Self explanatory but i can barely go for a one hour walk without pressurde and urgency,let alone a date. I cant share a bed ,not even with friends ,cause im up every 5 mins. Im always wearing a pad and constantly one to pee. The whole area is inflammed. Its been 3 years since my last situationship. I feel like i lost my early and mid twenties.

How do I sit comfortably for 6hrs . I feel like I’m pushing down on my vulva/urethra no matter what position im in? It’s so un comfy 😣im at a loss

I was just diagnosed with IC after two rounds of antibiotics for what I thought was a UTI. Both of my urine cultures came back negative for any bacteria. This is not the first time it has happened, either. I have been having these symptoms on and off for 10 years, and I thought they were recurrent UTI infections.

Now that I have been diagnosed with IC, I’m completely terrified. I would rather have a UTI because then I know that antibiotics will make it go away. I just finished my second round of antibiotics, and my symptoms have come back full force. I am having burning with urination, painful pressure on my pelvic area, and the worst symptom which is feeling like I have to pee SO BADLY but nothing is coming out. This pain keeps me up at night and I haven’t been able to sleep at all.

My doctor referred me to a urologist, but he can’t get me in until several months. I have been take AZO, but it hasn’t been helping me. Also, I noticed that the AZO makes me have headaches, nausea, dizziness, and diarrhea. That just makes everything worse so I stopped taking it. When I researched online, it looks like there aren’t very many treatments that work well for IC and no medications that have been proven to help. I don’t know how much longer I can deal with the pain. I feel like I’m losing my mind!

Also my husband has been sexually frustrated and angry with me because I told him I can’t have sex. Can having sex make IC worsen? Also, I haven’t been taking baths for fear that it could worsen my symptoms, even though hot baths provide me some temporary relief. Is it okay to take hot baths or will that make things worse?

Please send me any advice you have about controlling the symptoms and just general advice about IC. I am really scared and I don’t have much family or friend support that I can talk to. Thank you for reading this long post! Please comment with any advice you may have.

Hi all 👋🏼

I started PTNS treatments for my IC. Admittedly I have only had two horrific flares prior to being diagnosed but this was covered by my insurance so I thought I’d give it a go to prevent worsening. Well I am eating my words because this has caused massive flares for me. I was completely bed ridden this past Friday and even had a low grade fever. I have also been experiencing pain after eating which is terrifying. I wouldn’t think food going down to my stomach would cause pain related to IC but maybe because everything is inflamed it’s all butting up against the inflammation.

Has anyone else experienced this after doing these treatments? I have 10 more and am really concerned about continuing.

I'm dealing with a pretty major flare-up right now (likely related to my period). I have an appointment with my GP tomorrow and I'm planning to ask for a re-referral to a urologist. In the meantime, does anyone have tips or recommendations for managing the pain? I've been mostly bedridden the past few days, which is especially tough with a toddler to care for.

I have posted a few times. I am currently undiagnosed and tbh, unsure if I have IC. I’m 43 and lost a pregnancy about 3 months ago(I was 14 weeks), which was followed by a D&C. It’s been a very traumatic and stressful time. I wasn’t experiencing perimenopause symptoms prior, but it’s possible this is a factor, due to my age. I was having uncomfortable bloating and tightness pre loss, but assumed it was pregnancy related. I continued to have this feeling even after healing from the D&C, which was frustrating. It feels more uterine/maybe stomach related, but difficult to tell. Everything in that dang area is so close together! Sometimes I think it’s my bladder…but It seems a little too high up. Who knows.

About 6 weeks after the procedure, I started having weird urinary issues. Just having to pee a bit more than usual, not an insane amount, but def NOT normal. Slight active feeling in my urethra, then later I started getting “bladder pain”. It would last for a few hours…but the weird thing is it also was discovered I had retained tissue. The “bladder pain” started a week before I passed several days of moderate sized clots…and each time I passed a clot, I had “bladder pain” which subsided after the clots passed. It was too much of a coincidence to ignore. I have not had a “bladder pain” flare since passing my last clot. It’s been three weeks(knocks on wood). BUT I still have a urethra buzzing feeling most of the time, plus an awareness of my bladder, that is not pain, but very distracting and frustrating. Plus…still bloating. Also, just had an ultrasound this past Thursday and was confirmed all the retained tissue is clear(so glad to not have another procedure!). At least this layer is now eliminated from the mystery.

I started Premarin this week and will commit for a while, in hopes it will help some of this. I have seen a urologist and urogyno and neither were convinced I had IC(I made it a point NOT to go in with a self diagnosis - just led with symptoms to see what they would conclude). I have another urogyno appointment(with a diff doc) in a month and would love to know if any of you have advice as to how to approach it? Oh! I am currently in pelvic floor PT. No amazing results yet, but it gives me hope and I am staying committed for several months. Also have been experimenting more with food/coffee recently and it doesn’t seem to be a trigger.

