I'm currently on 300mg twice daily and feeling no impact. High high dosage should I go until concluding that it won't help?

Any suggestions for how to get a boost of energy if not from caffeine? I have Chronic Fatigue/Interstitial Cystitis/MCAS/POTS/Hypermobility/Pelvic Floor Dysfunction/Inflammatory Arthritis so whatever I consume needs to be:

- Low-histamine
- Low-acid
-Anti-inflammatory

I love coffee so much but it causes very bad, deep, sharp, bladder pain and bloating😔(even seems to make my left-legged neuropathy worse). But I have a one year old daughter so life without caffeine seems impossible.

Is it possible to have intense and chronic flank pain from IC with no kidney infection?

My kidneys and flanks hurt so badly it feels like someone is stabbing me in the sides every night with shards of glass. Its impossible to sleep.

Multiple negative CT scans for any abnormalities.

Yes ive been evaluated extensively medically and anything serious or life threatening has been ruled out unless its an embedded kidney infection from past UTIs. I thought IC only affected the bladder but it's definitely hurting my flanks now for years. Does anyone else have the same ?

I began adhd treatment by taking vyvanse 2 days ago and i randomly started flaring both days, which i find so weird bc really the sole cause of my flares is ALWAYS a trigger food, which I haven’t touched any of. Has anyone experienced this or am I just missing smth different I mustve done recently unrelated to the adhd meds??

Hey folks!

I recently discovered that I have IC, but unfortunately I cannot get dedicated support until after I move in January.

My current symptoms are wanting to pee all the time, sometimes pain and cramps, and pain during and after sex.

Any suggestions with what I can do, that is also affordable, to help myself until I can get it taken care of?

Hi I hope you guys can help!

Starting at the beginning of this month I had frequent urination and stomach pain the doctors suspect it is a UTI. I had to go to the ER to find out after blood clots have started. So it was basically a very hidden complex UTI strain. I am on an antibiotic 5 days in and I can feel the pain creep in.

I have been to multiple doctors and I feel like NONE are taking me seriously because I am young. I have been to the doctors 7 times this month, peed in a damn cup 8 times, pelvic exams, blood work, cultures, urinalysis, I am not sexually active either.

Please help ladies I don't want to be exhausted or in pain anymore its worrying me :[

Just found this sub.
82yr old female in N California with Kaiser Sr Advantage Medicare plan.

Am realizing I have interstitial cystitis, while having a current flare. PCP and GYN have always treated this as though it's a UTI and prescribed cephalexin antibiotic, even if urine culture shows no bacteria. At my age they automatically assume UTI. 🙄

After an ER visit because I could not urinate at all, I was referred to a urologist who talked about doing a cystoscopy if UTIs and full retention kept happening and he had a urogyn nurse set me up with self-catheterization to avoid going to ER next time. So far total retention hasn't happened again thankfully. And now I'm realizing this is not UTIs but cystitis.

This time I am taking AZO and did take cephalexin for three days (6 caps I happened to have) and still have discomfort so that seems to confirm that this is not a bacterial infection .

Do you just self-treat? If so, what with?
Should I see a Dr? Can they do anything? PCP is useless, GYN too. Urogyn could be helpful but Kaiser won't refer me to one. Urologist will likely want to do a cystoscopy but appt is not for two weeks since he is on vacation. But right now I am very uncomfortable.

Anyone find Cystex helpful? Just found that mentioned online so have ordered from Amazon.

