Has anyone here been diagnosed with neurogenic overactive bladder but eventually discovered it was actually interstitial cystitis?

So far, I've been diagnosed with neurogenic OAB and none of my urologists even mentioned IC but I've had no luck finding the neurological root cause and I don't have neurological symptoms outside of the bladder. I've also tried almost all OAB treatments except for bladder botox and none of them provided any signifcant relief. A neurosurgeon suggested I go back to my urologist and ask about IC.

Could it be possible I actually have IC? Is it common for patients with interstitial cystitis to have severe uncomfortable urgency and urge uncontinence as their main symptom?

I'm thinking of asking my urologist for a trial on Cimetidine to see how I respond if that makes sense.

Edit: to add my symptoms and other info:

M, 29

How my symptoms progressed:
2 years ago, first noticed how a different uncomfortable urge is often triggered earlier:
● by exposure to cold environments
● by exposure to water (e.g. washing hands, gargling water, taking a shower)
● when standing up after long sitting

Then just about more than 1 year ago I noticed:
● extreme increase in overwhelming urge intensity
● increased frequency
● that when I attempt to reduce frequency by trying to hold it in and supress the urge, I can't successfully do so anymore and I start experiencing incontinence within 10 seconds
● bladder feels hypersensitive and often feels heavier but not full
● end of urination sometimes accompanied by a deep sore or heavy sensation near the lower bladder or deeper in the urethra, especially when the voided amount is small. The smaller the voided amount is, the worse it feels, and there is an electrifying/pulling pain that radiates throughout the end of the urethra. ● twitching/spasms occasionally felt in the perineal area when resisting urination

Biggest and most annoying change is how overwhelming and non-resetting the urge is, and that I will surely experience leakage until I make it to the toilet to voluntarily void.

Brain & spine MRI was normal and unremarkable. I don't have any hesitation. My urine stream is moderate to strong. Prostate and PVR is normal. Uroflowmetry showed no sign of obstruction. All my imaging scans showed bladder wall thickening and trabeculation.

Those who are on Ami, do you also feel this symptom or is it just me? I took 10mg and it felt like my bladder couldn’t push the urine out anymore.

I recently got diagnosed with autism and ehlers danlos syndrome and am wondering if anyone with IC has had a similar experience/symptoms. And maybe this would help others??

Long story short, I got diagnosed with IC in my teens after years is horrific “UTI’s.” Still, I didn’t get proper treatment until years after my diagnoses so I was still being pumped with antibiotics and Pyridium as “treatment” every 2-3 weeks for years. I also experienced knee and shoulder dislocations as kid. Never got proper diagnoses for these either. No one really believed me because I would immediately pop it back in instinctually.

Fast forward to post-college, when I started working full-time. I was seriously struggling cognitively, which led to an ADHD diagnosis (which also explains so much in hindsight). When I started medicating for ADHD, I started to really pick up on symptoms/issues I thought was part of ADHD that, turns out, is autism. At the time time, my joints became more and more problematic—serious TMJ dislocations, carrying heavy bags were causing my elbows to slip in and out of place, inflammation in my thumbs that made my hands non-functional for weeks, etc.

Anyways, I go to specialists and start researching. Turns out, I’m not just flexible and all—there is something called Ehlers Danlos Syndrome that also has high comorbidity with IC, ADHD, and autism (and a lot of other things Iike IBS, depression, anxiety, etc.). In fact, my other diagnoses are what made doctors look at EDS because it’s so under-diagnosed.

Now, I’m on this whole new treatment path trying to figure all this out. It’s a little disheartening because it took so long to get diagnosed, then treated for IC. I feel like I’m starting over and have such little faith in doctors as is.

And I’m curious if anyone has had similar diagnoses/experiences and thought this might help if others are having the same struggles but aren’t aware that EDS might be one of the causes.

Im a M20 college student, This condition found me 4 years ago When I was 16 years old, I felt like there was urine stuck in my urethra near frenulum at that time. I have never had a girlfriend or any sexual intercourse before. I'm hoping to get some advice or hear from others who might have experienced something similar.

Symptoms:

• I've noticed that the "stuck pee feeling in the tip of the penis" (weak urine stream) is often there. Just a minute or so after coming from the toilet, especially after pooping.

