Endometriosis & Infertility: Hi all, I have... - Endometriosis UK

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Endometriosis & Infertility

me08 profile image
me08
9 Replies

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

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Amber83 profile image
Amber83

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

me08 profile image
me08 in reply to Amber83

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...

LauraKl08 profile image
LauraKl08 in reply to me08

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

me08 profile image
me08 in reply to LauraKl08

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

LauraKl08 profile image
LauraKl08 in reply to me08

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

me08 profile image
me08 in reply to LauraKl08

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

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

LauraKl08 profile image
LauraKl08 in reply to me08

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

me08 profile image
me08 in reply to LauraKl08

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.

LauraKl08 profile image
LauraKl08

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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