Endometriosis and repeated Implantation failure

[BetsyBo]

Hi everyone,

I have t posted on here for a while as needed to take some time out after three failed IVF cycles.

Husband and I have been together 17 years. In all that time we have never had BFP. Been actively trying for 4 years and despite 5 months of letrozole and 3 FETs, nothing. All embryos transferred were good quality so there was clearly an implantation issue.

We decided to go privately and shortly after was diagnosed with Endometriosis. I have had a laparoscopy and now waiting to see Dr again in couple of weeks to discuss plan for IVF going forward. He has already suggested long protocol and we have discussed additional medication in case I have underlying autoimmune disorder that be be affecting implantation (I have raynauds).

I was just wondering… are there any other things that I should ask/consider re. Endo and implantation issues?

Any help and/or success stories from ppl in similar positions would be so helpful!

Thanks so much in advance xxx

[Latetotheparty38]

Hi I understand your heartache I’ve just had my 4th failed stim. The positive is that you are creating embryos and assume blastocysts so that’s one hurdle you don’t have to overcome. Have you had an NK Killer cell test? If your nk cells are high this can attack the pregnancy as a foreign object they can put you on a protocol to suppress your immune system. Taking low dose aspirin can also help with implantation if you have blood clotting issues.

I’m not sure if you’re age but as we get over 35 most eggs are just genetically abnormal so it’s a numbers game to find the good one!

It’s a hard long road but focus on the wins you are having.

Xx

[BetsyBo in reply to Latetotheparty38]

Aww thanks so much hun. I mentioned NK cells at last appointment but didn’t get much take up so will defo revisit that.

You’re right about the aspirin and that is something he said he will do, thank goodness!

Didn’t know that about embryo quality after 35 (I’m 36 in March) so worth holding that in mind. Thanks so so much for the reply and I’m sorry to hear about you 4th failed stimulation 😔 it’s a gruelling process isn’t it. I will take your advice and focus on the positives. Thanks again x🤍x

[Latetotheparty38 in reply to BetsyBo]

Yeah I think if you’re making embryos that’s a good sign just need them to stick. Sometimes they can do an endometrial scratch to help it attach. Do you get the embryos PGS tested? Could be an option before you transfer to save the heartache if they don’t work out as they might just have something genetically wrong.

My doctor in Australia actually pioneered the protocol for high nk cells it’s called the bondi protocol if you want to google it. It’s not applicable to me but I found it so interesting and want to tell the world in case this one thing is stopping women falling pregnant.

Also has your partner had a sperm DNA fragmentation test? Probably not so applicable if you’re creating embryos but I love to rule everything out and do all the tests.

[BetsyBo in reply to Latetotheparty38]

This is all so so helpful. Thanks so much lovely.never heard of the bondi protocol before so will certainly look into that.

Husband has had all tests and another positive is that he is all good.

Again, another reason to be grateful 🤍

[letro112]

Also had stage 3 endo removed.. going into my 5th stimulation now.. the positive is that good quality embryos are being g produced by us both.. however I found out earlier in the year through chicago bloods natural killer cells and cytokins are sky high. I have already tried steroids intralipids aspirin and clexane and unfortunately had another CP recently. I now have to do humira, plaquenil and IVIG which is quiet expensive but looks like we don't have a choice in order to get the immune system functioning properly. Wishing u luck on this gruelling and challenging journey .. I honestly think at this stage it's miracle any baby is born x

[BetsyBo in reply to letro112]

So sorry to hear this hun. Good that you still have options to pursue so best of luck with that.

It is so gruelling and such a horrible lonely journey at times.

Take care of yourself lovely xxx

[Jess1981]

I'm so sorry it took so long for you to get diagnosed with endometriosis and you have had to suffer with failed treatments due to the endometriosis not being diagnosed and treated. I also have endometriosis, it took us nearly 6 years of trying with no pregnancy and 3 years of abnormalities in my periods to eventually get the diagnosis. It sure is a frustrating process I wish there was an easier way to get a diagnosis so women didn't have such a struggle to get diagnosed.

Anyway after my first lap I conceived naturally but it was a chemical pregnancy unfortunately my endo re grew rapidly but after my 3rd and last lap I conceived my now 2 year old daughter. We decided to re try for a sibling for her mad I know! I conceived again naturally but lost my daughter Amelia at 20 weeks pregnant last November, totally heartbroken we tried again but in January had another chemical pregnancy, March saw us have our 3rd loss in a row at 6 weeks pregnant. Referred to a miscarriage specialist who like Amelia could not find the cause of our losses- I accepted it was likely my age and perhaps a numbers game, if I threw the dice enough times I may have a successful pregnancy. We conceived again and tomorrow I'll be 12 weeks pregnant. I've had 3 scans - 2 due to recurring miscarriages and another one as I was spotting. All is so far ok. Still feels to soon to breathe out.

The only difference I can see with this pregnancy and the miscarriages after Amelia was I was allowed prednisone ( low dose steroid) as I have raised nk cells ( tested 5 years ago) with my 2 year old daughter I took these steroids until 12 weeks. I also took progesterone as ladies with endo can have lower levels of progesterone. The miscarriage specialist told me there has a trial being done lashes taking it till 16 weeks- even tho as an obstetrician she says placenta should take over by 10 weeks. I'm lucky that my miscarriage specialist is now my obstetrician as she knows our history.

I wanted to let you know there is hope of having a baby ( or 2!) with endometriosis. I'm 39 and definitely not getting any younger with a crap AMH level - when I was 32 told it was equivalent to a 40 year old 😱 god knows what it us now!

Really happy you've got a diagnosis and hope this is the last missing pierce of the puzzle Xx

[BetsyBo in reply to Jess1981]

Oh so sorry for your losses. Must be so difficult for you all.

Congratulations on your two year old the pregnancy now but totally understand the need to remain cautious, hope that eases with time. It is so helpful to hear positive stories, I think sometimes they get lost, or at times I avoid letting myself think about the best case scenario.

I’m going to ask about steroids/NK cells and progesterone as it did show up I was on the low side so wondered why they just give me the standard amount for the FETs.

Thanks so much for the reassurance and information, I forgot how amazing this forum was 😘😘😘