Hi,

F (26) healthy, no medications, no health problems, eat organic food only and is active, no alcohol or drugs.

Since I began being sexually active 4 years ago, I had 3 utis that were successfully treated with fosfomycin and one with cipro. This September 2024, I had one of the worst uti after protected sex and after fosfomycin and amoxicillin 850mg / 7 days, there is still bacteria. The first urinary test mentioned low level of kebsiella and enterococcus. After amoxicillin, only strep B. And after another test 2 weeks later, I have moderate level staphylococcus and low level enterococcus.

Initially my symptoms were pain, burning, frequency and urgency, weak stream. After the amoxicillin, all is gone but the frequency that happens here and there and sometimes having a low stream. I’m nowhere near the pain I was but something is off and now they want to prescribe Macrobid to “finish it off”.

Before I take another antibiotics (knowing also that amoxi gave me candida) is there a reason why I’m having different bacteria’s coming in tests in a 6 weeks period? Why am half symptomatic half asymptomatic?

To add to my misery I have “bladder” spasms now. Not painful, but it twitches here and there.

Been tested for chlamydia, ghonorrea, ureaplasma and mycoplasma and all is negative.

I’m also taking d mannose, cranberry and oregano oil to “try” clearing it on my own.

Any advice on my case? No doctor seems to help..

I’ve just recently been diagnosed with interstitial cystitis but I’ve been dealing with it for years now (as well as just general pelvic floor pain). Since 2019 I’ve been to three different pelvic floor therapists and right now I deal with bladder pain and urinary frequency every day. I tried the daily prelied pills and those do nothing for me. I put prelief powder into things that I know irritate my bladder like coffee. I think marshmallow root may help a little so I just increased it to twice a day. In general though, I experience bladder discomfort/pain/urgency every single day. At one point I was taking so much ibuprofen that I finished one huge bottle and I eventually just stopped because it doesn’t work. I realized those Icy Hot pads provide relief so I use them when it’s bad at night - I might start using them more regularly. At one point I used them every day. So sorry for the long post but this is my situation and I’m trying to figure out what my other options are. Keep in mind if a prescription has really helped you, I’m currently taking lamictal, latuda, and buspar so I can’t take anything that interacts with those. Also I have an IUD because I used to have sharp pains in my lower abdomen and that helped me. Please help with any recommendations!!

I believe the reason I have iC is due to recurrent UTIs. I had one every 1-2 months for the past two years. I finally kicked the cycle in April and haven’t had a uti since, but today I woke up with a uti. Dipstick was positive and I have antibiotics.

I’m just really heartbroken and confused. I’m so worried about what this will do to my symptoms. Usually I’m a baseline 2/3 out of 10, but now it’s like a 6/7. I can’t get out of the tub and had to call my husband home for our son. What does a uti do for your symptoms

After several weeks of calm, I'm having constant flares again. I thought maybe it's because of stress( I'm in a very stressful situation right now), but I was wondering can the reason be cold water? I've been drinking cold water(with ice) a lot lately( it helps me emotionally--don't laugh). Has anyone been triggered by dronking really cold water?

Also: does anyone notice that when you ice(cold therapy) your urethra, it can make the pee feel hotter?

Another medication question from me lol. I was doing some external lidocaine and previously it came in a medicine bottle and I just wiped it on with toilet paper.

I go to pick up a new prescription and this is what they give me.... is this a catheter????? What in the fresh hell??? I am not shoving that thing up my urethra. Do you think I can just open the tube and get the lidocaine out???

Hello all I recently posted about having a flareup and it seem to be solved by drinking lots and lots of water every day. I was having issues where I had cloudy urine and this has been going on for almost a month now. Recently starting on Monday morning, I have had awful back pain Right next to my spine around where my kidneys are and I now suspect that maybe I have kidney stones and that could be causing these issues. I will be going to a doctor tomorrow morning but just wanted to see if anyone had had symptoms and then turned out it was a kidney stone. The irritation, I feel externally around my vagina has sort of flared up and came back, which does not make me feel any better.

I am a male 23 yo. One week ago I held my pee for too long and since then I keep on having pain, burning sensation in my pubic area/bladder everyday but not all day long. I don't feel the urge to pee. In January this year I was disgnosed with Mycoplasma genitalium and I took lots of antibiotics for it all year long until September and I was thinking that maybe the antibiotics messed up my bladder or that I still have the bacteria and it reached my baldder. The only symptom that I still have from this bacteria is discomfort when peeing when I don t drink enough water but I hope it s residual symptom. I also have varicocele on both testies but I don t know if what I am feeling can be a symptom of it. What do you guys think it could be?

