Advice on IVF with endometriosis

[PeaceLilly1]

Hi everyone… sorry for the long post but I am after some advice…

Last year after difficulty trying to conceive for 2 years, I had a scan that showed a large cyst they suspected was endometriosis. They recommended a laparoscopy to remove the cyst before I started IVF. During the laparoscopy they removed a 11cm endo cyst on my left ovary (no wonder I had been in pain!) They also found endo on my bowels and bladder but left this alone.

After the surgery they put me on prostap injections to manage the endo until I started IVF. Unfortunately the cyst reappeared at 7cm within a month and the surgery also caused my AMH to drop significantly. So the consultant advised to go ahead with IVF before having anymore surgery as didn’t want to risk causing more damage to my ovaries.

I have now had 3 unsuccessful IVF cycles. They have got 3-5 mature eggs at egg collection but only 1 has made it to blastocyst each time and has been poor quality so ultimately failed. I expected egg quantity to be low but I thought the quality might be ok.

I feel completely lost with what to try next and how to know if I am getting the best advice and treatment from my consultant. i.e. should I have more surgery to remove as much of the endo as possible before trying another IVF cycle?

If anyone has been through similar circumstances and is willing to share any advise that would be hugely appreciated.

In particular, does anyone know of an IVF consultant in the UK that specialises in treating women with severe endo?

And has anyone used DHEA and could share details?

Thank you!!

[Endofitall]

I’m so sorry you’ve been through all this. I have a fairly similar experience though I did not have excision before my IVFs. I’ve done 3 egg collections and 5 embryo transfers. All negative on OTD.

I’d definitely suggest it starts with the egg book and looking at optimising diet and taking ubiquinol or coQ10 if you’re not already but I bet you’ve done all that anyway.

The DHEA was a nightmare for me. Consultant suggested before 3rd cycle. I had worst result yet and my endo flared so bad with it and afterwards. I did have bloods checked on DHEA but still has terrible side effects.

I’ve now had excision lap (severe rectovaginal endo) and fallen pregnant naturally the following month. It’s ended sadly with ruptured ectopic pregnancy but all specialists still saying positive we’ve conceived naturally so soon and for first time ever in years after the excision so I do think it’s changed something.

I don’t think we’re allowed to recommend specialists on here but I find most fertility drs now are purely IVF interested and finding a really specialist endometriosis expert who also knows fertility medicine well is a challenge. We have sought 3-4 other opinions since we finished our last cycle though and it’s been really useful and also telling to speak to those who’s interests aren’t purely in IVF!

I wish you so much luck. Feel free to DM me if I can help more.

[MontsJ in reply to Endofitall]

I’d be really interested in finding out more about the fertility doctors you have spoken to with an endo specialism and what information you’ve learned from these conversations

[PeaceLilly1 in reply to Endofitall]

Hi, thanks so much for your reply and sorry to hear of everything you’ve been through.

I have just bought the it starts with the egg book and lots of useful stuff in there. I have been taking coq10 but will look into starting some of the other supplements. The DHEA definitely makes me nervous though! Really useful to hear your experience with it.

Sounds really positive that you were able to get pregnant naturally and I really hope that is a step in the right direction for you.

[Olive8000]

hi PeaceLilly,

Sorry to hear what you’re going through. I’ve had a similar experience, but unfortunately not at the end of our journey. We started trying 5 years ago, couldn’t fall pregnant for the first year but then did and miscarried three times in 6 months. At the tome, I didn’t know I had endo. Over the next few years we had 3 more miscarriages and two rounds of ivf. Egg quality was never great, but we had a good blast formation rate, unfortunately all the embryos were abnormal. The ivf dr at this point said that he believed there was something underlying but didn’t know what it was. I had asked a couple of times about endo, as we had seemingly been tested for everything else he could think of and he said he didn’t think it was. I did my own research and realised it could well be, the biggest clue was that my left ovary was behind my uterus, 6 gynaecologists (mostly ivf drs) told me this was ‘normal’. I saw an endo specialist who said it was highly likely that it was endo - it was stage 2-3 and there was some on my left ovary, a nodule on my uterus and adhesions to my bowel. My laproscopy was in Dec, so we have just started to try again. Unfortunately time is not on my side, but we are more hopeful than we were before. Although I’m not sure if it’s growing back already. After the surgery I didn’t take hormone suppressants because we knew we would be trying again soon. I completely agree with the previous person who posted, the ivf doctors I have come across, both top clinics, one in Harley St, was not very wise to endo and just want to push on with ivf. If you can get a recommendation of a dr with expertise in endo this my be a good route to go down. Although, you may find you’re able to fall/carry naturally. Personally, I do worry a bit about all the inflammation, can’t be the ideal environment to grow a baby, but I know many people do succeed. Feel free to DM me if useful xxx

