I have been taking Spiro since 2020. It did wonders for my skin, completely cleared me up. But, a few months into it, I got a horrible uti, went and got antibiotics. It went away, until it didn’t, I started getting chronic uti symptoms. I went to see a urologist finally and they told me there was no correlation with the Spiro, my derm said the same. So I wrote it off. All of my Uti tests would eventually start coming back negative, but I would constantly feel the urge to go even if I had JUST gone, cramping Uti feelings, interstitial cystitis feelings, food sensitivities. The pain was chronic, I had never had any problems prior to this. I started trying herbal things, d-mannose, marshmallow root, probiotics, those helped a bit but never enough. I would flare up after eating sugar, sweeteners, cut out caffeine and alc, literally EVERYTHING. I was so desperate I went on longer term antibiotics. I weaned myself off Spiro, I’ve been 4 days off and I notice that I am obviously going to the bathroom less but I’m not sure if I see a difference or not, that feeling is still very much present. I’m starting to breakout again. Has anyone ever experienced this? I’m worried Spiro is the cause of everything because I truly had no problems before going on this. This has been going on for a year but i can’t find anyone else talking on this. How long will it take to feel better, if ever? Could there be any correlation between this diuretic and my chronic pain? Any advice will help, I’m pretty desperate. I’m going to wait a month to see if there is any change, if not, I will probably just go back on it. Thank you.
Surgery scheduled for February 17. This will be my first one specifically for endometriosis. My last surgery in 2017 removed cysts. But I have also been having really bad bladder pain.
They will be checking for Interstitial cystitis. Has anyone had this? I was told it was more common in those with endometriosis. I believe the inflate my bladder as a test and such. Just wondering if anyone had this experience!
Also, if the laparoscopic surgery is much different for cysts removal vs. scar tissue removal? THANKS FRIENDS!
Hi there! I haven't posted on Reddit in YEARS, so I hope that I am doing this right.
Earlier this week, I had a consultation for IV Ketamine for C-PTSD and Major Depressive Disorder. I meet all criteria to receive the infusion, HOWEVER, I do have pre-existing Interstitial Cystitis. The provider pretty much told me that it is up to me if I want to initiate treatment. We did make some med changes (I don't have a whole lot of hope on the med changes... I've been resistant to everything else and it is hard to maintain a positive attitude toward it lol). He thinks it would be beneficial, but wanted to let me know about the bladder risks associated with use of K, but that it is typically with the abuse of it. I just wanted to know if there is anyone out there in Reddit-land that may have IC and received K... or any other folks that would like to chime in on the subject.
Given how incredibly miserable I've felt mentally over the past few months, I kind of feel like heck the risk because I deserve to feel better mentally than I do right now. I am so tired and I am pushing away everyone that I love. This is so hard, dude.
I’m a 24 year old transgender woman. I’ve been on hormones for about 21 months now. About two months ago, I started having mysterious pelvic pain. At first, I assumed it was constipation, because it was sort of dull and heavy and swollen. But regular bowel movements quickly put an end to that idea. After much back and forth with both my GP and a Urologist, as well as an attempt at treating me with antibiotics for prostatitis, we arrived at my current diagnosis of interstitial cystitis. My urologist did a cystoscopy to confirm this (he observed the characteristic inflammation patterns inside my bladder when he did) as well as a hydrodistension and bladder instillation. From my own research, I suspect it might be the myofascial pain or neuralgia subtypes, since the pain doesn’t really feel like a UTI at all, and I had a few short (2 days or so) episodes of intense tingling or burning pain (primarily around my urethra and perineum areas) that was improved by standing. I also have a herniated disc in my back, between L4 and L5, that already causes me chronic pain. I’m unsure if this could somehow be related to or causing pudendal nerve compression, which I know is typically associated with the neuralgia subtype of IC.
The pain on a day-to-day level is bad enough that I’ve basically had to derail my life to deal with it. I’m taking a semester away from my PhD program (from which I receive a stipend, meaning that I’m also taking a semester away from my source of income). I didn’t make this decision lightly, but I really felt it was what I need to do to get better. The pain is bad enough that I can’t perform at an acceptable level or meet my obligations—if I’d tried to remain in the program for this semester, I can guarantee it would have ended with me being expelled from the program entirely for bad performance.
