endometrioma and IVF

[Mim9]

Any advice please.

After debilitating pelvic pain and large bilateral endometriomas I went privately for laparoscopy surgery with endometriosis specialist back at the beginning of February. My surgeon managed to remove the cysts and most of the endo but due to so much inflammation from stage 4 he was unable to tackle my bowel area and I’m due to have another surgery in future.

Our main priority right now is TTC which we have been on the fertility pathway for the past 3 years and been waiting to start IVF via NHS.

It was agreed with my endo speciality and fertility doctor that after my most recent surgery IVF should be started asap and will revisit further surgery in future as needed.

However, I had my most recent ultrasound yesterday and it has shown that another endometrioma has grown back on the right ovary measuring 3.5cm. I was also told I have adenomyosis. This was obviously very upsetting news to hear just weeks after surgery.

We were hoping to start IVF in the next couple of months.

I am now worried that the most recent endometrioma found is going to impact on our chances of success for IVF and if the clinic will allow us to continue or if I will need to have further surgery for it to be removed again. I just feel like it’s another set back and another hurdle to overcome before we have even had the opportunity to start our IVF journey.

Sorry this message is so long. If anyone else is in a similar position and can shed any light or give any advice that would be most helpful.

[MiniCeeCee]

hi Mim9 , so sorry to hear about the journey you’ve been through so far, and hope you’re fertility journey is a successful one. I too am going through IVF, and on the last scan they found an endometrioma measuring 2cm. They don’t seem to worried about it to be honest as it’s relatively small, as is yours. The most important thing they talk about in the fertility side of things, is your age and the quality of your eggs. So from what I know so far about the process, I’d say proceed with the IVF. There is a great Instagram account from Prof Tim Child’s of Oxford University, and he had did a great Instagram live a couple of weeks ago with a endometriosis specialist, worth a watch if you have time as it might answer a lot of the questions you are facing - it can be found here - instagram.com/reel/C5X-MY1P...

Best of luck x

[Mim9 in reply to MiniCeeCee]

Thank you so much for your response! It’s reassuring to hear that hopefully it won’t be too much of a problem.

I will definitely give the Instagram live a watch as well.

Please keep us updated on your journey and I wish you all the best xx

[Honeybeehappy]

Hi there. I’m so sorry to hear you’re having a hard time and it mirrors my own experience. Back in 2011, I had a very large endometrioma, and had it removed via open surgery (the size of it and concerns about cancer made it major surgery). 10 months later it was back and I had repeat major surgery. My surgery was complex and the endo was a riot. All this was happening when we were TTC. We pushed IVF to the max over 7 years between NHS, Private, overseas treatment, donor eggs, donor embryo, and further surgery for a hydrosalpinx. Out of 14 fresh and frozen cycles, only one worked and we had an early loss. I also had treatment with a small endometriomas present - they don’t bother if it’s smaller than 4cm. The reason for any concern about cysts is they take up too much ovary space that should be sprouting follicles with eggs during stimulation. In the end, the main problem factor for me was adenomyosis and with that, it’s can be a hostile environment for implantation which is already a challenge with having endo. I know that’s not what you want to hear but I’d encourage you to have a very honest conversation with your gynae about your success chances. I felt that we spent a huge amount of money towards the end of treatment when it was unlikely to work for us and my surgeon (an endo specialist and not my IVF doc suggested it wasn’t going to happen with my problems). It’s a very hard road and I really feel where you’re at. It can work but keep a level head that IVF is already a slim chance for most people. xx

[Goldgirl in reply to Honeybeehappy]

Try either carnivore or Vegan diet

After 4 failed transfers due to endometriosis, adenomyosis and endometrial hyperplasia, I went vegan and my fifth transfer worked

I took daily B12 supplement. Vegan diet is a high copper diet, so you may add a very low dose of zinc

1 year on Vegan diet almost completely killed my endometriosis and adenomyosis. My lining went from 19mm to 8mm

I also took lots of water, 5 liters a day

Some people swear by the carnivore diet. You can switch between both and stick to the one that works for you

[Honeybeehappy in reply to Goldgirl]

I’m afraid those days are long gone for us and we drew a line under a very difficult and expensive chapter of our lives. The clinical evidence and biology was not on my side and nutritional choices weren’t going to change my anatomy of chances of implantation. Good to hear it worked for you alongside spinning the dice that IVF really is. X❤️

[Goldgirl]

Vegan diet worked for me after 4 failed transfers (no implantation)

I went vegan and it seemed to solve my excessive estrogen problems, endometriosis and adenomyosis and endometrial hyperplasia

I got pregnant on my fifth transfer.

You can try carnivore diet as some people say it cured them. Vegan diet was what worked for me

[MD54999]

Hi Mim9, Sorry to hear about the difficult journey you've been on. I also have Stage 4 endo - I had a laparoscopy to improve IVF chances in October 2023 and they didn't get to remove all the endometriomas due to the amount of surgery they had to do so I still have on my left ovary measuring 3cm and three on my right ovary all under 2cm. My fertility clinic and endo consultant have said that I shouldn't get more surgery for these, they said anything for under 4cm they think that risk of damaging my ovarian reserve/follicles etc. is not worth it. So I've just left mine and the clinic are happy to do IVF anyways. Sometimes they caus problems with access but at my last collection the surgeon still managed to access all my follicles which was a relief. The best of luck with your treatment x

[Mim9 in reply to MD54999]

That’s reassuring to hear! Thank you so much for your response and good luck with your journey xx