Not sure where to start. On and off my whole life I have had pelvic pain of various kinds - bladder pain, urethral pain, vaginal pain and general pain in the pelvis. I have flare ups but am in the middle of the worst one ever.
About 3 weeks ago I developed UTI symptoms but two courses of antibiotics later and two clear cultures laters I am only worse. The pain is intermittent, I had a few good days last week but then on Thursday it hit out of the blue. I think I sometimes have some leakage too, but I don't feel it happen. Basically I feel like someone is injecting my bladder through the urethra, and injecting it with boiling water. My GP is referring me to a physio for an assessment prior to a urology consult. This will take months of course.
Ice packs help as do heat packs sometimes, ibuprofen and paracetamol together will help on a good day. I visit the loo a lot and the pain is relieved while i go, but returns moments later.
Last night was awful. I was up all night in agonising pain wondering what can come of this and not wanting to live with it anymore. I'm becoming socially isolated because I can't travel far as the vibrations from the car or train hurt my bladder.
I guess I'm looking for some light at the end of the tunnel about how I can cope with this and find a way forward.
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katypips
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I understand some of what your saying. I have bladder pain and constant infections. I always feel like I need to go but very little comes out and the pain stays even after I've been.
Oh poor you. I was up all night with horrid burning pain. In the end I got up and had a glass of cystitis powder (sodium citrate) which makes the urine less acidic and therefore less irritating on the bladder. I also put an icepack between my legs, hot water bottle on my belly and laid on my back with my knees elevated.
I was given amitriptyline by the gp as it was apparently due to diabetic nerve damage. This helped at first but this latest flare up is worst ever. Back.to gp this week.
I wish I did - the only tips I have are above about trying to relax the pelvis as much as possible. Hopefully there are people further down the path there who have more ideas.
Sorry for delay I only just joined I had interstitial cystitis and ended up with surgery cytoplasty and have not looked back and this was 16 years ago , mu uro did givem Elmiron at the time andthat was good but still had to have surgery to be free from IC
I can identify with some of what you say, particularly the UTI symptoms with clear cultures. This is how my pain started. Initially I was put on medication for overactive bladder and after about 6 months these symptoms improved. I was left with pain in the vagina area, which later spread to my anal area. I was told that the pain was definitely to do with the pudendal nerve, but the doctors were not able to help all that much. I take gabapentin, which helps somewhat, and I see a specialist pelvic pain physiotherapist, which has helped a lot, though progress is very slow. A lot of my pain apparently stemmed from very tight pelvic muscles, which were pressing on the nerve. I have made significant improvement and no longer get severe flare ups. Also I try to meditate for 10 mins a day, in order to calm the central nervous system, as anxiety can exacerbate pain. I can remember crying with the pain night after night, but this now seems like a distant memory. I do hope that you manage to find some light at the end of the tunnel.
Hi I know it’s been a year how are things for you now
I have the same problems as you right now I’m in agony
The pain is unbearable with the UTI
That did not go with one set of antibiotics it worsened now I’m on another course I have had a full hysterectomy and suffer with fibromyalgia and gastritis coxcydinia they say that I have vulvadynia but I’d ont have sex
I’m so fed up
I was doing coffee enemas but had to stop due to the UTI
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