Has anyone with both endometriosis and adenomyosis managed to successfully conceive with IVF?

[Flower1994]

Myself and my partner have been listed for IVF treatment my first drug appointment is at the end of this month. Unfortunately I have been diagnosed with both endometriosis and adenomyosis which actually doesn't surprise me and explains why my periods have been so horrendous for years . Now I am really starting to worry because I have both gynae conditions is my likelihood of success going to be slim? And was just wondering if there is anyone else with both conditions that have managed to conceive with IVF treatment successfully?

[DianeArnold Partner Nurse Fertility Network UK]

Hi. Yes it can and does happen with both problems. All I would say is to make sure your specialist is skilled in treating adenomyosis. I do speak to a lot of women who have relief from their endometriosis, by having acupuncture, so maybe look into that too. Obviously I wish you well when you start. Diane

[Flower1994 in reply to DianeArnold]

Thankyou Diane I will ask about acupuncture at my next appointment I did see leaflets actually at the clinic last time we went for our first consultation.

[Jonesy84]

Hi lovely, I was diagnosed with Endo after having surgery. Much later in life during a private scan for my IVF they said I had adenomyosis which to be honest wasn’t a surprise. I did have a successful round so fingers crossed for you xxx

[Flower1994 in reply to Jonesy84]

That's good puts my mind at ease a little bit knowing it can still work just worried me having not just one condition but two xx

[Eternalwarrior]

Yes, I did! I have a 2 year old son after a very hard and long journey (I have been 8 years on it now!) and currently (cautiously) 10 week pregnant with my very last embryo (a C grade) and I am 40. If you have any questions, please feel free to ask and I will be very happy to help, if I can. I have DIE and endometriomas in both ovaries, so I did need to have excision surgery for that and I had to treat the adenomyosis downregulating. There is hope! Sending you lots of baby dust xx

[Sharbertn in reply to Eternalwarrior]

Hi Eternalwarrior can I ask what treatment you had for the downregulating? I have endo and have had excision surgery but I have just found out I have adenomyosis and nothing so far has been suggested for that!

[Sharbertn in reply to Sharbertn]

Also congratulations!!

[Eternalwarrior in reply to Sharbertn]

It is great news that you had excision surgery. In my experience, that is definitely the best treatment for endometriosis. For my adeno, I downregulated first with Decapeptyl for 3 months and they thought that should be enough but unfortunately, it wasn't so I had another two (or 3?) Zoladex monthly injections. My adenomyosis was first diagnosed on ultrasound and confirmed by MRI. If your adenomyosis is not so bad you may not need downregulating for so long.

When I was told I would have to wait for so many months for the transfer, I got so upset, but now I realise it was totally worth it! Good luck xx

[Shwet_16 in reply to Eternalwarrior]

Hello, can I ask if you also did ERA test before down regulating?

[Eternalwarrior in reply to Shwet_16]

Yes, I did ERA, EMMA and ALICE and had antibiotics and probiotics before transfer as well!

[Shwet_16 in reply to Eternalwarrior]

Thank you for responding xx

Did your ERA indicate extra progesterone?

Also when did you start probiotics and antibiotics; how many months before the transfer?

[Eternalwarrior in reply to Shwet_16]

My ERA test actually came back normal. I cannot remember exactly but I did the antibiotics for 8-10 days (maybe more) and then probiotics for another 10 days. I did this just before my transfer. Hope this helps xx

[Shwet_16 in reply to Eternalwarrior]

Thank you xx

[Eternalwarrior in reply to Shwet_16]

Good luck xx

[Shwet_16 in reply to Eternalwarrior]

Thank you xx

[Flower1994]

Aww that's lovely that's given me a bit more hope. 8 years wow! You have percivered for a long time you must be a very strong person. Congratulations on your little boy and I hope everything goes well with your second pregnancy. I did ask my consultant weather I would need to have the endo removed by surgery I am aware it can come back as I was worried it would impact the outcome of the ivf treatment, but he said it wouldn't really effect the outcome. At the time of my initial ultra sound / MRI i only had the endo on my right ovary but these were done a good couple of months ago now. Xx

[Eternalwarrior in reply to Flower1994]

Thank you so much for your nice words. It is really good news that your ultrasound and MRI didn't show endo elsewhere. Did you have your fallopian tubes checked? The first time I had a hysterosalpingography they were OK, but after so many years of TTC and IVF, I decided to have them checked again and they thought I had a hydrosalpinx... I had surgery and in fact it was an endo nodule! I was told any fluid on the tubes can affect implantation too. Good luck! xx

[HopefulKay in reply to Eternalwarrior]

Thank you for sharing your journey and congratulations! It gives me a lot of hope as I also have endo and adenomyosis. Had excision surgery last year for stage 4 endo which included a bowel resection. I have also been told I have hematosalpinx which they think explains the mid cycle spotting I've been having since my excision surgery. I've been advised to freeze some embryos and then have another surgery to remove tubes and then go for a FET. Was this the protocol that led to your 2 year old? Can I also ask what clinic you went with as I'm having a hard time figuring out which clinic would be best for endo/adeno. Also did you have any immunology add ons?

I've done once cycle of embryo freezing with lister Portland which led to day 7 embryos and one day 6. Was a disappointing result given the high number of eggs retrieved. They want to do the same protocol again but I'm having some reservations and also not sure they are best placed to tailor things for someone with endo/adeno. If you don't mind me asking, were the embryos that led to success all day 5?

I appreciate I've asked a lot in this post, would be so grateful for any information and advice! It's such a confusing and lonely journey and I feel so exhausted already despite only being at the start of the IVF journey (dealing with endo does that to you I guess!) Thanks very much.

[Eternalwarrior in reply to HopefulKay]

Hello lovely,

Yes, I had egg collection first and then surgery and downregulating for adeno. I also did the autoimmune protocol and was on lots of meds (high dose of steroids, hydroxychloroquine, heparin, aspirin, etc.) and that resulted in my 2 year old. I am also currently (cautiously) pregnant (16 weeks) following the same protocol. We also went for natural FET, as my body and my endo do not like oestrogen!

My son and my current pregnancy were our last 2 embryos and the lowest quality we had (currently pregnant with a grade C embryo that we didn't know whether it would survive the thaw!) I have to say that after having my son, I breastfed him for 2 years ( he is 2.5 now) and I didn't have any periods whilst I was breastfeeding which really helped with my endo and adeno. I still have endometriomas on my ovaries (they reappeared quickly after my surgery, unfortunately) but they are small. The consultant was surprised to see the improvement in my adeno after having my son / the breastfeeding!

I have spent my 30s trying to be a mum, so it was a very long journey but if it gives you hope, I am 40 and it worked when I was older and the lowest quality embryos.

I don't think we are allowed to name clinics here, so PM me if you want, but my clinic is in Spain.

It can be a very long and hard journey Sending you lots of hope and baby dust 🥰🥰 xxx

[Eternalwarrior in reply to Eternalwarrior]

Sorry, I forgot to say they were both 5 day embryos, but my clinic told me their implantation and live birth results are very similar with day 6 embryos. We had one but it didn't work us because we PGT-A tested it and it was aneuploid, but my clinic said that it doesn't really matter whether they are day 5 or day 6 xx