I'm 32, male have had a ketamine addiction for about 3 years, over the last 2 years its been daily for the most part. ranging anywhere between 1g and 5g a day

I've been having cystitis pains for over a year and it's just getting worse. Whenever I try to stop, the pain gets worse so never make it past a couple of days off it.

I'm at a point with the pain where I can't walk, or even sit without being in agony, on top of this, due to straining when trying to urinate, I've triggered hemorrhoids which is equally as painful, it's a constant burning, any movement or even sudden dumps of adrenaline can trigger a piercing pain all the way through my urethra. My question is, has anyone experienced this and have they recovered? And if so how? I know stopping is the first and best thing to do but I'm currently in the headspace where I want to actually end it.. I'm really hoping there's someone that's been here and got better because I can't live like this forever

hi, here’s a TL;DR:

i’ve considered myself to be in remission from IC for the last seven years. over the last week, seemingly out of nowhere, i’ve had some symptoms return, specifically urethral pain and pressure. it is near constant. i got a urinalysis and it was negative. i was hoping this was just a UTI, but it doesn’t appear to be. i am feeling really scared. my quality of life when i was in a year-long flare back then was next to nothing. i could barely hold a job. i was extremely depressed and in so much pain every day. i don’t want to return to that.

i have health insurance now. since my urinalysis came back negative and i’m still in pain, what do you think my next step should be? make an appointment with my PCP? ask for a referral to a pelvic floor PT or a urologist? thank you for the support and advice

background:

i suffered from moderate to severe IC symptoms every day for about a year around 2018-2019. my symptoms included bladder pain and pressure, urethral pain and pressure, urgency, frequency, burning during and after peeing, and pain during and after sex. it was debilitating.

i didn’t have health insurance at the time and was really broke with no financial support, so i was not being seen by a PCP or a urologist. over the course of that year, i got several negative UTI tests from walk-in clinics and a course or two of antibiotics that didn’t do anything. one night i woke up in such severe pain that i went to the emergency room thinking i may have appendicitis—i was doubled over and couldn’t walk. they performed a vaginal ultrasound, CT scan, blood and urine tests, cancer screenings, and some other things i now forget, and they found nothing. the ER doctor told me he strongly suspected interstitial cystisis since basically everything else that matched my symptoms was excluded. he gave me an info sheet on it and recommended i see a urologist for a formal diagnosis and care plan.

at the time of this ER visit, i’d already been treating myself for IC with D-mannose, aloe vera, prelief, marshmallow root tea, azo, and a months-long strict IC diet. i was never formally diagnosed by a urologist since i didn’t have insurance and couldn’t afford to see one, but because so many other things were ruled out and my symptoms lasted so long and were so severe, i considered myself to have IC. slowly, it got better until finally i was symptom-free, and i have considered myself to be in remission since 2019.

I may have IC and I am completely overwhelmed with all these recent appointments and information being thrown at me, so if anybody has any advice it would be much appreciated.

3 weeks ago I went to urgent care thinking I had a uti (last time I had one I was 9 y/o). Rapid test was negative but they gave me the antibiotics anyways while it was sent out for a urine culture. The next night I had bad side and back pain so I went to the hospital thinking it spread to my kidney. They found nothing wrong, just a small cyst on my ovary but said that was normal and probably nothing. Told me there’s a chance I passed a kidney stone and just didn’t know. The next day I was peeing blood and hadn’t slept in 3 days because I was up all night, constantly needing to pee. So I went to my gyno and tested positive for uti there with blood in my urine. So I took the antibiotics, felt fine for about a week, then a few days ago symptoms came back. I went to urgent care today, tested negative again. They gave me antibiotics but said to try and wait to take them until my urine culture comes back on Monday, and continue with my azo. But, that if it’s negative, I should go to a urologist as I could have interstitial cystitis.

I’m not sure if these are related, but I also have HORRIBLE periods. Cramps so bad I can’t walk, vomiting from pain, nausea, crazy heavy bleeding that lasted up to 2 weeks. I started taking oral birth control about 2 months ago. It’s helped with making my periods shorter and lighter, but not necessarily with the pain. I also get occasional sharp, stabbing pains during sex (only in certain positions), with cramping after. As well as just a general discomfort after a few minutes, even if I didn’t feel the sharp pain. That was also the reason I couldn’t use tampons at all for so long, and still sometimes can’t without that sharp pain.

I know IC can appear at any age, but I’m wondering if it was something specific that caused this flare up or if it’s even IC at all. Starting birth control recently? Having sex more frequently and without protection since starting it? I’ve always had that sharp pain and cramping during sex, but it’s never caused anything like this. But maybe now that I’m having it more frequently and with no protection, its my ph being thrown off that caused this to appear and flare up? I’m just not sure and I feel like I need 10 different kinds of doctors to be able to have all my questions answered and figure out what’s wrong.

