Failed surgery and no answers: After years... - Endometriosis UK

Endometriosis UK

72,875 members53,249 posts

Failed surgery and no answers

Sarahdione profile image
6 Replies

After years of problems with endometriosis, I collapsed in July 17 and taken to hospital. It was decided that my right ovary needed removing as there was a large cyst and my right tube to also be removed as that was infected.

My ovary couldnt be removed as it's stuck to my pelvis. The cyst could only be drained. Only partial removal if the infected tube was taken.

On the left side, the plan was to blast the endometriosis from my left ovary but he couldn't get near it. My womb couldn't be helped either as it's deeply fused to my bowel. They couldn't even fit the merina coil in as the endometriosis has spread so much.

I have been sent home to recover as it wasn't keyhole and I'm back in 4 weeks. I feel totally hopeless and not a clue to what can now be done to help. I'm in daily pain. Any advice would be great

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

Was this at a bsge accredited centre? If not you need to be referred as you have bowel involvement. The list is here:

bsge.org.uk/centre/

They are almost all NHS and either your consultant or your GP can refer you (though it's best to go armed with all the info as not all GP's know about them and not all gynaes are keen to refer even though they should). They can deal with endo that general gynaes aren't skilled enough to treat. x.

Sarahdione profile image
Sarahdione in reply to

I will look into that. I was just referred from the gynaecologist from my hospital to have the surgery done. I haven't seen anyone that specialises in endometriosis. I didn't even know there were centres for this. In my 20s there was very little help and now in my 40s, I don't know where to start or who to see. Your advice is really appreciated xx

Starry profile image
Starry

With Endo that severe you definitely need to be treated at a BSGE endo centre. XX They have surgeons with advanced endo excision skills training and who work in a multi disciplinary team.

Either your GP or surgeon can refer you. This is the NHS service specification explaining what they do and the treatment pathway

england.nhs.uk/commissionin...

Sarahdione profile image
Sarahdione

Thank you so much for that xx

girli1111 profile image
girli1111

I can only echo what the others say about a specialist referral. I assumed all gynaes knew their stuff about endo but learnt to my cost that they dont always. My second op under a specialist was a world apart, my first surgery left me frightened and in crazy pain. Get some further advice

Sarahdione profile image
Sarahdione in reply togirli1111

Thank you. It's so nice to hear from people that really understand xx

Not what you're looking for?

You may also like...

Just had lap and dye test.

Hello, I'm 27 I was diagnosed with poi at age 25. Three failed ivfs. Yesterday I had a laparoscopy...
Heji33 profile image

Finally have some answers!

Had my lap yesterday and I finally got the answers I've been looking for for so long. I've got...
Katiefrog11 profile image

After one ovary removed help urgently needed please

hello ladies. I've not had endo diagnosed but ik reasonable sure that I have it. Little history...
ElmoFluff profile image

Endo and pregnancy

Hi. In 2010 I had my left ovary and tube removed due to endometriosis. Few days ago I've found out...
Neeks profile image

I'm new to all of this and it scares the life out of me! Advice welcomed x

Had a lap on the 18th Feb originally to remove my left tube and ovary as the scans showed a large...
kellykeloggs profile image

Moderation team

See all

Top community tags

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.