I was going to say this. It’s obviously an extreme measure but wanting to die is also extreme and should be taken seriously. I know it’s so hard to find strength to make appointments but I would try to continue to seek out a professional willing to at least listen when someone lays out a case for bladder removal.
It’s definitely doable. My FIL had this done a few months ago for lesser symptoms than these. Recovery has been a little rough, but it’s been better than constant pain.
Please, please don’t end it. You matter. You are loved. You are important in this world. I know that it seems impossible right now but you can do this.
Maybe there is something else going on that they haven’t diagnosed yet that’s causing some of the other issues you have going on.
I know what a hard road this is my friend. Just take it one breath, one day, at a time. You are more than this illness.
MCAS was 90% of my battle. Had IC for 25 years and it was decently managed most of the time with Elmiron, but when I hit perimenopause it got a lot worse and then after I had Covid it became unbearable. I found out post Covid that I had developed MCAS, but the more I learned about it the more I realized I probably had it for most of my life because it would explain a lot of the weird multisystem issues I’d have that no doctor could ever figure out. (I also have hEDS and POTS and these things all tend to come in a package deal.) But I think Covid made the MCAS so much worse that it was now impossible to ignore. When I started treating my mast cell issues, I was really surprised that my bladder pain almost completely disappeared. Come to find out that, for at least some people, mast cells are a big part of their IC pathology. I think the reason my IC has gotten so much worse during perimenopause is that falling estrogen levels cause mast cells to be much more activated and problematic, and Covid was like gasoline on the fire.
Anyway, quercitin and cromolyn were the ticket for me. I still have minor symptoms like occasional urgency, but it’s kind of hard to tell how much of that is the IC and how much of that is the urinary symptoms that go along with menopause.
I have indolent systemic mastocytosis, which is believed to be what drives my IC as well. I developed IC in my mid 20s but didn't get the mastocytosis diagnosis until age 50. That's why I asked the OP about mast cell issues, because it could open up a few more treatment options that might help.
What kind of tests diagnose that? Are they very invasive? I only have frequency and urgency but the cystoscopy was terrible and idk about another invasive test.
You mean diagnose IC or MCAS? For the IC I had a cystoscopy and based on that plus symptoms the urologist knew immediately what it was. The MCAS was the hard one for me... it was more about eliminating systemic mastocytosis and other issues like pheochromocytoma as the potential cause of my symptoms... and that was blood work and a 24 hour urine. There are no great tests for MCAS, a lot of doctors don't know anything about it, and it can be hard to get medical support. At best, it's largely a process of elimination. The fact that quercitin, which is a mast cell stabilizer, helped me so much prompted my doc to prescribe cromolyn.
I have IC, but nothing showed up on the cysto. I was wondering more about the mast. It feels like nothing has worked. It's crazy how little is still known about all this
It can. I’m looking into mast cell activation syndrome, as my flares seem to come when food allergies set off my immune system. An allergy specialist would be where you want to go, once I cut my main allergens my flares nearly disappeared. Do not give up.
My uro-gynecologist told me to lay off coffee spicy and several other things it does make a difference.
Gluten seems to make it more irritated as well as alcohol
Absolutely I have IC as well. It can be caused by mast cell issues, connective tissue disorders, a condition called Ehlers-Danlos syndrome.
Don't give up.
Keep seeking geneticist rheumatologist immunologists, urologists and a new primary if this one's not doing what they should be.
It took me 7 years to get the right diagnosis and some relief.
We saw multiple rheumatologists multiple urologist multiple geneticists multiple neurologists.
It took my teenage daughter five years.
There are answers keep looking.
This is my first time hearing this is connected to Ehlers-Danlos but I know that’s connected to POTS (postural orthostatic tachycardia syndrome) which I have been diagnosed with…. Now I’m fucking wondering if this damn IC is connected to that as well.
Yup! I have IC and hEDS. When i got my hEDS diagnosis recently i bought that book and SOOO much clicked for me. And the fact it specifically talked about IC shocked me.
Mast cells are found everywhere in your body and, when they malfunction, they can wreak havoc on your body and cause all kinds of seemingly healthcare issues. It wasn't until I was 50 years old when a doctor recognized what was going on with my body, did the proper testing, and discovered I have indolent systemic mastocytosis. Suddenly all kinds of things that it happened to me throughout my life regarding my health made sense. It was mind-blowing for me too at the time.
i had bad urgency until i switched to drinking more alkaline water and laying off too much acid. when i start to have more spicy or acid, it comes back
I quite literally had to stop eating no more than 10 different foods for over 6 months, drinking nothing but water, but yes. I truly helped. Mast cell disease can wreck you bladder.
Yes, very possible. I have that as a main symptom and was later diagnosed with indolent systemic mastocytosis. If you have a mast cell disease, it could be a major factor in your IC and that could open up other treatment options. Have you tried using antihistamines and noting if that helps your bladder?
You need to see an allergist or an immunologist as a starting point. If mastocytosis is suspected, a hematologist oncologist will probably also be involved in your care. The website www.tmsforacure.con is the best website about the different mast cell diseases that exist, testing, and treatment for them.
This disease can be devastating and at times seemingly impossible to endure. Please go to the ER or call the suicide hotline. You are worth saving and I can’t promise that you’ll ever be completely “normal” again, whatever that even means, but you will have better days. I have no idea where you are, but state side we have IC specialists who can help alleviate your symptoms and manage your treatment plan that allows you to live a better life.
I second this!! It will get better. I too have knocked at deaths door more than once. Death didn't answer that door. Thankfully. Sending you as much energy to survive as humanly possible. ♥️
I cured my symptoms 99.9% AMA
I was there before. the burning pain (vulvodynia), the not knowing what is happening, the endless doctors visits, the tears, the hopelessness, i had it all and im only 23 years old. (also struggle with IBS & severe TMJ)
WHAT HELPED ME:
- Uribel (previously i said that AZO is bad for u but it works for some ppl who dont have access to this medication so do whatever u are able and always consult a doctor prior to taking any meds)
- physical therapy (REAL physical therapy. cupping your back muscles, internal dialators, etc.)
- stretching
- kept a diary of when i got flares from what i ate. (advice from pt: if a food triggers a flare, it will happen DIRECTLY after u eat, not more than 1 hr or so of eating...)
- found out tomatoes and acidic foods trigger me and so i elimited that for a very long time. also espartme (sweeteners) HUGE trigger. slowly overtime i was able to reintroduce all of these!! ... also strangely chocolate triggers me sometimes
- cranberry juice is bs.
- tens unit that my pt did on me u can buy it on amazon!! (EFFECTIVE FOR IBS!! which can directly cause IC symptoms!)
- dialators are also on amazon (HUGE)
- ONLY have sex with people that UNDERSTAND UR BODY AND REALLY TURN U ON. dont force it!!!!!!! ur body will react - TAKE IT SLOW
- orgasms RELAX the muscle!
- also if u have TMJ the pelvic muscles connect directly to the jaw. helping one will help the other
- myofascial release massage has cured people
- HYDRATION!!!
EDITS:
- PILATES TRIGGERS ME! (excercises come from the pelvis)
- DEEP BREATHING IN THE LOWER STOMACH RELAXES THE BLADDER!!!! (this has been HUGEEE for me in terms of when im in a flare if i do really deep breathing in the lower stomach I can calm my flare in about 5 minutes from this)
- a very good diet is a low acidity diet!
WHEN IN AN ACTIVE FLARE/BURNING PAIN:
- uribel
- take off my underwear, go under my covers and spread my legs to stretch
- DEEP BREATHE deep into the pelvic in the lower stomach for as long as i can. the deep breathing directly relaxes the muscles and overtime when I do this I can get rid of my flare within minutes now doing this method.
all of this overtime and i am essentially 99.9% symptom free. i can wear thongs. i can cross my legs. i can wipe without being in burning pain.
please send me questions if u need help.
This disorder can be so debilitating. You are not alone in that. Please don’t give up. It can get better! The first urologist I saw was awful, the one I see now has helped immensely. Stay for a while longer, please.
https://preview.redd.it/l5l87d9g2zsc1.jpeg?width=640&format=pjpg&auto=webp&s=5907543d3240ee984979657bc2dc5ec739e429cf
I’m so sorry you’re struggling. We are right there with you but please please don’t give up. It’s not over till it’s over!
I’m so sorry you’re going through this. I want to give you a glimmer of hope. I was where you were about 6 years ago. My doctor said I had the worst IC he’s ever seen. Nothing seemed to help. It got worse and worse for years. But fast forward to now and I am healed. Pls don’t give up. IC doesn’t deserve to win. Message me if you have any questions. I have an Instagram about IC as well.
What did you do to heal your ic? I'm struggling a lot with this along with endometriosis, IBS -C and fibromyalgia and ECT... I also pee all the time. Have you tried Zyrtec and prelief. It helps some
I did a lottttt to heal. Rewired my brain, acupuncture, chiropractor care, worked with a Chinese medicine doctor and she was also functional medicine. I ate my safe foods and drank alkaline water while healing. I got trigger point injections around my pelvic floor. Went to pelvic floor PT. I used cantharis (homeopathic remedy) for burning. I left a toxic home environment, job, and relationship and that helped A ton. I was in therapy dealing with my trauma.