Sorry for the long newby post!
Thanks for any suggestions.

i’ve had ic for about 4 years now and about a month ago i asked my doctor if there was anything i could be prescribed to manage pain or just ANYTHING at all that could help me and she went “you have ic?” as if she’s not the one that diagnosed me with it. so now i have to do all of this all over again and still i have not gotten any help whatsoever with this and it’s getting to a point where i’m ready to find the nearest doctor and threaten to blow myself up if they don’t help me. anyway. i’m still waiting on my urology appointment and i can’t fucking
take it anymore. this is literally killing me i can’t work like this i can’t go anywhere or eat anything or enjoy anything anymore. if i go to an urgent care or the er are they going to be able to do anything at all for me???? or do i just accept my fate

I went on a low-calorie diet for about three months and my symptoms got a lot better, almost disappearing. Why is that? I'm wondering if my IC might be more closely related to inflammation and gut issues then I realized. I was eating a lot of plain bland food, much of it processed... a lot of of those frozen steamer meals where you put the food in the microwave and then stir it into the sauce, protein bars , plain crackers with cheese on . So I'm wondering if I need to find what my maintenance calories is and eat that?

I’m honestly shocked by what happened recently and wondering if anyone here has had a similar experience.

I’ve had more than 10 episodes that I thought were UTIs, but only two urine cultures have come back positive. Sometimes my urine tests show mildly elevated white blood cells, but the cultures still come back negative. Knowing cultures aren’t perfect, I’d been approaching this as a chronic or “embedded” infection.

I’ve also had two cystoscopies, and both doctors commented on how completely clear my bladder looked. No ulcers or Hunner’s lesions. My pelvic floor is tight, though. The terminology has been confusing: I was told I have “bladder pain syndrome, not interstitial cystitis.”

Then I caught a cold and started taking an antihistamine along with an H2 blocker. Suddenly, my bladder discomfort pretty much disappeared….My vulvar/vestibular burning also cleared up 🫪

And it wasn’t just my bladder. I’ve had ongoing diarrhea since having my gallbladder removed a year ago, and that suddenly stopped too—for the first time in a year. After feeling unwell for so long, having several symptoms improve at once was honestly unbelievable.

This made me wonder whether histamine could be playing a role.

Looking back, I tend to avoid a lot of foods considered high in histamine because they don’t seem to agree with me. My reactions also seem inconsistent—one day I’ll react to a banana, another day to mango. There hasn’t been one obvious food that causes the same reaction every time.

I’ve also had very high IgG results on testing, although I don’t know whether that’s relevant. I’m not saying any of this confirms MCAS; I’m just trying to understand what happened.

Where I live, the clinicians I’ve spoken to don’t seem familiar with MCAS, so finding someone to help me look into this has been difficult (I live in South Korea).

Has anyone here had bladder symptoms, improve with antihistamines or H2 blockers?

Which ones have you tried, and has the improvement lasted? I’d really appreciate hearing your experiences.

I (18 F) have been dealing with cystitis for about a year now, in the last 3-6 months ive started taking medication because of the pain. I was given 10 mg of amitriptyline, which helped for a bit... Until it didnt. I was moved up to 20, same thing. Now I'm up to 30mg (supposed to go up to 40 tomorrow) BUT all of the sudden after my last hospitalization about 3 weeks ago, the pain stopped. Fully stopped completely. I frequently forgot to take my amitriptyline if I didnt feel pain that day, and I always paid for it the next day. I couldnt even have sex normally, it hurt soooo bad after so I would just not which obviously took a toll on my boyfriend and I's relationship. But I started to notice I was forgetting so much because there was zero pain, at all. I saw somebody post that this happened to them as well but only for a week. Its been 3 weeks now and I'm genuinely questioning if I was misdiagnosed? Can that even happen? But why was I in so much pain before? Im just so confused right now on whats happening with my body. I also was diagnosed with fibro last week, which I have decided to ignore because I dont believe I have it. I'm still taking my amitriptyline but I dont want to be, I dont need it if I'm in no pain! Has anybody been in remission for weeks at a time, did it come back? Somebody please help me, this feels like an impending doom.

Hi Friends! I intend this to be a long post but looking for support, suggestions and ultimately a group of people to connect with. Going to share my story in the hopes of someone going through the same because I am really just losing my mind.

I am 29F, and got my very first UTI last year on Christmas day. It was a horrible day, I was in misery. My dad ended up going to the only store that was open and got me some AZO and cranberry juice. It sufficed, and I went to the doctor the following day and was put on antibiotics.

