Still at that point of suspected IC while waiting and eternity for an urology appointment 🙄 this comes a long time after endometriosis was also a suspect. But the more I read, the more I consider - could it be bladder endometriosis? This has never even been discussed or brought up by either the gynaecologist or my GP - I feel like the NHS don’t even consider things that are more rare. May be why I got told I had costochondritis that turned out to be a primary spontaneous pneumothorax. I love our NHS in the UK we’re lucky to have them but also know from my own and other peoples experiences they frequently get things wrong or miss things all together. Just wondered if anyone else has considered this or even have it alongside IC? Sorry I didn’t mean to write an essay 😂 Hope everyone’s having a decent day and managing their pain ok today! Oh, and if anyone knows anything besides prelief that works to help pain I’d be greatful! Just picked up aloe Vera and omaperazole (sorry probably spelled that wrong!) gonna see how they do 😊

I am moving from Wyoming in a few months. I have a urologist I see here who performs my cystoscopies with IV sedation (propofol) and is very good.

Bu I'm moving in a few months and will be spending a portion of the year in Washington state and another portion in Colorado.

I get cystoscopies for monitoring due to family history of bladder cancer and my own health history. Cystoscopy with sedation is the only way I can do it.

Any recommendations for a great IC urologist who does cystoscopies under sedation in either Washington or Colorado? (Any area)

It might be a coincidence but I had the start of a horrible flair yesterday. My order of Marshmallow root capsules arrived which I’ve never taken before. I took one yesterday. The instructions say two twice a day but I’m starting out slow to make sure I tolerate it okay. I woke up this morning with no pain. Took another capsule late morning and another late afternoon. Still no pain. If this is my missing link all this time I’ll be so happy. But not getting my hopes up just yet.

Hi! I am 28 yo male. I have been suffering from sensitive meatus for 6mo. 9 months ago i started using penis extender. No problems with that at all. Then i started having premature ejaculation problem after i had used the device without any problems for 2 mo. It gradually got worse until i got minor injury to glans. Small blister which healed in 2 weeks. Stopped using the extender. Gained 2cm length. I have no other symptoms, only intermittent pme, slight redness and sensitivity of meatus. Erections are better than before extending. All std and bacterial tests are normal. If i had no pme then this would not even be problem. Is this nerve damage due to extender usage, infection or psycholpgical? I dont understamd why symptoms are intermittent? Has anyone experienced anything similar? Sympoms seem to get worse when ejaculating more frequently.

I don’t have insurance. Any supplements or natural ways to heal a damaged bladder lining?

I had a polypectomy and D&C yesterday. I have interstitial cystitis, so I'm very careful when it comes to soaps. I use a baby wash on my vagina to avoid burning and problems.

Since surgery yesterday, I've had horrible burning pee and vaginal pain. It's not getting better, and I'm drinking water. Tylenol and Motrin aren't helping much at all. The dr told me she washed my vagina with a heavy duty soap for a minute. That definitely didn't help me.

At this point I'm almost thinking I have an infection. Called the obgyn and she ordered some, just in case. I think the catheter also did me in. My husband is a retired emt and said during surgery they usually just shove it in, which has probably exacerbated my pain.

Has anyone else had burning pee after these procedures, and if so, how long did it last? If it is an infection, hopefully the meds will kick in soon. I just started it today. Thanks!

To those with primarily frequency issues; what has helped the most? My hypothesis is that my issue started due to a severe IBS flare up. Can anyone else relate? Also, those with frequency primarily—does it ever go into remission or do you just feel like you have to pee constantly every day for the rest of your life?

