Struggling to manage pain (new network member)

Hello

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

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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.

  • 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. Back.to 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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