I am so sorry to hear about the amount of pain that you’ve been in. I can’t even imagine what you’re going through and I’m not going to try to understand or talk you out of what you want to do, but I will say that it looks like there are many people in this community who would be willing to speak to you if you ever needed it, including myself.
I’m sorry you are suffering. I understand that it feels really hopeless but it won’t always be this way. Eventually you will find the right combination of things that help make things easier so you can live a more normal life. If you are at this point go to the hospital this is not worth your life.
I'm really sorry you are going through this. Interstitial cystitis is awful but please don't let it take your life. Try 988 hotline. Things can get better.
Better to change your diet than to end it all. Give 90 days … 30 into keto…with low oxalates…and then do 30-60 of carnivore and reevaluate. Sometimes the extreme elimination diets help us heal. And then reevaluate…see how you feel. Mental health- Dr. Georgia Ede, Keto, Dr. Ken Berry, women hormone’s Dr. Elizabeth Bright, oxalates Dr Sally Fallon-superfoods that are killing you. Carnivore Dr. Chaffee . So many informative YouTube videos. It won’t hurt to watch. Many health success stories. Good luck and prayers for you.
I'm so so sorry you're struggling. You are loved, you are worthy. Please reach out to a hotline and remember it can and will get better. I know this is a disheartening and debilitating condition. But you will get through it, just take it one day at a time. Get multiple opinions if you need to (and if you have, get more), and remember there's a lot of people out there that know what you're going through and are rooting for you.
I thought that, too, and I was depressed with suicidal ideation. I'm better now and in remission with the right meds and treating all of the aspects of IC that were exasperating things.
I'm glad I didn't give in when i was weak. It's shit now, but that is no guarantee that it will always be this way. I dreaded being in pain for the rest of my life, but here I am, pain-free. Right now, you are hurting, anxious, and depressed. It's normal, and usually, it goes away with time. Remember that anxiety and depression are fuel to chronic pain. Do not ignore it bc it is a byproduct of chronic pain. You treat that too bc the better your mental health is the more quality of life you will have. My PT had me start mindful meditation and hypnosis. It does help funnily enough. Deep diaphragm breathing increases the blood flow, which aids with pain relief.
what meds did you try and what ended up working out for you? I’m on nortriptyline 75mg, vesicare 5mg, and hydroxyzine 25mg 3x a day. also taking the DH aloe vera. my symptoms are down from a 9/10 to maybe a 6 or 7, but I’m still having horrible flares out of no where. My diets been super basic, I dont notice a big correlation between my cycle and symptoms, I have no clue what else could be causing me to flare.
Im on amitryptaline 50mg and I take a longer cycle birth control since my symptoms flare from hormones as well as stress. So I get my period every 12 weeks and it has helped a ton. Amitryptaline took a year to work properly.
Hi, can we private message? I feel the same as the girl in the post, it’s like nothing will ever get better, I could do with some support, would you mind? Charlotte x
I don't blame you for wanting to. I've tried to disappear myself because of this condition. If that's what you want to do, it's your choice, but I'd advise that you take a step back and consider if wanting to end it is a spontaneous feeling that you might not even feel within a few months. There's also risks of what happens if you attempt but don't succeed, depending on how you choose to do it. Things that could lead to you still being alive, but living an even worse life. It's a major decision that shouldn't be acted on immediately and should be delayed. It's hard to say how long someone should wait. Maybe I'd suggest giving it a year from now and seeing if you still feel the same. You can always do it later.
There are still treatment options to try.
Could I ask how long you've had interstitial cystitis and what treatments and diagnostic tests you've tried?
I remember reading a study finding that roughly half of IC patients are able to achieve remission. Most will achieve remission within 8 months, while it can take others up to 7 years to achieve remission.
Because it's a syndrome, it's difficult to determine a cause or what the best treatment is. There are so many treatment options. Amitriptyline, gabapentin, hydroxyzine, botox injections, DMSO or lidocaine instillation, corticosteroids, aloe Vera capsules, quercetin, PRP treatment, so many others that I can't remember or know them all. If you haven't tried amitriptyline and gabapentin, they would be the easiest thing to try first since they're broadly used for chronic pain conditions.
I saw someone else ask if you've been tested for mast cell conditions. There is a large estimated subset of IC patients who have mastocytosis or detrusor mastocytosis. These can be tested for through biopsies. Or the levels of prostaglandin D2, leukotriene E4 and histamine levels can be tested for in a urine sample.
You may have an undiagnosed medical condition that can cause urinary tract and pelvic symptoms. Like there's such obscure conditions like lupis cystitis for example. Sjögren's is the most common autoimmune disease associated with interstitial cystitis.
I'd recommend seeing an immunologist to explore the autoimmune branch of IC and see if you are found to have any autoimmune conditions. Mast cell conditions are also something that immunologists work with. Just tell them aaall the symptoms you experience, not just IC symptoms but literally any medical symptoms you experience. You can look at lists of autoimmune diseases and see if there are any that you have a significant amount of the symptoms.
I saw in your post history that it hurts you to wear pants as well. I did experience this problem and it was completely horrible for the first probably 6-9 months. I do still have to be picky with what pants I wear but it's no way near how terrible it was for me in the past.
Symptoms tend to be worse earlier on. At my worst for several months I was peeing 40-60 times a day. I've had IC for over two years now and these days I pee about 11-16 times a day.
How old are you? The past 3 years have been very hard for me. I can’t stand anything tight on my abdomen anymore. So I wear Amazon basic high cut underwear in large even though I weigh 110. They put no pressure on me. Also, loose fitting knit pants with drawstrings so you can adjust. But jeans don’t bother me for some reason. This is debilitating, I agree. Also, lidocaine gel I rub on my abdomen morning and night. Or bio freeze. They seem to help for some reason. Do you have pets? A warm body to curl up with is great. Spring is here! Sit in the warm sun if you can. Please don’t give up!
I’m so incredibly sorry for your suffering. You are not alone. Please know that you are valid and are seen and wanted in this world. If you are desperate and have suicidal thoughts, please reach out to the suicide hotline. There is no shame in doing so. Sending you strength and love and the will to keep going as impossible as it may seem - I hope you find something that can take even an edge off the pain and discomfort
I'm so sorry. Please don't end it. I've been there, too. This disease sucks, but there's always new technology coming out. I understand, and I sympathize.
I know it seems never ending, the pain, the frustration, the agony. But trust me your life is worth more than that. It always will. Please think it through. Remember the good times. Find good people and surround yourself with them. Never give up
Please don’t give up, the world needs you!! The ONLY thing that helped my symptoms was the big gallons of aloe juice from Trader Joe’s and aloe pills (there are randomized control trials on this) but It seems like your symptoms are more advanced than mine. Could be worth a try if doctor says no contraindications.
Do you have a urologist? (Not sure of your gender but I started seeing a urogynecologist which was the key for me! All the other doctors never could understand and i felt helpless going in circles and never getting answers)
I hope you find some relief soon, please find some help ❤️
I was once where you are now because of the pain but didn’t go through with it. That was 10 years ago now. I went about another year after that in excruciating pain and then went into remission. Now most days I have very little to no pain. I am not stuck on the toilet. I am glad I am still here. I hope you stay. The pain is not forever even though it feels like it will be. I know it is so intense and impossible to ignore. As others have said, go to the ER. Call the suicide hotline. But please don’t end it. There are good days ahead.
Sending you so much love and support OP. 💜
When I feel like this, I try to remind myself that there is no going back from ending it. I won’t ever know of new treatment options, I won’t see things get better, and I won’t ever open my eyes again to see the beauty in the world, even if it’s amidst the ugliness and hardship too.
At my worst, I considered bladder removal and I will do it someday if it comes to that. Please keep looking for answers and keep going. You’re worth it. I’m sorry you are going through this and that doctors are shitasses. Your pain is real and valid and you deserve treatment that helps you. 💜
I don't know exactly, its a a type of biologic drug called a monoclonal antibody. Monoclonal antibodies are laboratory-produced molecules engineered to serve as substitute antibodies that can restore, enhance, modify or mimic the immune system's attack on cells that aren't wanted, such as cancer cells. So maybe it helps in this way. My IC is not cured, just manageable.
Hi- is your EoE related to your IC? Have you done anything that treats both? I was diagnosed with both in my 20s but the EoE I’ve basically forgotten about while the IC is life altering
I’ve had EoE since early childhood. I always have insanely large amounts of eos in all of my scopes, I’ve had 14. The interesting part is though, I am mostly asymptomatic, besides some heartburn on occasion. I’ve tried a ton of meds but nothing works for very long. CHOP is keeping me as a patient despite me being in my 20s as I’ve been part of their research studies since I was like 10. The IC thing is really strange for me as it only came on in November. I have hEDS so I wouldnt be surprised if its nervous system dysfunction. My biggest triggers seem to be stress and sex. IC meds dont seem to do much in terms of pain, maybe the frequency and urgency though due to being on vesicare.
