Endometriosis

[DancingPanda]

My ultrasound results came back and they suspect my ovarian cyst is caused by endometriosis so I’m being referred to gynaecology now. It’s all a bit daunting, and I’m really hoping that this hasn’t been the reason why I haven’t conceived. Can anyone on here who has this condition share their experience of diagnosis, what steps were taken to diagnose and the effects on fertility please? Can endometriosis prevent my husband and I being offered IVF on the NHS? I’m struggling to find much information online so thank for any help!

[Jonesy84]

Hi lovely, I also have cysts caused by endometriosis but we had our first round via NHS. We were only entitled to 1 as that’s what our CCG has our area down for so you shouldn’t have a problem going through the NHS.

Mine Endo is classed as mild and I know my cysts have gone bigger and smaller over various scans. With the Endo they have said that’s probably why my egg reserve is low but they still managed to retrieve 9 eggs which I was v,happy with and many ladies on here who also have a low reserve have been successful but your reserve may be if a normal level. Each lady is different so fingers crossed you can start your IVF soon xx

[DancingPanda in reply to Jonesy84]

Thanks for replying! Do you mind if I ask what procedures you had to be diagnosed with endometriosis? I understand it will differ patient to patient, but did you have to have surgery to remove/diagnose prior to starting IVF?

[Jonesy84 in reply to DancingPanda]

I had a laparoscopy to determine the endometriosis. That was 10 years ago whilst I was having a cyst removed they had a look around. When I had my Routine scans done before starting the treatment they found a cyst on both ovaries but due to the size they decided not to operate and continue with IVF. They did think I would be on long protocol but decided to go with short xx

[nuff123]

Hi, I was diagnosed with endometriosis following a laparoscopy and they found a cyst on each ovary, they also did a dye test and said my only route was ivf as I had blocked tubes. I was devastated but was very lucky that my ivf worked first time and we now have our wonderful little boy. Unfortunately as I was over 34 I wasn’t entitled to any free treatment on the NHS at all but it depends on your area as some offer free rounds I had no idea about this.

[DancingPanda in reply to nuff123]

So glad to hear your IVF worked and you have your little boy. I had no idea the criteria for IVF on the NHS was different across the UK, that seems very unfair. I’m in Scotland and I think we’re lucky that it’s blanket across all our county’s. It sounds like most people diagnosed had a laparoscopy, so I guess that’s something I need to be prepared for as a possibility! Thanks for your reply.

[nuff123 in reply to DancingPanda]

Thank you. No worries at all, wishing you the very best of luck on your journey. Yes I was shocked and sad that I didn’t even qualify, even though it was due to a medical condition I had no control over.

[Mifkipi]

Hi, my period has always been heavy and painful but I only really started looking into it until I wanted to get pregnant. I was also referred to gynaecology but was given the option to either to do a laparoscopy or straight to ivf, so I chose the latter. I also did a lap and dye test to confirm one blocked tube.

Anyway, at the fertility clinic, usually they send you home to try things out another few months if things were unexplained, but they were ok to put down endometriosis as the main cause despite I was never properly diagnosed (as you can only confirm through laparoscopy). Where I am I am only allowed 1 cycle but I got my twin girls in my 2nd FET.

Hope that helps and best of luck with your journey x

[DancingPanda in reply to Mifkipi]

Thanks for your reply. That’s really helpful, I wasn’t aware that endometriosis could put you straight to IVF. I’m glad to hear your IVF was successful and you now have your twins! x

[LizzieBW]

Hi DancingPanda,

I'm sorry you're part of our club as it's a rubbish place to be! I am also in Scotland, NHSGGC health board and when I went through the process my gynae consultant told me I'd have to be formally diagnosed by laparoscopy before IVF referral (actually my endo could be seen via transvaginal scan on my ovary but still required formal diagnosis under my health board and removal of said endo tissue prior to IVF treatment so as to lessen the risk endo tissue could impact the outcome of treatment). I had my lap op, with HSG dye test to check patency of fallopian tubes and then referred for IVF with diagnosed endometriosis. I guess this mimics what others have already said to a degree but wanted to share from a Scotland-based perspective xx

[DancingPanda in reply to LizzieBW]

Thanks for your reply that’s really helpful! Sorry to hear you suffer from it too, I’ve suspected I’ve had it for a while (fobbed off by doctors until we had fertility issues accompanied by pain) so I’m glad it’s being recognised. I hope my referral doesn’t take long. We’re already on the waiting list for fertility treatment but I’m hoping with this diagnosis it puts us straight onto the IVF waiting list so it’s positive to hear that’s what happened for you. Good luck on your journey xx

[LizzieBW in reply to DancingPanda]

If it helps at all, according to my previous gynae consultant (who referred us for IVF), if a patient has mild endometriosis then IUI and other fertility treatments are worth exploring but if endo is stage 3/4 then IVF is considered the direct route. Good luck with your journey too lovely 🍍 xx

[DancingPanda in reply to LizzieBW]

Oh I didn’t realise that, thank you! xx