recurrent miscarriage Testing

[L2018]

So this morning I had a an appointment to see a gynaecologist, referred by my doctor to get the the bottom of my recurrent miscarriages. I cried when I left!! I had been looking forward to this for weeks! I know the underlying problem is not always found but I had hope. Never been to a more ridiculous appointment in my life, an absolute waste of my time.

So I sit down and she asking me questions, The ones I expected. How many, how far etc.. then I got the whole “well this sometimes happens” with a fuking shit load of satistics!! Telling me like I didn’t already know and hadn’t already been told a 1000 times. She then did an examination and said every thing is fine. That was the end of the appointment!!!!!! Like wtf !!!!
I was expecting blood tests and everything. Waste of Nhs money! Waste of my time.

I’m very upset right now. What’s the point in being referred for an appointment to try to get to the bottom of an issue and then have Fuk all done.

Should I go back to my gp and ask for another referral?

[burgerlady]

That's shocking- no wonder you cried! When I was referred I was sent for blood tests for blood clotting issues, karyotyping (partner also) and an ultrasound. That was after three miscarriages and I understand that to be NHS protocol. What hospital were you referred to?

[L2018]

Hi, thanks for your response.

I was sent to oldbury health centre. The one thing I wanted to be tested for was APS. When I told her is went straight in one ear and out the other. I told her that I had a family history of heart attacks and blood clots. My last pregnancy between 5-9 weeks I kept getting really bad pins and needles in my arms and legs. I would only have to cross my legs for 2 mins and I would have it. Even though I expressed all of this to her she didn’t seem to care. I also told her it took my nan 10 years to conceive, my mom has had 6 miscarriages and my two sisters have both had two each. So I brought up the thought that there could be a dodgy gene in there. She still wasnt interested.

I spoke to Tommy’s charity a couple of weeks ago and they are currently running a cell free dna study to look at genetics for causes of miscarriage. They have said they are willing to accept me aslong as my GP refers me. Maybe I’ll try this? X

[burgerlady]

I think you need to have a word with your GP to raise this - to me it sounds like you weren't seen at a specialist recurrent miscarriage clinic. Testing for APS and karyotyping is standard after three miscarriages I believe (or sometimes two if you are over a certain age). Being involved in a Tommy's study is great and very worthwhile, but I doubt you'd get any immediate answers.

Can I ask how far along you were in your miscarriages? Most very early miscarriages are caused by randon genetic issues. If you are further along there could absolutely be other things like APS at play. You should be investigated regardless.

Sorry you are going through this. The NHS is amazing but dysfunctional, and sometimes you have to take matters into your own hands to get the treatment you need. Maybe you could contact the coordinator of Birmingham Women's Hospital's recurrent miscarriage clinic and see if you can self-refer. Her contact details are online. Tommy's also does research from there.
bwc.nhs.uk/tommys

[L2018]

Hi,

I’ve had two miscarriages and both have been at 12 weeks. I did contact the women’s but they came back and said I still need a referral. The cell free study that I looked into was also based there, they also came back and said I need a referral. They did say that the don’t normally see people who have not had tree miscarriages but as I live so close they would see me. I might try and see my GP tomorrow x

[burgerlady]

Definitely speak to your GP then and push for the referral. You could also look at the uterine NK cells testing at Coventry, it costs £540 and you self-refer. Good luck and fingers crossed for you. X

[Tortycat]

Definately push for more tests on the NHS. I was referred after 2 early miscarriages (both at 5 weeks) and was found to have APS (though have no family history of any problems). I was told they usually only test after 3 m/c but i was 38 so maybe that's why they luckily tested early. Good luck

[ThePopAndCry]

Despite there being NICE guidelines about tests for recurrent miscarriage, it still seems to be a bit of a postcode lottery as to what tests your local hospital will do. I think you definitely need to push for a second opinion elsewhere via your GP and you have a right to do this under the NHS ‘choose and book’ system. I referred myself to Liverpool Women’s Hopsital via this as I too suspected I had APS - the were by no means my nearest hospital but I researched and found out they had a good rep and long history of treating women for rcm with clotting issues. Anyway, I just explained all this to my GP and he was fine about it. It’s no skin off their nose, so to speak. Often, I think, the bigger hospitals have more experience, more specialists in the field and are often involved in research etc. Keep doing the research and don’t take no for an answer! Good luck.

[princessbala]

I'm currently having my 5th mc :( and they've only just decided to refer me to the gynaecologist/ recurrent mc clinic, this fills me with dread, I already have a 2 year old son, I'm so worried they will just say well at least you have one and send me on my way ;(