Sending love and hugs from and internet stranger. ❤️
I’ve been where you are, many times before and luckily in my 24 years of IC, I have found some relief. Please don’t give up your fight with this horrible chronic illness.
Please don't end it, there is hope. I believe in you. My messages are always open if you want to talk or just vent. I can't know exactly what you're feeling, though I have felt similar... just over it and ready to give up. You are not alone, even if it feels like it. You may feel stuck in the pain and mess of it all right now, but it can and does get better. There is something out there that'll help you. You are so loved, cared for, and SO much stronger than this stupid & horiffic disease. Please keep fighting. You can get through this🫶
i have experienced constant excruciating pain before as well, it feels like there is a knife in my urethra. for me, phenazopyridine has been absolutely life saving. if you’ve ever taken azo, it’s a much stronger version of that. azo stopped working for me so i went to a urologist and they prescribed it to me (and also recommended i look into IC and pelvic floor physical therapy). unrelated to IC, i’ve also been horribly suicidal for years at a time. neither of those are easy to deal with, especially alone. i promise those close to you don’t want to see you gone, they want to see you happy and free of pain but alive! there will always be an option for you, there will always be time for you, will never have been and never will be a burden.
Please don’t give up, love! I have been where you are and still have a really hard time with it. You are not alone! Lean on the people you are close with. They would rather hear about what you’re going through than lose you, I promise! Feel free to message me if you need someone to talk to. We are all in this together ❤️
please let me help you and give you advice from my years of urologist appts. i’ve learned so much and have tried so many different things, i too felt the same way you are feeling now. but last year i finally found something that worked for me and i almost rarely have pain or a flare up. i went from having excruciating pain every SINGLE day for YEARS.. to having a flare up maybe one day a month or every two months. i promise it does eventually get better with pain management and testing out different treatments. i would love to help you navigate this and can give you some insight on the things i’ve tried, and what really helped me
I've been in this situation too. Please don't give up. There are more things to try. Something that helped me and was recommended by a female urologist: If you are anywhere near menopause, try Estradiol cream. You only need a tiny pea sized amount on your thigh twice weekly and the results have changed my life. Also, look at the medications you are taking. A doctor who was treating me for IC was also prescribing two blood pressure meds that CAUSE bladder pain. As soon as I switched meds my chronic pain was reduced to occasional flares. But anyway, for anyone desperate, please look into a little E cream and see if it's for you.
I’m so sorry I’ve felt like this so many times it is so extremely difficult :( I’ve had it for 6 years. IC is literally hell … I promise you I was where you are & I was able to improve my symptoms and I’m doing much better now. Please don’t give up!!!! ❤️
I have resources I can share to you! Just let me know!! ❤️❤️❤️
Please don't. You can still find a way to feel better. I felt awful before but have gotten better with supplements and hormones. It is a long trial and error process but it can happen. Please let me know if I can help you by sharing some of the supplements that work for me.
Please don't give up. The doctors haven't found out the reason this is happening to you yet.
I was where you were five years ago. It took me a year and a half, four urologists (I got it right on the fourth try, he was wonderful and never gave up on me) and functional medicine to knock this into dormancy. Except for a couple of periods of extreme stress, I'm symptom free for the last five years. I hope for the same for you.
Max0003, I read your post, and my heart goes out to you. I can empathize. It can seem so disparaging, but know this- I am praying for you. I pray for God’s healing hands on your body, and for you to experience relief. Even a day or two of relief can give us strength keep going! Don’t give up, please.
Although maybe not ideal... have you considered the lion diet for an elimination diet and healing. 6 weeks of beef (or any ruminate meat), salt, and water only. Anyways, it may be worth looking into. Wishing you the best.
My guess is my muscles were playing a huge part in my spasms. Pelvic floor therapy would work to get my out of spasms but they came right back. Something about stretching in the heat and yoga poses are amazing for stretching the pelvis, it was just what my body needed. I also think meditation did wonders for my stress that was playing a role in my flares too.
I understand that it’s stressful. I’ve had weird health issues throughout my life and felt like if they didn’t get better I might end up doing that one day but luckily for the most part stuff has gotten better, due to me googling everything. A lot of what has made me feel better personally was never medications (except for maybe allergy medicine) (talking about my other health stuff not bladder). I’ve had the most benefit from lifestyle changes and supplements. (Waking up at the same time daily and exposing myself to the sun. My megaspore probiotic helped me digest stuff again without being nauseous and having to eat 5x a day. You may feel like a burden, but if you die im sure those negative feelings will burden your family much more. Even if you feel like they are frustrated with you. My sister was bipolar and annoyed the ever living crap out of me and we weren’t even that close towards the end but it’s still negatively affecting me 6 months later. I’ve read about people that were in extreme pain from this but end up finally finding something that helped enough to make life worth living. Id understand maybe wanting to do that if you’ve literally tried EVERYTHING and nothing worked but have you really tried everything? Have you tried the desert harvest aloe Vera? Have you tried marshmallow root? Have you tried quercetin? Fish oil? Meditation? (Some flares can be trauma related) Have you tested your microbiome because people that have sibo have a strong chance of getting better if they alter their microbiome. Have you tried an elimination diet with just meat first maybe and introducing one food every three days? Do you have mast cell activation syndrome that could irritate your bladder? Do you sit too much? Do you drive with a memory foam pillow? Do you have a neurological issue? Can you take out your bladder? Have you tried the neurological implant device? Have you tried lowering salt? Have you tried supplements that are supposed to help your gag layer over your bladder or maybe collagen? Maybe acupuncture could help with the pain idk but I do know someone that did it for their back pain and it helped. Meditation can be beneficial if you aren’t sleeping well because it helps your body get deep rest and also helps you deal with stress and maybe pain better. Idk maybe talk to a different doctor because not all are going to know the latest treatments. Try one that specializes in ic. Google stuff for yourself. See what every single person in the world has done to feel better from ic. Are you low on hormones/estrogen? Maybe bioidentical hormones would help. Have you tried fasting and only drinking water? (If you’re healthy enough to do that blood sugar wise and what not)
Please stay alive and keep trying! There are so many causes and solutions. I went from constant pain to occasional flares but it did take me years to get diagnosed and then trying different treatments. I still have to urinate frequently and deal with urgency, but the pain is almost completely gone as long as I avoid my triggers and get hydro distentions as needed and keep up with my pelvic floor exercises. I take supplements and use vaginal diazepam suppositories as needed. I’m not currently on any medications, but I have weird side effects from so many of them and can’t tolerate them so that’s why. I can assure you that my pain is so greatly reduced that I never would have believed it even two years ago. I strongly believed that I would spend the rest of my life in unbearable pain after failing so many treatments, but here I am in so little discomfort that it doesn’t even really count!
Mast cell!!!!!! Please get help.. Dr Afrin is the go to guru on this.. tons!!!!!!! I have been told I have MAST CELL.. I was having insane UTI AND Spasm. I had to make changes.. d mannose supplement.. water only.. low histamine diet.. got on Zyrtec and Hydroxyzine.. and at times Pepcid as it is an allergy pill for stomach basically.. enzymes for food digesting.. please look into this.. I went everywhere.. I was even experiencing Capillary Leak Syndrome and until I went I to organ failure they were not give me IVIG.. I even went to Mayo Clinic in MN for 7 days.. I went to NIH in Maryland.. I reached out to Cleveland clinic.. I did this for 3 yrs!!!!! In and out of er.. urologist.. 50 drs in Austin. If ever ology you can think of. 30k in debt. Running a business .. self employed.. I know!!!!! I understand!!!! But that is. It the answer. I remember thinking it in dark times too. I ended up at a functional medicine dr who found Lyme.. mold tox.. heavy metals and more.. that stuff is very real.. I am better but still have flares.. pleaseeeee I beg of you. Take my advice to heart. MAST CELL can be completely systemic in crazy ways!!!! Like head to toe weird stuff!
Hi! I have IC too. The only thing that helps prevent it for me is getting rid of intestinal gas. I take activated charcoal and simethicone after every meal. Since starting doing this I haven’t had an episode (it’s been months). Idk if it’ll work for you but I hope you can try it and it will help. This condition is pure hell, I wish more was done about it. For now, I hope you get some relief.
I’ve thought this way before as well. Just know everyone in the comments section is here for you. You can get through this. If you need to talk please, please reach out. You are worth so much more.
Please try Dr Stewart Bundrick. He does Telehealth worldwide. Or if you’re in the UK, please try the LATS clinic in London. Worth a try before ending things. 🫂
The American Urological Association states that “Long-term oral antibiotic administration should not be offered” for IC due to lack efficacy and/or appear to be accompanied by unacceptable adverse event profiles [1].
Antibiotics help those with IC because antibiotics function as a strong anti inflammatory and pain reliever by themselves, even in those without infection [2]. Having pain reduction from taking antibiotics does not mean that you have a UTI.