I took the antibiotics for the allotted time, enjoyed new years but felt off again and then the UTI came back. It seems as though the antibiotics did not fully kill off the infection. I ended up at urgent care, got new meds, and it went away.

From then on, I have had extreme anxiety I would get another UTI. I would go to the bathroom whenever I had to pee, pee immediately after sex, shower immediately after sex, and wipe numerous times after using the restroom. I even bought at home tests to take and keep a stock of them. (I still do all this)

End of January I began taking spin classes, if I felt like I had to pee I would always dismount. End of February I lost my job and ended up getting one and started it in May. The day before my new job I began doing strength training with a trainer. A few weeks later, I thought I had another UTI; so I ran to urgent care and the test came back negative. Over the course of June to August, I had gone to urgent care 4x because I thought I had a UTI, all tests came back negative. My symptoms were urinary urgency and frequency, and pressure. I never had burning (at least I think). These symptoms would come out of nowhere, and always happen immediately after sex.

After my gym sessions, I would constantly have to pee, on the way to work sometimes I need to pull over and use the restroom.

I then made an appt with my Gyno, she thought it may be Vulva irritation after doing a q-tip test. I was also tested for BV and Canadia, both of which were negative. I was prescribed a topical steroid and used it for about 2 weeks but felt it was getting worse so I stopped. The symptoms I had before did not stop.

I decided to go to my primary, who insisted the next step was a urologist. My PC said it could be IC but was not sure. I had to wait about 2 months for my urologist appt. At the appt I provided a sample and he went over stuff with me and he shared that he saw bacteria in my urine under a microscope but would send it off. I cried tears of joy, I thought he figured it out, but everything came out negative.

He tested me for all STDs/STIs (which I knew would be negative as I have only had 1 partner and we are engaged) and Ureaplasma & Mycoplasma. He told me if the tests came back negative, I was to start the IC diet as that could be it.

I was not happy with the answer, so I decided to go to another Gyno at a private practice who would spend more time with me and listen. At that appt, she suspected IC as well and told me to continue the diet. After an exam, she determined my original gyno was incorrect and I had ZERO vulva irritation.

The anxiety and stress over this has been overwhelming. After researching and my fiancé looking into stuff, we think it could be pelvic floor dysfunction due to my symptoms and constipation issues I have. I got in contact with a PF therapist who told me to stop weight-training for the time being. She listened to my story and she thinks it could also be PF dysfunction. I am praying this is the cause, I am tired of having normal days and then getting a flare in which I end up spiraling and thinking I have a UTI. I want to be able to live my life. I am scared to go on my honeymoon incase I get a UTI or a flare.

I have been taking supplements in the hopes they help. But I hope I get answers from the therapist and I am happy to share updates here. If you have similar symptoms, stories... please share. I would love to hear and talk. There are some details I left out but happy to share more.

Thank you 💖

Leukocyte esterase seems to show up in all my urinalysis results

Is that a strong indicator of IC?

d mannose is there a brand you swear by that helps? This is my second uti I’ve two months along with bladder pain off and on since last January.

From recent events I've concluded that food isn't my main trigger atleast which is somewhat hopeful but then again it throws my condition into the bin of "you just feel horrible for big part of being awake and there is no sure way known to get it under control"

I’m trying to help a friend figure out whether her symptoms could be connected or if they’re separate issues. Has anyone experienced something similar?

Her symptoms/history:

Interstitial cystitis (IC): Symptoms started around age 5–6, diagnosed at 12–13. Bladder symptoms don’t change during her period but worsen with caffeine and fast food. Deals with this everyday.

Periods:
- First period June 2025, before freshman year of high school.
- No periods in July/August 2025; September lasted 8 days;
- December 2025 she had two periods about 2 weeks apart, each lasting 8 days; another period in January 2026 about 2 weeks apart from the last dec period.
- Now October 2026 and her periods can last up to 11 days with bad cramps throughout and heavy flow throughout the length of her period. Lower-abdominal tenderness can be worse when pressed during her period. She also says that the spot where she gets cramps can hurt when she presses it. Tampon insertion doesn’t hurt. Her doctor prescribed birth control as of this month, and waiting to see what happens.

