Pain clinic information and advice

Slosh

I am posting this for my daughter who knows how much advice I have got here. I hope no one objects as it is not Arthritis related but she is really worried and scared about her pain clinic appointment, and so am I for her.

My daughter suffers from severe endometriosis and ME, and is in the supported group for ESA.
She has her second pain clinic appointment on Thursday, she has followed all the advice given before in terms of changes in her meds and has lost weight, partly due to severe nausea, but her level of chronic pain remains severe.

She is teriffied she will be told there is nothing else they can do. She is keeping a pain diary, and has a letter from her GP.

I am really worried for her but I can't go due to work and her husband has to take the children to school.

Any advice or information on what to expect will be really appreciated.

Thanks.

dreamdaisy

Oh dear, your poor girl, I feel for her: a friend of ours has severe endometriosis and her life grinds to a halt on a regular basis.

Your daughter is to be commended for making all those changes and I can understand the disappointment that her situation has not improved. The trouble is that there is only so much the clinic can offer but they may be able to suggest a change in her pain relief regimen. They may also be able to develop some different coping strategies - when I went to the pain clinic they tried that with me but I was already doing them!

I hope she has a successful appointment. DD

[Deleted User]

Slosh

I am very sorry to hear about your daughter's pain. I understand it is not arthritis pain, but pain is still pain.

The following leaflet:

https://www.arthritiscare.org.uk/what-is-arthritis/resources/217-coping-with-pain

Has been designed with arthritis pain in mind, but many of the tips in it will be relevant to anyone suffering pain, whatever the cause.

I hope all goes well for her at the pain clinic.

Best wishes

Ellen

Slosh

Thank you. It doesn't help her confidence that when things first started getting bad 3 years ago due to her age, she was 21 then, and the fact that in her teens she had self-harmed (an awful time but thankfully in the past), some doctors made judgements about her that she was just after drugs and treated her badly and refused to help her.

If it wasn't for the fact my next appointment is the following day and means time off work for the second time this term I would try and get the day off.

barbara12

Oh slosh I do feel for your daughter...the pain clinic will try everything they can..I have had quite a few now and they arranged my back injections..I was discharged but that was after a few appointments..but now my physio has got me another one next month..she will be scared bliss her, but hopefully they will come with with something that will help..she must get over how bad the pain is..not always easy I know..x

bubbadog

Being someone who had to deal with extreme Endometriosis for 3 months I feel your daughters pain, I have to say that was the hardest thing I had to deal with in my life. I was literally on my knee's when it came to my period, it became groundhog day every time it started. I would start passing golf ball size clots and that would be that carted off to A & E they would try to examine me and the pain became too much while they did that I would scream the hospital down and I would be given Morphine it would ease and I would be taken to a ward where I would be on a morphine pump till my period stopped. It got to a point where the best option was for me to have a full hysterectomy, it wasn't an easy decision because I was 21 years old and had no children. But it was the only decision for me to be out of pain. I hope your daughter's Dr's will find a way for her to be out of pain without having to turn to a hysterectomy.

stickywicket

I've no experience of Pain Clinics, Slosh, so I can't help but I do wish you both some good news in whatever form it might take.

Bubbadog - Way too much info :shock: I was trying to eat my lunch while reading your post Could we have a warning, please, next time? (Mods – maybe a 'throwing up' icon )

Slosh

My daughter has had severe endometriosis for over three years, and I can't remember how many times she's called me from A and E, when she was working she was in about once a month and to make it worse she also has polycystic ovaries. My grandaughter is a miracle baby as Alice had been told she wouldn't be able to have anymore children. It must have been so hard to have had a hysterectomy so young, my daughter would be happy but they won't consider yet saying she's too young!

However, and thanks to you all for your support, the appointment was a good one, some changes in meds and an "urgent" referral to the pain unit at St Thomas's.

The best thing is that they are taking her seriously (at last), and there are more things to try.

mig

I too don't have any experience with her condition but I will be with her in spirit at the clinic (does she know about pocket duties ) special hugs for her and you as you must be worried about her. Mig

dreamdaisy

I'm pleased that her appointment was good and I think it sounds positive. I wish her well. DD

barbara12

Im so pleased slosh, at last she will get the help she needs..I always say you have to shout to be heard..I do wish her well..

Slosh

Can I pass on my daughter's thanks to you all, and mine, for once again showing how wonderful supportive you all are. I was on edge until I got a message from her, lets face it, however old our children get they're still our babies!

My turn tomorrow with the Rheumy....