If you think you have an embedded infection, then you can discuss it at /r/CUTI. If you had symptom improvement by treating you pain as a chronic infection then you are welcome to post your experience as a new post, but please do not tell OP in the comments about how IC is a chronic infection (unless their post in explicitly about embedded infections). Keep in mind that the use of DNA testing for routine diagnosis and treatment of UTIs is still an area of ongoing research, is not yet standard clinical practice, and physicians may not take action based on the results due to lack of interpretation standards.
1. Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) - American Urological Association. (n.d.). https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)
2. Pradhan, S., Madke, B., Kabra, P., & Singh, A. (2016). Anti-inflammatory and immunomodulatory effects of antibiotics and their use in dermatology. Indian Journal of Dermatology, 61(5), 469. https://pubmed.ncbi.nlm.nih.gov/27688434/
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To add to that, I’ve been dealing with this pure hell for 14 years. I came very close to ending things a few times. The things that finally helped me to the point I am now reducing my opioid pain meds after 14 years are: Dr Stewart Bundrick, HRT oestrogen and testosterone replacement (include internal oestrogen) and IgE food allergy testing, the skin prick type. Good luck 🤞
Your post was removed because it broke Rule 4: No Absolute Causes or Cures for IC, No Blanket Statements.
IC is caused by many different things. Please tell other posters what has caused or cured your IC, but please don't tell them what has caused or will cure their IC. If this was known, then we wouldn't have any need for the ICA.
I.E. All IC is not caused by chronic infections. All IC is not cured by the diet.
There is no single cause to IC; therefore, there is no single cure to IC.
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It’s really hard to get a script for since it’s an addictive adhd medication but please try dexedrine. I guess adderall would also work because there’s dexedrine in adderall. I was bedridden for 3 years and it made my pain and urgency vanish almost instantly as long as I take it. The side effects suck ass and I hate taking it but it’s better than constant burning and urgency. There’s very little research on it for IC. But if you google it some will pop up.
I also agree with the mast cell comments. It’s not some pseudoscience diagnosis. There’s a lot of research that connects it to IC. Start with taking an H1 antihistamine AND an H2 antihistamine together. So reactine and pepcid for example. You can buy these at a pharmacy without prescription. You can also combine them with a mast cell stabilizer like cromolyn sodium which you need a prescription for. A general practitioner would probably be too dumb to know what mast cell activation is by the way. You’ll probably have to go to an allergist or a naturopath who’s familiar with it.
I’ve felt like ending it before so many times and I know it feels like no amount of logic or reassurance will help. Just please try the things above. It could change your life like it did mine.
Hey, I’m not sure if this will help but I felt like this for years on end I was in so much pain and I couldn’t deal with it anymore. After 4 long years my symptoms finally started to let up and now I’m in remission (no medication). I’m not sure how long you’ve been battling for but there’s every chance you could get better our bodies are just so hard to predict. Just know that we’re all in this together, we feel each others pain and you will always have us to confide in. I’m so sorry this is happening to you but please speak to a professional ❤️
Get microgen testing. Make sure it’s not a UTI. I just tried Botox and after the infection clears it should help. It helped the second week. Do Pelvic therapy
I get this. I have multiple chronic conditions from bladder issues to me/cfs, fibro, endo, pcos, pmdd, digestive issues. It's all become so much that I get to moments like that where I just don't want to live anymore because it's never ending and I feel like a shell of myself. I'm.so sorry you're suffering. I'm still going, for now. But mentally and emotionally It's rough. Please reach out. I'm not going to tell you life is worth living but I will be a friend if you need someone to sit in darkness with you.
This is me I can’t cope anymore I have bowel bladder pelvic pain and burning and redness throughout my whole body with no end or treatments in sight I just want to die 😢
I really hope this gets to you. Please stay. The 23,000 people here in this group show that you are not alone in your pain. You matter so much. After a long time of thinking I couldn’t deal with the pain of IC I have found so much happiness in staying. Celebrate the little things because you are worth it. If anyone else knew even half the pain that we go through in our daily lives, I know they would be celebrating right with you. Don’t let doctors push you around don’t take no for an answer. It’s a trial and error journey but so many people here have found hope through different diagnosis. We are all here to help each other.
The American Urological Association states that “Long-term oral antibiotic administration should not be offered” for IC due to lack efficacy and/or appear to be accompanied by unacceptable adverse event profiles [1].
Antibiotics help those with IC because antibiotics function as a strong anti inflammatory and pain reliever by themselves, even in those without infection [2]. Having pain reduction from taking antibiotics does not mean that you have a UTI.
If you think you have an embedded infection, then you can discuss it at /r/CUTI. If you had symptom improvement by treating you pain as a chronic infection then you are welcome to post your experience as a new post, but please do not tell OP in the comments about how IC is a chronic infection (unless their post in explicitly about embedded infections). Keep in mind that the use of DNA testing for routine diagnosis and treatment of UTIs is still an area of ongoing research, is not yet standard clinical practice, and physicians may not take action based on the results due to lack of interpretation standards.
1. Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) - American Urological Association. (n.d.). https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022)
2. Pradhan, S., Madke, B., Kabra, P., & Singh, A. (2016). Anti-inflammatory and immunomodulatory effects of antibiotics and their use in dermatology. Indian Journal of Dermatology, 61(5), 469. https://pubmed.ncbi.nlm.nih.gov/27688434/
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I have not read all the comments so please forgive me if I am repeating what someone else has said.
I am so sorry & saddened that you are at the end of your rope. I can only imagine what you are feeling.
I have one suggestion - find a functional medicine doctor. He/ she will look for the root cause of your agony and help you fix that which is broken. Another option is a naturopathic doctor.
Who ever you choose, vet them carefully. You don’t have the bandwidth to deal with someone who doesn’t know what they’re dealing with.
Functional medicine practitioners & naturopathic doctors find the root cause; conventional medical practitioners treat symptoms and do not seek to heal.
I realize this is not immediate relief but I want you to have hope while you find a medical partner who will help you.
Sending you love, prayers, and strength as you navigate this tough situation. Please keep in touch.
They have developed a vaccine for recurrent utis. It is available in Spain, and is just coming on line in the uk. It has had some success in reducing frequency. I am finding using d mannose 3 times a day helps
Your post was removed because it broke Rule 1: Respect.
Disrespectful comments include things like: insults, excessive snark, discouraging people from posting or asking questions, questioning the validity or seriousness of others’ symptoms, and sexism/racism/ homophobia/transphobia etc.
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For the very desperate, I’ve heard you can have your bladder removed. Have you considered?
I was going to say this. It’s obviously an extreme measure but wanting to die is also extreme and should be taken seriously. I know it’s so hard to find strength to make appointments but I would try to continue to seek out a professional willing to at least listen when someone lays out a case for bladder removal.
It’s definitely doable. My FIL had this done a few months ago for lesser symptoms than these. Recovery has been a little rough, but it’s been better than constant pain.
Please, please don’t end it. You matter. You are loved. You are important in this world. I know that it seems impossible right now but you can do this. Maybe there is something else going on that they haven’t diagnosed yet that’s causing some of the other issues you have going on. I know what a hard road this is my friend. Just take it one breath, one day, at a time. You are more than this illness.
Have you been checked to see if you might have a mast cell disease?
MCAS was 90% of my battle. Had IC for 25 years and it was decently managed most of the time with Elmiron, but when I hit perimenopause it got a lot worse and then after I had Covid it became unbearable. I found out post Covid that I had developed MCAS, but the more I learned about it the more I realized I probably had it for most of my life because it would explain a lot of the weird multisystem issues I’d have that no doctor could ever figure out. (I also have hEDS and POTS and these things all tend to come in a package deal.) But I think Covid made the MCAS so much worse that it was now impossible to ignore. When I started treating my mast cell issues, I was really surprised that my bladder pain almost completely disappeared. Come to find out that, for at least some people, mast cells are a big part of their IC pathology. I think the reason my IC has gotten so much worse during perimenopause is that falling estrogen levels cause mast cells to be much more activated and problematic, and Covid was like gasoline on the fire. Anyway, quercitin and cromolyn were the ticket for me. I still have minor symptoms like occasional urgency, but it’s kind of hard to tell how much of that is the IC and how much of that is the urinary symptoms that go along with menopause.
I have indolent systemic mastocytosis, which is believed to be what drives my IC as well. I developed IC in my mid 20s but didn't get the mastocytosis diagnosis until age 50. That's why I asked the OP about mast cell issues, because it could open up a few more treatment options that might help.
Very similar to me… IC diagnosis in my 20s, MCAS diagnosis at almost 50.
I'm a patient at the Mayo Clinic for the mastocytosis in a drug trial there. Sadly, they don't treat interstitial cystitis there
What kind of tests diagnose that? Are they very invasive? I only have frequency and urgency but the cystoscopy was terrible and idk about another invasive test.