Back: Fell during cheerleading about a year ago and still has pain in one spot on the left side that sometimes travels upward toward her spine. MRI reportedly showed early arthritis which is weird to me to be in one little spot at her early age.

Skin/circulation: Legs look mottled or netlike, almost like scales/blood pooling. My guess is Livedo reticularis or cutis marmorata: a netlike, mottled skin pattern that can become more noticeable with cold or changes in circulation. Blood pressure was on low side last time she went to doctor.

Iron: Doctor said her iron was borderline low and checked for anemia. She doesn’t have anemia symptoms.

Appendix: Had a CT scan involving her appendix; her appendix was removed due to appendicitis. That happened in November 2025 - then the periods happened 3 times in 2 week periods back to back for 8-9 days each time the next month December 2025.

Ultrasound: She may have had a pelvic ultrasound during her IC evaluation, but we don’t know exactly what it examined or showed.

This sounds like endometriosis, to me I think I see a connection between the bladder symptoms, appendix and period/menstrual problems. I don’t think her back problem is related but could.

My questions: Could she have endometriosis alongside IC, even though her bladder symptoms started years before her first period and don’t worsen during menstruation? Could endometriosis explain the painful/prolonged periods and some abdominal or ? Could the mottled legs and low iron be unrelated, or should she investigate other conditions?
Has anyone had similar symptoms, bladder or appendix endometriosis, or normal scans before eventually getting diagnosed? What specialists or tests helped?

( This is all the information I have I will try to keep this post updated with anything I find. This girl has been struggling with this for a long time and it’s only getting worse, pls help!!!)

Let me start by saying this is far from the first option. This is our final treatment before either Neo-bladder reconstruction or full removal. My doctor says my IC is one of the worst she’s ever seen. I have had countless Hunner’s lesions that have damaged the lining of my bladder. I’ve had multiple rounds of instillations, Botox, fulgurations with hydrodistension, and already did the max period of Elmiron. When I say I go pee often, I don’t mean 20 times a day. My bladder capacity is 150mL and I have to go between 30-70 times a day depending on my pain and water intake. I have read both good and bad things on this option, but I don’t feel I have any other choice. I can’t live my life. Just wondering for those who have gotten it, were your symptoms as severe as mine?

Hello,

I’m having an “endometriosis excision, with all procedures deemed medically necessary”, for my already diagnosed stage 3 endo. This is my second surgery for endo, my body reacted poorly to the first and I was unable to get up by myself for four days. This was before I was diagnosed with IC, three years ago my bladder was great! Oh, how I miss those days. I have a wonderful UroGyn who does my weekly bladder instillations and am on medication to help reduce frequency however, I’m still peeing or have to pee every 2-3 hours max. No matter how much sleepy juice they prescribe me, I’m either rolling around in pain from my endo or bladder or have to pee all night. It’s been over a year and a half since I’ve gotten 8 hours of sleep. We are going to try bladder Botox after my excision, also looking into long term catheter options if that fails. This is all just context to my surgical concern.

I asked my UroGyn about having a foley cath kept in for several days after my surgery. I’ve had one before and loved it. He made it seem like it was a simple request. However, during my pre-op with the endo specialist he insists it’s too much of an infection risk. I don’t know what they expect me to do? They expect most people to be up and moving, but my body just says “no” and I’m unable to use my core due to the immense amount of pain. It’s not expected to be a minor surgery, I can’t return to work for 6 weeks and imaging shows it’s worse than ever before. My body is being eaten away by a trifecta of chronic conditions. Even nerve blocks make my entire body angry.

So how to I advocate that I need a catheter? Or do I just accept that I’ll have to wear Depends? I understand they want you up and walking for gas pains, but that only works if you can stand. Would it be wrong to go to my UroGyn or ED after discharge to have one installed?

