2 year IVF waitlist. Immunology first?

[Hopelessinseattle]

Partner and I have been TTC for almost 2 years. All tests so far normal. We had our first appointment with infertility consultant yesterday and I’m feeling a bit lost and hopeless today. Will add that we are both 35 and in good health (BMI, no alcohol, no smoking) except that I have a known autoimmune condition and a suspected second one. I asked the consultant if autoimmune conditions have an impact on conception and she categorically said they don’t. I thought otherwise? I have had to withdraw from all medication for the last 2 years due to TTC which is partly why I am struggling both emotionally and physically. In the interim we have had not even a glimmer of pregnancy.

The reason I am seeking advice here is that we were told yesterday that after an HSG(?) it would be IVF and that there would be a 2 year waitlist. This has floored me. I can’t go on for another 2 years without taking the pain relief I was on and have no idea how to proceed. I am bounced back and forth between gyn and rheumatology and get no answers.

I guess I’m wondering what my plan should be, what would your next steps be if you were me?

I’ve been doing a lot of reading about reproductive immunology, should I go down this route of testing despite the consultant being adamant that that wasn’t a factor? It’s so expensive. Have you done immunology treatment without ivf? Should I wait 2 years to be seen? I can’t help but wonder what will happen to my already compromised fertility if I wait that long. My partner is supportive in a “what can I get for you” way but I am the only one that seems to be struggling with this. I have, up until this point, been quite positive and patient with all this.

Any and all advice appreciated. If you’ve made it this far, thank you.

I guess it depends what are your immune illnesses. However, some immune illnesses could be preventing you from falling pregnant; moreover, if you stopped taking that medicine? Who asked you to stop the medicine? Is it not safe for pregnancy? There are many safe in pregnancy.

If your immune condition is causing inflammation that may be the cause of not falling pregnant.

Reproductive Immunology is very expensive, most people go after recurrent miscarriages or after failed rounds of IVF, but if you already know you have a condition it may be worth it.

You could join the FB group "Reproductive immunology Support", lots of useful information from people around the world.

I do immune treatments with IVF but many doctors will treat you if you want to try naturally first.

Hi Olivie12

Thank you for your kind reply, I really appreciate it. I have rheumatoid arthritis. The medication I was taking before was a combination of things that would both be dangerous in pregnancy and some that would prevent ovulation. I wasn’t given an alternative and was too uneducated to ask. I just assumed because it wasn’t offered that it didn’t exist. The times in the last 2 years I’ve gone to them with flares they’ve prescribed naproxen which is also contraindicated. That was quite frustrating. I guess I also naively assumed that I could cope for a certain amount of time but of course it’s so open ended now. It was rheumatology that said to stop. I have a meeting with them in a few weeks to discuss starting something again, but something different I guess.

Thank you for pointing me towards the FB group it looks like a great resource.

Could I ask what you were tested for to indicate undertaking an immunology protocol? Thank you and good luck with your journey.

@Hopelessinseattle where are you based? We were referred for IVF last year and was told the waiting list was 6 months, but was actually only 5month in the end.

@CakePigeon30 We’re in the Aberdeenshire area. I’ve heard of long waits and did expect it but nothing like this.

Glad you managed to get taken so quickly.

@Hopelessinseattle I was already doing IVF but has recurrent miscarriages, the Fertility Specialist made general immune tests such as lupus, APS, karyotype, and many others, got like 10 tubes of blood for these tests, all was normal. Put me on blood thinners and aspirin for the next one and still had another miscarriage.

Found this Reproductive Immunologist and he gave me other many tests, he tests for cells amongst other things, WB, blood flow, etc. My issue is T cells and NK cells, just borderline acceptable but still causing the MC's.

You could try LDN 4.5 mg for your arthritis. That was one of my immune medicines and it's been great for inflammation, it regulates your immune system and it also stopped my chronic migraines which means it's an excellent anti-inflammatory. Totally safe in pregnancy, several FB groups about it too. Also, Plaquenil is safe in pregnancy, I googled and it says is used for arthritis,this is an immune medicine too and got it prescribed to regulate the immune system.

I would 100% be considering IVF in Europe. It's a lot cheaper, even with travel and accommodation, some of the clinics are world-class and the waiting lists will be much much shorter than 2 years. You could try googling ones with a speciality in immunology and see what comes up.