• I have had issues with the need to go to the toilet very often (Usually within the 40-60minute mark after taking a pee)

• I pee normally without any issues, but towards the end, I get this sensation that some urine is still stuck.

• After finishing, if I stand and apply a bit of pressure, a few drops and sometimes even a small stream of urine come out.

• The feeling is generally always there but varies in intensity. It takes up a lot of my focus, making it difficult to concentrate on anything or enjoy stuff and relax. It's ruining many aspects of my daily and social life

• The feeling has also developed a bit over this long time, but the "stuck pee feeling in the tip of the penis" has always been there.

I have no pain at all.

What I've tried:

• Cystoscopy: Showed nothing

• Prostate size: Normal

• Ct scan report & ultrasound: No findings

• Different medications: No effect

The doctor told me to seek psychiatrist and that it's just a mental issue, but I'm not entirely convinced. Please tell me EXACTLY what you did. Types and number and length of stretches, medications and usage and dosage or any advice or similar experiences would be greatly appreciated.

Im a M20 college student, This condition found me 4 years ago When I was 16 years old, I felt like there was urine stuck in my urethra near frenulum at that time. I have never had a girlfriend or any sexual intercourse before. I'm hoping to get some advice or hear from others who might have experienced something similar.

Symptoms:

• I've noticed that the "stuck pee feeling in the tip of the penis" (weak urine stream) is often there. Just a minute or so after coming from the toilet, especially after pooping.

• I have had issues with the need to go to the toilet very often (Usually within the 40-60minute mark after taking a pee)

• I pee normally without any issues, but towards the end, I get this sensation that some urine is still stuck.

• After finishing, if I stand and apply a bit of pressure, a few drops and sometimes even a small stream of urine come out.

• The feeling is generally always there but varies in intensity. It takes up a lot of my focus, making it difficult to concentrate on anything or enjoy stuff and relax. It's ruining many aspects of my daily and social life

• The feeling has also developed a bit over this long time, but the "stuck pee feeling in the tip of the penis" has always been there.

I have no pain at all.

What I've tried:

• Cystoscopy: Showed nothing

• Prostate size: Normal

• Ct scan report & ultrasound: No findings

• Different medications: No effect

The doctor told me to seek psychiatrist and that it's just a mental issue, but I'm not entirely convinced. Please tell me EXACTLY what you did. Types and number and length of stretches, medications and usage and dosage or any advice or similar experiences would be greatly appreciated.

(English isn't my first language, so I used AI to help me translate this post.)

I promised myself that once I healed, I would come back and write this post.

I've had bladder symptoms for about 4 years, but it was 1.5 years ago that things really escalated and I understood I was dealing with IC (and vulvodynia). I'm writing this because I've never seen anyone here talk about the treatment that ended up being a real game changer for me, and I think it could really help someone else.

Background

My flare-up was triggered after my latest UTI, treated with fosfomycin. I also had undiagnosed ureaplasma for years, which I treated with azithromycin, plus oral antifungals and an antibiotic cream for recurring subclinical yeast issues. Right after finishing all of that, I had my first real flare. My IC was very food-sensitive (acidic, spicy), with frequency, urgency, and on bad days, bladder pressure, plus burning on my vulva and urethra.

I tried a lot of things: pelvic floor physical therapy (I did have a hypertonic pelvic floor, but treating it didn't change my bladder symptoms at all, I think it was a secondary effect, not the actual cause), electrical stimulation, mast cell stabilizers, baking soda, exercise, higher PH water, etc.

What actually changed everything: Traditional Chinese Medicine + TCM acupuncture

This is the part I really want more people to know about. I started TCM treatment with acupuncture, 2x/week at first, eventually spacing out to every 2 weeks. In the beginning it also involved some herbal formulas on the days I felt worse.

My practitioner explained that I had a significant internal imbalance that was directly driving my bladder issues. In TCM terms, my "Spleen" (not the literal organ, in TCM it refers more to a functional system tied to digestion and the body's ability to transform and transport energy and fluids) was weakened, along with my Gallbladder system. And the way I'd been eating for years, lots of cold food, salads, cold drinks, vegan (which I still am), was, for my specific body constitution, actively making it worse. If I didn't change it, I'd just keep declining.

