Severe endo

Hi All

Im new here. Just had my 2nd lap last fri for a 2nd chocolate cyst...not sure how to feel.confused!This time i was advised that the endo has spread to my left ovary and now classed as severe. Im due another consult in 4 weeks as i may need further surgery with specialists in oxford to remove now some endo nodules. Just feeling let down by my body..been trying for children for nearly 4 years and have been in good health..just dont understand it all. It hurts even turning 34! Ive turned here because i feel like i have no where to turn as i heal from op..

7 Replies

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  • Hi there,

    I have been classed with severe endometriosis too and had open surgery to remove my left Fallopian tube and a large cyst. I know how you must be feeling... it's such a cruel disease. My op was last Monday and everything feels very raw still, I was only diagnosed in January this year after 6 years of going back and forth to the GP who basically just told me to I have period pains and to get on with it!

    I hope you are recovering well, in my second week after the surgery now and getting stronger each day. You will start to feel better each day, it's a lot to get your head around xx

  • Hi...

    Thank you for the reply x

    Ive also been back and forth to the gp.its been a frustrating experience even finally being diagnosed and trying to get pregnant. I feel like this round of cyst removal was better because i knew what was to be experienced being my 2nd op..just time i was at risk losing my ovary.luckily they managed to save but i may need further specialist surgery due to having endo nodules.cant help but feel like 1 thing after another...

    Wishing you a speedy recovary xx

  • Hello, just wanted to ask how large your cyst was? I'm having my 7th lap in 3 weeks as I have a 6cm x 6cm cyst on right ovary and expecting them to take my ovary out so just wondered how large yours was?

    MissyS - I'm also so frustrated it seems every consultant has a different view on this disease and it's SO confusing!! x

  • Hi Lula,

    It was 10cm and they drained 500ml of fluid from it...pretty gross. They left 'the shell' of my ovary but removed my Fallopian tube as it was completely twisted up. Apparently the ovary may regenerate itself so my surgeon left it in there.

    Hope your surgery goes well x

  • Oh wow I didn't know you could keep the ovary and take out the Fallopian tube. And 10cm is very large .. did you get a lot of pain from it? I'm getting so much pain :(

    Thank you I hope all goes well with your too x

  • Yes I was in a lot of pain. The cyst was leaking and my Fallopian tube was massively distorted and swollen. I had to go to A&E to get morphine injections to calm the pain in the run up to my surgery (I was trying to hold on until my operating date) Yes they can remove the Fallopian tube but keep the ovary (your ovary is attached on a ligament and has its own blood supply apparently) however you need your Fallopian tube to transport your eggs. IVF is now the best option for me because of my tube being removed but at least I can use my own eggs. I have a double uterus also (found this out on Monday!) so apparently I should not try and conceive naturally as I am even more likely to miscarry or have a rupture if I try to get pregnant.

  • Oh that's really interesting thank you for that I had no idea the ovary could function without the Fallopian tube!

    Yes I had to go to A&E I was given liquid morphine and a morphine patch before I went to A&E and that didn't work for the pain, I got an emergency gynae appointment and that's when that found the cyst! Crazy this disease isn't it.

    Oh I hope you get success with the ivf do keep us posted x

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