So far, I’m pursuing a multimodal treatment regimen. I’m taking elmiron and amitriptyline, following an elimination diet, and attending pelvic floor physical therapy twice a week. The pain has improved slightly, and I haven’t had any intense episodes like the ones I described above since my cystoscopy, but I’m not nearly at a level where I can function like I did before all of this.
This is all a prelude to the point of this post, which is me searching out more information about this condition and vaginoplasties. The most concrete information I’ve been able to find through google was some study which confirmed what seems like an obvious assumptio
... keep reading on reddit ➡Was wondering if anyone here does the same, or if you've found anything else useful for the treatment of interstitial cystitis. I appear to have some type of mast cell dysfunction in my bladder, mostly the bladder trigone/neck area. I also tend to get a lot of UTIs... LOTS of antibiotics....
I need help managing my IC. I had my first flare up when I got my period in middle school (I’m now 25). It tends to flare up the most around my periods over the years and azo maximum strength only helps so much. I’ve noticed that I’m usually constipated at the same time and feel as though the added pressure against my bladder is a huge issue. I’ve continuously had water to the point that I went 3 times in an hour. I’ve taken laxatives to try to help but nothing is happening. I’m tired of relying on azo and a heating pad that don’t solve the root of the problem. I’m looking for better ways to prevent this since nothing is making me go. Not even laxatives.
I absolutely love this show, to start. However, they should have just shut the f*** up about interstitial cystitis. They made this disease, which I've suffered with for a decade and a half and which has taken over my life, seem like a pampered princess's bid at attention. Like an idea someone just makes up then discards when it's no longer convenient. I don't think I'm extremely sensitive about character portrayals usually, or jokes, or whatever; I don't pull the offended card on the reg or anything. But this was just really shitty. So few people are even aware the disease exists, even those suffering with it! IC sufferers see an average of seven doctors before they even receive their diagnosis! Sometimes that means they live with constant, debilitating pain for years without any hope of relief. The number one thing that could actually help patients and their families/support systems is raising awareness and knowledge. The writers at You gave us derision, dismissal and a reversal of all the work done by medical researchers and doctors on the frontlines of this disease to get it recognized as a real condition, and not a figment of the patient's imagination. Next time, Hollywood, mind your damn business.
Wake up
Be asexual (unwillingly)
Eat Bland Chip
Cry
went to the urologist today because i kept thinking i have UTI’s. turns out i haven’t had a single one but i might have interstitial cystitis which the doc told me can be comorbid with fibro. was wondering if anyone else has it and if they take meds for it/which kind/if they help/what else helps?
I was diagnosed with UC this year after 5 years of struggling. I also supposedly have CRMO (auto-inflammatory bone disease) but I can't help but think there's one large term that could tie all this together.
Anyway, I get UTI's like you wouldn't believe. It's ridiculous and most of the time the urine is clear so it's mainly just the cystitis pain. I ended up in hospital earlier this year because what I kept brushing off as cystitis ended up being a UTI ended up as urosepsis. I am in a lot of pain today and the pain is getting worse in my front and my lower back. The UC vs Cystitis pain is hard to differentiate. This pain feels similar to earlier this year and I'm worried. I did have my second Pfizer today but that should be worsening existing problems right? Anyone else deal with this?
Im so sorry if this seems a little venty at first. So I’m 18 and in college, I’ve been having problems with my bladder for over a year now. It started back when I got a UTI and went to a doctor for help and he prescribed me 14 huge antibiotics for a small UTI. Ever since I have been having chronic UTI symptoms that include flare-ups, urgency, the occasional itchiness, and vaginal symptoms that mean no sex and no tampons because i can’t even try to put anything in my vagina without it being incredibly painful and almost torturous. I have had sex before, with my boyfriend of now 2 years, it was wonderful before I got the symptoms but we haven’t been able to do anything in a little over a year now (and to clarify we were both of legal age at the time) he’s been an incredible support and rock for me through all this but I’m scared. My doctors still have to do a biopsy to confirm it’s IC, but I’ve already been doing what I can to try and help my symptoms but nothing seems to be working so I’d like some help if you don’t mind.