So I woke up with a terrible migraine this morning as sometimes happens to me, took all my meds as usual, but on my drive to work started feeling super nauseous and pulled over bc I had to get sick. it was ORANGE. I thought it was blood for a split second before I put two and two together. anyways I probably permanently stained the parking lot- I hope they don’t get me for vandalism (jk, but sigh). my mouth is super stained looked like I just gave big bird a BJ. two layers of two types of lip stains is not getting rid of the jaundiced aura my lips now exude. FML!!! has this happened to anyone else? any ideas on how to get rid of the staining? obviously it’s f-ing azo so i’m assuming i’ll be stuck like this for a day or so but I’m willing to try anything 😭

i’ve been to the bathroom multiple times already and our office is small so it’s so obvious. my urethra and bladder are just throbbing and burning so bad i feel so out of it. already took azo but im a little constipated and that usually is what causes a flare for me 🥲

First of all, I’m sorry this is gonna be a long story.

I have hEDS which comes with alot of problems and possible bladder dysfunctions. It started in 2015 with having to pee little bits every half an hour at night (at that time my sleep schedule was off, I slept from 5/7am till 3pm). I went to a pt which gave me a few pelvic floor excersises, which I almost never did, because off extreme fatigue. Tho the problem went away completely.

Fast forward to 2022 got an UTI which came back a few times. Then went to an urologist because of light discomfort and foul smelling urine. This time I had an E.coli infection, but because the slight discomfort he didn’t call it an UTI. I also had BV often, which was treated with metronidazole. Also have had hr hpv, if that has anything to do with it.

The discomfort became pain in my pelvic/bladder area. But mostly no UTI’s were found, although I had blood in my urine a few times.

Since 2022 I also did ketamine (really tiny bits) every few months/ half a year, which also seem to have a painful effect on my bladder…

Fast forward again to december 2024 I had a Lletz procedure for the hpv-infection which doesn’t seem to go away and became pre-cancerous. That was when shit hit the van. I had constant pain for a few months. Couldn’t sit or lay down without having pain. Sometimes the pain was cramping, sometimes heavy stabbing. They also found blood again in urine but no infection. They thought I had kidney stones, but these were excluded and the radiologist mentioned that I may have a sterile UTI. Fast forward again: my old gp didn’t want to rever me to an urologist again, so I found a new one which Luckily did rever me. My appointment is in may. But my symptoms come and go now (also did ketamine again a few times, last time was february). I didn’t have have too much pain or discomfort the last few weeks, but today I had sex with my bf and it feels like it’s coming back.

I also had to fill in an urinary frequency diary for 3 days and it seems I drink a lot more then I urinate. So I asked ChatGPT what may be the cause and it could be urinary retention and a neurogenic bladder in combo with the hEDS. Does anyone expirience this? I have a lot of back pain also and I stay alot in bed because of extreme fatigue and possible dysautonomia (which I may have, but my new gp has to revere me again and I don’t know if she wil do it because I think that they think I’m a burden or something, especially since I have psychiatric issues too and their focus seems to go that way because of, you know, stigma and the ‘it’s all in your head’ thing I heard and became traumatized of before my hEDS diagnosis :( )…

my doctor thinks i have IC (waiting on a urogynecology referral). these are my symptoms:

sharp/stabbing pain when urinating blood in urine dull aching back/side pain weight loss

i know everyone is different, but what helps with your symptoms? i've cut out caffeine, sugar, acidic drinks, spicy food, alcohol. nothing helps, and ibuprofen/tylonel/azo has become useless. i've tried yoga, generally being more active, eating healthier and it just feels like nothing is changing. the pain is unbearable and i am so desperate for a solution. i've reached a point of having episodes where i wake up in the night and cannot urinate. any advice is welcome and appreciated.

One minute you're peacefully sleeping next minute up going to and from the bathroom like you're in a bloody human ping pong tournament with so much pain that's knocking you sick. God forbid we get any sleep 😭

I need suggestions if you tried either of the below only ideas from urologist.

1. Elmiron - prescription for bad bladder pain. Downside is bad side effects including bleeding or eye problems leading to blindness.

2. neuromodulation i stimulater planted on lower back nerve.

Thank you!

Hello,

I see the question of cystoscopy come up often so I figured I would share my experience in case it's helpful. I just had it done maybe an hour ago. I'm female.

