Endometriosis & Infertility

Hi all, I have only just been diagnosed with stage 4 endometriosis after a 1st laparoscopy this month 05/08. I have been battling infertility for over 3yrs now with a low FSH.

Doctors were meant to remove the endo during surgery but they didn't.

My question is, does anyone have stage 4 endometriosis and still allowed ivf on nhs? My consultant is reluctant to put me forward as he said the cyst on one of my ovaries may increase in size as a result of the fertility drugs.

My life feels like it's shutting down right before my own eyes

9 Replies

  • Awwww bless ya 😢 why didn't they remove it?

    If I were you I would go back to your gp and ask to be sent to an endometriosis centre, from what I have read and heard it seems the best way forward. They are more experienced and equipt to deal with this horrible disease.

    I had a laparascopy in June and the were meant to remove the endo but same as you they didn't. I have managed to locate a recommended centre in Oxford and after a fight I have got an appointment in November x

  • I wish you the best & let me know how it goes pls. I live in south east though & I have a follow up appointment with the consultant next month so I'll ask why the surgeons removed nothing. Do you think my endo centre appointments will hinder my fertility journey? I am asking as there is no cure for endo and the longer I live with it the more it binds my reproductive organs together (I'm sad & confused). Sorry too many questions...

  • I was diagnosed 5yrs ago with stage 4 Endo I'm having my 5th lap nxt wk I'm really shocked they didn't remove anything !!! Demand answers when you go bck I was put forward for IVF after 2 years of trying but didn't need it in the end a miracle happened !!!! Try and stay positive I know its hard living with this vile disease but stress makes it worse hope you get sorted soon xx

  • Thanks a lot Laura, that fills me with much hope that I can still have children with stage 4 endo (miracle baby will be preferred but if I have to go the IVF route so be it).

    I will demand for answers as I remember the surgeon told me "we only have one hour allocation for this surgery" when I asked him how long the process will take before the surgery. I am not pleased with them putting me through operation without taking anything out (and that was my 1st surgery ever).....x

  • Your welcome there is hope they told me I couldn't have children naturally well I proved them all wrong : ) referring back to ur op sounds to me like you were booked in for diagnosis and not removal removal is a 2hr slot sometimes more my 3rd lap took 4hrs hope u get answers really feel for you that you have gone through surgery with no removal your in for a long journey I'm still going through mine but with the right advice and specialists you can get the right treatment you need xx

  • That's weird as my form clearly says "removal of ovarian cyst + adhesion"

    I will query the operation nonetheless - thanks...x

  • Yeah defo do sorry I thought u said nothing was removed xx

  • oh no, I'm sorry I have managed to confuse you. That shows the state of my mind as sometimes I can't even put how I feel into words...

    I mean nothing was removed during the surgery but my pre-op form that I signed said the surgery was for removal of cyst and adhesions.

  • That's even worse that they booked you for the right op but did nothing defo demand answers it might be the gyne wasn't confident enough to do it is he a general gyne or specialist in Endo ? Xx

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