New diagnosis

Hi all. I've recently been diagnosed with endometriosis and Im looking for some general information.

I have had awful abdominal pains for years, but more recently erratic periods that were very heavy and also very long plus lots of other symptoms of endometriosis. Ive also had bladder and bowel issues. For the last three years I've been told I probably had IBS.

Referral recently to a gyny oncologist due to abnormal ca125 blood test led to ultrasound and CT scan confirming cysts to ovaries and bowel stuck on one side to the tube/ovary. Fast forward and I'm now three weeks post operative of removal of both ovaries/tubes and cysts. During my surgery, my consultant has now confirmed I have endometriosis.

Since then nothing, I've had no histology results back (one cyst was septated) and also no follow up with my consultant. I feel like Ive been told I have this and now abandoned and worse still keep thinking that the removal of my ovaries wasn't necessary as I think from what I have now researched about endometriosis, that this was probably the cause of all my problems. Sorry for the long post!

2 Replies

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  • I too suffer with endo and believe me having your ovaries removed was the best thing. I also have Fimbrial cysts and have tons of adhesions. Unfortunately I'm unable now to have nothing removed (im 47) and suffered since I was 18 with endo. I had ectopic pregnancy at 24 and of course had my tube removed. 2 years later my other tube removed. 6 IVF attempts later and no baby and I'm in complete agony. Lots of lapo's and open surgery to drain/remove these demon cysts. Now I'm 47, still got the demon cysts growing wherever they can, my left ovarie is in my bowel and all all my bits are stuck down like glue. The adhesions have spread and are attacking my organs. I'm on that many tablets and morphine for the pain that I had to give my job up that I'd done for over 20 years and I loved. I'm like a zombie. I've no life. I can't do anything. Luckily I adopted an 8 month old baby boy who is now 12. He's my world. You wonder if you've done the right thing??? YES YES YES. If they operate on me now, I've a 95% chance I'd die on the operating table. No surgeon will touch me. Cysts always come back. You did the right thing. Don't beat yourself up. You did good. I wish u a pain free happy life xxx

  • Hi RexyTony69.

    Thank you for your reply. You've certainly been through a lot. My journey to this point seems to have been less traumatic.

    I'm so glad that you have your little boy, I too managed to have two wonderful children albeit with many years in between them and lots of interventions but as you say, they are what life's all about. 😊

    I think I just feel a bit lost, with everything that has happened. From start of consultation to surgery was just 5 weeks - so it's been a bit of a worlwind!

    I'm hoping as you say that it's all for the best - perhaps as it's early days I will feel better about things as time goes on.

    Can I ask if you are taking HRT.?

    Bee

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