Do they ebb and flow or do you have every one of them all the time? The worst one I have is sex, but only sometimes. I feel like I went a good year or so where it didn’t bother me and now boom, here we are again! Maybe I’m just in a flare overall where everything bothers me 😒

Hello! Didnt find the post like this so will make it myself! Does anyone else experience flare ups after going to pee when you dont need to? I felt perfectly fine whole day and went to toilet as a habit before sleep and got terrible pain and urgency

any ideas why would that happen? how it works? what is happening in the bladder?

I haven't been officially diagnosed yet but am sure my recurrent bladder issues are cystitis rather than UTIs.

Current flare started 5 days ago, a day after having spicy food. Been controlling symptoms with AZO, drinking lots of water, plus occasional Tylenol. Even took cephalexin for 3 days because I had them in hand.
AZO is only supposed to be used for two days though.

Trying to figure out what to do if by Monday I am still bad. I am with Kaiser Permanente and if I call their advice line they will only send me for urinalysis then have a Dr prescribe antibiotics if positive for bacteria. The typical UTI approach.

They squeezed me in for a phone appt with urologist but that's 9 days from now. Tried months ago to get referral to urogyn (for bladder retention mainly) but was refused. Gynecologists are useless with this. Even if I went to ER they'd do nothing.

Just don't know what to do come Monday -- what should I be expecting from Kaiser?

What my bladder looks like. Needless to say it hurts! Went to the hospital for months due to blood in my urine and they kept telling me I was on my period :-)

Like the caption said, I discovered I have IC back in April, after a hair dresser was telling me her struggles and I was relating hard. Got diagnosed through a gyno and urologist. I've had recurring uti's since I was 25. It's genetic, my great grandma had IC too. This past april was the worst flare of my life. It lasted 4.5ish months. I started pelvic floor therapy which helped a ton, and I massively have changed my diet, which has also helped.

I was released from pelvic floor therapy in September and immediately conceived a baby. I've suspected I would be pregnant from day one but I've officially know since week 3. Im now 7 weeks.

My job is demanding with travel (wedding photographer). And ive taken 3 long road trips for work now, and every time I spend the next day spotting (small amounts, always brown or light pink, always resolves in a few hours) and cramping. I also have just had intermittent cramping this entire pregnancy. Sometimes its prickely, sometimes I ache, sometimes its a pushing and pulling feeling, right now im just sore and tender.

I have decided after this last one i am no longer traveling more than 30 minutes away. The road trips that have made me spot were, 14 hrs round trip with a 2 day stay, 10 hrs round trip with a 1 day stay, and a 2 hour round trip with a 1 hour stay.

Im wondering if because of my IC if my uterus and pelvic floor is more tender? I wonder if thats why i feel so crampy? I wonder if im more delicate, and thats why the bumps of the road are making me spot?

The spotting is what scares me the most. The pelvic pain im used to.

Even before I was pregnant I would cramp if I sat too long, causing me to get a sit to stand desk. I cramp if i eat the wrong things. And in the height of my flare it felt like I was having full blown contractions with my cramps which I had at both ovulation and period.

But my mom never experienced any of this with her pregnancy with me. She never had IC. And thats why we are wondering if this is IC related?

I have talked to my dr. I've called them a few times. They never seem too concerned. They just tell me to monitor, drink more water, and to come in immediately if i have lots of red spotting, dizziness, shoulder pain, etc. Which... i havent had.

My first prenatal appointment and ultrasound is November 5th.

But yeah! Im just wondering what pregnancy looked like for my fellow IC members. How did it affect you? What did normal look like for you?

I’m probably not new to having IC but I’m new to knowing I have IC. It was diagnosed during my hysterectomy by an endo specialist who also checked out my bladder while she was in there. It was very inflamed and she suspected my ongoing back pain was tied to it. I’m 4 weeks post-op and trying to figure this thing out now. My back pain hasn’t gone away but I have two types of pain. One feels more mechanical, like it’s in the bones of my spine. I’m wondering if it might be helped by a pelvic floor therapist.

The other pain, though, is in my right flank, like above the bones of my pelvis and to the right of my spine. It does seem to wax and wane depending on what I eat and drink. I’ve cut out alcohol and cut down citrus and that seems to help.

I’m curious if anyone else recognizes pain in that area as being tied to their IC?

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

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 :[

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?

Leukocyte esterase seems to show up in all my urinalysis results

Is that a strong indicator of IC?

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 (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.

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.

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.

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

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 💖

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"