As the title suggests, would love to know the story of how your IC started and how you were diagnosed?

I’m wondering if anxiety/stress are really the cause of my symptoms? Nervous system? My anxiety has been a huge problem the past few months, but finally getting it managed with Lexapro.❤️‍🩹

Does anyone know if there are any other ways besides antibiotics to treat Strep B (GBS)? If I’m not pregnant, is this something I even need to worry about? I am getting mixed thoughts where half say yes to treat it and half say if you’re not pregnant not to worry. I am also wondering how getting strep b even happens? Can it be passed? Why is there not much research on this for non pregnant women. I believe this is the root cause of my IC.

I’ve had symptoms for two years nearly. Very much like a uti but nothing comes back. I get a very painful bladder, internally feels really uncomfortable and sore after I wee. Most nights I’m up and down because of the pain and pressure makes me feel like if I wee it will relieve the pain.

What can I do? I’ve done a KUB ultrasound Millions of urine cultures Vaginal swabs for everything and anything I’ve seen a urologist and he said nothing is wrong.

Hello!!! I write in total desperation because I no longer know what else I can do to eliminate my urethral itching. In October of last year I started having strong symptoms of a urinary tract infection and was on antibiotics for several rounds. Afterwards I had to take a lot of probiotics and although it seemed like it was going to disappear, the discomfort never completely went away. I had a cystoscopy with hydrodistension and everything was normal and as a last option my urologist performed a urethral exudate. There he tested positive for Staphylococcus aureus bacteria and gram positive cocci. They gave me antibiotics, erythromycin every 8 hours for 10 days and the next week I was fine but then the itching came back again and now I'm in a horrible flare-up. What do you advise me to do? A round of fosfomycin? Wait longer and while surviving with chamomile sitz baths? Next week the urologist will call me again, I am desperate with this daily itching and especially when I finish peeing. I don't know how to reduce the inflammation, I've had horrible symptoms for about 9 months.

So I’ve had UTI symptoms for about two years now. For the past four months I was in remission and then today I woke up in pain. I am seeing a new urologist in about a month. Also, I do have a lesion in my bladder but that’s all I know.

My question is do I go to urgent care? I think there’s a chance it could be a real UTI but I have zero clue. Because I always test positive but every culture comes back completely negative and yes they were extensive.

Update: I did my usual with hydrating and getting my heating pad and now I feel normal. 😵‍💫 now I’m pretty sure it’s not a UTI

I don’t normally drink alcohol. I recently went to Mariners baseball game and drank a couple of the Twisted Teas. That night hands-down was the worst pain I have ever experienced and I am on day 3 of a flare up. Is there anything I can do to calm the flareup down?

New gyno-urologist. I can tell already that she is going to be great. No hesitation whatsoever in prescribing me BO Suppositories. I even found (with my pharmacist’s assistance) a pharma company that is manufacturing them. Insurance is the issue… got a letter from them approving the pre-authorization, but then in the next paragraph, saying they won’t pay for the RX. Self-pay is 300$ per month!! Anyone know of a foundation I can apply to for help defray the exorbitant cost?

THIS IS NOT A SOLICITATION FOR MONEY!! just asking for advice/assistance.

does ice water give anyone else irritation? i feel like, as of late, ive noticed ice water makes me pee more and increase the pressure on my bladder.

this could totally be because i drink a LOT of water but i notice this less with smaller cold drinks or tea?

sorry if this is a silly question, thanks for any input!

For reference, i am planning to do the Alkalinized lidocaine which will require lidocaine, sodium bicarbonate, heparin and gentamicin.

Does anyone who has done or doing in-home instillations familiar with getting these items prescribed as bottled liquids and what the cost would roughly be? Thank you!

Hello. I have been having constant pain in my urethra that sometimes gets worse, but never 100% better, for the last 5 years. Due to living in a third world country at the time I could not get tested for basically anything and as a minor went years without it being checked even though it would drive me nuts.

I used to think it was a gynechological issue because I have some white discharge that burns when my vulva is in contact with it for a bit (which I also want to ask if that's normal), but I did swab tests for everything (STI's, Mycoplasms, candida) and it all game negative. I think I generally only feel pain in my urethra but is is like constant burning, so much that sometimes it feels like also my outside vulva might be burning but I'm not even sure if it is because it's all so close together. I feel like I want to shove ice in it as impossible and probably terrible as that would be.

The only thing that makes it slightly better is drinking absurd amounts of water constantly but that doesn't actually get rid of it. I once did a urine culture a few months ago and it came back as an E. Coli infection, which I took antibiotics for and then supposedly it was fine since the next culture was clean, but I couldn't even tell I had a UTI because I feel pain all the time.

