Endometriosis UK
34,136 members30,522 posts

Out of options

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?

6 Replies
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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

Reply

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"

Reply

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

Reply

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

Reply

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

Reply

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!

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