stop posting and just move on with their lives. I think people who've had positive experiences comment so much to try to balance out the scary posts because the truth is that the majority of people have zero cuff complications. Sometimes a poster is just needs to hear "no your organs aren't going to all fall out and yes your sex life will be fine".
I couldn't wait to yeet my cervix. I was like "please lengthen the runway!" But I had insane adhesions and my cervix was colon were enmeshed and now I'm stuck with the thing.
Upvoted for “yeet” and “please lengthen the runway!” 🤣
I don't remember if I've ever commented on a post with questions for people who kept their cervix. I don't think so. If I did though it would only be for the reason another person has stated, seeing someone desperate to keep their cervix because they're scared of cuff tears or other complications that are very very unlikely. Even on this post someone has said that removing the cervix causes a "huge" risk of prolapse, which is patently untrue. If you want to keep it and your surgeon agrees, excellent. I'm not going to warn anyone off that - personally I never found smear tests to be that unpleasant and a mini period wouldn't be a big deal after years of normal periods. If my surgeon had not recommended I lose it (size, type and position of fibroids), I would still have it. I just don't want anyone to fight to keep it against their surgeon's advice, for the wrong reasons.
They took my cervix, and I've never had a torn cuff. I'm not sure how one manages to tear it, but apparently I don't engage in that activity. 😅
I think those of us who have had a total hysterectomy answer because we want to share what we have learned from our doctors and our personal experiences. For me, if the question seems to be coming from fear, I generally will answer because I’m guessing the surgeon didn’t take the time to answer any questions or reduce their anxiety by giving them facts. This is my own bias because of the surgeries I have had previously and had to use the internet because the surgeon did not/would not answer those questions. I have a history of medical trauma and I was so incredibly lucky to find a surgeon who knew that and when talks of a hysterectomy were happening, he opened up time and space for me to ask questions or to talk about the fears. After I had expressed what was going through my head and keeping me up at night, he then went through each fear/question and answered them with his expertise and a knowledge of my past complications so that I could have a more complete answer of what was something I really needed to be aware of or concerned about and which ones I could let go of because my risk for that complication was unlikely. I know that many people, especially in the US do not have surgeons like this. So I answer on occasion to hopefully give a clearer picture and help ease another person’s anxiety. I’m not trying to answer to clutter up the feed. I’m answering with the hope that my experience can be of help to another person. I also recognize that the majority of people on this subreddit are either here prepping for surgery or they’ve had complications from this surgery and want others to be aware of what can happen. Most of the people who have a “standard”, uneventful recovery don’t stay on this sub because they don’t need it anymore. I’m somewhere in the middle, my recovery has been 95% uneventful but things have come up and it’s nice to be able to have a place to come and talk about it, because I don’t have anyone in my circle who have had this surgery and so have no idea what I’m talking about. But I’m not super active on the sub like I was pre-surgery.
Because once it’s gone, all the risks it carries goes with it. Some people want to keep it and don’t understand what it means - that they can still get cervical cancer and fibroids and still have adenomyosis and that if it needs to be removed later it’s a major surgery that can be worse than the hysterectomy itself. I believe the hysterectomy itself also has to be abdominal. Conversely, cuff tears are extremely rare. As in none of the doctors I’ve discussed a hysterectomy with have ever had a patient with a tear. Everyone has to make their own decision but people choosing a cuff know there’s a slight risk of a tear down the road. Thats the only risk. People wanting to keep their cervix don’t usually know that that means long term and the risks they’re signing up for. So people chime in and let them know.
I think a few points should be slightly tweaked here — The cuff tear isn’t the only risk, there is an increased chance of prolapse in cuff vs cervix. Women who don’t keep their cervix *may* also struggle with lubrication or sexual dysfunction. More short lived, but there is a delay in recovery for cuff vs cervix in terms of how long to wait for intercourse post surgery also. That doesn’t mean these bad things will happen, but like the things you listed for keeping the cervix, it can. The hysterectomy itself doesn’t *have* to be abdominal. Vaginal hysterectomy can still be performed whilst keeping a cervix but it usually needs to be requested with a surgeon who is familiar, as it isn’t the standard. However, it’s important for everyone weighing up both options that everything is *may happen* — we truly don’t know how any operation will impact us personally. I think we all have these surgeries for such different reasons and have different symptoms and histories, and that needs to be weighed up.