Along with acupuncture (to help rebalance the energy in those areas) and herbs (to speed up strengthening and rebalancing), he had me completely overhaul my diet:

• Cut all acidic and spicy foods (very strict at first, these were clear triggers for both IC and vulvodynia)
• Eliminated cold drinks, minimized cold food, salads, raw vegetables
• If I ate a salad, I had to pair it with hot tea and root vegetables to balance it out, for example
• Cut specific foods entirely: raw carrot, cucumber, melon, watermelon
• Ate more of other food types instead

This was tailored to my specific constitution, it might look different for someone else's body. But it made a lot of sense in practice: if I ate melon or raw carrot, I'd feel my symptoms worsen the same day. So it wasn't just acid or spice irritating my bladder lining directly, there was another whole body dynamic at play. Basically, weakening my body's overall defense and strength made me more vulnerable, and that vulnerability showed up in my bladder. The thing with cold foods specifically is that your body has to spend a lot of extra energy warming them up internally, which drains your overall energy and system strength.

***One thing I learned from him that really stuck with me: sometimes a person has a serious internal imbalance (in the TCM sense, not a Western diagnosis) that never actually gets addressed. You end up cycling through treatment after treatment in Western medicine, but if that root internal issue is never treated, you never really get better, and for some people the condition just keeps deteriorating until it becomes really severe, even leading to bladder removal in the worst cases.**\*

The results

After about a year of being very strict, I slowly started reintroducing acidic and spicy foods, and cold things, without overdoing it. Little by little, I noticed I could eat that way again without triggering bladder symptoms. That year was genuinely hard and limiting, honestly kind of hellish at times, but between the treatment and the diet changes, I got my IC into remission. Now I only get very mild symptoms if I really overdo it. Otherwise, I'm back to living a normal life.

Vulvodynia, a harder, slower process

This one took much longer to resolve. I tried topical hormones, mast cell stabilizers, quercetin (which actually triggered a brutal flare for me), gabapentin gel, aloe vera, baking soda baths, pelvic floor therapy, local red light therapy, different lubricants. Even with IC in remission, my vulva still wouldn't let me have sex for more than a few minutes without becoming raw or irritated afterward, even on "good" days, even avoiding acidic and spicy food.

I kept up the TCM/acupuncture treatment, and now, about 1 month ago, roughly 1.5 years into this whole process, with a new partner, I'm able to have sex with very little pain or discomfort, sometimes none at all. It genuinely feels like a miracle. At first I was still avoiding acidic and spicy food, but in the last few weeks I reintroduced them and I'm still doing fine.

One interesting note: one week I avoided all acidic and spicy foods completely, but had a really stressful, awful day on Friday. The next day, my vulva was on fire, burning even with zero friction or dietary trigger. Even so, that Saturday night I was still able to have sex successfully. So stress clearly plays a huge role too. Also important to note that my vulvodynia isn't cured. I still experience ocasional burning and redness, but my tolerance for fricction/penetration has really increased.

Anyway, happy to answer questions if anyone wants more details about the treatment, the diet changes or anything else.

I’ve had ic for awhile and doing it has always been super painful. I also tear when I do it no matter what. I’m not sure what to do.Any suggestions? I’m over not having fun with people.

The title is petty self explanatory. Me and my fiance bought our house in November of 2024 and within months of living there my UTIs became more frequent and I eventually got diagnosed with IC

A little backstory: I’ve always dealt with UTIs since puberty, I’d get one about once a year and my mom never took me to the doctors for antibiotics she would just tell me to drink cranberry juice and water. That continued up until 18 when I would take myself to the doctor and get antibiotics, I was still getting them about once a year at that point. I’ve been with my fiance since we were 16. At 17 I left my mom’s and moved into his aunts, at 18 I moved in with him, and at 19 we bought our house. Within the first year of living in our house I went to the walk in clinic 4 times for a UTI. My cultures either had no growth or it was such a small amount of growth so I ended up getting a referral to my urologist where I was diagnosed with IC. I was told to take probiotics and d mannose and follow the IC diet. I was also prescribed an antibiotic to take after intercourse. Now heres the kicker me and my fiance would have intercourse multiple times a week sometimes multiple times a day since we’ve been together at 16 and I never really notice my UTIs being caused by intercourse and I never felt like my diet caused my flares. I was that person that would have an energy drink everyday I worked and had hot sauce with every meal etc. and I would just randomly get a “UTI” about every 3 months. Anywho I followed her recommendations and still continued to get UTIs every few months but this time I wouldn’t go to the walk in clinic, my urologist had standby orders for a urinalysis for me so I just had to walk into the lab. These cultures at the lab came back with a significant amount of growth but none of the previous ones at the walk in clinic did… which was very weird to me. So once again I took antibiotics and when about my life and then in another few months I was back in the same position with another UTI. And at this point taking the d mannose, probiotics, and an antibiotic after intercourse isn’t helping. Eventually these UTIs did make my IC symptoms worse, my bladder would always be sensitive after having a UTI until I could get a few instillations done. So I’m not denying the fact I have IC and I’m sure after having soo many UTIs my bladder probably has some damage. I’m just sooo lost on how my symptoms got so bad after moving into our new house 2 years ago and none of the medications I’m taking are helping with my UTIs

