Fibromyalgia of the Urethra.

[Waterlogged]

I had a polypropylene mesh implant, 16 yrs ago that destroyed my urethra.

The ensuing nerve damage, caused me to loose the power in my legs,

as years passed and conditions worsened,

I was sent to psychiatrist, that found no psychological symptoms, just severe anxiety, living with severe damage to bladder and nerves, especially the chronic UTI infections.

2018 was diagnosed withFibro by a Consultant that specialised in Fibro for 30 years.

then the icing on the cake, as GP said, I have so many complications due to mesh, and nerve damage,

I was diagnosed with terminal cancer.

I had been asking the GP for 18 months to investigate my pain,

this requestwas never granted.

I changed myG P practice,

Now for the last 14 months, I have had constant recurring UTI’s ,

only this week saw a urologist, for an emergency app.

That app was requested in April this year,

Urologist who told me the results of all my investigations,

was caused by NERVE damage, from operations.

Can anyone let me know if there is recognised fibromyalgia of the urethra

due destroyed nerve damage of the urethra,

This is causing constant pain, and UTI’s.

Now on my 14 lot of antibiotics,

my gut and bowel flora is almost on existant,

and I am so nauseated.

was told my cancer is stable, and it is the fall out from antibiotics and long wait for Urologist

who now will introduce hormone treatment, to see if this will help with UTI’s

I’m beginning to not only feel like a Guinea pig but look like one.

Thank you.

Kind regards. Mara.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi, fibromyalgia can aggravate pain that is already occurring in any area of the body, so if you have pain in the urethra from your mesh implant - having fibromyalgia alongside that is likely to intensify the severity of the pain

[1whitestar]

Hi sending my thoughts and a hug sounds like you have bean through so much . You sound like a very strong women. From what I've read fibromyalgia effects that area. X

[Yassytina FMA UK Volunteer]

Sending warm thoughts to you as you really have gone threw the mill, that’s awful too thing your GP never followed up ☹️The condition of Fibro can be hard enough but too have suffered before your diagnosis over the years must have been awful for you , Sorry too read of the nausea as well , 14.medications a day 🙁do they give you any anti sickness ? You sound like a real trooper going threw all this xxx

[Carol5]

So very sorry to hear of your experience. You have had one thing after another and been let down by “the system”. I do hope you can get some relief in some way or another. Wishing you well xx

[Sarahvit]

Hi Waterlogged, I’m so sorry that you have gotten the run around with these doctors. Have you ever been told you have interstitial cystitis? It is inflammation of all that down there and inside down there. I can’t go into the ocean because the salt causes a real bad stinging. You may want to ask the urologist about IC. I never thought much about it in terms of fibromyalgia of the urethra but that describes it well. I use to have frequent UTI’s blood in urine every time they tested my urine. Now that I’m not sexually active the UTI’s have stopped but the irritation is there. When I had a Foley catheter each time it would sting. This I think was because of the IC. Talk to your doctor about IC they can give you medication that numbs the urethra and bladder.

[fmlife]

am no doctor. over life time have picked up these below,

drinking cranberry juice is supposed to help water works, whether does is a trail for yourself to find out

there is the l casei drinks, for the gut, see they have a dairy free version and a immune one. think a gluten free, its a while since studied the packaging

l casei is supposed to add good bacteria

may also like to eat some chesnut mushrooms they high in vit d are you allergic to mushrooms

even a certain branded almond milk contains some added vitamins.

many folks were claiming against the trusts for those mesh implants due to pain ect. was on news a few years ago. may wish to look into.

sadly do not know a food for cancer, chemo or radiation seems to be the route

hope in less pain soon

[KimiJay]

I just want to say I think you are very brave and I hope you have caring people around you who can help you come through all this and that the hormone treatment will radically help. Hugs and hope. xx

[fibo]

Oh my goodness I am so sorry for you 😢 I feel in a terrible state myself but not as bad as you sound, Need a second repair myself but putting it off as long as possible the first didn't work after a long recovery because of fibro with months it gave way, Take care 😀