How did you guys cut out all the food you have to and still stay in budget? Im a college kid so I’m very limited in resources and don’t have the time to cook my own food?
For people that suffered with painful sex, did it get better? I’m willing to wait but one day I would like to have kids of my own and enjoy my partner and I’m anxious it won’t happen
What worked best for you in curing the symptoms?
Thank you for those who read all this I’m so greatful this sub exists and I’ll be coming to it as much as I can through my journey
Does anyone here have this? Is it common to have it with RA or other autoimmune diseases? I off my meds right now (long story) and I'm having the same symptoms I've had many times before, where it feels like a bladder infection. I go get tested, and it comes back negative for infection. I've been checked for STIs and other possible causes. All negative.
I'm not even gonna lie this is gonna be a huge self-pity rant paragraph. A year ago I was told that I had high-risk HPV and after that I was so sad and I was thinking I'll never talk to a boy again like I'm really gonna focus on myself and that's what I was doing. The thing is I am over having the high-risk HPV it's the fact that I knew how much of a risk having sex was and then I still went and did it with that boy and got this UTI pain that's just not going away. And it's not testing positive for any bacteria.And I was so so sad about the diagnosis at first because I thought it was the absolute end of the world. But then this boy started to show interest in me around august and of course like the fucking whore that I am a year later after my diagnosis you know just totally forgetting about the hell that I put myself through... I had sex with a boy and then I got a UTI. And then about 10 days after I was done with the medication I was feeling fine the symptoms came back in I've literally had UTI symptoms for four months. And I just went to are you rheologist and she referred me to some pelvic floor therapy. I'm just so down and sad to because I'm literally feeling so uncomfortable if anybody else is in a situation like that please feel free to reach out
I’m a 24 year old female, I notice my bladder area of my foot is puffy and tender, I feel pain when I press on it , especially my left foot. Has anyone experienced this? Thank you 🤍🤍
It's been 46 days since I got 4 steroid injections into my pelvic floor via vagina. I was injected with bupivacaine (like novacaine) and triamcinolone (steroid).
Prior to steroid injections, my symptoms were extremely eratic, like a massive wavelength. I could be totally fine and have no pelvic floor tightness, no symptoms, or I could have pain at an 8 or 9, with acid like glass shards like pain in my urethra and bladder. I avoided intimacy during a flare, but intimacy didn't trigger my symptoms unless I got a UTI.
My symptoms after injections, completely disappeared for about 10 days. The actual injections were extremely painful and took a day or so to stop hurting. But my pelvic floor was loose and relaxed immediately. After around 10 days my symptoms came back. Unlike before however, the pain is less concentrated on my urethra. I will feel an occasional "twinge" but instead I feel a near constant low burn of an extremely tight pelvic floor. My pain doesn't go above a 4, but it also doesn't go below a 1. I'm always at least somewhat uncomfortable. Sex has become impossible now because I essentially have vaginismus. Orgasm and masturbation used to relax my pelvic floor, now the muscle spasms from orgasm are very painful as my fist tight pelvic floor refuses to relax during them.
This situation is preferable to what I had before. I literally wanted to kill myself when my symptoms were at their worst. But I also never am without any discomfort. Essentially I'm now at an even level of discomfort instead of a wildly oscillating scale of feeling 100% fine and torturous pain.
I have a follow up appointment with my uro-gyne at the end of the month. I'm going to ask him if he thinks i should go for another round of steroids or move to botox at this point.
I am however, glad I made this choice and would do it again. I'd rather have constant discomfort to low level pain than frequently feel pain on a level where it's not worth it to be alive, even if it means I never feel "normal" and can not have sex.
Hi everyone! I'm new to this sub so if this post would be better posted somewhere else, please let me know. I'm basically trying to get some insight on what i'm experiencing. Sorry if it's a bit long.