Hi All, relatively new to IC had what I thought was a UTI 4 months ago, had numerous samples sent to lab and swabs, even an ultrasound and MRI everything has come back fine. Then had a blood test to check for Perimenopause (I’m coming up to 42) that came back saying I wasn’t, although not entirely convinced by that one due to other symptoms I’m having. However they are now referring me to the urogynaceology dept at the hospital to test for IC. From reading up online there doesn’t appear to be a test to diagnose for this apart from doing all the tests to rule out everything and that leaves the only diagnosis left? I guess I’m scared because I know they are going to say to have the Cystoscopy done and quite frankly from reading horror stories online I don’t really see what benefit this would give me as most cases there is nothing wrong with the bladder physically? My symptoms are constant burning uthera, mild bladder pain? I think it is as it’s a very dull ache occasional stab right down there along with periods of constantly having the urge to go to the toilet. However I do notice this is better when I’m on my period which leads me to believe this could be hormone driven. I would just like peoples views on the Cystoscopy and whether they believe it’s actually worth it and what things you’ve tried which have helped you deal with this?

Hi everyone I very new to this stuff. I’ve been taking prelief daily for 3 weeks and drinking 9.5 PH water. I take it with almost everything because I can’t stand to go back to the state I was in 6 weeks ago. Does anyone have advice I’m so confused. My digestive system seems to be related to my IC as well so I’m nervous to mess up my healing so far.

Is there a standard dosage for hydroxyzine? I thought it was 25 mg but my urogyno prescribed 10 mg at bedtime.

Has anyone needed to see a nephrologist? Back in 2022, I had endometriosis on my bladder and ureters which I’m pretty sure is what caused my IC. I don’t know if my bladder, kidneys, etc. are damaged by the endo but, pretty often I have what feels like a kidney infection but I have no bacteria in my urine, no UTI? I’m having to sleep on heating pads due to the flank pain.

Hello y'all. I have had symptoms since the end of June, currently visiting an urologist. My biggest problem is mild pain in both the urethra and bladder. I don't experience frequency / urgency at any stage of the day and night, I go to the toilet 4-5 times a day. I only experience frequency shortly after sex, after which I can go to the toilet three times in an hour (also, the pain is the greatest and lasts the longest). Do you have any tips on what to focus on with symptoms of pain and discomfort to help me find a possible remission?

A month ago I had oral sex. The next day I woke up with a burning sensation in the urethra, a burning sensation under the foreskin below the glans, diarrhea /stomach pain in the lower part, nausea little swollen. the stomach bubbles and is gassy.

This goes on for weeks and I get tested for chlamydia, gonorrhea, mycoplasma, yeast infection, hiv, syphilis and hepatitis, all came back negative. I am tested for urinary tract infection (UTI) also negative. The doctor thinks I have urethritis and prescribes a 3 month course of "nitrofurantoin" it makes no difference after 2 weeks, also treats with pevaryl and cortimyk without result.

I have no sores, it itches on the scrotum and groin, a dark feeling around the lower abdomen, pain in the urethra all the time, feels a little better after I pee. little itching under the foreskin. If it had been herpes it would have blistered and hurt, I don't have it, I have a friend who has it and this is not the same.

what could it be?

Anyone have a recommendation for a naturopath that specializes in IC? We are willing to travel anywhere in the US.

I experience bladder fullness 24/7 just started on 25mg before bed daily. Has this worked for anyone whose bladder has lots of pressure.

What else has worked for you? It’s becoming unbearable :(

She said it “wasn’t a thing”

I have a eurology appointment in two weeks first history. When I was 19 I had sepsis due to a uti I taught was just me frequently going to bathroom bc this was usual for me. Well turned out I had sepsis with bad kidney infection stayed in hospital for 3days. Recovery was good have gotten alot of scan of kidney and ev er thing comes back normal. Earlier this year I had a uti cause by ecoli like in 2019 treated with antibiotics went away, recently I have been going in and out of urgent care due to suspect of uti. Well thus was my recent result FEMALE 24, 166 WEIGHT It reads (insignificant growth according to clinical standards, mixed uregonital flora , colony 50,000) Uti sysmtops come and go, I was referred to eurology bc I keep having on and off symtops and always positive leukocytes, negative netrites at all times. What would eurology do in this case... I kinda suspect cystitis just as inflammation I developed sepsis once from an untreated uti ... pretty terrified rn they didn't give me antibiotics just told me to follow up with eurology at this point bc my culture is always mixed and I keep having on and off symtops. Test strips at home only come with leukocytes and often neither neitries or luekocytes come postive I'm so confused

EDIT: today I went to urgent care again bc I ran a psotive urine test at hone, when I went to urgent care uranalysis was clean just slight blood, they are running the second culture this month ! I'm lost

Long story short- I’m 49 female never had kids. So yes perimenopause and menopause is in my wheelhouse right now.

