Pain Management Service: Has anyone here... - Endometriosis UK

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Pain Management Service

Jess96 profile image
7 Replies

Has anyone here had any experience with the pain management service?

I asked my GP to refer me to them (upon suggestion from the endo specialist) I've just gotten a letter through the post, telling me to watch a video detailing what they can offer, then I have to opt in or opt out. I watched the video, and I'm not really convinced they will be much use.

If anyone can share their experience, I would be interested to hear if it helped or not.

Thanks

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Jess96 profile image
Jess96
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7 Replies

I didn't have much luck the first time with pain management but the second time I said if they didn't give me something stronger I'd end up back in hospital every time I flared up.

Thankfully it was a much nicer new consultant and he agreed and was really

lovely.

I'd say it's definitely worth going just ensure you're firm with them and can't be expected to suffer in such pain which is secondary to a disease, and not primary chronic pain.

they may just show the video to all GP referral patients because they likely get a lot of referrals for people with primary chronic pain with no known cause.

Once the pain consultant sees you have a diagnosis and are genuine they should offer you something to help.

If that doesn't work write to your MP, l've had to do this in the past too.

Best wishes to you ❤️

Jess96 profile image
Jess96 in reply to

Thanks for your reply. So they prescribed you pain medication? Did they have anything to do with exercise, diets, sleep schedule, mindfulness, etc? That's basically what the video was talking about, which I manage my own diet, sleep, etc.

in reply toJess96

I was prescribed medication both times, the first time was pregabalin which didn’t help so I came off it and went into my second appointment much more assertive and explained just how debilitating the pain is (I’d recommend doing this during your first appointment. My consultant then said “you have a serious and painful disease and I can therefore prescribe you Oxynorm for flare ups and breakthrough pain”….now I don’t know how I’d cope with flare ups without it, especially the last one going on for over two weeks.

I believe as long as your pain is secondary to a disease they will definitely prescribe you something. 😊

in reply toJess96

I vaguely remember something being mentioned in first appointment about exercise and sleep…to which I said I can’t exercise I’m in too much pain and I rarely sleep well due to pain as well.

I still feel guilty having to take the stronger medication but have to remind myself how many years I suffered for with no help what so ever and that eases my guilt.

Cocoacupid profile image
Cocoacupid

I’ve been diagnosed with fibromyalgia along side severe endo the pain clinic dr works along side my consultant endo specialist and all the other surgeons and endo nurse team so am on amitriptiline and naproxen as I can’t tolerate drugs like codiene based and or stronger nerve med s like gabepentin and pregabiline as I was just spaced out and kept falling over .

KezMurr profile image
KezMurr

I got referred to a pain management clinic before I was diagnosed with endo and personally I found it rubbish. I had 1 appointment and the consultants were lovely but they were confused as to why I was referred there because most of my pain was pain during sex and not pain all the time. They said they typically treat people with pain disorders like fibromyalgia. Hopefully you have better luck! Xx

asread profile image
asread

Hi

I was under pain management about five years ago for something different and have just been sent again after my adenoymiosis diagnosis - also got sent the video.

It is likely a long wait for an appointment but I would just go to the appointment anyway and take what they offer and see if it helps - if you don’t attend or cancel it will be hard for you to be sent again.

When I went they did some physio, they offered some yoga for pain classes, I also had hydro therapy, they discussed pain medication and then I was seen by a pelvic health physio who also did acupuncture. They also put me on a pain management programme about lifestyle etc - not all of it helped but it helped identify some aspects of my pain and also the joining up of Gyne and pain specific department can be helpful as they approach it from a different perspective.

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