Pain clinic?: I have just been diagnosed... - Endometriosis UK

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Pain clinic?

Dangermouse381 profile image
6 Replies

I have just been diagnosed with Rv endo and chocolate cysts after over 20yrs of fighting nhs.

I felt the only way i was going to get anywhere was if i went to a private consultant.

Who does a referal to a pain clinic have to come from?

All i have been recomended for pain relief, is in supository form. My consultant firstly reccomended paracetomol and ibroprofen (to my astonishment) when i had a telephone consultation with her. For anyone who is in full swing pain of endo knows, there isn't any way in the world a few paracetomol is going to make any difference!

Prehaps as i have surgery on 28th aug she didn't feel it necessary?

Should i visit my GP and ask for a referral? Are pain clinics also at bsge centres? Am i to assume i am going to be cured after my op?!

Thanks

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Dangermouse381
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6 Replies
Fabbird profile image
Fabbird

Hi, your GP can refer to a pain clinic. I haven't tried this myself. I wonder how much experience they are likely to have of endo?

Keke123 profile image
Keke123

I went to a pain clinic and it was more of a mental test as they were saying I was making it up, came back super defeated and like I was. Even got asked if I was abused as a child as I was making up that I had painful sex 😥

Dangermouse381 profile image
Dangermouse381

I just assumed it would be part and parcel. How stupid was i to think ot would be straight forward!

I was sent for councilling for i infertility to a fricken sex therepist! Go figure nhs, so sick of them

Dangermouse381 profile image
Dangermouse381

Is there not pain centres specifically for endo?

My endo bsge centre has pain specialists as part of their team. I have to be honest, I did really struggle to get adequate pain relief, even when I was going to A&E with pain. In the end I found a combination of co-codamol, diclofenac suppositories and mefenamic acid took the edge off enough that I could manage the pain at home. I was also on hormone treatments at the time - without these I needed IV morphine. Your GP should be able to prescribe all of these (you can also ask for anti-sickness, ondasetron). TBH your first stop is probably your GP or practice nurse assuming there is a decent one you can talk to. I only see one nurse at our surgery now. I have no confidence in the rest of them.

I am nearly 5 months post op now and have found my surgery to have been helpful, pain wise. I also had a large RV nodule and chocolate cysts but I had end of the road surgery, really, as I had a hysterectomy with removal of ovaries plus extensive excision of all the endo. I haven't needed painkillers in about 3 months.

Dangermouse381 profile image
Dangermouse381 in reply to

Thanks for the info. As im due for it (hopefully this time) to be removed completely I think i will see how i am after the op.

As i went private to get my diagnoses, (as nhs, dispite having a lap, never diagnosed me on over 20yr) i don't think a pain clniic is part of the package.

If im still having pain once ive recovered from my op then i am going to have to go back to my gp.

Thanks all

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