I've had multiple UTI's since I was a child and learned to handle them pretty effectively, sometimes needing a doctor and sometimes not. However, starting last August, I had UTI symptoms and went to a Patient First, my primary care doctor, and my OBGYN and they all confirmed it was not a UTI. I was also tested for STDs (negative) and they all confirmed I had a little blood in my urine but not enough for me to see.
This caused me tons of stress and I overhauled many things in my life, still thinking it was a weird UTI or a latex allergy or something. After a month or so, it went away.
Now, it's happened again. The only things I can think of that lead up to it are: I was very anxious and depressed the week before, I ate lots of sweets the week before (anxiety), and I sat in a car for two hours before I started feeling the pain again.
The pain is also kind've weird too. Usually, when I have a full blown UTI, the pain is intense and in my urethra and I have to pee all the time. Now, it's more of a dull cramping feeling around my pelvic area and urethra. I'm wondering if this may be signs of Interstitial Cystitis? I don't have much pain during sex, only very specific positions.
I'm probably going to Patient First today just to confirm that it isn't a UTI. But I feel the next step is a Urologist and I'm nervous about it. The ones nearby don't seem to have great reviews and they're all located in hospitals? Do I need to be admitted into a hospital to see them?
Also, if my symptoms clear up before I can even see the Urologist, should I still go? Can they check for Cystitis if I don't have symptoms in the moment? I'm just nervous about the doctor not taking me seriously.
TLDR: Just wondering if my symptoms sound more like Interstitial Cystitis rather than a UTI, or something else. And how I go about seeing a Urologist who will actually listen to me.
Thank you for any advice!
Edit I really appreciate the info and responses. Turns out, it's just a UTI, so I'm glad I stopped by Urgent Care and got some antibiotics. I'll definitely keep all the suggestions in mind in case things get worse in the future.
I hate having to describe my pain. I find 1-10 scales incredibly arbitrary -- what is the difference between a 6 and a 7? It's like trying to describe the funny sound your car is making, but only at these specific moments, and of course not when the mechanic is under the hood.
To help myself, I have tried to find ways of describing my IC/pelvic pain. It feels like:
- having a UTI and my period at the same time
- razor blades slicing from hip to thigh
- a bowling ball is sitting in my pelvis
- someone is blending up my insides
- when steam hits a sunburn
I'm going to (eventually) set my fear of doctors aside and get checked out, but I just found out about IC so I'll ask you guys.
I've been having this same recurrent pain since I was around 8. All the same symptoms of a UTI. It used to be rare and now I'm 26 and it's about 2-3 times every week. I eat something bad or spicy or I don't drink enough water, then it happens - burning pain after peeing, I take my Azo, cranberry pills, drink a crap ton of water. Sex has always been painful. Does this sound like a chronic UTI or IC?
I've been taking 100 mg of Spironolactone every day for about 6 days for hirsutism. I can't deal with the constant urge to urinate and the sensations and discomfort it brings; it's so hard to focus on anything else. Taking Hydroxyzine (already have a script for anxiety) since apparently that has some utility (https://www.aafp.org/afp/2001/1001/p1199.html); need to purchase some Tagamet as well.
Tapering down to 50 mg of Spiro a day. Hopefully I won't get a spike in T levels in the meantime and can start to live normally.
Sending love and hugs to anyone else going through similar struggles.
Hi longhaulers,
I've just come back from a visit to the urologist - been dealing with UTI-like symptoms and bladder pressure / pain for months now. He thinks I have something called Interstitial Cystitis.
He said this an happen after physical trauma, (like oh idk.... long hauling. Most traumatic thing my body has ever gone through).
If you're having these symptoms try the interstitial cystitis diet and see if it helps! https://www.ic-network.com/downloads/2012icnfoodlist.pdf
Interesting to note - he said that histamines in the diet can make it worse and recommended antihistamines for symptom management... that's a theme we've been seeing here in this subreddit. strange.
It would be SO convenient to just take the Bariatric vitamins but they all have ascorbic acid as vitamin c. Has anyone experienced not being sensitive to vitamin c after surgery?
