Back in hospital -physically & emotionally drained. Surgery or persevere with injections?

[Hencharl99]

So I’m writing this post from my hospital bed feeling like I’ve reached breaking point.

It’s my 3rd time in hospital in 3 weeks due to the pain from severe endometriosis & chocolate cyst. Started hormone injections & HRT 3 weeks ago

Each time they’ve tried different pain relief which works temporarily then it comes back with a vengeance.

Naproxen worked for 3 days

Voltarol worked for 4 days

The latest concoction is Tramadol, buscapan, codeine, paracetamol & ibuprofen - I was pain free overnight & they were about to discharge me when I got an unbearable flare up (lasted 5 hours) I was literally curled in a ball, whimpering, biting my knuckles, & no meds touched it not even morphine

My consultant is reluctant to do surgery as it would be major - it’s plastered over my bowel as well as other organs BUT even he agreed today that we need to look into it but said there was no chance of the surgery until January

There’s no way I can cope with this pain for 3 moths - is there any way of having emergency surgery? If I had the money I’d go private

I feel like they’ll send me home tomorrow with new pills & expect me to ride it out but the pain is off the scale - worse than labour as there is no end to it or gas & air or epidural to ease it

Totally at the end of my tether - would do anything to take the pain away

[Christin_a]

Hello

I'm sorry to hear that your struggling so much with the pain.

As your endometriosis is on your bowel you MUST ensure that you are under the care of an endometriosis centre. You can Google bsge centres and find your local one, only the people listed here should do your surgery as you will require a multidisciplinary team, so gynecologist, colorectal etc. As your surgeon is reluctant to do the surgery it suggests that they are not qualified to do this level of surgery. Either your gp or your specialist should be able to refer you.

The endometriosis centers will also have pain management specialist who can help as well.

Unfortunately there no way of having emergency surgery as they only do it for things like appendicitis where its sudden onset and needs to be dealt with before it reptures. Also due to you needing multiple skilled surgeons if you somehow managed to get one it likely would only be with one gynecologist and not the rest of the team.

[Hencharl99 in reply to Christin_a]

Thank you.

I’ve just spoken to a doctor who explained what you just said I.e has to be planned well in advance with a specialist bowel surgeon as it is such a risky op.

I actually feel fine this morning but in between flare ups I can manage.

I’m just hoping these new meds settle things down.

[Christin_a in reply to Hencharl99]

That's good that they've explained it too. Are you being seen an endometriosis centre that's listed on the bsge website? It's a requirement that you are if your in the UK, not the A&E trips but gynecologist appointments and surgery.

Yes hopefully your now on the right concoction of meds for you. It's annoying that there isn't another way to check whatll work other than trial and error.