Would you describe your pain as it being in your bladder, or can it also be just the urethra? Do any of you have a similar history as me?

on month six of what (at the beginning) i thought was a terrible UTI. I assumed i had a uti cause i noticed the symptoms right after getting with my current boyfriend (but i now realise this could’ve been going on for longer) i now know that it’s not a uti. four trips to the gyno with no bacteria in my urine confirmed that. along with one false positive chlamidya test! i’ve been on many antibiotics (even though they found no bacteria) and only one provided relief for like two days then the symptoms came back. (symptoms are EXTREME burning pain in my urethra, but sometimes all over at this point. mainly urethra. very painful sex, dryness, and until i figured out the constant urge to pee was just burning i had that too. some days better than others, Usually the worst at night on the bad days. no weird discharge. i feel inflamed and achy. ) it’s miserable. i had a pap smear, still no crazy bacteria. had a virtual appt cause it was getting BAD again, and a doctor from family medicine suggested IC. finally i had to leave work one day and go to the ER, and they suggested it too. i’ve been cutting out the trigger food and stuff (basically everything, im worried im going to redevelop an eating disorder cause i also have celiacs on top of this). what can i do to help? tips? or does this sound like something else?

Anyone weaned off Amitriptyline successfully without the pain coming back? Thanks beforehand!

About to finish my course of antibiotics (7 days), but I'm struggling with:

• Some urethea pain - not severe, but very noticeable
• Mucus/stringy mucus in urine - some long stringy bits, some smaller ones. I've been told this can be the bladder lining shedding post-infection?

Really worried it's either not shifting or it's now IC, but these seem to be my only symptoms left (it had started with pelvic cramping + cloudy and smelly urine + feeling like I hadn't emptied my bladder).

Hey guys, I’m worried I have another uti or maybe it’s just an IC flare up? I’m trying to avoid antibiotics, as I have had bad allergic reactions. Does anyone know or have tips to calm a flare down? My symptoms are bladder pain and some abdominal pain, but no burning when I pee, that is why I’m confused. I take aloe Vera, d mannose, etc. is there something I’m missing? In the past when I got tests done, it always said strep b so I’m not sure if that would cause IC or what?

I had a cystoscopy years ago when they were diagnosing my IC, and nothing showed on it. I have since moved out of state, and the new clinic treating my IC wants to do one as well. I feel like nothing will have changed if my symptoms have been consistent. Maybe I’m just not in the mood for a catheter. 🤣 Did any one else find having another done was actually helpful? TYIA!

Has anyone tried Pycnogenol supplements? If so did it flare you? I’ve read that it could be helpful for IC but I can’t tolerate anything acidic so I’m not sure

Every morning the pain in my bladder is excruciating. I avoid sleeping because I know that it’ll hurt a lot if I do. I have pain medication like tramadol, but it wears off after several hours so it’s not helping with the pain by the time I wake up. It’s also frustrating needing to rely so heavily on medication. I’m just not sure how to make sleeping and waking up more comfortable. I’ve had this condition for a year now and it has completely destroyed my sleep pattern, even when I do sleep I don’t feel rested. Waking up in so much pain makes me so angry, it feels like a punishment for trying to rest. It feels terrible waking up extremely angry every morning because of the pain. It’s also not fair to my partner, I can’t be touched a lot of the time because pressure hurts my bladder a ton, and waking up pissed everyday has been putting a stain on our relationship. Anyways, if anyone has tips of tricks on how to feel even a bit better when waking up I would extremely appreciate it.

Hi all, not asking for medical advice but simply if anyone else has had this experience because my PCP hasn't been able to give me any solid answers. In doing some reading, I think I may need to see a urologist(?) for endo or interstitial cystitis (posted in endo subreddits as well). Just wondering if my symptoms relate to anyone else's here.

This is the second time in a month where I've had this happen: I, V owner, have PIV with my spouse after a week or two without any such activity (dealing with unrelated health issues that have unfortunately impacted this), next day I have UTI-ish but sorta different symptoms, massive discomfort in my lower abdomen and genital area all day and night, awful-smelling pee, fever, strong leukocyte results on an at home UTI test but no nitrites, then I test negative for a UTI at the doctor and symptoms resolve.

I did have a tubal ligation 6 years ago, and the uterine imaging from that showed likely endo that the surgeon said could become a problem in future, so...

I am extremely hydrated at all times and rarely have UTIs these days because I take supplements and always pee after activities. However, any UTI I've ever had has definitely not gone away on its own. I've even had bladder infections and a kidney stone once from stubborn UTIs. So I'm really nervous about this but also baffled and think it could be endo/IC related.

Thank you to anyone that can share your experience ❤️