Advice for 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!!

[Behind_Hazel_Eyes]

Hi! I am so sorry to hear about your unsuccessful rounds. Just thought I would reach out and share.

I have stage 4 endo with kissing ovaries and a 5cm cyst on 1 ovary. They also suspect I have endo on my bowel. I am just in the middle of my first cycle. Literally just started the stims last night. So I don't know what my egg quality is like but I am hopeful. I had my first lap in October 2017 when I was diagnosed. I haven't had another yet. I had considered surgery before IVF and am still on the waiting list for it. We have been ttc for 6 years with no success. There are male factor issues as well. I had also previously been rejected for ivf funding on the nhs due to my weight. I was morbidly obese but over the last 15 months have finally got my bmi under 30. I went private in January and was approved for 1 round of icsi. To be honest I went in the hope that they might do a freeze all cycle, due to my ovary situation, but was shocked when they said to go ahead with 1 full cycle. I am hoping to have couple to freeze but may not be able to, as they think they may be only able to access one of my ovaries. However if this cycle does not work then I will be seeking surgery to unstick my ovaries and to try to improve our chances.

I am on a host of different supplements at the moment:

Wild Nutrition fertiltiy

Zita West Vital DHA with Omega 3

NAC 600mg

Ubiquinol 600mg

Vitamin C 200mg

Zinc 500mg

Magnesium Citrate 1091mg

I also drink beetroot and pomegranete juice daily (started this 2 weeks ago). Back in June I started an Anti Inflammatory Diet to try to help reduce my endo symptoms and improve my fertility. I also do regular accunputure. This diet massively helped my endo symptoms, removing the pain I felt half of every month. I can't speak for ivf success on this diet, but endo wise? It has changed my life. Maybe helping to reduce inflamation may help you to? There was another girl who responded to one of my posts who also has severe endo and said she was on a similar diet and her 2nd round worked! Who knows it may help you too. Good luck 🍀

[PeaceLilly1 in reply to Behind_Hazel_Eyes]

Hi, thanks so much for the reply. I am definitely going to give the anti inflammatory diet a try, I don’t have a bad diet but def more that I could do - really glad it has worked so well for you! Gives me a bit of hope! From some of the research I’ve done it definitely sounds like reducing inflammation as much as poss is key for successful IVF. I have heard of the NAC supplement maybe being a good one for endo so I will try that aswell.

Best of luck for your first cycle!

[Someonehere1]

Hi

I had endo surgery after my first round of mini ivf. They removed the endo and some fibroids.

My ivf prior to the surgery got 3 eggs and all 3 fertilised making it to day 5 with one top quality for freezing.

Since surgery to remove endo I’ve had 2 rounds of ivf and each time I’ve got 5 eggs. But only 1 has fertilised in total from both of those rounds and was a BFN.

I did also change the stimulation from menopur to gonal f and have had a higher dose. I ’m starting to wonder if the surgery has made it worse but I don’t know if the meds do anything.

I’ll have my appointment with my doctor soon so can let you know what he says but I don’t know if the surgery has helped at all. Maybe that’s why they’re recommending not doing it. But that being said I’d be getting a second opinion if you’re not sure. It’s your body and your money and if something doesn’t feel right I’d trust your gut and question it.

I’ve looked into DHEA but have read that with endo it’s not the best idea because of the hormones.

[PeaceLilly1 in reply to Someonehere1]

Hi, thanks for sharing. That’s useful to know. I’m definitely going to get a second opinion. Booked a consultation with a specialist at a dedicated Endo Centre for in a few weeks so hopefully get some more advice then.

Yeah the DHEA makes me nervous. Some research suggesting it can really help with IVF but concerned about long term impact on endo. And a few people have said their IVF was even more unsuccessful after using it. So who knows!

[Someonehere1]

definitely think a dedicated endo centre could help. There seems to be so much confusion around what’s best with endo.

[MD54999]

Hi PeaceLilly1, I've had a very similar journey to you. I've just finished a third IVF cycle and have severe endometriosis. I had 0 embryos my first cycle, the second cycle 12 eggs collected but only two low quality embryos which were both a BFN. I then had surgery to remove a 9cm cyst which was between both of my ovaries. The third cycle I changed clinics, took pergoveris for the first time as a stim med and took a lot more supplements e.g. Coq10, Omega 3. I got 10 eggs this cycle and one good quality embryo which ultimately ended in a BFN. I'm also trying to assess what to do for my next cycle. My clinic have recommended a higher level of Pergoveris and also that I take testosterone gel (which is supposed to improve egg quality) They said more surgery would risk damaging my ovarian reserve and they don't think it will help IVF results. It's so hard to know what might make the difference in terms of IVF outcomes!

[PeaceLilly1 in reply to MD54999]

Hi, thanks for sharing. Sounds very similar. It’s impossible to know what’s best isn’t it.

My first 2 cycles they put me on both 225iu gonal-F and 225iu meriofert each day. The last cycle they tried just 225iu pergoveris (hoping that the lower dose would mean the folicles would grow a bit more consistently). But I had a very similar outcome all 3 cycles.

Trying to decide whether to go to Create Fertility as they have a very different approach, with lower quantity but higher quality. But I have seen very mixed reviews on whether this works.

[MD54999 in reply to PeaceLilly1]

That's interesting - I did 150iu Pergoveris and 300iu Gonal F last cycle which seemed to produce better outcomes for me than the higher levels of Gonal F and Luveris I tried before that. Have you tried different protocols? I find the short protocol works much better for me, the long protocol produced worse results.

[PeaceLilly1 in reply to MD54999]

I have only done short protocols. I can’t remember the reason they gave but they said that would be the best option for me.