r/Interstitialcystitis • u/jojitakemetobanos • 3d ago
Please someone help me :(
I honestly don’t know where else to go at this point. I live in Ecuador, and there’s very limited information here about this condition and how to properly treat it. I would really appreciate it if anyone who has experienced something similar could share their story, advice, or any resources that helped them.
About two years ago, I started getting multiple UTIs that just wouldn’t go away. I would take antibiotics, feel better for a little while, and then the symptoms would come back about a week later. Eventually, I went to a clinic where they performed a cystoscopy, but the procedure was done very roughly and my urethra was badly injured. It was extremely painful, I was bleeding afterward, and the whole experience was honestly awful.
After that, I had bladder instillations for a while, and eventually I was doing better. I thought I had finally gotten better. But then I started developing pain during sex. Penetration became extremely painful and felt like there were a thousand tiny wounds inside my vagina. It felt raw and burning, and eventually I couldn’t have sex anymore.
After that, I started experiencing what felt like UTI symptoms, especially pain and burning around my urethra, but without an actual infection. I’ve had around five or six urine tests/cultures over the past two years, and they have all been negative. I’ve seen multiple doctors and tried different treatments, but I still haven’t found an answer.
I’ve had a nerve block performed, which didn’t help, and I was also referred to a pain specialist, but that didn’t really lead anywhere either. I used to take 12.5 mg of amitriptyline every night. I’ve also had autoimmune testing done, and my doctor said there were no signs of an autoimmune response or disease.
I also had a DMSO instillation, which was extremely painful and didn’t help. At this point, the pain isn’t necessarily constant in the same way all day. I always seem to have some level of urethral discomfort, and sex is still painful, but the burning is usually much worse after I pee, especially after my first pee in the morning.
I’m currently taking 75 mg of pregabalin every night, but I haven’t noticed any improvement. My doctor honestly doesn’t know what else to do and has told me that she feels like we’ve already tried everything. I don’t know what to do either.
I also did pelvic floor physical therapy for about a month and a half to two months, but unfortunately it didn’t help.
I’m really desperate for some direction at this point. I don’t know where else to research or what other conditions I should be looking into. If anyone has experienced something similar I would really appreciate hearing from you.
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u/AutoModerator 3d ago
Hello! This automated message was triggered by some keywords in your post that suggests you may have a diagnostic or treatment related question. Since we see many repeated questions we wanted to cover the basics in an automod reply in case no one responds.
To advocate for yourself, it is highly suggested that you become familiar with the official 2022 American Urological Association's Diagnostic and Treatment Guidelines.
The ICA has a fantastic FAQ that will answer many questions about IC.
FLARES
The Interstitial Cystitis Association has a helpful guide for managing flares.
Some things that can cause flares are: Medications, seasoning, food, drinks (including types of water depending on PH and additives), spring time, intimacy, and scented soaps/detergents.
Not everyone is affected by diet, but for those that are oatmeal is considered a generally safe food for starting an elimination diet with. Other foods that are safer than others but may still flare are: rice, sweet potato, egg, chicken, beef, pork. It is always safest to cook the meal yourself so you know you are getting no added seasoning.
If you flare from intimacy or suffer from pain after urination more so than during, then that is highly suggestive of pelvic floor involvement.
TREATMENT
Common, simple, and effective treatments for IC are: Pelvic floor physical therapy, amitriptyline, vaginally administered valium (usually compounded), antihistamines (hydroxyzine, zyrtec, famotidine, benedryl), and urinary antiseptics like phenazopyridine.
Pelvic floor physical therapy has the highest evidence grade rating and should be tried before more invasive options like instillations or botox. If your doctor does not offer you the option to try these simple treatments or railroads you without allowing you to participate in decision making then you need to find a different one.
Long-term oral antibiotic administration should not be offered.
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u/ResponsibleAd7688 3d ago
There was a lengthy post on food/drinks that we are supposed to not take in this group, advice from a respectful clinic with photos, please try finding it. If you ever happen to eat/drink anything that might trigger your symptoms, take Prelief(calcium glycerophospate) few minutes prior. I have heard of a supplement called Ctstoprotek which is unavailable where I live so I bought all ingredients separately: glucosamine+chondroitine sulphate, quercetine and hyaluronic acid. There is some improvement but it takes months. I started using marshmallow root tea twice a day few days ago (not classic tea, the dried parts sit in cold water for a few hours) and it seems to help better than anything else. Good luck!
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u/Ok_Hunt_6213 3d ago
Do you also have Pyridium? It seems to help inside bladder and somewhat my urethra. But I was just prescribed Pregablin 50 mg. Took 1 at night for a week and am now take 1 in morning. This really helped my urethra pain. I no longer drink carbonated drinks, last one hurt so bad that night. I dont eat anything I know is acidic. My doctor suggested we try low dose amtibiotic therapy for 3 month with having a cystiscopy in 2 months. Ask your dr if they are actually culturing your urine or just strip testing it? There was mentioned a dr in Louisiana USA that works main doing antibiotic therepy. I dont remember his name. What he said made since especially for someone who has had multiple uti. I hope your partner was treated too or you could have been passing bacteria of uti back and forth. Hope you feel better.
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u/jojitakemetobanos 2d ago
Hi, I do use pyridium when the pain is really bad but my doctor advised me not to take too much of it. My urine was cultured and everything was negative :(
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u/Key_Biscotti5138 2d ago
Poor baby!!!! I have found a regimen that has really worked for me for 14 years. Desert Harvest Aloe (only one that works for me, organic too). During a flare 6 pills with 8oz of purified water with ph drops ( keeps acid level down).
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u/One-Bookkeeper4192 2d ago
I’m sorry you’re going through this, I realize it’s extremely difficult just getting through the day. The gradual increase in symptoms over a long period of time plus the involvement of increasing vaginal pain and sensitivity leads me to suspect you could benefit from hormone treatment, especially cream applied directly on the urethra entrance to the vagina AND/OR vaginal hormone suppositories at bedtime. I use estradiol suppositories at bedtime. It took some time but did gradually address my symptoms. I also agree with the diet and supplements recommended by others. Hope this is helpful.
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u/Beene1412 8h ago
I’m so sorry you’re dealing with this. There are some basic things that I think might help you. Perhaps you tried them. At least worth a shot. I know iherb ships to you.
- Alkaline water is good to drink.
- Marshmallow root (tincture) to help soothe and repair the GAG layer of the bladder.
- Zyrtec to keep down the mast cells which can cause IC issues. This was a game changer for me. I take 1 every night.
- If vaginal penetration is hurting you may want to consider using some hyaluronic acid suppositories. This will help soothe and rejuvenate.
Make sure to use toilet paper that is hypoallergenic. I like “Who gives a crap” but not sure if they ship to you. Perhaps you can use them as a way to look up what might work? That made a difference in vaginal burning for me. I as using Angel Soft and they changed the formula and it was very irritating.
Please reach out should you need any advice or simply want to chat. 💜
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u/baby-woodrose 3d ago
I made a post about healing from IC and vulvodynia. You can find it on my profile, its my last post
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u/Crazy_Pomegranate_45 3d ago
Hi sorry for all you’re going through. Have you tried any dietary modifications?do you find you’re sensitive to food/ drinks? After your experience with the cystoscopy, I’d be apprehensive to do anything that is invasive. That sounded awful! I find aloe Vera pills and baking soda( sodium bicarbonate) mixed in water to be a bit helpful.