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 ?!?!?