[PeaceLilly1 in reply to Olive8000]

Hi, thanks for the reply. It really is crazy how long it takes for endo to be diagnosed. So sorry you have had such a horrendous time.

I have definitely not had a good experience with either my IVF consultants (tried 2 different ones) or my gynaecologist (who is supposedly a specialist in endo). I’m going to try another endo specialist who heads up a dedicated endo clinic. He doesn’t work in IVF etc but at least it will be another opinion on how to best manage the endo and reduce inflammation as much as possible. From the research I have done it definitely sounds like the inflammation and oxidative stress caused by endo creates a “hostile” environment. So looking into anything that can reduce these things.

I really hope it works for you trying again now you have had the lap. Wish you the best of luck! X

[HortC11]

I’m sorry to hear what you have been going through.

I found out I had endo & adenomyosis after failing to conceive for about 1.5 years. I was 33 at the time. My consultant advised me to do an egg collection first, to freeze embryos, before having any surgery, incase my AMH fell after surgery. I did 1 round of IVF & ended up with 2 embryos that could be frozen. I was then waiting for surgery but I never had it as 2 days before it was due to happen I found out I was pregnant naturally. This was the first positive test I’d had in 3.5 years. My son is now 8 months old.

I’m sorry I cannot give you any more advice but just wanted to say don’t give up hope, it also might be worth discussing the benefits of egg collection, surgery, & then embryo transfer as surgery might improve the chance of a successful transfer?

Wishing you all the best x

[JOSANDY40]

Yes I had similar with the cysts regrowing. Left ovary made more huge cysts but produced good eggs, right ovary had lots of lasering in past so eggs when fertilised the cell counts were wrong. The IVF made me very unwell. After eggs put back in me I was allergic to something and started bearing down and a werid burning pain. With all the hormone driving the ovaries to make eggs I was really bad with Endometriosis for mths afterwards. The experience was stressful, my personal failure was depressing. People's expectations was high for me to achieve this. My mother inlaw was angry! I tried I finally backed away. I put everything in then to my career but finally I had to give that up due to this wide spread Endometriosis. Then my husband left 5yrs later but I feel his mother's needs were greater for a child. He isn't happy, still he hasn't found a partner yrs on and doesn't see his parents much.

[LouiseExeter]

Hi,

I’m so sorry you’ve had to go through this, it’s really difficult. I saw an endo specialist before starting IVF, Mr Mahran at the Manor Hospital, Bedford, I absolutely recommend him. He drained the cyst on my ovary instead of removing it to avoid damaging it before the IVF. Unfortunately we haven’t had a positive result from IVF yet, but I don’t think this is because of the endo. Create fertility have also put me on Zoladex to downregulate the endo before each transfer. I hope this helps you.

[PeaceLilly1 in reply to LouiseExeter]

Hi, thanks so much! This is really helpful. I had wondered about whether they could just drain the cyst rather than do any more surgery, as maybe that would at least reduce some of the inflammation etc. Do you mind me asking how they did it? i.e. was it still via a laparoscopy under general anaesthetic? Or can they do it another way?

I will ask about the Zoladex aswell.

I have been debating trying Create but have heard mixed reviews. I’ve signed up to a webinar with them next week though to get some more info. How have you found them?

Sorry it hasn’t been successful for you so far - wishing you the best of luck with it.

[LouiseExeter in reply to PeaceLilly1]

Hi,

No problem, yes it was via a laparoscopy under general aneasthetic where endo was removed from other places at the same time, so recovery ect was the same.

I’ve also had mixed feelings about Create. We sort of ended up with them by default as another clinic wouldn’t accept my slightly low BMI. All of the actual medical care has been great including the doctors and nurses at St Paul’s, but the admin side has at times been really poor. I haven’t used any other clinics so I can’t compare them.

I hope this helps you.