"The hysterectomy itself doesn’t *have* to be abdominal." _____ Sometimes it does, depending on the reason for surgery. For example, I learned from my surgeon that laparotomies are associated with better outcomes for those with cervical cancer, so that's the method used. Here's one example of the research: Rodriguez J, Rauh-Hain JA, Saenz J, et al Oncological outcomes of laparoscopic radical hysterectomy versus radical abdominal hysterectomy in patients with early-stage cervical cancer: a multicenter analysis International Journal of Gynecologic Cancer 2021;31:504-511. https://ijgc.bmj.com/content/31/4/504
I get that it sometimes does, but it doesn’t in every case - some are performed vaginally/laparoscopic. That’s all I was adding — it isn’t always an abdominal surgery.
Yes, and that's an important point to make. I was just adding this particular example, especially because it came as an unhappy surprise to me that I wouldn't be able to have it done laparoscopically.
I think you misunderstood something. It's cuff OR cervix. If you have cervix, you don't have cuff. And vice versa.
I know that.
It seems like you’ve misunderstood what they’re saying. Where did OP say that you can have both a cervix and a cuff?
Fair enough. At first glance it seemed to be about her confusion and a genuine question. Now I can see that it's just a wee bitching.
I think it probably is both — the question is why people with cuffs seem to be the most vocal participants on threads asking about the experience of keeping your cervix after hysterectomy.
I’m guessing that when people answer and had it removed, their doctor gave them information about their own personal risk of cancer, endo or adeno continuing to grow, etc. that had not occurred to them until their doctor answered that question for them. So when the question about keeping the cervix is asked and is posed as a what did your doctor say or did they give you an option, we who had that type of discussion want to share our experiences and why we had our removed, as their doctor may not have shared those possibilities with them.
My doctor gave me risk scenarios about the cuff too, things that hadn’t occurred to me — but there are people in this thread saying those without a cuff shouldn’t answer questions about the cuff. I’m (and OP seems to be also) wondering why this seems to often be the case. - Thread about those who have the cuff: don’t speak up unless you have one. - Thread about those who kept their cervix: full of comments saying they had theirs removed. I’ve seen this brought up before by people with cervixes — perhaps those who have a cuff don’t notice it because they’re in the majority, but it seems like threads asking about the experience of cervixes post-hysterectomy are mostly full of information on why it’s a bad idea to keep it and a lot of judgement about any justifications people have for keeping it. Any risk for cuffs seems to be minimised, any positive for cervixes is seen as a “myth”. Both have positives and risks. That’s the nature of surgery, we don’t know how it will impact us personally. You work out with your surgeon the best approach for your individual case with your individual risk factors and hope it will work out. I’d just like to see more support for one another’s experiences on here. It doesn’t impact each other if we keep or remove a body part; I wish it didn’t have to feel like this feud. Maybe we need to make a pinned post about the pros and cons of both so people can be informed and just let the whole debate be done with.
I agree it should be a more welcoming space to share all experiences without the fear of unjust judgment. I gave my reason for when and why I put an answer on the threads. I’m seeing via this thread that my impact is not matching my intention with posting and will change what I share on certain threads from now on. I can’t change what I have done in the past, but learning that this opinion or experience is not what is sought after will change my future posts. My intent was to never judge anyone for what decision they arrived at with their doctor. I appreciate you taking the time to share your thoughts with me.
Thank you for being open, by no means was this directed at you personally though, and I don’t think it’s ever appropriate to judge someone for past behaviour — we should ALL as humans be constantly open to improving. And that goes for those with cervixes too — we can probably be a bit defensive and apologies if I came off that way. I appreciate your gentle response!
