Pain Clinic : Anybody been referred to a... - Endometriosis UK

Endometriosis UK

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Pain Clinic

EndoQu profile image
EndoQu
ā€¢10 Replies

Anybody been referred to a pain clinic? Got an appointment for January 2023. Is this a normal waiting time? šŸ˜„ TIA ā˜ŗļø

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EndoQu profile image
EndoQu
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Peenie123 profile image
Peenie123

I got referred in September for post hysterectomy pain and got seen last week, so about 7 monthsā€¦.hang in there or see if your GP can push for earlier xx

Debsturbo profile image
Debsturbo in reply to Peenie123

What did they give u? I got told there's nothing other than what I'm already taking.

Peenie123 profile image
Peenie123 in reply to Debsturbo

I was expecting to get psychotherapy as that was the wording in the letter- but the lady I saw had a really lovely approach- she asks me how I feel and how I cope in every day and work life and how the pain affects me/ and as I was talking I was crying with relief that someone had realised what an impact pain has on your mental health too. We talked and she asked questions- Iā€™ve got an advanced physio appt in 4 weeks and maybe also sleep clinic, a follow up appt with the lady in June- this is all whilst I wait for a diagnostic laparoscopy xx

Shuggy11 profile image
Shuggy11

Iā€™ve just been referred and have no idea when I will get an appointment. Does anyone who already attends find it useful?

mollitiam profile image
mollitiam

Iā€™m so sorry you have been given this timeframe. My experience, I had two surgeries in 3 weeks at the beginning of the year. After a couple of months I decided to contact the hospital to let them know I had not received any correspondence from the pain clinic. The consultant forgot to action my referral. I appreciate how busy everyone is but I was gutted as the average wait time for my health board region is 33 weeks. The secretary I spoke to advised to contact my GP as one of the above responses suggest. Sending you best wishes

Washington1 profile image
Washington1

I got referred twice, and tried to follow it up, but I never got seen at all. Fortunately I have a friend who was a Macmillan nurse who had good advice for those in pain. I'll share what she told me in case it will help in the meantime.... I discovered I'd been taking my meds the wrong way. I often used to wait until I was in a moderate amount of pain before taking painkillers, thinking that would be most effective. She explained that by waiting, I was rendering them useless. I learned to take them at the very first sign of pain and this has really helped. It's something to do with how they work with signals to the brain. I have also used a tens machine for years that I would not be without. Whilst they don't get rid of all the pain and there have been times when they did nothing, I would have to say that I have felt a great deal of benefit from them. Again, it's worth putting the tens machine on at the first sign of pain, so they can block the signals to your brain. I use the ova tens machine as it's pretty discreet. I understand they've brought a new one out now though, so don't know first hand what that's like, but there are some good ones to choose from out there. Hope you get some relief soon! x

Washington1 profile image
Washington1 in reply to Washington1

Also, if you are in Wales, specialist endometriosis nurses have now been appointed to every health board in Wales.

Jensenelly profile image
Jensenelly

I had was referred to pain clinic in December 2021 I got an appointment for come through for September 2022! So when I last went to Endo clinic I said I think my pain clinic appointment has the wrong date? Oh no she said thatā€™s normal waiting time!!šŸ˜¬šŸ¤Æ

Mags1b profile image
Mags1b

My grandaughter has been referred since the end of last year, (2021), but as yet has no appointment.

Tillyfloss profile image
Tillyfloss

Hi. The waiting times are horrendous at the moment but my experience with the pain clinic was very positive before the pandemic. They were brilliant and didnā€™t just see the endometriosis they wanted to know exactly how it was impacting on my daily life. They suggested a few changes with the consultant and as already mentioned said I needed to take them medication regularly not just when pain hit as by then itā€™s to late and for me this was a game changer, in the remaining time I waited for surgery it was much more controlled and I didnā€™t end up back in hospital with the pain as I knew I could control it. Xx

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