Does anyone else here suffer with endometriosis or interstitial cystitis? I am currently trying to navigate all 3 and it has been extremely difficult. I can’t help but wonder if they are all tied together or from the same root cause? Curious if anyone else can relate/ talk to tips they use to manage symptoms. Thank you
I pursued 12-14 doctors because I had painful ejaculations, tingling and burning in my bladder constantly, and frequency. I was treated with multiple antibiotics and then one day I stumbled on INTERSTITIAL CYSTITIS through my research on google. Doesn’t affect many men and so there’s limited info on it but once I started following a diet that helped treat IC, my symptoms began to calm, and this 6 month flair of pain was gone. Still takes managing it daily but I never had a single doctor talk to me about it - and then when I started to ask doctors about it, they just brushed it off and told me it’s prostatitis - even though I had all sorts of negative test results, including a semen culture.
Helloooo, I’ve been experiencing IC or “painful bladder syndrome” and I know it often overlaps with endometriosis. However, during my lap they checked in my bladder too and there were no endo adhesions.
Just wanted to see if anyone else has this. I know there’s like an IC “diet” but didn’t know if that would even be helpful if the IC is caused by endometriosis inflammation.
Idk I’m just tired lol. I’m irritated that now I ALSO have bladder pain, not just uterus pain!! Like come on just chill out. I think I have a UTI every time I flare and it’s stressful
i (17y/o) have suffered from an undiagnosed chronic pain condition for over 6 years now, which i’m coming to understand is very likely interstitial cystitis (painful bladder syndrome.) although i have been suffering for so long, i have found no consistent fix or prevention for the pain.
so my question is: what has helped you? what has made the pain less frequent or less severe?
also, is the condition as disabling for you as it is for me? i am unable to attend school in person, keep a job, or make any sort of plans with friends because my pain controls my life.
I have CPPS and think I may have developed IC / PBS as well as the muscle spasms. I've started doing stretches and found, I think, a trigger point in my right groin/perineum area. However, my pubic pain and frequency seems to point to IC / PBS. Has anyone else experienced this, and has Elmiron helped as a treatment?
Hi guys, my gyno suspects that I have IC and has prescribed me a plethora of medications to help with the symptoms. My bladder urgency/frequency never really resolved but my lower back and pelvic pain improved a ton.
A few months ago I stopped taking my birth control and realized that it was actually my birth control (depo shot) that had been improving my pain, not the IC meds.
I have most of the symptoms of endometriosis, specifically bladder endometriosis. Unfortunately the symptoms are almost identical to IC. I also have a retroverted uterus (tilted backwards) which apparently can also cause a lot of these symptoms.
I just thought it was odd that birth control has been the only thing that helps with the pain, and I only began experiencing most of my symptoms a few years back when I took a break from my long term birth control use.
My gyno is very hesitant to do a laparoscopy since I have some intestinal issues but honestly I think they could be caused by endo as well. I bloat SEVERELY every single day. No allergies or intolerances. I always thought it was due to SIBO (small intestine bacteria overgrowth) but even after treating that I still look pregnant most days.
I was wondering if anyone had experience with these conditions or knew of any identifying differences between the two? It’ll take a lot to convince my gyno to do a laparoscopy and I’m trying to figure out if it’s worth it.
(Also this is my first reddit post so I apologize if the formatting is weird, thank you so much for any advice!)
So I just got back from the doctor and based off my symptoms (burning during urination and sex, bladder pain, etc but negative for UTI/STD) she is pretty confident I have interstitial cystitis. She said she’s going to send my urine sample to the lab for more testing and refer me to a urologist, but it may take several weeks until I can see one. She suggested in the meantime I follow the diet for IC to see if it helps me. Just looking for advice and guidance. If any of you have been diagnosed with IC what did you find that helped you most?
I'm 22. I got the implant in last October. Then on I suffered from UTI symptoms. After dozens of swabs for everything under the sun, I was thrown 4 courses of antibiotics for UTIs and 2 courses for bacterial infections within 7 months, even though the tests came back negative for any sort of infections.
