Out of options: Hi everyone, A few months... - Endometriosis UK

Endometriosis UK

71,388 members52,410 posts

Out of options

ab24601 profile image
6 Replies

Hi everyone,

A few months ago I saw my endo nurse who said more surgery may be needed (had excision two yrs ago) and she would discuss it with the consultant. I found out today they have decided to wait.

I'm trying to get another appointment as so far I am on two cerelles a day, the pros are they have stopped my periods but the cons are mood swings, weight gain, still suffering with bowel issues, fatigue, pain. And bloating.

The problem is i have already exhausted most options. I can't take the combined pill due to migraines. I had the coil for nearly a year and bled heavily the whole time and ended up begging them to remove it as it was so painful. I also bled through prostap and depo injections.

Not sure what else is an option?

Written by
ab24601 profile image
ab24601
To view profiles and participate in discussions please or .
Read more about...
6 Replies
Tboag profile image
Tboag

When you say endo nurse, does that mean you are under a BSGE centre?

What was their reason for waiting, (for what)

Where was your endo excised from 2 years ago?

X

ab24601 profile image
ab24601 in reply to Tboag

Not sure? I am from Wales and go to Cardiff Hospital, it's the only place that does actual excision for endo here.

My surgery was 6 hours long & I never got to speak to them afterwards, but the nurse on the ward showed me a picture where the dr shaded where the endo was. It was removed from the bladder, fallopian tubes, uterosacral ligaments were removed and there was a large mass that was "just there"

Tboag profile image
Tboag in reply to ab24601

Just looked on the BSGE list, university hospital of Wales, Cardiff. Has a specialist centre, if that's not who you are under I would be referred there, you defo should be seeing a specialist, have a look at a lady called Lindle, her post are very good, not sure if Wales works the same as England, but if it does, your surgery should have been completed by a specialist, at a centre, there is a nhs contract in place stating so, check Lindke out,

Ask her for help she is a great lady, xxx

ab24601 profile image
ab24601

Yes that's who I'm under. Not sure what they will suggest when hormones haven't worked & they're not doing surgery :(

PPSN_JudyB profile image
PPSN_JudyB

It's shame there isn't any provision for people in your situation in Wales ( Cardiff ) but you may be able to get referred to one of the places listed here:

pelvicpain.org.uk/index.php...

If you want to know where the most comprehensive provision services are, feel free to e-mail me at info@pelvicpain.org.uk and/or post on Pelvic Pain Support Network HealthUnlocked message board to find out others experiences of these services.

Good Luck

FTWW_Wales profile image
FTWW_Wales

Hello

If you are not already a member of FTWW - Fair Treatment for the Women of Wales? Please have a look at my profile, you are most welcome to join us, and we will do our best to help!

You may also like...

Out of options? Endo and Mirena

laparoscopy to diagnose and treat endo and a mirena coil fitted. Before having my surgery I was put...

Stage 4 and running out of options

need pain killers for the pain they (sorry tmi) bung me up and as the endo is stuck to my bowel,...

Running out of treatment options, please help me

Contraceptive pill (other types which I can’t remember the name of) Mirena coil x2 I still have...

Running out of Endometriosis treatment options! Are there any more out there?

desperate to find some kind of pain relief - I’ve been in debilitating pain everyday since around...

Given no options but the pill

off work as the pain was just too much and pain relief wasn’t helping me. The only option I was...