Where do I turn?

[ALifeMoreCurious]

This week I received a letter from my local recurrent miscarriage consultant telling me the Scottish Health Board have refused to refer me to Prof Quenby in Coventry. I’ve had six pregnancy losses, done about as much as I can through the NHS, spent a small fortune on testing and treatment over the last three years, and am struggling to know how to move forward. I’ve been told I have a 40% chance of carrying a baby to term. Those odds don’t feel great when we’re also in the less than 1% of couples who experience so many losses.

I’ve been told I can see Prof Brosens and pay for NK cell testing (I’ve had the single biopsy but apparently it’s a double biopsy which they now recommend), but he won’t discuss any trials with me or anything beyond that specific test. I’ve also been advised by a private clinic to have DQ alpha and LAD testing as we’ve had other immune and sperm testing and they think there’s a histocompatibility issue.

I feel like I’m at the point where couples either give up, or try and muster whatever strength they can find to throw at this. Even if you could just be kind to me I’d appreciate any support. At the end of my tether. I know this is a tough one.

[LASandOtto]

Hey OP

Read your post and just wanted to send you some love and strength. What an awful time you've had and I'm so sorry for your losses.

I've had two MC and I paid for private NK cell testing in London where we are based at ARGC. Mine came back as elevated in certain areas and I've been having IVIG's every couple of weeks. So far so good, I'm now in my 3rd pregnancy.

I've not had any NHS tests as I was refused any after two but I've read on here from others who've said that the tests are fairly basic. I hear you've done your own private investigations.

Have you also tried a referral to Prof Lesley Reagan at St Mary's? Or contact Tommy's, they'll support you and maybe even have options to include you in some trials? They are so amazing and supportive and a call to them may help?

I'm really sorry that you're suffering, it's a bleak and lonely time. I think there's always answers to be found eventually, it sometimes takes a long time and a lot of tests and money thrown at it to get there, sadly. Don't take no for an answer and keep going! X

[ALifeMoreCurious]

@LASandOtto thank you for replying

I visited a clinic in London two years ago and had all the Chicago tests. NK cells in uterus had been negative but in blood they came back very slightly elevated. With some lifestyle changes I tested negative six months later and my partner also turned around sperm DNA issues in that time.

As we have a clotting pattern to our losses (but haven’t positively for clotting issues) we agreed that next try we’d go for aspirin/heparin. Then we lost that baby at 10 weeks in October. It was such a blow and while we weren’t quite as far on as when we lost a baby midway through pregnancy a few years ago, we were ahead of the earlier losses, and even waved goodbye to the EPAU midwives! I had really started to believe this baby was coming home.

I had the whole battery of NHS tests when we lost our son, and some of the tests were repeated after our fourth loss, which is when I visited Tommy’s in Birmingham. They suggested the above protocol and now the advice is to add in progesterone and steroids in case of other immune related issues (I have fibromyalgia and am being investigated for other conditions - probably all stress related tbh).

So I feel like my options are to follow the advice to add progesterone and steroids, or to go back to private clinic and do the DQ alpha and LAD testing. They’ve also suggested another hysteroscopy which I’ve had before, just to give the uterine environment a fresh start - they do implantation cuts to help regenerate stem cells in the lining. Or I suppose we could just do all of it. I think I’d be worried about going into another pregnancy without this additional private testing.

I’m a few months off making decisions as I just want to get myself back in a healthier police. My body and mind are pretty tired x

[LASandOtto]

I'm really sorry, you really have been through a lot!

I'm also on steroids and progesterone - I'm sure you've also seen the research from Tommy's on the PRISM trial and that it does seem to give good results for those with 3 miscarriages or more.

I do hope you feel the strength to go on, some days are so sad and lonely, and feel like there's no hope or light at the end of the tunnel - but there's always a glimmer that there is a happy ending, or hope for one at least, and may this keep you going!