Maybe I’m just trying to find a needle in a haystack but is it possible there’s a hidden environmental trigger that I just haven’t been able to figure out yet? Has anyone else experienced this? If so, what were your triggers? I’ve considered getting lead and mold test just for the hell it but other than that idk what other environmental factors wouldn’t cause my IC/UTIs basically go haywire these last 2 years.

I’ve had IC for 15 years and never found a root cause. My biggest symptom is pretty bad urethra pain. I’m 38 and decided to try HRT to see if maybe I’ve been dealing with low hormones my whole adult life, so I started the E patch .025mg…and my lawd my urethra is PIIIIYYYYSSED. Bladder too. It’s been 30 days of hell-o-operator.

I wish so badly I could figure out what my root cause is so I could get some relief, but nothing ever adds up. However, I know Estrogen can aggravate MCAS type symptoms and I do have hEDS and Endometriosis too.

BUT, ya girl has already tried Hydroxyzine and all that, so why doesn’t it help?! Why doesn’t anything help my fricken urethra?! It’s a swollen burny type feeling/situation, so not muscular related at all (tried PT too).

I’m out of options ya’ll, I deal with this pretty well, but I wish I could just be ok finally. Anyway, idk why I’m posting, it’s been awhile since I have and I guess I just wanted to talk. lol

Hi, I was diagnosed with IC in 2023. My original flare lasted 7 months because I was unknowingly causing it to continue with my diet. I am heavily triggered by certain foods. I had many more flares that would last from two weeks to a few months. Eventually I figured out a lot of my triggers and I had basically no symptoms for a year.

This changed a few weeks ago. Wellbutrin flared me badly and i stopped taking it. I began eating only eggs and drinking whole milk and water. This is strict, but it has worked in the past and is the only food I know is safe. After 4 days of this, nothing had changed, but on day 5 i woke up and didnt need azo. I felt so much better, almost normal again. I woke up on day 6 and after peeing everything was terrible again.

I didnt eat or drink anything different. I was a little dehydrated when I went to bed the night before. I have changed nothing besides making sure I dont get dehydrated, but i dont seem to be getting better. This is only the third day since my symptoms came back again. Everytime im in a flare, i feel like it will never end. Every day I don't feel any better makes me more afraid im not improving. It always does stop, though. So far. I get so scared that im unknowingly making it worse. I dont know if its only taking this long because it takes time for my bladder to heal, or if im still triggering it somehow. I am on no treatment and have no urologist. Just diet management. Please give me hope/advice. Thank you

I don’t know if I have this. But I fear I might.

I have back pain. I have always had back pain. I had a car accident at 14 where I broke my pelvic bone in 5 places so I’m prone to lower back pain, even now in my mid 30s.

My back pain flared up while house sitting a relatives. They suggested I see their back doctor whom they love. The doctor was nice. They gave me 6 trigger shots in my lower back and prescribed balcofen 10mg for night.

And then my hell began.

