Where to start after ten years of only pain relief which no longer works and severe endo?

[24endo]

My mum has suffered with endometriosis for over 20 years due to bad experiances with gynacologists and infections with laps she refused any further surgery or hormone therapy. previously her extreme pain relief helped but for the last 5-6 years her pain has became disabling day to day and each moment she is constant pain where does she start attempting to reclaim some control over endo after so long?

[Impatient]

First step is admit she cannot do this by herself. Then book to see her GP and ask for a referal to a gynaecologist - which should be straightforward given she already knows she has endo.

Then discuss with the gynae what steps she does want to know take.

Yes it could mean surgery and probably will do - if for no other reason than to cut back adhesions and tidy up inside after so long. That may be all she needs to really relieve a lot of the pain - but they can also check out for cysts and any damage to other organs too.

Hormone therapy is a waste of time so she doesn't need to ever touch that.

But getting the cause of the pain seen too, will undoubtedly improve her quality of life, She may find relief from pain by trying the endo diet, or having a microwave endometrial ablation to stop her periods or mirena coil which also can stop periods too.

If she is not willing to carry on fighting endo by surgical means - and I know how soul destroying it is to have this constant battle - then really you do have to respect her decisions and do all you can to help her cope as things are.

Try and get her to see her GP - there are plenty of pain killing options - so if one is no longer effective there are others to try too, but also she should ask her GP to refer her to one the accredited endo centres (which were not around 10 years ago)

There is a list on the following web page

bsge.org.uk/ec-BSGE-accredi...

and the nearly accredited ones are on

bsge.org.uk/ec-BSGE-provisi...

She need not be in so much pain and discomfort - but wishing it away won't work. She will have to summon the inner strength to be open to more treatments if she wants any chance of improving things. And with your support too -perhaps she ca be persuaded that enough is enough and it is time to renew the battle. I wish you all the luck to try and coax your mum in to getting to the GP. It probably won't be easy - but not much is with endo.