You mean diagnose IC or MCAS? For the IC I had a cystoscopy and based on that plus symptoms the urologist knew immediately what it was. The MCAS was the hard one for me... it was more about eliminating systemic mastocytosis and other issues like pheochromocytoma as the potential cause of my symptoms... and that was blood work and a 24 hour urine. There are no great tests for MCAS, a lot of doctors don't know anything about it, and it can be hard to get medical support. At best, it's largely a process of elimination. The fact that quercitin, which is a mast cell stabilizer, helped me so much prompted my doc to prescribe cromolyn.
I have IC, but nothing showed up on the cysto. I was wondering more about the mast. It feels like nothing has worked. It's crazy how little is still known about all this
do you think this could contribute to nonstop urgency
It can. I’m looking into mast cell activation syndrome, as my flares seem to come when food allergies set off my immune system. An allergy specialist would be where you want to go, once I cut my main allergens my flares nearly disappeared. Do not give up.
My uro-gynecologist told me to lay off coffee spicy and several other things it does make a difference. Gluten seems to make it more irritated as well as alcohol
Absolutely I have IC as well. It can be caused by mast cell issues, connective tissue disorders, a condition called Ehlers-Danlos syndrome. Don't give up. Keep seeking geneticist rheumatologist immunologists, urologists and a new primary if this one's not doing what they should be. It took me 7 years to get the right diagnosis and some relief. We saw multiple rheumatologists multiple urologist multiple geneticists multiple neurologists. It took my teenage daughter five years. There are answers keep looking.
This is my first time hearing this is connected to Ehlers-Danlos but I know that’s connected to POTS (postural orthostatic tachycardia syndrome) which I have been diagnosed with…. Now I’m fucking wondering if this damn IC is connected to that as well.
It is! It’s talked about in the book disjointed. Definitely worth a read!
Thank you I’m gonna check it out! This is mind blowing 🤯
Yup! I have IC and hEDS. When i got my hEDS diagnosis recently i bought that book and SOOO much clicked for me. And the fact it specifically talked about IC shocked me.
Same
Mast cells are found everywhere in your body and, when they malfunction, they can wreak havoc on your body and cause all kinds of seemingly healthcare issues. It wasn't until I was 50 years old when a doctor recognized what was going on with my body, did the proper testing, and discovered I have indolent systemic mastocytosis. Suddenly all kinds of things that it happened to me throughout my life regarding my health made sense. It was mind-blowing for me too at the time.
Check out the Ellers-Danlos Society. So much great information.
If you'd like some more information please feel free to DM me.
i had bad urgency until i switched to drinking more alkaline water and laying off too much acid. when i start to have more spicy or acid, it comes back
I quite literally had to stop eating no more than 10 different foods for over 6 months, drinking nothing but water, but yes. I truly helped. Mast cell disease can wreck you bladder.
Yes, very possible. I have that as a main symptom and was later diagnosed with indolent systemic mastocytosis. If you have a mast cell disease, it could be a major factor in your IC and that could open up other treatment options. Have you tried using antihistamines and noting if that helps your bladder?
how do u check for mast cell disease
You need to see an allergist or an immunologist as a starting point. If mastocytosis is suspected, a hematologist oncologist will probably also be involved in your care. The website www.tmsforacure.con is the best website about the different mast cell diseases that exist, testing, and treatment for them.
This disease can be devastating and at times seemingly impossible to endure. Please go to the ER or call the suicide hotline. You are worth saving and I can’t promise that you’ll ever be completely “normal” again, whatever that even means, but you will have better days. I have no idea where you are, but state side we have IC specialists who can help alleviate your symptoms and manage your treatment plan that allows you to live a better life.
please dont give up. ive been here it gets better!!!!! i am 99% symptom free
How did you get to your mostly symptom free state?
I'd like to know as well
I second this!! It will get better. I too have knocked at deaths door more than once. Death didn't answer that door. Thankfully. Sending you as much energy to survive as humanly possible. ♥️
just posted down below
What did u do to get better??
I cured my symptoms 99.9% AMA I was there before. the burning pain (vulvodynia), the not knowing what is happening, the endless doctors visits, the tears, the hopelessness, i had it all and im only 23 years old. (also struggle with IBS & severe TMJ) WHAT HELPED ME: - Uribel (previously i said that AZO is bad for u but it works for some ppl who dont have access to this medication so do whatever u are able and always consult a doctor prior to taking any meds) - physical therapy (REAL physical therapy. cupping your back muscles, internal dialators, etc.) - stretching - kept a diary of when i got flares from what i ate. (advice from pt: if a food triggers a flare, it will happen DIRECTLY after u eat, not more than 1 hr or so of eating...) - found out tomatoes and acidic foods trigger me and so i elimited that for a very long time. also espartme (sweeteners) HUGE trigger. slowly overtime i was able to reintroduce all of these!! ... also strangely chocolate triggers me sometimes - cranberry juice is bs. - tens unit that my pt did on me u can buy it on amazon!! (EFFECTIVE FOR IBS!! which can directly cause IC symptoms!) - dialators are also on amazon (HUGE) - ONLY have sex with people that UNDERSTAND UR BODY AND REALLY TURN U ON. dont force it!!!!!!! ur body will react - TAKE IT SLOW - orgasms RELAX the muscle! - also if u have TMJ the pelvic muscles connect directly to the jaw. helping one will help the other - myofascial release massage has cured people - HYDRATION!!! EDITS: - PILATES TRIGGERS ME! (excercises come from the pelvis) - DEEP BREATHING IN THE LOWER STOMACH RELAXES THE BLADDER!!!! (this has been HUGEEE for me in terms of when im in a flare if i do really deep breathing in the lower stomach I can calm my flare in about 5 minutes from this) - a very good diet is a low acidity diet! WHEN IN AN ACTIVE FLARE/BURNING PAIN: - uribel - take off my underwear, go under my covers and spread my legs to stretch - DEEP BREATHE deep into the pelvic in the lower stomach for as long as i can. the deep breathing directly relaxes the muscles and overtime when I do this I can get rid of my flare within minutes now doing this method. all of this overtime and i am essentially 99.9% symptom free. i can wear thongs. i can cross my legs. i can wipe without being in burning pain. please send me questions if u need help.
How?
idk how to link posts but i made a post on this page ab everything i did. i can figure out how to send it
i just posted in the thread! sorry not sure how this works
Please tell me how. I am at the same point as OP. Have what feel a UTI since 2020
i posted in the thread ^^!
Crazy-Bank-3195. How are you 99% symptom free? I’m in agony.
i just posted in this thread!!^
This disorder can be so debilitating. You are not alone in that. Please don’t give up. It can get better! The first urologist I saw was awful, the one I see now has helped immensely. Stay for a while longer, please.
https://preview.redd.it/l5l87d9g2zsc1.jpeg?width=640&format=pjpg&auto=webp&s=5907543d3240ee984979657bc2dc5ec739e429cf I’m so sorry you’re struggling. We are right there with you but please please don’t give up. It’s not over till it’s over!
I’m so sorry you’re going through this. I want to give you a glimmer of hope. I was where you were about 6 years ago. My doctor said I had the worst IC he’s ever seen. Nothing seemed to help. It got worse and worse for years. But fast forward to now and I am healed. Pls don’t give up. IC doesn’t deserve to win. Message me if you have any questions. I have an Instagram about IC as well.
How did u heal your bladder?
What is the insta?
What did you do to heal your ic? I'm struggling a lot with this along with endometriosis, IBS -C and fibromyalgia and ECT... I also pee all the time. Have you tried Zyrtec and prelief. It helps some
I did a lottttt to heal. Rewired my brain, acupuncture, chiropractor care, worked with a Chinese medicine doctor and she was also functional medicine. I ate my safe foods and drank alkaline water while healing. I got trigger point injections around my pelvic floor. Went to pelvic floor PT. I used cantharis (homeopathic remedy) for burning. I left a toxic home environment, job, and relationship and that helped A ton. I was in therapy dealing with my trauma.
I am so sorry to hear about the amount of pain that you’ve been in. I can’t even imagine what you’re going through and I’m not going to try to understand or talk you out of what you want to do, but I will say that it looks like there are many people in this community who would be willing to speak to you if you ever needed it, including myself.
Please don’t do that and reach out for help…you are not alone Please call the crisis line (988) or (tel:+18009855990)
Message if you ever want to talk, because I'm in a similar situation.
I’m sorry you are suffering. I understand that it feels really hopeless but it won’t always be this way. Eventually you will find the right combination of things that help make things easier so you can live a more normal life. If you are at this point go to the hospital this is not worth your life.
I'm really sorry you are going through this. Interstitial cystitis is awful but please don't let it take your life. Try 988 hotline. Things can get better.
tought so as well, a lot has changed, im very happy im still here, hang in there my friend..
Better to change your diet than to end it all. Give 90 days … 30 into keto…with low oxalates…and then do 30-60 of carnivore and reevaluate. Sometimes the extreme elimination diets help us heal. And then reevaluate…see how you feel. Mental health- Dr. Georgia Ede, Keto, Dr. Ken Berry, women hormone’s Dr. Elizabeth Bright, oxalates Dr Sally Fallon-superfoods that are killing you. Carnivore Dr. Chaffee . So many informative YouTube videos. It won’t hurt to watch. Many health success stories. Good luck and prayers for you.