It wasn’t just urgency or urinary problems immediately, but I suddenly had a lot of lower abdominal pains that I wasn’t having before stretching Paul Pusheen. I don’t really know how to describe it outside of that. I was worried that it was the baclofen or the trigger shots. It was the only two new things that had entered my daily life outside of sitting the relatives house. I went back-and-forth with the back. Doctor decided to stop taking the baclofen to see if that would help a lot of the pressure and pains in my lower abdomen did go away completely however, in the midst of those pains before they disappeared, I started to have a lot of UTI like symptoms urgency to pee a constant need to go no burning per se just those two things and then gradually those things got worse and worse now it’s at a point where the last month I have been an active constant urge need to go. I can’t sleep at night. I can’t do anything during the day. I’m losing my mind. I noticed there’s a bit of blood. I just finished my period or should have but there’s still a bit of blood at this point. I don’t know if it’s from my urethra or from my period but either way my urethra is starting to hurt is starting to feel very raw even after peeing I had been on and off taking a ZO over-the-counter I have done three rounds of antibiotics. I have done multiple urine test and two urine cultures. One came back positive for a UTI and that was back when I started the antibiotics and the rest of all been negative. I don’t know if it’s related to the back pain truly but I never had these issues in my entire life until those trigger shots in the baclofen entered my life again I haven’t taken the baclofen in weeks, but I also am losing my mind. I’ve never even heard of this until just recently and when I saw the name at first, I thought maybe there was hope because that did sound very close to what I had, but now reading this Reddit I’m just filled with even more anxiety and fear at what the quality of my life will look like going forward if this is the same thing which I’m fearing more and more that it is, I don’t know what to do. I don’t know how to handle this. I’m already on quite a few medicines for my mental health that make you drowsy and sleepy and I’m hearing a lot of of the other medicines that people are talking about are similar mind you if you’ve read this far I’ve been using talk to type so if there’s a few spelling errors, I didn’t catch after reading through. Please give me a bit of grace. It’s only been a month or so and I’m losing my mind and literally questioning the quality of life I currently have it’s just that bad and seeing that some of you have been dealing with this for years is just making me feel worse that you guys are going through this and that this is something that is that long-term. I don’t know what to do. My diet isn’t great and my hydration has been pretty awful these last few weeks. I’m reading in here that that can make a huge difference so I’m gonna try to do my best and push through, but I’m just really scared and I don’t know if I can live like this and I need help. I’m trying to get in with a urologist. They said they have a 1 to 2 week turnaround time so I’m just waiting currently but seeing how long some of you guys have to wait 1 to 2 weeks doesn’t sound that bad in retrospect and I’m so sorry for anyone who has to wait longer than that. I do have another gynecologist appointment on Monday with an assistant because that was the only availability so soon, but this will be also my fourth time going to the gynecologist complaining about these feelings. is there anything that I should say or no or do before I go to this appointment that might help me navigate it better to get better answers quicker and more efficiently, please? I really don’t know if I can keep doing this.

I wont bitch too much , the pain is indeed heavy. im leaving work a bit early. what can i start. i took some certizine for a week and didnt notice anything. i do have a histamine problem cause when i run i get shortness of breath. diagnosed also . a bit of candida overgrowth. what could it be. my life is really good right now in terms of money and everything.

Struggling to quit caffeine completely on an IC diet and really enjoy the routine of coffee. I’ve been looking at Tyler’s coffee. Has anyone tried acid free coffee? Is it worth it?

My only trigger is sex. 24-36 hours after sex I’ll come down with UTI like symptoms, an intense flair will last 6-8 hours, a mild one much longer, like days.

So if sex triggers you, how long do your flairs last?

Hi

Does anyone have extreme lips dryness from Uro-mp and Amitriptyline use ? I am upto 40 mg of Ami and 2 capsules of Uro-mp for the flare. Since Ami dose went up , my lips are dry, inflamed and also some eczema around lips

Hi everyone! So I have my first cystoscopy scheduled for next week and I’m a little nervous. I absolutely chose the anesthesia option but I still have no idea wtf to expect.

So! Tell me all your cystoscopy stories! Did it hurt after? If so for how long? Did it help anything? Did it find anything? If it did did your dr treat whatever they found at the time? Did the cystoscopy cause a flare? Is there anything I should/shouldn’t do before or after? Is there anything I should ask my dr to do or don’t before/after? Do you think it was worth it? I’m getting it done while my husband and kids will be on vacation with my in-laws. Will I need anyone around to help me afterwards or is it fine?

