Hysterectomy Endometriosis: Hi Ladies, I'm... - Endometriosis UK

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Hysterectomy Endometriosis

Linz247 profile image
9 Replies

Hi Ladies,

I'm 36 and have been suffering with endometriosis since I was 16 years old. I have had op after op of laser treatment and finally after fighting for 4 years I have been put on the list for a radical hysterectomy. I have 1 son who is now 8, he's my miracle as I was told I could not have kids. Anyway I'm starting to freak out is there anyone out there who has had a hysterectomy for endometriosis? would love to hear from anyone who can give me some advise.

xxx

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Linz247 profile image
Linz247
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9 Replies

I had a hysterectomy and BSO back in March together with extensive excision of all endometriosis at the same time. It should be an absolute last resort if all other treatments have failed and you have adenomyosis. If you are stage 3/4/severe and have bowel or bladder involvement then you need to make sure you're having the surgery at a bsge centre and not with general gynae.

Linz247 profile image
Linz247 in reply to

Thank you for your reply.

Yes I have tried everything over the last 20 years.

I'm under the endometriosis specialist at the UCLH in London so I am happy that I am in the right hands. I have been fighting for so and i know 100% this is the right thing for me to do. Its just a bit scary now its real.

in reply to Linz247

I had my surgery there - please message me if you have any questions.

Linz247 profile image
Linz247

Did they look after you well? also how long did you stay in hospital for? x

in reply to Linz247

I was in for 2 nights - went in for the surgery on the Friday morning and left late on Sunday afternoon. I was first on the list and went up to theatre just before 9 and woke up in recovery at 2.

The endo team were great but I did have issues with the aftercare as the anaethetist forgot to fit me with a PCA and I was sent up to the ward post op with no pain relief which took far too long for them to sort out. Nurses on the ward were hit and miss but that's the case everywhere. The hyst has been fantastic for me in terms of pain relief but I am struggling a bit with the surgical menopause (I am 39) and am just starting to try and get my health back to a good place. I don't feel 100% recovered yet TBH but it has only been a few months.

Linz247 profile image
Linz247 in reply to

Thank you I appreciate you sharing your experience xx

Stellauk profile image
Stellauk in reply to

Wonder I had the same anaesthetist. She made some racist remark just before put me under. I also end up with blood all over the sheets and very swollen arm for a few weeks. 😡

rachel1969 profile image
rachel1969

Hi ,I had endometriosis at the age of 18 ,after various tests and a previous removal of a cyst on my overy while I was 12 weeks pregnant,I went full term and Matt ,was born weighing a healthy 7lbs ,I was took in to have the adhesions cut ,but due the severity I came out with a total hysterectomy,

That was 25 years ago ,all is good hrt was a god send other than have arthritus I'm doing good .

Stay positive xx

Linz247 profile image
Linz247

Thanks Rachel1969 :) xx

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