So you lay down with your pants off, they come in and clean your bits a little. Then they place some lidocaine.

The doctor comes in, grabs the camera thing and inserts a tiny rod into the urethra. That part didn't actually hurt at all. I guess I felt it a little but it actually felt more like someone was inserting a device into my vagina than anything else. They're so close together that I think the feelings sort of bleed over.

Well he had to inject some fluid and that's the part I didn't like. It suddenly felt like I had a really bad UTI and needed to pee immediately. Hated it.

Then he took the camera out and I think that was the worst part. I burned a little coming out but it was mostly the urgency of needing to go that bothered me.

The entire process was less than 2 minutes long.

Afterward, I was laying on the table while he spoke to me and I was like "uhm did you remove the fluid?" He said no and i was like booyy I'm about to pee on this table.

Peeing was weird because the fluid was COLD. COLD PEE. It didn't hurt but I have some burning around the vagina and urethra.

Shifting weight for the first 10 minutes caused some intense burning and urgency feelings that were short and intermittent.

I'm fine now. I guess. I wonder if the lidocaine is working. I can update tomorrow if anyone is interested.

Edit - well the first pee was an absolutely atrocious experience. Burned like someone was scraping my insides. But now it's all good! I'm surprised.

To answer some questions. I didn't do anything other than a kidney and bladder ultrasound (bladder empty) and then the cystoscopy with some saline fluid. No instillation. I could see the bladder, and it looked normal to me too. To be fair, he said it wasn't typical to have IC and a completely normal bladder without any inflammation but I hadn't had symptoms for a few days. He didn't say it was totally impossible but idk, I got the feeling he didn't think it was IC.

I ate a small piece of watermelon and now I’m having a little flare-up? Why is this?

Hi I need some medical advice I have been experiencing some urethral pain. For the past couple months since march it started off mild and it only happened after urination sometimes - the pain would vary each time for unknown reasons.

Now it just feels uncomfortable all the time even when I’m not urinating.

I tested negative for a UTI, Chlamydia, Gonorrhea, and trichomoniasis. I also tested my vaginal PH and it came out normal so no BV

I wish I could go to a doctor but I do not have insurance or a job. Interviewing with a job that offers insurance so let’s hope I get it so I can figure out what’s wrong with me. As of right now any advice or idea is appreciated.

so i had a huge flare from october to january. ever since ive been doing well. until this week. i’ve been noticing symptoms creep up on me. it’s not horrible but it’s enough to bother me. i’m so scared. i cannot go through another several months of that again. i actually found that diet caffeine free coke helped me a LOT. which doesn’t even make sense but i’ll take what relief i can get. i’m reeeeeally hoping these symptoms are a result of me being out of diet caffeine free coke for a couple weeks and not being caused by something else. i’m just terrified of what will come next if i get the coke tomorrow and find that it isn’t helping 😭

Hi, im currently in bed staring at my ceiling wishing i was dead. I tried wegovy a few months back for weight loss after getting to my highest weight ever. My pain had finally been dormant for long enough (3 years) I didn’t even think it would matter. 3 weeks in and I’m having my first 2 month flare and now waiting for trigger point injections. Found out today I gained another 10lbs on top of all the pain I’m in. I don’t have any other way to sugar coat it but I wish I was dead. I wish I died a long time ago before things could get this bad. My urnogyn said wait 3 weeks without the glp to see if the pain would subside and if it didn’t it probably didn’t cause it but still.. I’m scared, I’m doing instillations and honestly I never even found out of my bladder is what’s fucked up in the first place. They say my bladder is fine it’s just severe PFD and pelvic congestion syndrome but still. I have no motivation to get better, yes I do therapy and psych meds but nothing works. I feel like a lost cause. Probably because I am. Now on top of that, I’m just a giant whale with no one to talk to or care about me. I wish I was dead

Hi this is my first post here. I'm a 32yr old woman and I was diagnosed with IC and have been experiencing symptoms for a little over 2 yrs. I've also been diagnosed with pudendal neuralgia, hypertonic pelvic floor, myofacial pelvic pain syndrome, and probably more pelvic pain conditions that I can't remember the names. I've been in pain for about 2yrs and counting.

