Endometriosis UK
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Your experience of pain management programmes?

Before you answer, please note that the forum guidelines do not allow names of individual clinics or doctors to be mentioned, although that makes it a bit difficult to discuss this... My question is :Has anyone participated in a pain management programme or therapy on the NHS and did you find it helped you? I saw a pain consultant at a London hospital at the end of January, and he offered to refer me to this type of programme. It was supposed to be a group therapy with CBT (cognitive behavioural therapy) and relaxation techniques. However, I seem to have fallen between the cracks. A few months after this appointment I called to ask how much longer I would have to wait, and was told the waiting list was long, and I just had to be patient. Now, 8 months later, I called again and was told I had NOT been referred to the group therapy I thought I was being referred to! The lady I spoke to did not know why and will have to ask her colleagues, but said it might be because I have pelvic pain and my condition is associated with infertility, it may be too sensitive to discuss in a mixed group session. She also said that the sessions were only meant for muscular-skeletal pain (!) and that I may instead have been put on a waiting list for individual treatment sessions.

I must say that I am extremely disappointed that I was not consulted on this. I find over 8 months to be a very long wait for a pain management session. If asked, I would have opted for a group session, since the waiting list seems much shorter for those. I find it remarkable that a person in chronic pain should be ,,left dangling" like this, not knowing what is happening with my referral for 8 months! Why is pain treated as such a low priority medical issue? I can tell you that my chronic pain interfered with my sleep quality to such an extent that I was starting to suffer from migraines, chronic fatigue, infections, low immunity and a host of other symptoms. Finally, I saw a GP who suggested I try a low dose of amitriptyline before bedtime as well as going on the progesterone only pill. This combination enabled me to get a more restful sleep and got me out of a vicious cycle of pain and fatigue.

I am still waiting to get onto that pain management programme however!

2 Replies

Why wait? Do your own research and you'll find that probably much of what you'll be asked to do during the programme are things you could've done it yourself. Like breathing techniques, mindfulness, listening to your body and acting accordingly... It may not be enough but it will get you started. Enlist your friends or colleagues support to help you keep your daily tasks in check. Some of my friends post on Facebook. You can also keep a diary. Medication is a great quick fix but I guess you're looking for a long term solution. Lifestyle changes usually get you there.

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Thanks for the advice, you are absolutely right about not just waiting for help. I have already taken matters into my own hands like you suggest, by trying (struggling) to exercise, not drink too much coffee, etc. I have recently started yoga again, which helps a lot. My husband supports me in keeping a daily routine that benefits my well-being. But many endometriosis sufferers are less lucky than me and have more pain. I worry for those women, if this is the state of pain management services available. It seems there are much more readily available resources for musculoskeletal pain sufferers than for endo sufferers and I don't think that is fair. I actually found out yesterday from the hospital that I was never referred for pain treatment at all. They literally forgot about me! This despite the pain consultant saying in a letter to my GP that he would refer me. Apparently, since I was not a candidate for group therapy, they forgot to refer me to any kind of pain therapy at all. Now I have been told that they will send me an information leaflet to help me decide which of the pain management therapies I am interested in. Then I will be put on the waiting list to the place where I would be, had they not forgotten about me. Can you believe it!


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