nearly 5 years now, still none the wiser..

[rubine7521]

So its been nearly 5 years since i had pain start on my right side below ribs, since then pain has increased and expanded ( now includes whole pelvis, low back, still right side, now goes up both sides of ribs, left leg numb when walking, pain down front of both thighs, shoulders and wrists, burning in groin, vulvodynia, pain after eating, horrific bloating..) in this time i have had xrays, ct scan, numerous ultrasounds, an mri on my low spine (after falling down the stairs 3 times) laparoscopy to check for endo (none seen and no biopsys taken, suggested adenomyosis, then discharged)

Been under pain clinic now for about 1.5 years seen a consultant once, then nothing for a year! Had to call them make sure i hadnt been discharged. Under gynae as i have had period issues since starting them, had polyp removed, then told nothing wrong but they started me on zolodex (godsend!) for 1 year which has helped with the periods and flare ups they cause, but stopping this in December.

I am struggling to explain how im feeling to either doctor as i feel they dont listen to me and just hear what they want to (as proven by a recent clinic letter from the pain nurse)

I work within the hospital i am a patient at so i find it even harder to talk to the doctors!

Made to feel like im nuts or putting it on or just plain ignored!

My physio suggested it might be fibromyalgia so I said this to the nurse who asked if i had been diagnosed with it, no love thats why i asked you!

Im on 150mg of pregabalin twice a day, it helps but not a lot.

Im doing everything they tell me to do, yoga, meditation, breathing, walking, tens machine but honestly there is only so much i can do!

Im glad there is nothing glaringly wrong, so they tell me but i just feel abandoned by the NHS that I take pride in working for.

Finally seeing the pain consultant again in Dec but no idea what to say so any ideas on how to approach the situation greatly appreciated x

Sorry about the long post but its getting to me a bit now x

[bantam12]

One very nice Dr said to me once “ sometimes we just don’t know what’s wrong” and sadly that’s true. I’ve had unexplained pelvic/back/leg pain for years, had all the tests numerous times and although I’ve got some niggling issues they aren’t the cause.

I have been seeing an excellent Gynae for over 5 years and she’s doing her best to help, I had a hysterectomy this year in the hope it would reduce the problems and it has but not totally. I’ve seen a pelvic floor physio and now started Pilates with a physio instructor, not sure if it’s helping as I’m currently very painful after last weeks class 🤦🏻‍♀️

None of that helps you but it’s a very common problem so you are not alone, I wish there was an answer.

[rubine7521 in reply to bantam12]

thank you for taking the time to reply, It does kinda help to know we fight on together xx

[AKatieD]

Re the fibro idea, have you had your thyroid tested as they are often linked? If so suggest you get a print of the results and post on Thyroid uk group of Healthunlocked Doctors often say results fine but they aren't really and have not been properly tested sometimes.

[Peanutbutterplease]

If you're had all these tests and their is nothing "major wrong . Maybe it is down to stress and anxiety with you trying to find out what it is .

Could it be anything to do with you're diet the bloating? You're be surprised with certain foods can make you feel in such a way you might have allergies or sensitive to certain foods .

Also regarding speaking to doctors where you work etc if I was you just lay all you're cards on the table tell them how you feel how it's impacting you're life and how you feel no one is listening. .

[IPNH]

are any lab values off? Any hernia? I assume they would have told you if so by now

cystitis or kidney stones or issues?

mayoclinic.org/diseases-con...

[Booch]

Have you been tested for PMR? CRP and ESR tests for inflammation. Of all the doctors, one should have checked for that. It is a crime they did not. Get new doctors.

[ExCarer]

It might help if you keep a detailed diary for 7 days before you go to the pain clinic. Write down the time the pain or discomfort start. Explain what it feels like, how long it lasts. How long it was after you had something to eat or drink.Give it to them to read and keep but keep a copy for yourself. I had diverticular disease with severe spasms diagnosed 30 yrs ago which I can now control. Yours doesn't sound quite like that. Explain if any part of you is tender or painful when pressed. Good luck