I appreciate you too! I didn’t take it as a personal attack but was apologizing because I’m sure I may have made a comment that was hurtful or felt judgmental to some and that is never my intention. I think most on this thread can feel defensive of their choices because, at least for me, I’ve had to defend my choices to people in real life even when they don’t even deserve a response. Having this surgery seems to be a very touchy subject for people for whom me personally having this surgery has nothing to do with them. I’ve had random coworkers be angry at me for having a surgery to better my life. 😳 So for me it feels almost an automatic response to go on the defensive about the details of my surgery.
Oh totally, it’s a whole “women as incubators” societal thing, blurgh.
My guess is that probably they have worse experience and that makes them bold? I mean, I do have a grudge against my inner parts because how dare they be such jerks?
I don’t quite understand, sorry. What do you mean by worse experience?
I try not to give advice about something I have zero knowledge of. I do state that I wasn't given an option and the reasons behind my doctor taking everything. I would never presume what it's like to keep an organ since all of mine are long gone. Perhaps people are trying to share their reasons for not keeping their own cervix, but doing a poor job expressing it? That's just a wild guess, though, as I really can't speak for others and their thoughts.
I had my cervix removed because of my doctor’s concern with it, which pathology results confirmed. It would have come out eventually regardless. Being informed is the best thing so you know what to ask your doctor in case you have the options.
I think we post what it’s like without one because most of us went through the panic of what happens if it’s gone. There are stipulations about making sure it’s healed bc again, a lot of us feel a lot better after surgery and it’s easy to overdo it and delay healing. The fear of having them take it was way way worse than actually having it gone. It’s reassuring but also cautioning what it will mean. I know I worried I wouldn’t be able to orgasm or that I’d prolapse or tear. And all my fears were just fears. I healed great and no negative experiences with sex.
I didn’t realise people kept their cervix to be honest. Is there a reason why some do?
Personally, I derive a great deal of sexual pleasure, but I know that is *very* unusual.
To be honest, I never even thought about it. I’m not sure if it depends on where in the world you get it. I’m UK and it wasn’t an option
If your question was why do people who removed their cervix comment on those who choose to keep it, I think there are a couple of things to consider. 1. Are they commenting after the person has posted they decided to keep their cervix or did they comment while the poster was considering whether to keep the cervix or not. If there is a decision being made it seems to make sense to hear from both sides. 2. Everyone here has lived with a cervix. Not everyone here has lived without one. So in this weird instance, those who had them removed can actually speak to issues involved with a cervix.
In a way yes, this tracks - you’ve had a cervix and a cuff, but you haven’t experienced a keeping a cervix post hysterectomy (which has its own experience of recovery, was there bleeding, sexual pain etc.) That’s often what people are asking about — and all of us in this sub can only answer personally about one or the other. I dunno that it makes sense that those with a cuff are informing on what they’ve *heard* about the experience of cervix post hysterectomy, but it’s not really right to share info we’ve heard about the cuff as someone with a cervix. Maybe it’s best that we all just speak about our personal experiences? I dunno how we get around this issue, it seems to have become divisive.
My curiosity is why respond when the question is directed particularly to people who chose to keep theirs. There's always someone answering the question they weren't asked.
If you have a cervix. You can not comment or give answers to a question about a cuff you don’t have
So… OP is clearly wondering — why is the reverse okay? If what you’re saying is true, posts about having a cervix post hysterectomy then shouldn’t be filled with comments from people who had it removed saying why it’s better. Truth is, there is always one path we don’t know about personally because we chose a fork in the road. We all need to be kinder to one another. Having a cervix or not doesn’t impact anyone but the patient themselves and there seems to be a lot of judgement about “myths” for those who don’t have it removed. Nobody needs to justify why they didn’t choose to have an organ removed.
So I don't. Nor do I see anyone doing it. What I see are lots of warnings about keeping it from people who didn't.