2 years ago my gyno put me on birth control (yaz generic) to help me with the hormonal balance due to menopause. After a year unknown to what it was but after many tests she said it was IC .

I trusted my gut and told her I wanted off,,, she switched me to a progesterone only pill. Last day of yaz I woke up with no bladder pain. And I did really well on the progesterone only until my pharmacy switched the brand generic on me because the IC came back.( I searched for the generic I did well on and nobody could get it) So I’m noticing a pattern that it’s something hormonal…? Now I had an appointment with my pcp about 3 weeks after I stopped bc pills all together. I explained to her all of this and that I needed something to deal with my menopause symptoms.. So I got the bloodwork done and she prescribed me the climara patch. It’s been a month and a half on this and the IC came back in full force last week.

I’m at my wits end. I’m miserable. And I think it’s the estradiol causing this?

I’m seeing my gyno next week, but I’m so apprehensive as she insisted before that the pill wasn’t the cause of the IC .

For reference, I eat extremely healthy and workout . I take care of myself as much as I can and I’m proactive with my doctors but when I was first diagnosed with IC I asked my gyno so many times if the pill was the cause and over and over I got a hard NO.

Thanks for listening all readers . No one seems to understand how miserable this makes you feel, on top of going through menopause with this shit!

I’ve had constant urinary urge on and off since late 2019. I prefer the term persistency, defined by researchers “as a persistent feeling of needing to urinate regardless of urine volume.” I’m female and currently 34. Have posted here before under a different username but have spent most of my time on the pelvic floor subreddit. Returning again because my urinary urge has returned after 2+ years of remission and on the fifth anniversary of my symptoms first worsening, I wondered if I’m missing any potential causes and treatments of these symptoms.

I suspect my cause is neuromuscular, but am open to other potential causes. 

- My main system is constant urge to void, regardless of volume, not worsened by bladder filling but rather by emptying.

- I’m seemingly not diet sensitive: sometimes I avoid coffee because peeing multiple times revs up my symptoms but when I got better I had been drinking coffee daily for a year. I also did an insane elimination diet for six months, eating nothing but brown rice, eggs, and blueberries, with no improvement in symptoms.

- This was not preceded by any UTI. I had slowly worsening frequency throughout the summer and autumn of 2019 and then developed constant urgency on November 1, 2019, the day after I wore a ridiculous pair of heels to a Halloween party.

- Worse during my luteal phase and sometimes almost entirely better during my period. 

- Worse during the cold: in three consecutive years I was quite a lot better during the summer and then had severe flare-ups in early November, right as it was getting cold in the UK. Even when I was 90-95% better I had several instances where I had two, three-day flares just from getting cold (e.g. radiator stopped working in the bedroom, or temperature dropped late one summer night and I was out without a jacket for hours).

- I once had a three-day flare triggered by emptying my bowels a stupid number of times in 24 hours due to illness: I think it overly stressed my pelvic floor

- Bladder urge seems to come from the periurethral tissue on the underside of my bladder, near where the G spot is. I sporadically had urethral pain before getting on amitriptyline.

- Once had a better period after being diazepam for two weeks but could have been a coincidence. Recently experimenting with short-term baclofen but hard to tell if it's helping

Six months after I developed the constant bladder urge, I developed unilateral PGAD, or more specifically an intense spot of nerve pain just down and to the right of my clitoris on my vulva. We think I slowly developed it during my six months of bladder persistency, as my musculoskeletal dysfunction progressed, and that it was unmasked when I slowly tapered off the amitriptyline.

Anaesthetic tests revealed the PGAD is not coming from my vulva or anything at my spine (eg. Tarlov cyst, annular tear) but from the nerves between, thought to be either the anterior branch of the pudendal nerve or the genitofemoral nerve, although never confirmed with nerve blocks. Fortunately, amitriptyline and gabapentin mask that nerve pain or I’d likely still have it. At that time, I’d never had any surgery, childbirth, or accidents that could have caused nerve entrapment or damage so doctors assumed the cause was musculoskeletal, probably caused by faulty biomechanics. 