I suffered from pain, burning, itching and I had sharp pains in my lower abdomen. No control over my bladder, would pee myself all the time with no warning or need to pee. Doctor at one point said I was imagining it all as the tests all came back negative for any infections. I asked if it could have anything to do with the implant and she said no. So she put me on a waiting list of 2 years to see a urologist.
I found an article/medical research about a girl in the same situation as me. UTI symptoms, pain, burning but no UTi. She was on oral birth control. She was then diagnosed with interstitial cystitis. As soon as she stopped the BC her symptoms cleared within 7 months. So I decided that I would do the same thing and lo and behold, my symptoms stopped completely for 4 days, 4 days before I got my period back.
I still suffer from the pain but I have full control of my bladder again and the pain is manageable whereas before I was barely coping. Drinking water is my cure for the pain. And a few days before my period is due, I have zero pain. Meaning it must have something to do with the hormones. I'm hoping maybe it will fully go away soon like the girl in the article. Maybe in another 5 months it will.
I just wanted to put this out there for other women potentially suffering with the same thing, unknowingly caused by BC.
I really want to crack the above question. Do you just get used to the pain and try to enjoy it regardless? Does anyone have any tips on how to make it less painful whilst having this condition? Would be very much appreciated!
This sub is dedicated to moms suffering with interstitial cystitis. I have had bladder issues since age 6. I was diagnosed with end stage ic due to low capacity. Please join if you also have been diagnosed with interstitial cystitis or think you may have it.
Can people have sex with interstitial cystitis ? The fact that I might have it is making me so depressed and sad I'd rather have infection but not this for life .the urgency and frequency is killing me
Hi everyone, to keep this simple I have interstitial cystitis (painful bladder syndrome) and suspected endometriosis (doctors refuse to cut me open to confirm but I have every symptom). For the last 4 years I have take Junel Fe 1/20 continuously to skip periods with the only side effect being a lowered libido. I have had excruciating periods my entire life and now that I have IC I get very painful bladder flares on the last week of the pack, I don’t get an actual period but I get crazy urethral burning and overactive bladder. These symptoms have gotten worse recently and I think I might need to increase my dosage (I was thinking Junel 1.5/30). I still get spotting every 3 months and I’m hoping increasing the estrogen amount will stop that and prevent me from getting the PMS flare which messes up my bladder. I’m not sure if doing this could make my endometriosis worse though. If anyone has any thoughts or experience please let me know, thanks.
It can get complicated when many different diseases/conditions share the same symptoms. One of the reasons to always see a doctor first to get a diagnostic. Or a second opinion if you are not satisfied with the first diagnostic.
Some interesting links about those various conditions:
Prostatitis:
https://cancer.ca/en/cancer-information/cancer-types/prostate/what-is-prostate-cancer/prostatitis
Primary Bladder Neck Obstruction (PBNO)
https://www.healthline.com/health/bladder-outlet-obstruction
Overactive Bladder (OAB)
https://www.urologyhealth.org/urology-a-z/o/overactive-bladder-(oab)
Interstitial Cystitis
https://www.urologyhealth.org/urology-a-z/i/interstitial-cystitis
BPH
https://www.urologyhealth.org/urology-a-z/b/benign-prostatic-hyperplasia-(bph)
Urinary Retention
https://www.healthline.com/health/urinary-retention
Interesting article about PBNO diagnostic VS prostatitis and other LUTS
https://www.nature.com/articles/s41598-021-83672-5
PBNO Review
Posting this on here to see if anyone else has used Spironolactone. I have been taking it since 2020 for acne and it has cleared my face but it is a diuretic. I have been dealing with “chronic utis” and interstitial cystitis symptoms for over a year. It started getting really bad a few months after I started taking this medication. Never had problems prior. I am wondering if anyone else has experienced this. Anything will help, I am desperate. Thank you!
What is the difference between prostatitis and interstitial cystitis.I m not sure what do I have .my main symptom is perineum pain and frequency
It would be so easy to just take the Bariatric vitamins but they all have ascorbic acid for vitamin c. Has anyone had less sensitivity to ascorbic acid post surgery?