As far as I can tell, the majority of us hyster sisters had them removed. I had dysplasia, along with a family history of breast cancer - that means I was at an elevated risk for cervical cancer. Between those two things and the adenomyosis that was eating me alive, doc said it had to go. I can’t speak to anyone else’s experience, but that’s mine. My cuff was slow to heal, but it did heal eventually.
I TOTALLY get what you’re saying!!! I’ve made my decision on my surgery with my doctor’s input (who agrees keeping it makes sense for me). I have used the search bar to find answers about certain things to expect after surgery from people who have also kept their cervix. It’s so hard to find the answers I’m looking for because I have to comb through so many answers on posts specifically asking about supracervical surgeries that are about getting rid of the cervix. I love that people want to help, but it really is not helpful adding experiences completely unrelated to the question. I want to add I’m not talking about posts where people ask for opinions on both and what people think is a better option. I’m talking about posts like, “When did you return to work after your hysterectomy if you kept your cervix?”
I’ve had the opposite experience in this sub. Everyone seems to have removed their cervix per doctor’s recommendation.
I had my laparoscopic hysterectomy (took everything except the ovaries) in Feb of this year for suspected endometriosis (suspected by experts, based on my pain level/cycles and past responses to hormonal birth control). Turns out I’d didn’t have endo, but I did have chronic cervicitis (my cervix was inflamed basically all the time, even worse during ovulation/period) so while I picked the ‘radical’ approach of a hysterectomy to address my suspected endo, it turns out if I’d have gone the more conservative exploratory surgery route, I would have needed to have future surgery to remove my cervix to actually address my real problem. Happy to report that I’m doing great in recovery. I was home day-of (my surgeon looked for me after her next surgery to check in and I’d already been discharged), back at work (desk job, WFH) in 3 weeks with less pain than I had from my pre-surgery symptoms. I didn’t bleed after like 1 day of being home, and had no cuff issues like I’d scared myself reading this sub ahead of my procedure. 8 weeks later I started pelvic floor PT (suuuper recommend), and am making improvements every week (never been terribly athletic in my life)! I do still have some mood/cramping issues once a cycle (1-3 days), but no more paps, 0% risk of cervical cancer, and no more chronic cervicitis is serving me really well.
I had mine taken out when I hat my hx. Honestly I was worried about it at first, but I can finally have sex properly and not just the tip, because I don’t have a giant bowling ball blocking the way.
I also had the option. I have mild gender dysphoria and not having the cervix I think helped eliminate 90% of my dysphoria. I haven't had any bad response to not having it so for me it was the right choice.
My cervix was the entire reason for my hysto - it was aggressively trying to grow cancer and had to go, there was no question for me. The rest were really just collateral damage. Kept my ovaries but yeeted everything else. Healed brilliantly, I’m 6MPO now and zero regrets
I had mine removed. No tears. If people listen to dr and not do anything dumb like have sex too early then no risk. Best decision I ever made. I still orgasm and its way better in my opinion.
I think there’s just so much cuff anxiety in general. The main thing I see and I say the same thing too…is yayyyy no cervix means I’ve never and will never have a Pap smear. True, never had one but docs are scary in general and I don’t want anyone looking there.
I opted to surrender any parts of my internal system that had any sort of abnormal cellular growth. Originally I wanted to keep my tubes and cervix, but I have a history of paps with abnormalities and imaging showed that there were some small growths on my tubes. If I were certain that I’d be able to access quality medical care a decade down the road, I would have tried to keep my cervix. But ultimately, I decided to opt for a more radical procedure now, rather than putting myself through the possibility of more surgery in the future. I’m 54 and in generally good health. I’m now going on 8wpo and feeling great on some days, needing lots of naps on others. I chose the best course of action for my needs and budget. Sometimes I dislike being American because of the fact that I have to consider budget when it comes to medical care, but here we are…
August 17th will be my one year post op mark. I don’t make comments warning about cuff tears because just doing simple online searches about hysterectomies and risks will provide information that can scare people easily. Between that and scouring the subreddit for information I had gotten quite freaked out about possibly having a cuff tear happen.
