My endo story so far : Only found out this... - Endometriosis UK

Endometriosis UK
48,846 members40,706 posts

My endo story so far


Only found out this April I had it but 1 year before i started having terrible pain went for scan showed cysts on both my ovaries things were getting worse and worse to point I was having bloods done every week and internal scans but the gyne kept saying nothing wrong anyway fast forward 7 months I was due for a laparoscopy but the anethasist picked up that my white blood cell count constantly rising for 7 months yet no one picked up on it so my surgery was put on hold then the gyne wrote to my gp said she found it highly un likely i have endometriosis and my pain was related to my mental health well anyway a week after this letter (March this year) I was rushed into hospital so I'll had an emergency ct scan which they found a mass on my right side of pelvis and my kidneys were blocked so had to have emergency surgery on my kidneys to have stents put in both to allow them to open and the mass was an abscess which had been spreading for months un detected even though it was showing signs in my blood tests and it gave me sepsis I had to have open abdomen surgery to clear the most part of abscess it was then I was diagnosed with stage 4 endo And a frozen pelvis fast forward 3 months my new gyne who has been looking after me since the last one messed up has told me in the 30 years as a gyneocoligist he has never seen a pelvis so infected or damaged as mine and said he's seen some really bad ones but I'm the worst he's ever seen which is quite scary because of the damage the sepsis caused and the endo I have to have a full hysterectomy and large part of my bowl removed and I have a 60% chance of ending up with a colospeny bag

I just want this nightmare to be over I know I am going to go through early menopause and I have a very strong chance of ending up with a colospeny bag but I guess I'll have to deal with that as it happens

My surgery date is 22/8/2018

Big hugs to all my endo sisters stay strong 💞

2 Replies

You're so strong!

in reply to Willow16

Thank u xxx

You may also like...