Struggling to manage pain (new network member)


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.

11 Replies

  • 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.

  • I'm sorry to hear you have this as well. How do you manage on a day to day basis?

  • At the minute I don't. Was awake all night last night cos just couldn't get comfy and felt like I needed to pee all the time. I'm hoping for advice

  • 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.

    Have you seen a doctor or nurse?

  • 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. gp this week.

  • I'm on that too - for nerve damage in my arms - but it can cause bladder problems too. So it's definitely worth checking out.

  • I didn't know it could cause bladder problems. Thanks. Any tips on pain management

  • 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.

  • Has anybody with bladder issues been tested for interstitial cystitis???

  • I mentioned that to my GP but she says it hasn't been going on long enough for that yet - although I've had these issues on and off all my life.

  • 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.

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