I had my uterus,tubes,cervix removed and I still need phap smears once a year to test for cancer so I think it just makes it so I don’t need to get tested for cancer as often: initially I thought my ob/gyn might spare the cervix but he removed it anyways during surgery and I had done a phap smear a week before my surgery so I got a letter from a cancer screening place and was upset because I thought like why do I have to do another surgery but at my in person follow up appointment the ob/gyn said the cervix was removed too and I was so happy.
I’ve seen posts about fear of tearing, etc. I did not keep mine but I remember seeing it here from time to time.
I had cervical ectropion and aggressive vaginal endometriosis, so keeping my cervix simply was not an option. My mother was worried about cervical cancer, so she nixed hers. Our health history means we are simply safer without it, but that may not be the case for many, like preventative mastectomies for those at high risk of breast cancer. Getting rid of the cervix was just the safest and smartest option.
I never knew people kept their cervix. My surgeon basically told me that if I kept mine, it’d eventually lead to issues so it’s common sense to take it out. All I wanted remaining were my ovaries and vagina. Everything else got removed. I’m debating going back and having my ovaries removed but idk if that’d then make me have to live a life of being on hormones
My cervix was chronically inflamed. I didn’t want something hanging out in my body that was always inflamed. If it wasn’t - I still would have had it removed - why? I feel like it would serve zero purpose for it to be hanging out in there. 🤷🏻♀️
I didn't keep mine. Snail trail is gone!
I’m two years post op and didn’t keep mine. I had many massive fibroids throughout my uterus and I didn’t want the chance for them to grow on my remaining cervix. Technically it’s basically the same type of tissue and they can grow there. I did t want to have surgery again in the future for the same thing. No uterus, no need for the neck of the uterus either!
I wasn't given an option. My main issue was large fibroids and my surgeon explained that if she left the cervix there's a high incidence of the body just aggressively making more fibroids on the remaining tissue. So I got the cuff. My body did respond that way and made growths on the ovary. Not had any cuff issues and I'm fine to have lost the cervix. I think it's normal for people to be nervous about getting a cuff because it feels more like messing with the vagina. I had a good cuff experience but it isn't the choice for everyone and at the end of the day it's going to come down to an individual and their doctor. Someone posted a very good thread about actual data on cuff issues today and it's a very good resource for those worried about it or exploring the option.
I had hpv & high grade cell changes on my cervix. So no question it got yeeted
I had my total hysterectomy November 2022. Just did my first pap but not the smear portion mainly a cuff check and pelvic exam. She said since my past Pap smears were not abnormal she didn’t think she would need to. I might have her do it next year tho to be on the safe side. However, I did choose to do a cuff vs keeping my cervix bc I’m 45 and felt it would be more harmful to keeping it due to family history of cervical cancers. This way I don’t have to do surgery a second time.
My surgeon gave me a choice. I chose to have mine removed mainly due to the high risk of cervical cancer in my family. I also had abnormalities where it just made more sense for me to have it removed. Got mine done yesterday and I'm so glad it's over with.
What was the question? The only things I have after surgery are my two ovaries. I was on extended bed rest because my recovery didn't go well and it's still not well. I was never cleared for sex because my ob/gyn didn't did her job effectively for after surgery care. So my husband and I waited 5-6 months after surgery to have sex but then had to stop because I had another abdominal surgery. Waited another 5-6 months. So I never had cuff repair. And no one has checked my vagina canal or cuff since 3 weeks after my TAH 17 May 2022. (Shrugs)
I love reading everyone's situations. Every woman is different and has her own reasons. The question was more why do you answer questions about keeping it, not why you kept it.
I mean… I didn’t know anything about cuff tears until this post, and I’m nearly 4wkspo from a TAH where they removed my cervix. So, new fear unlocked?