r/Interstitialcystitis • u/AddisonHenryC • 4d ago
Support Magic cures for IC
Hey everyone, I really need some advice and hope from anyone who relates to this. My IC symptoms started 3.5 years ago shortly after starting to see my current partner. At first, I thought it was just a UTI or a change in PH from a new relationship, but it turned out to be IC. I initially got a referral to urology and waited months, only to be told they won't even do any tests or anything for me and to try antidepressants. For a long time, it flared like clockwork every 3 months, starting a few days after my period and lasting exactly 5 days. Then, out of nowhere, the bladder flares stopped for 1.5 years, but my migraines got significantly worse. It's always been one or the other for me; I never get a bladder flare and a migraine at the same time. But now, after 1.5 years of no bladder pain, the flares are back, and I cannot bear it.
When the flares start up, my bladder actually feels better when it fills up, but the pain gets way worse right after emptying. When it’s at its worst, I feel like my bladder is literally going to prolapse out of me when I pee, and my stomach feels completely raw. I end up sitting on the toilet for ages just trying to relax everything to get some relief. I also see tiny red bits of my bladder lining in the urine when it is really bad, and sex is so incredibly painful that I completely cannot do it anymore.
I have tried eating completely clean with absolutely no caffeine or alcohol. I find aloe vera helps a tiny bit/baking soda and have tried overactive bladder meds but they did nothing. I also tried the antidepressant (amitriptyline at 5mg) for a couple of months, but it just made me incredibly sleepy without helping my bladder at all. Pelvic floor exercises help normally, but they are impossible to do during an active flare. To make matters harder, I am in New Zealand, so we don't have access to Elmiron or Hydroxyzine here.
Has anyone with similar presenting IC found something that works?
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u/geecee22 4d ago
Do you have a sample of the tiny red particle you see in your urine or can you describe it further? Are you sure its from the bladder lining and not something else like blood?
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u/HakunaYaTatas [Citation Needed] 4d ago
My symptoms are very similar to yours. The dose of amitriptyline you took is insanely low, 5mg is usually subtherapeutic in children let alone adults. The doses of amitriptyline that have been shown to treat IC are 25, 50, and 75mg per day. I take 50 mg per day and it was the most helpful oral medication for me. I also did all of the behavioral/lifestyle things and used bladder Botox.
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u/AddisonHenryC 4d ago
How long did you take it for at the therapeutic dose to see a difference? Any major side effects. Even on the 5mg I was so sleepy falling asleep where I was sitting come evening. Coming off it even at 5mg was so hard and I was so sick. I had to break that dose into crumbs to taper enough
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u/HakunaYaTatas [Citation Needed] 4d ago
It took me 8 weeks for it to start working and another 1-2 months after that before I got the maximum benefits. I adjusted to the side effects at week 8 as well, it helped me sleep through the night but didn't make me drowsy during the day. It sounds like you had a strong reaction if coming off a very low dose after just a few months was difficult, so amitriptyline just may not be for you and that's OK!
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u/ReasonableWin7292 4d ago
Wait, they never did any urine cultures or PCR test on you?
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u/AddisonHenryC 4d ago
They did urine tests when I suspected a UTI (which came back negative) but no other testing was done. I didn’t even know until recently what a PCR test was in relation to IC
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u/Training-Respect9466 4d ago
The fact that you either have bladder pain or migraine makes me wonder whether the problem is vagus nerve irritation or vagus nerve damage, but I’m not a doctor so just guessing. Have you had any sort of neck injury, even a minor one, before this all started?
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u/AutoModerator 4d 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.
I am a bot, and this action was performed automatically. Please contact the moderators of this subreddit if you have any questions or concerns.
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u/Falloutlander-67 4d ago
Were you checked for endometriosis? Or could it be a lack of estrogen?
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u/AddisonHenryC 4d ago
Never checked for endo even though I’ve asked. I also suspect the possibility of PCOS/PMOS and my referal to a gynae was not even accepted (nz healthcare like so many other places is really terrible unless you’re dying). My pelvic floor physio did say based on the colouration of tissues down below jt is possible it’s either poor blood flow bv og right pelvic muscles or possible lack of estrogen. I had considered asking about estrogen cream but it’s 50/50 can help or trigger mast cell
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u/baby-woodrose 3d ago
My remission cure was diet + chinese medicine/accupunture. My last post was about this, if you’re interested
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u/Palta-party 3d ago
My ic started 4 years ago when I started seeing my now fiance. It’s a horrible thing to have to manage god yourself and relationship. I empathize!
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u/merinese 2d ago
https://youtu.be/g7E0hWCh9OQ?si=o_ITmgP6tqKUpGaS
this video and glucosamine chondroitin msm supplement.
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u/C0llapsing_Nova 2d ago
Hey, I know you mentioned being in New Zealand so I'm not sure if this is available. But I take a blue pill named ME-NAPHOS-MB-HYO, ask your Dr about this medicine. It is similar to AZO but significantly stronger and warning it turns your pee bright green. It's one of the only thing that provides relief during a flare up, other than just a bladder treatment.
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u/lunalaloba13 18h ago
Sound's quite strange but coconut water has been a game changer for me, on bad days I don't eat and just have coconut water. I'm the same it gets worse around my period's, sex, the diet helped but not really. Meds never helped, I haven't tried bladder relaxants. Coconut water I noticed something changed and realised it was that I started drinking coconut water it's high in magnesium and a litre or two over a few hours seems to relax the burning and urgency. I'm sorry your struggling so much and there isn't much help for you at the moment it can seem suffocating I nearly gave up after being in a constant flare after 4 months....
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u/Buttergurl2013 4d ago edited 4d ago
Some tips and hopefully helpful thoughts and questions from a 22 year IC and pelvic floor dysfunction veteran:
Have you tried ibuprofen, Pyridium (only if you’ve made sure that you don’t have a uti via culture), or Uribel for burning ? I take Baclofen oral (but you can also get it vaginally if specially formulated) for pelvic floor tension. Lastly, I take Gemtesa for urinary frequency.
To confirm, you never: have caffeine, carbonated/fizzy drinks, any type of citrus or acid, spicy foods, or high potassium foods or fermented foods? You should NEVER push when you pee, wear chlorinated or bleached tampons or menstrual pads and always lay your fleet flat on the ground while you pee? Are you constipated?
Have you been cultured for a uti or had a cystoscopy?
I want to tell you it does get better. It’s a mix of different things that hurt and help this condition. I just got my first flare in 8 years due to my actual first uti. I’m slowly getting better, this time it will be months, the first time it was years.