Has any body been to the Chronic Pain Team? - Endometriosis UK

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Has any body been to the Chronic Pain Team?

katell profile image
7 Replies

Hello

I have been referred to go and see the Chronic Pain Team at the Hospital. I see that its Anaesthetists, Physiotherapists, Physiologists and Occupational Therapists.

I got a letter quite a few weeks ago with a form I have to fill in and it need to be in by Friday this week. Well I don't want to fill it because I don't want to go at all, I have fallen out with mum about it today, saying that I will fall out with everyone and no one will help me then. Gp also wants me to go. She also said it might be worth seeing a Physiologist as apparently they help you cope with the pain. But there is no way. I hear that and think they all think im mental and its in my head.... even when now after 4 years they have finally found out that it is gynaecology problem.

When I was in hospital a couple of months ago when the dr came and said about chronic pain team after he had gone a lady from next bed came to me and said you see physiatrists cos they think its all in your head when u go to them.

So there is just no way I am off. And the letter that came with an address to send it back to and its in the mental part of the hospital.

Has anyone else been to Pain team and what did you get out of it?

Thanks

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katell
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ladybird7 profile image
ladybird7

I had a lap and was diagnosed in Sep 2012... In my 3 month follow up I told gynae consultant that I was still getting pain.... Not as bad as pre lap but bad enough to still need opiates on a virtual daily basis. He said it couldn't be endo as he had treated it... He discharged me and referred me to pain management. I was not very happy but as I had very bad depression at the time I was slightly convinced it might be having an influence.

Even more irritatingly I've discovered on (have just removed name of website due to rules) that many patients who have had their endo treated in a laparoscopy can still experience constant pain, they've done trials. I wanted to get referred to them but my GP says they'll just put me back on the nasty injections which put you in menopause amid they're not at all good for you... I'm on the pill and he says that is best.

At the pain clinic I got given acupuncture at the pain clinic which I love, I'd never had it before so was very nervous but it's such minor pain having needles put in, just like flicking your finger on yourself. They only gave me 10 sessions on NHS but I've carried on with the same lady where she practises at a Chinese clinic locally, I get student rate too because I'm an NHS patient so pay £25 instead of £60 which is just ok (I'm very broke), it really helps me relax even if it doesn't always help the pain for that long, the relaxation is very good for me. I also saw a physiotherapist a few times - they told me about 'pacing' - basically it's about doing the same amount of "exercise" ie 10 mins walking or cleaning or cooking (or less) but same everyday a few times (starting low) even if it's a bad day to get you more used to it very gradually.... Supposed to be that you don't do too much when you're having a good day which then means you have a bad day the next... It didn't work much with me unfortunately... I could spend all day watching TV even if it was a good day doing the little prescribed exercise then have a really bad day the next! So... Then I was also supposed to see a psychologist... never happened which has actually annoyed me because I would like to have some more coping mechanisms / relaxation techniques / just good to vent to someone who is trained to listen!!! I have found hem a very kind supportive team though. They also gave me a tens machine which I can't live without...

I would definitely go... You'll get a lot of support at the very least and they have NEVER said anything about it being in the mind, they always said to me that the pain was real.... We can be angry with gynae consultants for not treating us anymore but the stress will probably make pain worse, that's what I think. Take care xxx

Gemx85x profile image
Gemx85x in reply to ladybird7

I'm so glad you have replied to this as I thinking of asking my to send me because the pain is back after 3wks and i really struggling to deal with it so thank you x

ladybird7 profile image
ladybird7 in reply to Gemx85x

You're very welcome, I hope they give you lots of options, take anything they suggest!! Xx

Gemx85x profile image
Gemx85x in reply to ladybird7

At the moment my gp is thinking hysterectomy but am 28 with no children so it's a big decision x

ladybird7 profile image
ladybird7

I was told no point doing hysterectomy if the menopause drugs didn't work for me... I'm 36, went through 5 years of marriage practically begging my husband to start trying for kids but he always said no... He actually stopped sleeping with me, probably thought I might have secretly stopped taking pill but I was too honest and wouldn't have done that. Actually glad I didn't have kids with him anyway, we're divorced now!!! But it does mean I won't get the chance now... people say that's rubbish, but I feel too old to have kids... It really exhausts me looking after my nieces so I don't think I'd be able to cope. Xxx

Chronic pain teams are multi-disciplined so that they can help you with the correct balance of drugs, exercise and give you strategies to help you cope - both mental strategies and physical ones. Don't be frightened by there being mental health experts there. It doesn't mean they think it is in your head or think you are 'mental' but how a person copes with their pain and problems can be affected by low mood and leaving them feeling unable to manage and pain can definitely cause low mood. Not just because you hurt which is miserable enough in itself but also because hormones affect other hormones which can then cause depression and/or anxiety. It is all linked in together and so why not take all the help that is offered? Seeing mental health experts doesn't mean you are mentally ill and most people don't view mental health issues the same way that they did in the past. I've seen a psychiatrist and had talking therapy as I needed help coping with my career ending and the impact on my life of having several painful health problems. Forgive me, but the feeling I get from your writing is that you feel a bit panicked by this? Please try not to worry, maybe you are suffering with anxiety and that is something that they can help you with. Please believe me - it doesn't mean that you are mentally ill or that they won't believe you have physical symptoms. Give it a go - you won't be forced into trying anything you don't want to. Ladybird7 - I feel for you re the children front but I think yours is a very responsible attitude. Children can exhaust perfectly healthy parents, after all, so it would be tough and if you can't face it, well, you know what is best for you. That doesn't mean that people who are unwell or debilitated by their health can't have children and bring them up well, just that I do think that future children do need to have their needs considered along side our own abilities and desires. Best of luck to all.

ladybird7 profile image
ladybird7 in reply to

Thanks, that was nice

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