I had a long history of sacroiliac joint dysfunction on the same side, although it had been misdiagnosed as sciatica for years. Around the time the PGAD started, I developed right-sided hip pain and dysfunction, which eventually escalated to the point that I was limping and barely able to walk. At one point I got out of a vulva nerve pain and hip flare by minimising all walking for three weeks.

I started treatment with a good pelvic floor physiotherapist who is also an osteopath. She found a refractory spasm in my right obturator internus, coccygeus, and levatori ani muscles, and some more mild tension on the left pelvic floor. There’s also a lot of tension in my periurethral fascia: she says it’s like my urethra is being tugged to the left a bit.

We struggled to get those muscles to relax on their own and started addressing causes for their spasm outside the pelvic floor, including the SI joint issue, anterior pelvic tilt and twist, my unstable hip, a glute that wasn’t firing. As my hip dysfunction worsened, I had investigations which revealed moderate hip dysplasia (shallow socket), along with a labral tear and impingement. Hip injections just seemed to flare up that hip pain and my degree of dysplasia means I’m not not a good candidate for any hip surgery short of a replacement. Hip dysfunction has been linked to vulva and bladder pain.

In late 2021, I met someone new, was happy for the first time in ages, and over the next few months the bladder urge just… dissipated. At that point, I’d been in physiotherapy for over a year. I think physio, some kind of mind-body connection, or even us having lots of sex helped the symptoms recede. I had like three flareups in the next year: twice at the traditionally worst time in my cycle (days 20-21) and then once in the cold. 

I got pregnant in late 2022. Continued to go to physiotherapy twice a month and was fine until my third trimester except for two flare-ups related to getting cold. During the third trimester I had sporadic bladder urge. I figured this was due to loss of core strength. However, I’m curious about the hormonal influence on my symptoms, after reading about people with IC who go into remission during pregnancy. I was ok for nearly a year beforehand but wonder if pregnancy masked some of the deterioration in MSK stuff I was likely already experiencing as baby stretched out my core muscles. Like maybe through high levels of relaxin?

I had an elective c-section in July 2023. I was certain that any pushing about aggravate my pelvic floor issues. And this was a very wise decision because I was basically symptom-free for months postpartum, didn’t even flare in the cold. I wonder now if this is due to low oestrogen and progesterone while breastfeeding.

My physio went on leave to have her own baby when mine was two months old, and while I tried other practitioners no one could really help in the same way. In  March of this year, I started getting the constant urge again. I think there are several potential causes: I had spent six months without treatment by my physio, my hormones were shifting again as baby started eating more solids (got period back in April), and baby was really heavy by this point and had to be picked up from the floor multiple times a day. 

I’ve been bad again since March. Been back in physio with my PT since September and feel I’m making progress restrengthening my muscles and re-stabilising my pelvis. I wonder if I had been “bad” for a while beforehand but it was being masked by some hormonal thing while breastfeeding. I'm struggling to cope day to day although and am terrified I'm not going to get out of this again.

Am I overthinking this and it’s just obviously neuromuscular and will settle down again with appropriate physiotherapy? 

I’m also considering as possible root causes, reasons for the exacerbation:

• adhesions from c section scar - although pain is very similar to last time
• inguinal hernia - these can cause genitofemoral irritation and genifemoral irritation can cause bladder urgency. My hip pain mostly presents as groin pain
• Uterine fibroid - one was found in an early pregnancy scan but wasn’t there at later scans. They tend to shrink during pregnancy and breastfeeding but often reoccur and can press on the bladder
• More hip dysplasia stuff - wondering if I can rehab again without addressing what’s probably the root cause of my unstable pelvis: my unstable hip
• candida infection - I had oral thrush a few months before this all started, although my frequency was already ramping up before that

I’ve never had any bladder-based treatment for this. When this first happened, my local NHS hospital was the one in the UK prescribing long-term antibiotics for urinary tract symptoms and I did three years of antibiotics (eeek) with no impact on my symptoms. Never had a positive UTI at any point. It’s never made sense to me that a bladder wall problem could cause one-sided nerve pain, localised to a very specific nerve dermatome. But I guess I could have developed two entirely different things within six months of each other (IC and hip issues causing PGAD).

Sorry this is so long! Wanted to detail the whole story in case people can identify a path I haven't gone down.

Wishing you all pain-free days

I had nonstop bladder pain for a year and a half roughly. It started when my doctor put me on nystatin to kill yeast in my gut.

I had to stop the nystatin due to getting every bad side effect. Including bladder pain. Nothing worked. AZO, antibiotics, pain meds, nada.

I tested for everything, and I am completely normal.