Please please do not end it. You can get through this. I know it is impossible but you have to
I felt this way when I had no relief for months. It does get better
Sending you hugs and strength. I felt like this last year. I’m here if you want to talk ❤️
Hi, please can I talk to you, I’m in the same situation
Hi! Sure of course. Feel free to send me a message.
I’m trying to send you a private message and it won’t let me, can you connect and then I will reply? x
please please read my post on this page!!!!
I'm so so sorry you're struggling. You are loved, you are worthy. Please reach out to a hotline and remember it can and will get better. I know this is a disheartening and debilitating condition. But you will get through it, just take it one day at a time. Get multiple opinions if you need to (and if you have, get more), and remember there's a lot of people out there that know what you're going through and are rooting for you.
This absolutely ❤️
I thought that, too, and I was depressed with suicidal ideation. I'm better now and in remission with the right meds and treating all of the aspects of IC that were exasperating things. I'm glad I didn't give in when i was weak. It's shit now, but that is no guarantee that it will always be this way. I dreaded being in pain for the rest of my life, but here I am, pain-free. Right now, you are hurting, anxious, and depressed. It's normal, and usually, it goes away with time. Remember that anxiety and depression are fuel to chronic pain. Do not ignore it bc it is a byproduct of chronic pain. You treat that too bc the better your mental health is the more quality of life you will have. My PT had me start mindful meditation and hypnosis. It does help funnily enough. Deep diaphragm breathing increases the blood flow, which aids with pain relief.
what meds did you try and what ended up working out for you? I’m on nortriptyline 75mg, vesicare 5mg, and hydroxyzine 25mg 3x a day. also taking the DH aloe vera. my symptoms are down from a 9/10 to maybe a 6 or 7, but I’m still having horrible flares out of no where. My diets been super basic, I dont notice a big correlation between my cycle and symptoms, I have no clue what else could be causing me to flare.
Im on amitryptaline 50mg and I take a longer cycle birth control since my symptoms flare from hormones as well as stress. So I get my period every 12 weeks and it has helped a ton. Amitryptaline took a year to work properly.
Hi, can we private message? I feel the same as the girl in the post, it’s like nothing will ever get better, I could do with some support, would you mind? Charlotte x
Have you tried duloxetine and/or amitriptyline? I’m really sorry. Please keep trying things.
What’s your experience with duloxetine?
As a person with very similar issues, I totally understand how you feel. I am so sorry this is happening to you. Please do not end it.
I don't blame you for wanting to. I've tried to disappear myself because of this condition. If that's what you want to do, it's your choice, but I'd advise that you take a step back and consider if wanting to end it is a spontaneous feeling that you might not even feel within a few months. There's also risks of what happens if you attempt but don't succeed, depending on how you choose to do it. Things that could lead to you still being alive, but living an even worse life. It's a major decision that shouldn't be acted on immediately and should be delayed. It's hard to say how long someone should wait. Maybe I'd suggest giving it a year from now and seeing if you still feel the same. You can always do it later. There are still treatment options to try. Could I ask how long you've had interstitial cystitis and what treatments and diagnostic tests you've tried? I remember reading a study finding that roughly half of IC patients are able to achieve remission. Most will achieve remission within 8 months, while it can take others up to 7 years to achieve remission. Because it's a syndrome, it's difficult to determine a cause or what the best treatment is. There are so many treatment options. Amitriptyline, gabapentin, hydroxyzine, botox injections, DMSO or lidocaine instillation, corticosteroids, aloe Vera capsules, quercetin, PRP treatment, so many others that I can't remember or know them all. If you haven't tried amitriptyline and gabapentin, they would be the easiest thing to try first since they're broadly used for chronic pain conditions. I saw someone else ask if you've been tested for mast cell conditions. There is a large estimated subset of IC patients who have mastocytosis or detrusor mastocytosis. These can be tested for through biopsies. Or the levels of prostaglandin D2, leukotriene E4 and histamine levels can be tested for in a urine sample. You may have an undiagnosed medical condition that can cause urinary tract and pelvic symptoms. Like there's such obscure conditions like lupis cystitis for example. Sjögren's is the most common autoimmune disease associated with interstitial cystitis. I'd recommend seeing an immunologist to explore the autoimmune branch of IC and see if you are found to have any autoimmune conditions. Mast cell conditions are also something that immunologists work with. Just tell them aaall the symptoms you experience, not just IC symptoms but literally any medical symptoms you experience. You can look at lists of autoimmune diseases and see if there are any that you have a significant amount of the symptoms. I saw in your post history that it hurts you to wear pants as well. I did experience this problem and it was completely horrible for the first probably 6-9 months. I do still have to be picky with what pants I wear but it's no way near how terrible it was for me in the past. Symptoms tend to be worse earlier on. At my worst for several months I was peeing 40-60 times a day. I've had IC for over two years now and these days I pee about 11-16 times a day.
How old are you? The past 3 years have been very hard for me. I can’t stand anything tight on my abdomen anymore. So I wear Amazon basic high cut underwear in large even though I weigh 110. They put no pressure on me. Also, loose fitting knit pants with drawstrings so you can adjust. But jeans don’t bother me for some reason. This is debilitating, I agree. Also, lidocaine gel I rub on my abdomen morning and night. Or bio freeze. They seem to help for some reason. Do you have pets? A warm body to curl up with is great. Spring is here! Sit in the warm sun if you can. Please don’t give up!
I’m so incredibly sorry for your suffering. You are not alone. Please know that you are valid and are seen and wanted in this world. If you are desperate and have suicidal thoughts, please reach out to the suicide hotline. There is no shame in doing so. Sending you strength and love and the will to keep going as impossible as it may seem - I hope you find something that can take even an edge off the pain and discomfort
I'm so sorry. Please don't end it. I've been there, too. This disease sucks, but there's always new technology coming out. I understand, and I sympathize.
I know it seems never ending, the pain, the frustration, the agony. But trust me your life is worth more than that. It always will. Please think it through. Remember the good times. Find good people and surround yourself with them. Never give up
Please don’t give up, the world needs you!! The ONLY thing that helped my symptoms was the big gallons of aloe juice from Trader Joe’s and aloe pills (there are randomized control trials on this) but It seems like your symptoms are more advanced than mine. Could be worth a try if doctor says no contraindications. Do you have a urologist? (Not sure of your gender but I started seeing a urogynecologist which was the key for me! All the other doctors never could understand and i felt helpless going in circles and never getting answers) I hope you find some relief soon, please find some help ❤️
I was once where you are now because of the pain but didn’t go through with it. That was 10 years ago now. I went about another year after that in excruciating pain and then went into remission. Now most days I have very little to no pain. I am not stuck on the toilet. I am glad I am still here. I hope you stay. The pain is not forever even though it feels like it will be. I know it is so intense and impossible to ignore. As others have said, go to the ER. Call the suicide hotline. But please don’t end it. There are good days ahead.
Sending you so much love and support OP. 💜 When I feel like this, I try to remind myself that there is no going back from ending it. I won’t ever know of new treatment options, I won’t see things get better, and I won’t ever open my eyes again to see the beauty in the world, even if it’s amidst the ugliness and hardship too. At my worst, I considered bladder removal and I will do it someday if it comes to that. Please keep looking for answers and keep going. You’re worth it. I’m sorry you are going through this and that doctors are shitasses. Your pain is real and valid and you deserve treatment that helps you. 💜
Where abouts do you live? Can you get access to dupixent injections? They really help my IC and I can live a somewhat normal life.
ooo this is interesting, i was on dupixent for my EoE, how does it help IC?
I don't know exactly, its a a type of biologic drug called a monoclonal antibody. Monoclonal antibodies are laboratory-produced molecules engineered to serve as substitute antibodies that can restore, enhance, modify or mimic the immune system's attack on cells that aren't wanted, such as cancer cells. So maybe it helps in this way. My IC is not cured, just manageable.
Hi- is your EoE related to your IC? Have you done anything that treats both? I was diagnosed with both in my 20s but the EoE I’ve basically forgotten about while the IC is life altering
I’ve had EoE since early childhood. I always have insanely large amounts of eos in all of my scopes, I’ve had 14. The interesting part is though, I am mostly asymptomatic, besides some heartburn on occasion. I’ve tried a ton of meds but nothing works for very long. CHOP is keeping me as a patient despite me being in my 20s as I’ve been part of their research studies since I was like 10. The IC thing is really strange for me as it only came on in November. I have hEDS so I wouldnt be surprised if its nervous system dysfunction. My biggest triggers seem to be stress and sex. IC meds dont seem to do much in terms of pain, maybe the frequency and urgency though due to being on vesicare.
What meds are you taking? and do you have a diagnosis of interstitial cystitis?
