Endometriosis UK
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Pain clinic?

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

6 Replies
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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?

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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 😥

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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

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Is there not pain centres specifically for endo?

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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.

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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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