My IC has been under control enough for the past year and then since the beginning of October began ramping up until last Friday when I was in such excruciating pain I didn’t sleep. Saturday to urgent care where they said it was a UTI, gave me cephalexin and for a day or two I felt a little better. Started feeling crappy again yesterday and the culture results came in which showed 100,000 CFU/mL Streptococcus anginosus. Apparently for UTIs this responds best to penicillin or amoxicillin. Been on the phone all morning trying to get a change in antibiotics since I’m in absolute agony again. My stomach is also in shambles I’m guessing from the cephalexin. I don’t even know what to do anymore. It’s impossible to make doctor appointments and I literally feel like I can’t live another week like this. I’m not even convinced an antibiotic will help. I really need some support and words of encouragement bc I have two children and I don’t even know how I’m going to survive the next 48 hours in this kind of pain. AZO and baking soda barely touch it. It literally feels like there is a blow torch inside my bladder and urethra and any drop of urine that amasses in there feels like acid. Please help, if only to let me know that I’ll somehow get through this.

I initially believed I may have interstitial cystitis due to the symptoms I was experiencing (barbed wire on fire in my urethra, urgency, pain, etc.) but my specialists said I don’t and they had no idea what was happening. They proceeded to prescribe me Mirabegron and send me to a physical therapist. Eventually my symptoms went away (for the most part, besides a mild flare up around the time of my cycle each month).. Well, they’ve popped back up (with some added ones?) and I found a different doctor who believes, given other things happening in my body, that it may not be a bladder thing at all and instead suggested it may be Mast Cell Activation Syndrome. Has anyone heard of this/able to shine some light on the subject?

it's like fuckin SOUP it's crazy

I have always had frequent UTIs, so when I started feeling these symptoms I just figured here we go again. I did teledoc and was sent Macrobid. For the first time it was not relieving my symptoms, which it usually does right away. Fast forward to 3 boxes of AZO later, gyno visits, urine cultures, all STDs are negative. All STIs are negative. Mycoplasma and ureaplasma are negative. I know there’s something wrong. My urethra is so uncomfortable and has that frequency feeling and almost like it’s going to drip out. I went to the hospital yesterday hoping for some answers and they tested my urine and said bacteria showed up but I have to wait to get the culture results and that pretty much I have to wait until my urologist appointment on Monday. Tomorrow will be day 3 of taking Bactrim with NO relief. I’m not trying to be dramatic, but I’m really, really struggling over here.
I am miserable, uncomfortable, exhausted because I cannot sleep at night from the feeling. I feel so hopeless because what if this never goes away. My urethra just feels so wrong I can’t even describe it. And sometimes there’s throbbing down there too. Bladder feels so full as it would during a typical UTI. I’m really just lost and dying for an answer and if anyone knows of a way to get any relief PLEASE share because I have not been able to sleep AT ALL and it’s truly miserable.

September was hell. My biggest trigger is caffeine so from my last flair in March to September I was slowly reintroducing decaf coffee (decaf contains caffeine. I know, rude.). Anyway the cafe at work gave me a full caf at the start of September and well, I was out of action for nearly a month. £1500+ emergency urology fees and a combo of an extreme elimination diet (not even potatoes 😢), dialation during a cystoscopy, antibiotics and various painkillers, and the flair seems to have subsided and I'm a month free!

I'm back on absolutely zero caffeine though. I think the decaf was also slowly building up the inflammation so not even having chocolate (it contains caffeine, which I've discovered no one knows!).

Anyway, thank you for being a source of tips and solace. This illness truly sucks. I just want a chocolate biscuit!

Hi all,

A lot of my urgency comes from pelvic floor issues. Sitting during the day, especially in pants with thick seams, can cause me a lot of irritation and urinary urgency.

Any recommendations on comfy, stretchy pants without thick seams that are work appropriate (ie not just leggings?)