Sending love and hugs from and internet stranger. ❤️ I’ve been where you are, many times before and luckily in my 24 years of IC, I have found some relief. Please don’t give up your fight with this horrible chronic illness.
Please don't end it, there is hope. I believe in you. My messages are always open if you want to talk or just vent. I can't know exactly what you're feeling, though I have felt similar... just over it and ready to give up. You are not alone, even if it feels like it. You may feel stuck in the pain and mess of it all right now, but it can and does get better. There is something out there that'll help you. You are so loved, cared for, and SO much stronger than this stupid & horiffic disease. Please keep fighting. You can get through this🫶
i have experienced constant excruciating pain before as well, it feels like there is a knife in my urethra. for me, phenazopyridine has been absolutely life saving. if you’ve ever taken azo, it’s a much stronger version of that. azo stopped working for me so i went to a urologist and they prescribed it to me (and also recommended i look into IC and pelvic floor physical therapy). unrelated to IC, i’ve also been horribly suicidal for years at a time. neither of those are easy to deal with, especially alone. i promise those close to you don’t want to see you gone, they want to see you happy and free of pain but alive! there will always be an option for you, there will always be time for you, will never have been and never will be a burden.
Please don’t give up, love! I have been where you are and still have a really hard time with it. You are not alone! Lean on the people you are close with. They would rather hear about what you’re going through than lose you, I promise! Feel free to message me if you need someone to talk to. We are all in this together ❤️
please let me help you and give you advice from my years of urologist appts. i’ve learned so much and have tried so many different things, i too felt the same way you are feeling now. but last year i finally found something that worked for me and i almost rarely have pain or a flare up. i went from having excruciating pain every SINGLE day for YEARS.. to having a flare up maybe one day a month or every two months. i promise it does eventually get better with pain management and testing out different treatments. i would love to help you navigate this and can give you some insight on the things i’ve tried, and what really helped me
also have you ever tried bladder instillations? have you taken stronger pain meds (like oxy) for breakthrough pain?
I've been in this situation too. Please don't give up. There are more things to try. Something that helped me and was recommended by a female urologist: If you are anywhere near menopause, try Estradiol cream. You only need a tiny pea sized amount on your thigh twice weekly and the results have changed my life. Also, look at the medications you are taking. A doctor who was treating me for IC was also prescribing two blood pressure meds that CAUSE bladder pain. As soon as I switched meds my chronic pain was reduced to occasional flares. But anyway, for anyone desperate, please look into a little E cream and see if it's for you.
I’m so sorry I’ve felt like this so many times it is so extremely difficult :( I’ve had it for 6 years. IC is literally hell … I promise you I was where you are & I was able to improve my symptoms and I’m doing much better now. Please don’t give up!!!! ❤️ I have resources I can share to you! Just let me know!! ❤️❤️❤️
Hi, I am in the same place, could you please share your resources? Charlotte
Please don't. You can still find a way to feel better. I felt awful before but have gotten better with supplements and hormones. It is a long trial and error process but it can happen. Please let me know if I can help you by sharing some of the supplements that work for me.
Hi, would you mind sharing what supplements helped for you? x
Please get checked for ureaplasma and mycoplasma bacteria, these are known to cause interstitial cystitis
Please don't give up. The doctors haven't found out the reason this is happening to you yet. I was where you were five years ago. It took me a year and a half, four urologists (I got it right on the fourth try, he was wonderful and never gave up on me) and functional medicine to knock this into dormancy. Except for a couple of periods of extreme stress, I'm symptom free for the last five years. I hope for the same for you.
Would you mind sharing what worked for you, please x
Max0003, I read your post, and my heart goes out to you. I can empathize. It can seem so disparaging, but know this- I am praying for you. I pray for God’s healing hands on your body, and for you to experience relief. Even a day or two of relief can give us strength keep going! Don’t give up, please.
They have just discovered a vaccine
What?
Although maybe not ideal... have you considered the lion diet for an elimination diet and healing. 6 weeks of beef (or any ruminate meat), salt, and water only. Anyways, it may be worth looking into. Wishing you the best.
Hot yoga literally gave me my life back when i got to this point. You can do this!!
Curious how this helped exactly
My guess is my muscles were playing a huge part in my spasms. Pelvic floor therapy would work to get my out of spasms but they came right back. Something about stretching in the heat and yoga poses are amazing for stretching the pelvis, it was just what my body needed. I also think meditation did wonders for my stress that was playing a role in my flares too.
I understand that it’s stressful. I’ve had weird health issues throughout my life and felt like if they didn’t get better I might end up doing that one day but luckily for the most part stuff has gotten better, due to me googling everything. A lot of what has made me feel better personally was never medications (except for maybe allergy medicine) (talking about my other health stuff not bladder). I’ve had the most benefit from lifestyle changes and supplements. (Waking up at the same time daily and exposing myself to the sun. My megaspore probiotic helped me digest stuff again without being nauseous and having to eat 5x a day. You may feel like a burden, but if you die im sure those negative feelings will burden your family much more. Even if you feel like they are frustrated with you. My sister was bipolar and annoyed the ever living crap out of me and we weren’t even that close towards the end but it’s still negatively affecting me 6 months later. I’ve read about people that were in extreme pain from this but end up finally finding something that helped enough to make life worth living. Id understand maybe wanting to do that if you’ve literally tried EVERYTHING and nothing worked but have you really tried everything? Have you tried the desert harvest aloe Vera? Have you tried marshmallow root? Have you tried quercetin? Fish oil? Meditation? (Some flares can be trauma related) Have you tested your microbiome because people that have sibo have a strong chance of getting better if they alter their microbiome. Have you tried an elimination diet with just meat first maybe and introducing one food every three days? Do you have mast cell activation syndrome that could irritate your bladder? Do you sit too much? Do you drive with a memory foam pillow? Do you have a neurological issue? Can you take out your bladder? Have you tried the neurological implant device? Have you tried lowering salt? Have you tried supplements that are supposed to help your gag layer over your bladder or maybe collagen? Maybe acupuncture could help with the pain idk but I do know someone that did it for their back pain and it helped. Meditation can be beneficial if you aren’t sleeping well because it helps your body get deep rest and also helps you deal with stress and maybe pain better. Idk maybe talk to a different doctor because not all are going to know the latest treatments. Try one that specializes in ic. Google stuff for yourself. See what every single person in the world has done to feel better from ic. Are you low on hormones/estrogen? Maybe bioidentical hormones would help. Have you tried fasting and only drinking water? (If you’re healthy enough to do that blood sugar wise and what not)
Please stay alive and keep trying! There are so many causes and solutions. I went from constant pain to occasional flares but it did take me years to get diagnosed and then trying different treatments. I still have to urinate frequently and deal with urgency, but the pain is almost completely gone as long as I avoid my triggers and get hydro distentions as needed and keep up with my pelvic floor exercises. I take supplements and use vaginal diazepam suppositories as needed. I’m not currently on any medications, but I have weird side effects from so many of them and can’t tolerate them so that’s why. I can assure you that my pain is so greatly reduced that I never would have believed it even two years ago. I strongly believed that I would spend the rest of my life in unbearable pain after failing so many treatments, but here I am in so little discomfort that it doesn’t even really count!
CBD suppositories helped with my bladder pressure and ureteral irritation (not a cure but helped a lot)
Mast cell!!!!!! Please get help.. Dr Afrin is the go to guru on this.. tons!!!!!!! I have been told I have MAST CELL.. I was having insane UTI AND Spasm. I had to make changes.. d mannose supplement.. water only.. low histamine diet.. got on Zyrtec and Hydroxyzine.. and at times Pepcid as it is an allergy pill for stomach basically.. enzymes for food digesting.. please look into this.. I went everywhere.. I was even experiencing Capillary Leak Syndrome and until I went I to organ failure they were not give me IVIG.. I even went to Mayo Clinic in MN for 7 days.. I went to NIH in Maryland.. I reached out to Cleveland clinic.. I did this for 3 yrs!!!!! In and out of er.. urologist.. 50 drs in Austin. If ever ology you can think of. 30k in debt. Running a business .. self employed.. I know!!!!! I understand!!!! But that is. It the answer. I remember thinking it in dark times too. I ended up at a functional medicine dr who found Lyme.. mold tox.. heavy metals and more.. that stuff is very real.. I am better but still have flares.. pleaseeeee I beg of you. Take my advice to heart. MAST CELL can be completely systemic in crazy ways!!!! Like head to toe weird stuff!
And I was denied help by BCBS group insurance!!!!! They would not treat me! Insanity!!!!!!!! Adding you to my prayer list!
Do you have fibroids ????? I am assuming you are female.
I’m so sorry you’re struggling this deeply. I have these days too. Hugs. Don’t end it. Please. 🩷
Hi! I have IC too. The only thing that helps prevent it for me is getting rid of intestinal gas. I take activated charcoal and simethicone after every meal. Since starting doing this I haven’t had an episode (it’s been months). Idk if it’ll work for you but I hope you can try it and it will help. This condition is pure hell, I wish more was done about it. For now, I hope you get some relief.
