Pain management clinic post excision

[SalC]

Hi All

I hope this finds you all as pain free as poss. As always apologies if you see this message on various groups I'll be posting to a couple for as much help as possible (also sorry for the length). 

I had my third follow up with my specialist, Dr Edi Osagie yesterday following my surgery in December. I had stage 4 DIE endo (rectovaginal, pelvic wall, septum, ligaments, bladder, bowel etc) so had TPE, radical excision of all endo and nodules and separation of adhesions and frozen pelvis. 

I continue to suffer pain (lower back, hips, groin, ovaries (left intensely), pelvis, thighs, lower leg, bottom cheeks, shoulder) plus UTI type symptoms daily and see little improvement (apart from the bowel issues and rectum pain that feels a lot better although still there sometimes) . Before surgery Dr EO had warned me of possible nerve damage as Prostap gave me no relief from pain. I should add I'm not sure yet how periods and cycle type pain will be as only just had my first period post surgery/Prostap and only bled for 30 hours although pain had intensified all week and counting back I was bed bound during ovulation (I expect this for the first few though)

Anyway after several follow ups with him yesterday he confirmed that nerve damage was present in surgery and that after 5 months of waiting it's now time to look at treatment with a pain management clinic for the nerve damage/IC/PFD issues. As many of you know I saw Edi privately thanks to my work paying. My surgery and appts came to 11K so I can no longer see him privately he does have a clinic in St Mary's with a pain management team that offer medical pain relief (he suggested amyltriptamine) along with a package of complimentary therapies (massage, physical therapy ultrasound, heat therapy) which I could go to but it is a 4 hour drive or train journey from London so costly and difficult if in pain.

Finally im getting to my question. Can anyone advise on a good NHS BSGE centre in London ideally offering this package of care? If so can you tell me what they offered you and how you are doing etc? He said i don't need to see a surgeon at the moment but do need a full care package for pain management. I'm not even aware of anyone in the south offering this on NHS so any help is really appreciated. In fact Edi did say a full comprehensive treatment package is not often offered here like in the US. It's such a shame if this is the case that those of us with ongoing issues following excision do not get the treatment we need. 

We also discussed the possibility of adhesions having reformed (particularly my left ovary which is still very painful particularly after activity or exercise) and he said it could be a possibility. How do you deal with adhesions? Is surgery offered for removal of these later down the line or are they left if the endo has all gone (I'm confident Edi has removed all the endo).

Edi said hormone treatment would not help me as being on the pill for 20 years didn't, nor Prostap and won't now that the endo has all gone but he did suggest pregnancy again (!!!! He's said this a few times) however I'm not sure how pregnancy would help with nerve damage/IC/PFD/Adhesions ?!?!? 

Thanks all

SA xxx

[Alaine1]

I can't think of any endo clinic in London offering that. The pain management consultant that works with endo patients aren't actually seen in the endo clinics. You have to go to the pain management outpatient clinic where some offer acupuncture although this is often for back pain etc or simply isn't available.  Referral to this is directly to pain management not to the BSGE endo clinic.  I personally pay out of pocket for women's physio, rehabilitation physio, dietician, acupuncture, reflexology as they do help me with endo, adenomyosis, IC and PFD which many of us suffer from.  I did see a women's physio on the nhs who wasnt great and treatment is usually only 5 sessions before you get discharged and have to be re referred. You also have very limited treatments offered if at all. I had to wait 6 months as the waiting lists for women physio is often very long as we share their services with obs. The quality of care of going to private physios has been brilliant!  Tbh I think with the nhs being so cash strapped many services will end up seeing more complementary treatments such as massage etc being self funded only. It can work out cheaper to get a private cash plan which covers physio although the amount covered depends on who you go with. They also fund pre existing conditions which is a huge bonus!  I would research them and see which ones suit. I've gotten my costs back in 4 months which will be more than I've paid for the monthly fee. I've now used up my physio cover for the year but continue to pay out of pocket as it's worth it to me and I'm being proactive in my care which my consultants are all very pleased with

I hope you get some useful treatment 

[xMMx]

Hi there, I'm sorry to hear of your continuing pain and suffering and sorry I can't help answer your question as I'm awaiting radical surgery to bowel and for stage 4 removal with the same surgeon.

I'm currently on Prostap whilst I await a date for my next surgery. I had a diagnostic lap in Jan and have been on Prostap since then. Have to say my symptoms seem to have worsened and I've still been getting periods so I'm concerned now if this surgery is in fact going to help.

I feel like I'm in good hands and want to trust that they are doing the right think but reading your story puts doubt in my mind.

I really hope you get the answers you need and manage to find someone who can help with the pain management in London.

Good luck x