Hello everyone,
Does anyone else have any experience of interstitial cystitis? I've been experiencing pain with peeing and burning/worsening when I drink alcohol for a few months now and just put it down to pelvic floor dysfunction. However since doing some reading on interstitial cystitis, some of my symptoms seem to match up.
How do you know if it is IC and not just pelvic floor dysfunction? Has anyone found anything that's worked for it? Would love to hear from anyone with any experience.
I’ve been suffering this for years , tried everything and nothing works even gynaecologist is baffled , but I’m desperate to find a cure , so if anyone can help , please send a message.
I was diagnosed by rigid cystoscopy following years of UTIs . It was found that my bladder lining was cracked. All a long story, but I have definitely found that a course of bladder instillations has helped. I also have had a course of Mona Lisa Touch. Currently I take prophylactic nitrofurantoin which I hope to stop at some time. Have also started D Mannose which seemed to help when I got symptoms in December.
Hello I was misdiognosed with I/c...I have p/n and turns out a lot of people with p/n have the symptoms of I/c..I find drinking marshmallow root tea three times a day before meals with 2 capsules of slippery elm( you can get the marshmallow root tea on line I use 4tablespoons to 1 qt. of water and let soak over night and strain into a cup the slippery elm also found on line) it truly takes my bladder pain away I also saw a urologist and has a scan done to insure that my bladder wa in good shap I hope this helps
But do you get pain when you drink alcohol? Like a burning in the urethra? It's the only thing that's making me think it's IC.
It does, thank you 🙂
Hey, sorry new to this and have been diagnosed with IC by my GP. I'm sceptical. Can I please ask what p/n is? Thanks
Hello p/n is pundeal neuralgia ...I believe a lot of people are not being properly digonoest with this nerve condition it can mimic I/c you should google it I have learned a lot on this site and the internet again I started to feel better after I took a more natural approach I hope this helps
I was also misdiagnosed with IC. Unbelievable pain felt in my vagina nearly every time I peed. And it would sometimes last for 45 minutes. After avoiding all the foods that trigger IC, I went to see a urogynecologist. She said I did not have iC (which I already suspected). She said my pelvic floor muscle is is spasming and for some reason, urine sets it off. She prescribed cyclobenzaprine (muscle relaxant) 10 mg, 3 times a day. The pain stopped. I have also been on gabapentin for quite a while. I tried to lower the dose since I wasn't having pain any more, but the pain came back (not nearly as bad as before). I'm down to 1800 mg/day and I hope keep it at that dose.
That's good it helped you. Does it get worse when you diink alcohol?
Hi I am Vince and wanted to ask you can if you can take the cyclobezaprine and Gabopentin together? I have been seeing a physical therapist for the pelvic floor. The therapist did 30 minutes of internal massage/pressure on Thursday which I thought was too much. Since then my symptoms have gotten worse with burning and increased urination. I called the therapist and she said perhaps a day or two after the therapy I may have increased symptoms. She said she would not press as hard but it just seems odd. Do you think the Gabopentin and cyclobenzprine will help a bit if taken together?
All I can say is the Gabapentin alone (I was up to 2300 mg/day) didn't work. It was the addition of the cyclobenzaprine that stopped my pain. I have been on the combination for nearly a year. I too tried physical therapy with a specialist in pelvic physio and some days it helped and other days it seemed worse.
It use to..however after about 2 weeks of drinking the marshmallow root and slippery elm it didn't burn any more...coffee was the worst but now I have no problem I hope this helps because I truly believe that people are being misdiognosed all the time...keep me posted
I just had physical therapy on Thursday. The therapist did internal massage/pressure anally and since then my symptoms got worse. I felt that she went too long 3o minutes and pressed too hard. Called her today and she said usually increased symptoms last a day or two and that she would scale back next time. My question to you is would the slippery elm and marshmallow root help be burning and frequent urination. Also health food store has marshmallow root in capsule and not tea....Vince
It helped me yes I get my slippery elm caps on line and the marshmallow. Root tea I also get on line from a site called i herb ...give the rea time to work it also helps digestion and is very good for my bladder pain
I have been suffering with IC for years too but was only diagnosed a few months ago.
So far the following has helped me;
* switch to herbal tea/no caffeine
* take a 1/4 teaspoon of bicarbonate of soda when my pain is bad (usually after dinner as I eat plain food and small portions during the day)
*ice packs on my pelvis
*drinking peppermint tea with most meals
*cutting down on sugary foods (I have a sweet tooth)
I also looked at my vitamin intake and am taking vitamin d, evening primrose oil and a vaginal probiotic.
I am willing to give anything a try that could ease my discomfort so am open to ideas.
It you find anything that works for you, please let me know :).
Desperate! Does anyone know a physio that does trigger point therapy for pelvc floor in the UK? I have pudendal neuralgia, IC, endo, SIJD
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