I’ve thought this way before as well. Just know everyone in the comments section is here for you. You can get through this. If you need to talk please, please reach out. You are worth so much more.
Please try Dr Stewart Bundrick. He does Telehealth worldwide. Or if you’re in the UK, please try the LATS clinic in London. Worth a try before ending things. 🫂
The American Urological Association states that “Long-term oral antibiotic administration should not be offered” for IC due to lack efficacy and/or appear to be accompanied by unacceptable adverse event profiles [1]. Antibiotics help those with IC because antibiotics function as a strong anti inflammatory and pain reliever by themselves, even in those without infection [2]. Having pain reduction from taking antibiotics does not mean that you have a UTI. If you think you have an embedded infection, then you can discuss it at /r/CUTI. If you had symptom improvement by treating you pain as a chronic infection then you are welcome to post your experience as a new post, but please do not tell OP in the comments about how IC is a chronic infection (unless their post in explicitly about embedded infections). Keep in mind that the use of DNA testing for routine diagnosis and treatment of UTIs is still an area of ongoing research, is not yet standard clinical practice, and physicians may not take action based on the results due to lack of interpretation standards. 1. Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) - American Urological Association. (n.d.). https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022) 2. Pradhan, S., Madke, B., Kabra, P., & Singh, A. (2016). Anti-inflammatory and immunomodulatory effects of antibiotics and their use in dermatology. Indian Journal of Dermatology, 61(5), 469. https://pubmed.ncbi.nlm.nih.gov/27688434/ *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Interstitialcystitis) if you have any questions or concerns.*
To add to that, I’ve been dealing with this pure hell for 14 years. I came very close to ending things a few times. The things that finally helped me to the point I am now reducing my opioid pain meds after 14 years are: Dr Stewart Bundrick, HRT oestrogen and testosterone replacement (include internal oestrogen) and IgE food allergy testing, the skin prick type. Good luck 🤞
Magnesium saved my life. I hope it can help you too, I kno this suffering very well. I wish I could help in any way. Thinking of you, please don’t go.
My heart is breaking for you OP, I know what it feels like to be so hopeless, please don't give up. Your life is meaningful, you deserve happiness.
Nothing helps the pain? What have you tried?
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As valid as your feelings are, this is not the place to ask that. This is the thread of someone at their end and not wanting to continue.
You are loved! You can figure it out!
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Your post was removed because it broke Rule 4: No Absolute Causes or Cures for IC, No Blanket Statements. IC is caused by many different things. Please tell other posters what has caused or cured your IC, but please don't tell them what has caused or will cure their IC. If this was known, then we wouldn't have any need for the ICA. I.E. All IC is not caused by chronic infections. All IC is not cured by the diet. There is no single cause to IC; therefore, there is no single cure to IC. What constitutes a rule break is up to mod discretion. If you have questions about why your post was removed, please contact the mods via modmail.
It’s really hard to get a script for since it’s an addictive adhd medication but please try dexedrine. I guess adderall would also work because there’s dexedrine in adderall. I was bedridden for 3 years and it made my pain and urgency vanish almost instantly as long as I take it. The side effects suck ass and I hate taking it but it’s better than constant burning and urgency. There’s very little research on it for IC. But if you google it some will pop up. I also agree with the mast cell comments. It’s not some pseudoscience diagnosis. There’s a lot of research that connects it to IC. Start with taking an H1 antihistamine AND an H2 antihistamine together. So reactine and pepcid for example. You can buy these at a pharmacy without prescription. You can also combine them with a mast cell stabilizer like cromolyn sodium which you need a prescription for. A general practitioner would probably be too dumb to know what mast cell activation is by the way. You’ll probably have to go to an allergist or a naturopath who’s familiar with it. I’ve felt like ending it before so many times and I know it feels like no amount of logic or reassurance will help. Just please try the things above. It could change your life like it did mine.
For what it’s worth, I take 40 mg of adderall (branded only) and it doesn’t seem to make my IC better or worse
Have you considered botox injections?
I wish I could help. My symptoms went away. I’m trying hard to track down what I did to make it stop finally. Are you male or female?
male
I'm too the point here that I can't drink anymore then 2 liters a day or I'm completely miserable in life to where I can't even stand myself.
Hang in there man, the world loves you. There are still options. One day you’ll look back on this and be grateful you stuck it out.
Hey, I’m not sure if this will help but I felt like this for years on end I was in so much pain and I couldn’t deal with it anymore. After 4 long years my symptoms finally started to let up and now I’m in remission (no medication). I’m not sure how long you’ve been battling for but there’s every chance you could get better our bodies are just so hard to predict. Just know that we’re all in this together, we feel each others pain and you will always have us to confide in. I’m so sorry this is happening to you but please speak to a professional ❤️
I promise it gets better! Two years in and I’m healing.
Get microgen testing. Make sure it’s not a UTI. I just tried Botox and after the infection clears it should help. It helped the second week. Do Pelvic therapy
I get this. I have multiple chronic conditions from bladder issues to me/cfs, fibro, endo, pcos, pmdd, digestive issues. It's all become so much that I get to moments like that where I just don't want to live anymore because it's never ending and I feel like a shell of myself. I'm.so sorry you're suffering. I'm still going, for now. But mentally and emotionally It's rough. Please reach out. I'm not going to tell you life is worth living but I will be a friend if you need someone to sit in darkness with you.
This is me I can’t cope anymore I have bowel bladder pelvic pain and burning and redness throughout my whole body with no end or treatments in sight I just want to die 😢
I’m starting to feel like my me/CFS is just caused by the fatigue and absolute depletion that IC causes
I really hope this gets to you. Please stay. The 23,000 people here in this group show that you are not alone in your pain. You matter so much. After a long time of thinking I couldn’t deal with the pain of IC I have found so much happiness in staying. Celebrate the little things because you are worth it. If anyone else knew even half the pain that we go through in our daily lives, I know they would be celebrating right with you. Don’t let doctors push you around don’t take no for an answer. It’s a trial and error journey but so many people here have found hope through different diagnosis. We are all here to help each other.
Please don’t, I know it hurts.
I’m seriously shedding tears for you. Maybe you can have the bladder removed
De Bundrick in Louisiana will remove it. Call and become a patient.
The American Urological Association states that “Long-term oral antibiotic administration should not be offered” for IC due to lack efficacy and/or appear to be accompanied by unacceptable adverse event profiles [1]. Antibiotics help those with IC because antibiotics function as a strong anti inflammatory and pain reliever by themselves, even in those without infection [2]. Having pain reduction from taking antibiotics does not mean that you have a UTI. If you think you have an embedded infection, then you can discuss it at /r/CUTI. If you had symptom improvement by treating you pain as a chronic infection then you are welcome to post your experience as a new post, but please do not tell OP in the comments about how IC is a chronic infection (unless their post in explicitly about embedded infections). Keep in mind that the use of DNA testing for routine diagnosis and treatment of UTIs is still an area of ongoing research, is not yet standard clinical practice, and physicians may not take action based on the results due to lack of interpretation standards. 1. Diagnosis and Treatment of Interstitial Cystitis/Bladder Pain Syndrome (2022) - American Urological Association. (n.d.). https://www.auanet.org/guidelines-and-quality/guidelines/diagnosis-and-treatment-interstitial-of-cystitis/bladder-pain-syndrome-(2022) 2. Pradhan, S., Madke, B., Kabra, P., & Singh, A. (2016). Anti-inflammatory and immunomodulatory effects of antibiotics and their use in dermatology. Indian Journal of Dermatology, 61(5), 469. https://pubmed.ncbi.nlm.nih.gov/27688434/ *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/Interstitialcystitis) if you have any questions or concerns.*
I have not read all the comments so please forgive me if I am repeating what someone else has said. I am so sorry & saddened that you are at the end of your rope. I can only imagine what you are feeling. I have one suggestion - find a functional medicine doctor. He/ she will look for the root cause of your agony and help you fix that which is broken. Another option is a naturopathic doctor. Who ever you choose, vet them carefully. You don’t have the bandwidth to deal with someone who doesn’t know what they’re dealing with. Functional medicine practitioners & naturopathic doctors find the root cause; conventional medical practitioners treat symptoms and do not seek to heal. I realize this is not immediate relief but I want you to have hope while you find a medical partner who will help you. Sending you love, prayers, and strength as you navigate this tough situation. Please keep in touch.
They have developed a vaccine for recurrent utis. It is available in Spain, and is just coming on line in the uk. It has had some success in reducing frequency. I am finding using d mannose 3 times a day helps
you don’t deserve this. i’m so sorry.
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Your post was removed because it broke Rule 1: Respect. Disrespectful comments include things like: insults, excessive snark, discouraging people from posting or asking questions, questioning the validity or seriousness of others’ symptoms, and sexism/racism/ homophobia/transphobia etc. What constitutes a rule break is up to mod discretion. If you have questions about why your post was removed, please contact the mods via modmail.
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This is insensitive as all get out! What works for one, does not work for all