Finally got a cystoscopy with my urologist and he found lesions in my bladder. He assumed a UTI and gave me another round of antibiotics. Didn’t even test🤦‍♀️

Anyways, still had pain. My naturopath gave me bladder ease and it made me feel normal. Literally not even bloating or urges. I could cry I was so happy.

About a week and a half ago I stopped the bladder ease. Still on probiotics. But I feel fine. So far nothing has come back.

I see the urologist in December.

I want to get a second cystoscopy to check for more lesions as I dont know if they’re gone or not. But any ideas as to what happened to me?

Bladder flare up. I had coffee this morning I was falling asleep when I had to see clients because I’ve been doing back to back work. Falling asleep in front of one of the special needs kids i see is not professional. So there’s that coffee was a must today. I normally don’t flare as much if I water the coffee down. I also have been having a flare for today only it’s a burning lower abdomen flare not hurting as much when I pee. It just hurts like crazy when off and on just sitting. I think I need some remedies for the lower abdomen burning cuz it feel like a sharp pull twist then claws running up and down my lower abdomen. Also it’s stronger on one side ( left)

Every time I try to go to sleep I lay down and feel like I have to pee. Usually I just peed like twenty min ago. Sometimes the only thing to stop the sensation is a heating pad.

I’m (25F) pretty sure I have IC I’m just not sure who to see about it. Is this a gynecologist issue or a general practitioner issue. I’m afraid to go to my general practitioner just to be told to go to my gynecologist.

I was very depressed last couple of months because of my urethra burning symptoms, I felt very demotivated so I stopped trying any other symptom reduction methods. But I had to come to terms that if I didn’t do anything else to try and stop the pain then the pain would just not stop. It took a lot of courage but I finally booked a pelvic floor therapy appointment with a physiotherapist specializing in women’s health.

Any advice on what to expect? I’m ok with external and internal exams, honestly whatever helps, I’ll do.

Getting a cystoscopy, hydrodistention and instillation this coming Monday. Feeling really nervous and excited, any tips thoughts or helpful ideas? I just need to no longer be in this pain

Hi, does anyone know how I can stop my stomach looking so bloated from my bladder? It’s definitely my bladder as it’s lower belly, kinda like I’m due on my period but worse and 24/7. I’m guessing it’s because my bladder is inflamed but no matter what I do it never goes away. I only drink peppermint tea which is meant to help but it’s not in my case

I’m 16f and me and my family haven’t had access to good medical, so I’ve just been trying to research and figure out what’s wrong with me.

Like the thought of having to use the restroom is horrific, and I just wanna curl up and cry.

During the day I go and sometimes I’m left with discomfort after sometimes not. At night it’s literally a nightmare, I’m scared to drink water before I sleep but either way I practically live in the bathroom.

Ive gotten tested for UTI, and came back negative. And I did at home test, and negative again. It was to the point I was hoping the doctor would of said it was that, just so I can get rid of it.

I don’t even really know when this started, I remember starting the year with no issues and then all of a sudden for days and weeks I have to pee like constantly, and I never felt discomfort at that time, just peed a lot. I could drink whatever and not feel uncomfortable after, and the list goes on. And then one day it was just discomfort after going and feeling like I have trapped pee inside of me. It feels like a permanent UTI and it makes me want to scream. Like all it is, is the constant urge to pee and then feeling like I have to after

But the thing is I don’t even know if it’s IC. Because my symptoms can look like a lot of things. A lot of people dealing with IC say they’re in pain and they feeling burning, which I don’t think I do? And since my issues with being able to go to the doctor and have that, I’m just stuck taking supplements and drowning myself with water, and no signs of improvement.

I understand it’s bad to read things on the internet and “self diagnose”. But I don’t know if it’s IC or something that could easily be fixed. I’ve read that it could be endometriosis (could be a possibility because it runs in my family) or yeast infection, so many things. And I just don’t know. And some even say stress can make things worse if it is IC, and I’m going through a stressful time which makes sense if it is IC and it’s stress related

I’m tired of feeling scared to eat foods, and only drinking water. I can’t enjoy anything at all. It’s literally ruining my life. I see people that don’t have to think twice about drinking a soda or coffee, and I’m jealous. I hate this, I don’t know what’s wrong with me. If anyone has input please help.

What the title says already. My doctor offered me Amitriptyline but I’ve read it makes you gain a lot of weight. On the BMI scale I’m more on the lower end of the spectrum by being more so underweight, I like my body a lot tho. I’m healthy, besides my IC. I also have hashimotos and I am scared that once I gain the weight I might not be able to loose it again. Anyone have any good experiences for IC with other antidepressants?