BSGE Centre progress: I've had a bit of a... - Endometriosis UK

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BSGE Centre progress

PaulaSs profile image
8 Replies

I've had a bit of a result today with my BSGE centre referral. My appointment was scheduled for August but they rang at 7.30 this morning offering me a cancellation!

It was slightly unnerving when the radiologist said 'oh you poor thing', and at the end of the examination said she needed to consult her boss! Turns out I have severe endo, endrometriomas, adhesions, possible addnomyosis, obliterated PoD, and a large nodule on my bowel. The consultant said it's likely I'll need two stage surgery and possible hysterectomy & ovary removal. All a bit overwhelming but hopefully means I can look forward to being pain free eventually!

I'm so pleased I pushed for a referral to a specialist centre, everyone was so lovely and seemed to know their stuff! It feels like I'm on the right path to finally getting my issues sorted.

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PaulaSs profile image
PaulaSs
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JeanOsborne profile image
JeanOsborne

Hi can I ask how they know the extent of the disease?

PaulaSs profile image
PaulaSs in reply to JeanOsborne

They did a really thorough scan and picked it all up from there. It was because the endo was so extensive that they've said it was severe. I have 4 endometriomas, and quite a few nodules on bowel, sacro-uterine ligament, recto-sigmoid colon. I've had a few scans before which only showed up one cyst and that my ovaries were stuck to my womb. Apparently the radiologists at the BSGE centre have lots of expertise in spotting endo with the scan. They looked at everything, even checked my kidneys.

JeanOsborne profile image
JeanOsborne in reply to PaulaSs

Hi Hun , yeah when you get a good , well experienced sonographer it makes all the difference.

I had a TAH, BSO and excision in March. I had an 11cm endometrioma on left ovary , right one was badly damaged , both tubes were blocked, bowel and uteras were badly stuck to uterus.

So I know what you're going through. If you have any questions or want a chat just let me know. Take care sweetie.

PaulaSs profile image
PaulaSs in reply to JeanOsborne

Thanks very much Jean. I hope that you're recovering well from your surgery and it's improved your symptoms. X

JeanOsborne profile image
JeanOsborne in reply to PaulaSs

I'm doing ok , back to work on Monday,so we'll see how that goes. Did they give any idea on timescale?

PaulaSs profile image
PaulaSs in reply to JeanOsborne

Fingers crossed that going back to work is ok. It's a huge op to have so make sure to take it easy! They've said 4 to 6 months for the first stage surgery. Hopefully it will be sooner rather than later!

Minnie1128 profile image
Minnie1128 in reply to PaulaSs

I go to the same centre and was there last week picked up similar amount of Endo as you and now waiting for op date - shame that the wait is a few months. Glad your appointment was moved forward.

PaulaSs profile image
PaulaSs in reply to Minnie1128

They all seem really good there which is really reassuring. It is a shame it's such a long wait, I'm just so pleased I got the cancellation, otherwise I wouldn't be looking at surgery till the end of the year at the earliest. Good luck with your treatment, hope you get your date through soon! X

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