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Endometriosis UK
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Advice needed about upcoming surgery :(

I was diagnosed with endo about 20yrs ago but am very lucky that in that time i have only had to have 2 laps to remove cysts but back in February I collapsed and was rushed into hospital with what turned out to be a Sepsis infection and i was very ill for several months. I had a scan which revealed 2 endometriomas (8cm + 3cms) so their theory was that one of my cysts had bled out and somehow caused the infection so surgery was scheduled to have them removed along with my left ovary & tube which they felt had been engulfed and rendered useless by the cyst.

While waiting for my surgery my consultant ran several blood tests including a CA125 test and i got a phone call within a few days to tell me my surgery had been cancelled as the test result which should be under 36 came back at 209 so they were very worried, I wasn't overly worried as with the help of Dr Google and the fantastic girls on here i knew it was common for the test to be raised by endo.

Long story short after 2 transvaginal ultrasounds, a CT scan and a MRI I was told nothing untoward showed up other than my cysts but the specialists decided it was better to be safe than sorry and I was to have a full hysterectomy (ovaries/tubes/uterus) to be safe. I was very unhappy about this as i am only 36 and felt my family wasn't finished but i went in last week to discuss the surgery with them anyway and my consultant ran the CA125 again just to see if there had been much change and my result is now down from 209 to 37 (practically normal) so he has now decided to revert back to my original surgery and just remove the 2 cysts, left tube and ovary so I am going in on the 26th June but I would love your advice on a few things.......

If they think my cyst leaking caused my sepsis infection then am I not at risk of a serious infection re-occurring after the surgery as surely they cannot guarantee none of the contents of the cyst will leak into my pelvis again?

Would it be uncommon for me to ask to be on antibiotics before the surgery to help prevent any further infection?

They did mention maybe using a saline wash after the surgery, would this prevent infection?

They were planning on doing my surgery laprascopically to remove the 2 cysts but now they are saying in order to remove the ovary and tube aswell it may need to be a laparotomy instead, is this normal practice?

They have said if any of the items on the list for removal eg cysts, ovary or tube is attached to any other structure by old adhesions then it would have to be left, why is this?

They have said my fertility should be improved for the 3/6 months after the surgery, is this still the case even though I am having my entire left side removed?

Thankyou all in advance for any advice you can offer :) x

2 Replies

Hi Tracyx

My situation is very similar to yours, following a CT scan & MRI scan, i have large cysts on each ovary. I have a high ca125 too! I to was devastated when I got a call from the Dr that they wanted to see me because of my high ca125. I thought the worst when i was placed on an urgent referral at the hospital. Following the scans they found the cysts & the endo. Its all happened really fast & I am having a laporatomy on 19th June. I have lots of questions like you have. They want to remove the cysts, but they told me they could take other things too! They said that they won't know what they're dealing with until they start the op! This bothers me the most, because I wonder what i could be left with after the op!

I wish you well with your op, & i hope you get some answer to your questions.

Love Emma x


Thankyou Emma, I feel I could have written your post myself as I am going in on the 26th and they said all they can guarantee is that I'll have an incision for the camera and after that they can't say what will happen as I was diagnosed with Endo 20yrs ago so what they'll find is anyone's guess.

I have to have a bowl prep and give permission for them to remove what they feel is necessary via laparoscopy or laparotomy whichever surgery they feel is more appropriate after having a quick look with the camera, but they are hoping to remove my 2 endometriomas, left tube & ovary and as much endo as possible but have said their plan may change once they get in there.

I have told them I really want to preserve my fertility even one ovary but they said they can't guarantee that so like you I won't know what I'm left with until I wake up :(.

Good Luck with your surgery, you must come back on afterwards and let me know how things go x


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