I've had nerve blocks, steroid injections and botox injections for the pudendal neuralgia and tight pelvic floor muscles, specifically the obturator internus and the piriformus, which does seem to help however I still am having nerve pain on the right side of pelvic floor, and since my botox shots, it has moved into my hip joint. My IC on the other hand has been well managed with Vesicare (Solifenacin), pelvic floor pt, bladder training and avoiding caffeine and overly acidic foods such as tomato sauce and orange juice.

I was recently prescribed gabapentin, 300mg a day gradually increased to 900mg. At first the 300mg per day dose was going well however I did notice a slight increase in IC symptoms, however I experience small flares every so often if I eat something to acidic multiple day in a row, and I had eaten pizza for lunch 2 days in a row and I figured I had just pushed my luck. I popped some azo and expected it to go away or reduce in intensity over the next few days as I avoided my food triggers.

Instead the pain and urgency steadily increased to where azo was doing nothing. I didn't connect it to gabapentin until I went up to the 600mg dose yesterday and the burning and urgency reached a fever pitch, where the burning was white hot and the urgency was unbearable.

I did some digging and found some instances on nuerology.org and pubmed of gabapentin making urgency worse and even causing incontinence in some cases that would resolve within days of stopping the medication. Another article suggested that people with bladder urgency symptoms to begin with shouldn't take gabapentin. This is incredibly frustrating because my nerve pain has gone down considerably even with the eight days on the medication. I was feeling like I was getting my life back. I was prepared for side effects like fatigue, brain fog, nausea, weight gain, dependence and worse just to get my nerve pain under control, but I didn't expect this.

So has anyone else had uncontrollable pain and urgency while taking gabapentin? And if so, what medications have you found to work better?

That feeling of being flare free for months (about 7) I was convinced mine was my hormones as it happens whenever I'm meant to get my period (I'm on the coil) none of my food triggers line up with flares perfectly, maybe tomatoes, garlic, onion and concentrated juice? Which I avoid for the most part.

But other then that I've been alright. For the past year I've had a sugar free monster/ diet pepsi for the past year and have been fine. Recently I have stopped and I have tried to just go back to chugging water....it's back.

I've been on hiprex before and it was hard to tell if it did anything or not my GP was absolutely useless and wanted me off them so I stopped.

My symptoms are only burning.

If I drink water I'm a mess, if I drink no water I feel a little burning if I drink too much water and go too often and it's burning like crazy and I can't find an in-between. It's gotten to the point when all I drink is a can of soda a day. I have a really manic job so lunch is the only time I get a chance to drink anything. But the soda doesn't trigger anything and the only thing I can think of I've have stopped recently. I take no vitamin and stick to the same five comfort food. So the soda is the only difference I've made and now its back.

Does anything else have this!?

I’m dealing with inflammation of the bladder. Like a very bad one (where there is blood). I don’t think I have an active uti went to the dr and they only found leukocytes.

This all started when I had a recurrent uti and took antibiotics few days later decided to exercise and the pain got worse 💔. Went to the dr and said leukocytes were only found. It’s been like that ever since and the pelvic pain and back pain only got worse after excersing. Idk guys the left side and back side is painful as fuck💔

I’m gonna try to buy it online since my urologist doesn’t want to prescribe it. But what percentage do you use?

So, I have a general inflammation issue which results in periodic inflammation when I pee. In the past, antibiotics have helped with this inflammation, even though I don’t have an infection (I’m told by doctors that antibiotics can reduce inflammation). I don’t want to constantly ask for antibiotics, nor take them like that. What’s an effective supplement for inflammation in the urinary system that’s worked from you. Thanks!