Struggling to manage pain (new network member)

[katypips]

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.

[Lea80]

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.

[katypips in reply to Lea80]

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

[Lea80 in reply to katypips]

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

[katypips in reply to Lea80]

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?

[Lea80 in reply to katypips]

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.

[katypips in reply to Lea80]

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.

[Lea80 in reply to katypips]

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

[katypips in reply to Lea80]

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.

[Lexi1221 in reply to katypips]

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

[katypips in reply to Lexi1221]

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.

[Xindy in reply to Lexi1221]

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

[Joolibee]

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.

[Serenity61]

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

Although it helped in different ways

Have a good day x

[costagran]

my urologist gave me tolterodine which is a muscle relaxant.

it works well to relieve all pain but after about 1 year i realised i was putting weight on.

i think its quite pricey so if you,re on nat health you may have to fight for it.

by the way you have to take full dose as its 24 hr release so no cutting up to be economical if you have to pay.

[Kathcat64]

How are you doing now?