Turner Syndrome Support Group

Hiya,
One of the things about having a syndrome is that everybody is different and that in our case IF treatment is granted on a case by case basis.

In the UK, we have a clearing process to check if we can undergo DEIVF. The heart is one of those issues that is checked (I have a murmur) and the uterus is also checked because TS cases are diag at all different ages the womb could be infantile, so they have to check if your womb is big enough., Some TS patients wombs also have a formation problem, so rather than looking round, like an inflated balloon, it looks like a deflated balloon, all wonky.

I hope this info helps. I would get your medical team to give you answers on these issues.

Cheers

Natalie xx

Hi, I'm 27 and was diagnosed mosaic in June.

I was diagnosed because I'd 2 miscarriages and pushed the issue.

I don't have a bicuspid valvue.

I had an echocardiogram, which came back normal, and then I had an MRI or MRA on my heart, because I pushed for that too,
and that showed I have a thinning of the arterial wall.
The same arterial wall associated with the dissection issue.
Well my arterial wall isn't that thin it's 64% of what it normally would be.

This means they will only transfer 2 embryos at a time with my upcoming IVF with PGD which I am doing with my own eggs.
I start the IVF meds in 6 days.

I have also been in contact with other Turner's women, mosaic and full blown, some with bicuspid some without, and they're all having babies with egg donors, or with their own eggs where possible.

Always push for a second opion if the one you get sounds even near to a final or limiting one.

The MRI scans show way more than the echocardiogram, I would insist on this to see if you have a thinnig of the arterial wall.
It may be that this wall is too thin and that pregnancy in that case would be too dangerous to assist you with.

I know that is a huge loss, but do not allow anyone to ever decided on parenthood for you, there are otherways, less conventional and for some not an option they can pursue for personal reasons.
But this is your decision to make, and an informed decision is almost always a better one.

Good luck with your quest on getting more testing to confirm this prognosis.

I've had most of the tests done right after I was diagnosedin July, such as an echo, tons more blood tests, ultrasound of my kidney, a transvaginal ultrasound and most recently a MRA. Everything came back normal except for my numbers showing that my window for using my own eggs is closing fast. The reproductive endochrinologist said that even though the cardiologist cleared me that there is still a high possibility of aortic dissection and that I should not risk it. I am going to Hershey Medical Center to get a second opinion on Thursday.

As of right now we are not looking at IVF due to the high cost. I am still having my period, but it is extremely irregular. We are hoping to be able to get pregnant the old fashion way if I can get cleared. I am really trying to push the issue since my window is closing fast.