Preparing for IVF - endometriosis and potential APS

[JC222]

I've been preparing to begin IVF treatment, doing blood tests etc. One of my blood tests came back positive for beta-2 glycoprotein IgM antibodies, which may indicate antiphospholipid syndrome (APS). I'm still waiting for a further consult but a quick search online showed that APS can cause difficulties with implantation and recurrent miscarriages.

From what I've read, it seems that with proper treatment for APS during pregnancy, there is a good chance for a success. However, is this still the case factoring in my endometriosis and adenomyosis? It just seems to be yet another hurdle in our TTC journey. I wonder if anyone else has any experience with this? x

[skygreen]

Hello, I tested positive for APS years ago after recurrent miscarriages and also have had multiple surgeries for endometriosis/fibroids.

You really do have to be your own advocate - I had a few private appointments with a gynaecologist and haematologist as it's a long wait to get answers/test results in the NHS. My gynae then put me on his NHS waiting list for endo surgery. Depending on if you need surgery it can be a long journey as you have to factor in waiting lists/recovery time. It probably took 2/ 3 years to get all of this sorted before private ICSI treatment due to NHS waiting lists...

I was on aspirin and heparin for IVF and some protocols/meds worked better than others with endo. Diet was really important for me to control inflammation - The book 'It starts with the egg' is a good read. If you have a good clinic and Dr they should have lots of knowledge - I think I've been very lucky with my Drs.

Good luck 😊💝

[JC222 in reply to skygreen]

Hi skygreen thanks for your reply and book recommendation, which I'll check out for sure. Glad you managed to control your inflammation and I hope your pregnancy journey was successful too ❤️

[Maybeendo]

I would say the same as skygreen . I have high aps antibodies and they said they’d put be on heparin and aspirin. The last round didn’t work but it could have also been a bad egg/luck so we did ivf and pgta tested the embryos because of recurrent MCs. I’m just recovering from endo surgery and have possible adeno. I’m am under an immune repro specialist to help me and will work out a protocol but will incl heparin and aspirin. I e changed my diet too. Good luck!

skygreen was your pregnancy successful? So happy to hear that you managed to control it. I’m just working out whether we also take steroids to calm down my immune system/nk cells.

[JC222 in reply to Maybeendo]

Thanks Maybeendo , I appreciate the heads up on the medication! Sorry to hear your last round didn't work out, but I hope you are recovering well from your endo surgery and treatment ❤️

I will be seeing my doctor soon, and hope to start a cycle asap. We had to go private because my ovarian reserve is already really low (both AMH and follicle count are not good). Trying to stay positive🤞🏼

[Endofitall]

I believe there is some link between endo/adeno and APS antibodies. I have all 3 too. I’ve also got a protocol with steroids, heparin and there is talk about adding aspirin next time. Also doing a freeze all between stims and FET if we can.

I’ve had endo surgery between my 3rd and 4th (current) stim cycles to try and improve the situation (and my endo symptoms). I did get pregnant for the first time naturally following endo surgery (first cycle trying after) but it was ectopic and I lost a tube. So I think the endo surgery had changed something very quickly. x

[JC222 in reply to Endofitall]

Thanks for sharing Endofitall , and so sorry to hear about your ectopic pregnancy.

I haven't tried any cycles yet, so I'm not yet sure the impact my current endo might have on the success, but am acutely aware it may impact retrieval and transfer. I have an endometrioma on my left ovary but decided not to remove so as to preserve ovarian reserve (which is already v.low). I was told I may need multiple cycles before I should even attempt a transfer, but I will definitely be alert to the protocols you mentioned for the APS (if I get that far).

Wishing you the best for your fertility journey 💪🏼