Endometriosis and Fertility

[Lovelife26]

Hi guys hoping to get some advice/support

I am 34 years old. I was diagnosed with Endometriosis stage 4 in 2021 and had surgery at this point. I don’t have adenomyosis but the endo is extensive.

We tried to conceive naturally for 6 months after surgery which didn’t work. We then had our first round of IVF where we were unsuccessful. I managed to get 1 good quality embryo that was transferred but pregnancy was negative.

The fertility clinic said due to the endo and having a low ovarian reserve we had a very small chance of producing our own good quality eggs. The advice was to use donor eggs or to repeat the ivf cycles with the same high doses of stimulating meds.

I wasn’t ready to give up yet. I’m currently in Greece having my 2nd round of IVF cycle. The prices and the level of care you get here is amazing compared to the UK. However I have found out my severe endometriosis has come back whilst doing my ultrasound scans here in Greece. I now have kissing ovaries (2 large cysts) and unfortunately due to my endo I only have 1 egg ready to collect in 2 days. I can see where this is heading already.

I am devastated. Is it wise to have surgery again? But I’m worried it will make my fertility and ovarian reserve worse? Should I give up and start considering donor eggs? If anyone has been on a similar journey to me or has any advice I would be very grateful.

Thanks,

Sara

[Skittles11]

Hey I don't feel equipped to answer the question but just wanted to let you know, in case you don't know, there is a group on here called Fertility Network and its full of ladies going through IVF. If you're not a member you might want to join and ask on there too as there are quite a few ladies who have endometriosis and going through fertility treatment. Xx

[Lovelife26 in reply to Skittles11]

Thank you for the advice x

[MD54999]

Hi Sara, I'm on a similar journey to you, but at a different stage. Really sorry to hear that the endo came back - that is really frustrating. I've got severe endometriosis (cysts on both ovaries and severe adhesions) and have gone through two rounds of IVF - first round none of my 4 eggs fertilised and second round I had two embryos frozen, average quality and none resulted in pregnancy. I'm 35. I'm getting a laparoscopy next month because my clinic have said there is no point in doing more IVF without surgery due to the extent of the endometriosis. Surgery has the risk of impacting my ovarian reserve because of where the cysts are, and the cysts may come back. I was very hesitant about surgery but my approach has been to get different opinions from different fertility clinics/specialists on what the surgery should remove and what the likely impact on IVF would be and to speak with the surgeon too on how easy it is to remove. It's not an easy choice as to whether to do more surgery - I'd suggest you get advice from the clinics on what the surgery could target and what the likely improvement would be. At least then you can weigh up all the options and know you've considered everything. Wishing you all the best with your decision and sending support your way. xx

[Lovelife26 in reply to MD54999]

Hi thank you so much for your response! Yeah I think you’re right getting different opinions will help. I have a endo specialist centre near me so hopefully can seek some advice from them. It is a tricky decision! I hope your operation goes smoothly for you and sending you lots of well wishes xx

[MD54999 in reply to Lovelife26]

Thank you 😊

[Apricottree]

Hi, I've been told that post surgery is the best time to try to conceive but not sure whether that applies to your specific situation. I had lap in may and 2nd round of egg collection and the ovary they removed endo from responded this time as opposed to no response during 1st round. So definite improvement for me. Just waiting to start FET cycle. Wishing you all the best with this round...it just takes one as they say xx

[Lovelife26]

Thank you for your response 😊 definitely considering surgery but will need to speak to endo specialist before we make any decisions. Wishing you all the best with the FET 👍🏼 xx

[Honeybeehappy]

Hi there Sara. I wanted to share my experience with you and the reality of my own treatment. I was diagnosed at 36, had already been on the waiting ivf list and had surgery to remove a 10cm endometrioma and the sticky mess of adhesions.

Right after surgery, I was put on prostap to slow Endo before ivf started 7 months later. My Endo is severe, Stage 4. The first cycle was a failure but that was because there had been a lab contaminant where 50 other couples didn’t have success and it was a bit of a legal scandal.

I had repeat surgery 10 months later and they kept half my left ovary which amazingly, still responded well to stimulation and we got good eggs from it! So surgery was a good idea at the time because I still had a good ovarian response. They suggested donor eggs but I wasn’t ready for that yet but by our 2nd overseas cycle a few years later, I was 40 so that was the best thing to do.

Moving forwards, we had 3 NHS cycles mixed with several transfers (fresh and frozen) where one worked but miscarried at week 5. We moved on to private UK treatment (via same NHS clinic) using own eggs, then overseas to Prague for several cycles between own eggs, donor eggs, and eventually donor embryos.

Over 7 years of doing treatment, I had 3 surgeries, 2 endometrial scratches, a lap for hydrosalpinx removal, different hormone protocols and literally none of that worked.

Much later, after our last trip to Prague in 2019, I was told I had adenomyosis which had probably been there all along and with that, a pregnancy wasn’t ever going to happen. We were mentally done with it all anyway so it wasn’t a blow to be honest.

I don’t regret the time, physical demands or spending huge amounts of money on pursuing our dreams but as you know, ivf chances are on the slim side for most people anyway, and having Endo does impact on this.

I know that every cycle is always filled with huge hope and this time it WILL work. In the end, I had about 14 transfers. Each time got a bit easier when it was a negative result and we tried to keep a sensible head which isn’t always easy.

Keep your hope burning, and keep it balanced with a reality check. I hope your treatment works for you and having Endo is a battle. I know your journey is far from easy so look after yourself and make the right decisions that feel right for you.

Wishing you lots of luck. xx

[Lovelife26]

Hello thank you for responding

You have been through soo much and sorry to hear about your difficult journey.

I did receive some bad news today, I managed to retrieve 2 low quality eggs. Previously I retrieved 1egg which fertilised and didn’t get a pregnancy. The IVF specialist today said I should have surgery to remove the redo then use donor eggs few months after surgery. It’s a lot to take in but perhaps there is no hope for my eggs considering our results. I am waiting to have my appointment with the surgeon for their opinion too.

I wish you all the best and we are troopers as my doctors says xx