Little introduction!: Hello all! I just... - Endometriosis UK

Endometriosis UK

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Little introduction!

Smizen83 profile image
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Hello all! I just wanted to introduce myself, as I'm newly diagnosed with Endometriosis, and ovarian cysts. I had a laparoscopy on Monday to get a conclusive picture, and they carried out a cyst and ovary removal.

Anyway- I consider myself incredibly lucky so far, as my first GP appointment was only August, so I've been fortunate to be seen and diagnosed very quickly.

Big decisions to make though, as apparently the endo is all over my pelvic area, and looks like a molten chocolate explosion (surgeons words). He did suggest a removal of the uterus, but as it was only 30 mins before surgery, I declined. I'm only 33, and wanted more time to research and come to terms with the idea!!

Anyhoo- hope to get to know you all better x

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Smizen83
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4 Replies

Hello!! Has an endometrioma cyst ruptured? That is the usual explanation for molten chocolate?

This happened to me when I went in for a lap seven weeks ago. I'd had three cysts and the rupture of one caused so much inflammation and infection that it wasn't safe to proceed with excision of the endo.

Thankfully I was under the care of an endo specialist. It's going to take 4/6 months for everything to recover from the rupture before I can have the rest of the endo excised. Have you checked bsge.org.uk to see if you are being looked after by a specialist and not just a general gynaecologist?

Why did he want to remove your uterus? The only reason would be if adenomyosis had been confirmed? It's worrying that he suggested this before the lap. I had two general gynaecologists try tell me that a hysterectomy cures endo. It doesn't. I am so grateful to the information that I found on the internet otherwise i would not have found an endo specialist and the general gynaecologist could have done a lot of damage.

Smizen83 profile image
Smizen83 in reply to

Hi! I'm not sure to be honest- this has all been such a whirlwind. He thinks something tore or ruptured, causing the 3-4 days of excruciating pain, yet none of the cysts they saw on the scans had disappeared.

I looked, and I'm under a general Gynae where I had the laparoscopy. He didn't really say WHY removal of the uterus would be a good idea- sounds like the endo is all over my pelvic area, so looking into it now, it certainly wouldn't be a long term fix. I may see if I can be referred to a specialist. At 33, I'm not keen to have my uterus taken for no good reason!

in reply to Smizen83

I would not be treated by a general gynaecologist. I saw two and the second tried to tell me that he was a specialist. He was not on the list and therefore had not had the required training. They know very little about endo and think removing your uterus will cure it. Please do lots of reading because a hysterectomy is not a cure. They are living in the dark ages.

If you have a lot of endo then you do need to have it excised. An endo specialist will do this, a general gynaecologist cannot do it. They will get rid of it by other means and it will come back.

It sounds like something had ruptured, the pain is excruciating and you are left feeling bruised and battered. I think mine ruptured almost three months ago and I still don't feel right. I know of someone who wasn't healed after four months when the surgeon tried to operate again. So you have time to find an endo specialist and get referred to someone who can care for you appropriately. I'll pm you as you can't discuss specifics on here!!! X

Smizen83 profile image
Smizen83 in reply to

Thank you so much- I tend to trust "the experts", and just go along with what I'm told, so I'm very glad I actually said "no" this time!!

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