Looking for reassurance - endometriomas and adenomyosis

[Anemone37]

I everyone, I'm 37 with an AMH of 34.7 and AFC of 15. I have endometriomas on both ovaries which are 2.0cm x 3.6cm and 3.6am x 1.6cm. I also have adenomyosis as seen a cyst in myometrium at the fundus. I am really worried that my eggs will all be poor quality and that because of the endometriosis and the adenomyosis I will have implantation problems as well.

Has anyone experienced similar problems and still had success? I am keen to hear stories from other women who have experienced similar as I'm feeling very alone and convinced that it won't work when I really want to feel more positive. I am waiting for an NHS hycosy tomorrow (even though I know I have all this now because I couldn't wait and paid for a private scan) and I have an appointment with a surgeon later this month. It feels like such a long wait before I can start any sort of treatment.

Our private consultant has recommended embryo batching ahead of surgery. I think I might start medication in May. Would appreciate any advice or similar stories. I'm wondering if I might need to use an egg donor but am then worried there will be implantation failure. The more I research the more bleak I feel about the whole thing but I know people do have success...trying so hard to stay positive! Thanks everyone

[Amy2106]

Hey,

I was told that the quality can sometimes be affected but I have managed to get good graded embryos 1 in my first round (only got 3 eggs) and 5 in the second (from 8 eggs). I have a low AMH due to previous surgery removing endometrioma they were 10/6cm at the time. I changed my diet added a bunch of supplements which I think helped my egg quality if you aren’t already!

I would definitely agree to bank embryos before having surgery. Mine is currently 6cm and there were no problems with egg collection.

Unfortunately both of my fresh transfers ended in chemicals but they don’t think it was due to the cysts/poor quality embryos and been advised not to have any surgery at present.

You have a good AMH so hopefully you can get some good quality embryos!

[Anemone37 in reply to Amy2106]

Thank you so much for taking the time to reply. I have recently changed my diet too and the dietician has helped me understand which supplements to take and which ones to leave out (I was really overdoing it with the antioxidants!) I am so sorry to hear about your chemical pregnancies and wish you all the best of luck in your journey to come. x

[h0lli3]

Similar situation - tried to bank embryos before surgery but stage 4 endo was blocking access to both ovaries. Had AMH of 34 before the surgery and it went down to 13 afterwards, but then manged to bank 13 embryos from two egg collections and only from one ovary as one was very damaged from endo already, so that's the success so far! Just had more surgery to remove tubes as they were both hydrosalpinx from endo damage, now attempting first ever FET in a couple of months with 6 cysts that have come back, and uterus, ovary and bowel adhesions but the clinic seem positive that won't affect implantation so fingers crossed 🤞 the only advice I have is to be realistic with timings and accept you can only control so much, it was hard but when I started to accept it's going to be a long road, it did take the pressure off. It's taken us 3 years to get to this point of being able to actually transfer, using NHS endo clinic for surgeries and private IVF for banking and transfers. But there is hope, reading things online at so contradicting and the journey is different for every endo warrior. Wishing you well

[Anemone37 in reply to h0lli3]

Thank you so much for taking the time to reply. It sounds like you've really been through a lot and it helps to know I have a long road ahead of me so I can begin to accept it. I have just spoken to a really helpful dietician who has helped me consolidate my supplements and let me know it's still advisable to have full fat organic dairy. Wishing you the best luck for your FET in two months time. x

[Endofitall]

I sadly don’t have a good news story yet (you can read my bio). But that’s great you have a high AMH. Even with low AMH we’ve had good/excellent quality blasts so there’s hope.

I just wanted to say good luck with it all and I do think embryo banking is a good plan. I wish someone had told me this at the start of our journey so we didn’t waste 5 years. Hope it all goes well for you xx

[Anemone37 in reply to Endofitall]

Hi Endofitall, thank you so much for your reply and I am so sorry to hear everything you have been through. These are such cruel diseases. It's incredible how resilient women going through this are forced to become. Wishing you all the best of luck for your continued journey. xx

[Purplecarrot]

My numbers were very similar to yours, and I also have endo and adenomyosis. I am a bit younger (34 on last retrieval) but our numbers are extremely close. My first round was cancelled due to poor response, second and third had good response but retrieval had to be abandoned due to failed sedation (which is very rare, so don't worry about that. Like, really rare.) On rounds 2 and 3 we got 8 and 7 eggs respectively, and due to what appeared to be minor quality issues we got 1 day 6 embryo each time which didn't stick.

4th round was a whole different story, I went to Prague so I could have a general anaesthetic to avoid the sedation issue. They got 21 eggs, 14 of which were mature, and we got 3 day 5 embryos and one day 6. I am currently 36 weeks pregnant with the first of those embryos, with the other 3 safely in the freezer.

I hope this gives you a bit of hope! Even if the first round doesn't go as planned, things can be tweaked and adjusted.

I also used the IVF/endometriosis advanced supplement protocol and was getting more exercise in an attempt to improve quality a bit for the last round.

Best of luck to you!

[Anemone37]

Hi Purplecarrot,

Thank you so much for your response. Massive congratulations on your pregnancy! That is such wonderful news. My clinic have suggested general anaesthetic because my left ovary is stuck behind my uterus so they might not be able to access it for retrieval.

At my hycosy scan they saw that I actually had 11 follicles on my left ovary (inaccessible though) and 20 follicles on my left. It also looks like the tubes aren't stuck which again is a huge relief. This made me feel much more postive but there is that little (actually quite loud) voice in my head saying the quality will be poor due to the endo and my age etc. I guess donor eggs are always an option if it comes to it.

I have recently spoken to a dietician through my clinic who helped me adjust my supplements (I think I was overdoing the antioxidants) so now I take impryl, omega 3, vitimin D, folic acid an optibac (about to switch to a better alternative called bio femme v) I also take a magnesium supplement at night. Does this sound similar to what you were doing?

I'm really interested to hear about the exercise you've been doing to help too. The dietician said running might not be the best idea for me because of the cortisol spikes so I'm thinking of just going for lots of long walks and a bit of yoga.

Best of luck to you too! xx