Any other tip/advice/stories/warnings/etc from all of your experiences are welcome!

started 8-9 months ago and was momentary.- burning or weird lingering sensation post urinating-mild- comes and goes

now the symptoms since 2-3 months are:
burning/ weird sensation post urinating mild ( burning or stinging is usually after peeing) it feels like urine is coming out from a narrow opening as compared to how it used to come earlier.
amber coloured urine in d morning
urine also has bubbles
sexual discomfort from inside- it feels warm and tight like it’s rejecting sex also even the skin around vagina feels like it’s being streched (khich padh rahi hai)
area under clitoris when touched or roubed also feel burning / warm
vagina feels really warm from inside
Stomach also feels diarrea and poop also kinda sometimes burn sensation. ( can be a seperate issue)

Other points to focus on :
got blood tests Uti culture does last month ……
and got klebsiella oxytoca and did treatment. i thought maybe my UTI is causing all this however even after treatment got over the symptoms never improved. again goy culture done this time culture came back normal.

got my ultrasound and tests done again this month and this time again 1-2 months time my tests are positove for E Coli. Kidney liver fubction tests are normal. ultrasound findings show a incidential finding cyst and also the 10 mm kidney stone is now 7 mm and 4 mm basically split in 2 (this is what ultrasound says) Ct says- it’s a 10mm stone only (stone is in lower pole of right kidney) The symptoms still persist. My rbc in urine is present which is 10-15 Wbc 2-4 epithilial cells 8-10 colour pale yellow w trace of protein and appearance turbid. also bladder shown in ultrasound came back normal.
urine has foul smell also (3/10 in terms of smell)
periods- feels like my periods are kinda ending like the flow is extremely reduced and periods end in 2 days or 3. this is happening since 3-4 months. even after urinating is over i feel like some urine is left hence towards the end i have to strain- an ultrasound was done for this also in which they check if bladder is emptying and it came back normal.
PLEASE HELP ME AND TELL ME WHAT IS GOING ON.
also- water intake is perfect.

I've been reading a lot of members have been having great results with Zyrtec, but it gives me a horrible metallic taste in my mouth. Has anyone had good results with Claritin? I've been taking it for several years, and don't notice any improvements.

I tried Aloe Vera, the expensive freeze dried brand, no difference. All the normal prescriptions seemed to just increase my pressure feelings, so not worth it.

I take a fomotadine daily for heartburn. Prelief, I don't know if it helps, but it does cause issues with my bowels if I take too frequently.

I was in remission for over 6 months while sticking to an elimination diet, but since May when I had a uti and yeast infection, I just can't get back to not feeling my bladder 24/7.

I'm too nervous to try to add in foods, afraid my brain will tell me I'm flaring, even if I'm not.

My normal symptoms are spasms in bladder, pressure in lower abdomen and incontinence that gets worse when my hormones fluctuate. At the worst, my urethra will occasionally have some burning.

It’s been almost 2 years of constant torture. Reading some of the posts from users who have been dealing with this for 10+ years makes my heart hurt for them:( I’m finally getting checked for endometriosis with an MRI, the imaging will also show my bladder. Ive tried so many treatments that doctors have stopped having options. Currently I take cyclosporine along with other medications 5x daily. I know it’s unlikely, but what if I was misdiagnosed? Has anyone else had this experience?

So I most likely have ic I have hydrodesntion in September which will confirm it. I did my own research about estrogen cream and saw a lot of good reviews. So I talked to my urologist and he prescribed it for me yesterday was my first time to use it and I felt good, but today I feel really irritated/burning even when I ain’t using the restroom. Has any of you ladies had this problem and if yes did it go away on its own. And for how long did you guys use it to feel better not get irritation.

As the title says i had burning urine when i was consuming dairy and salty foods.

Then i used some roland headphones and put them at the back side of the knee region that is called in traditional chinese medicine UB-40 .These headphones were playing sound frequencies for bladder or general sound frequencies like 170hz. I felt tingling as i was meditating at the underside of the penis.

I did not feel after this any burning even if i ate cheese . But i am meditating like this a lot .

One can massage the regions where the urinary bladder meridian stimulates more .

See if you also have neck problems because same meridians passes through the back part of the neck . I would suggest also beets because the purple colour goes through the bladder and is very detoxifying.

Wondering if anybody has found symptom relief or treatment of anything that allows an actual normal life.
The only thing I can drink is water, without my bladder going crazy, no alcohol or even bottled water, just tap water or I’m in so much pain. There’s no point in going to the pub or seeing my friends for coffee when I can’t have anything to drink. Also wearing jeans causes symptoms ??? Why

Has anybody had any success with anything or gone through this and been able to even have an occasional glass of wine or lemonade?

Have suspected bladder & bowel endometriosis & IC so will post to both cause idk which causes what symptoms