roseanne

I may have made a break-through in finding out why this (two losses) happened to me -- which in a way is all the more upsetting because it means they may have been preventable! But gives me a game plan for the future.

I kept seeing "PCOS" mentioned here, and looked it up and found that it used to be called Stein Leventhal Syndrome, which I believe my mother was diagnosed with. As far as I can tell (please correct me if I'm wrong!) there's not much you can do about PCOS if you are ovulating, other than try to keep your weight down (and it is, of course, hard to lose weight if you have PCOS). But the first step is to get someone to check to see if I have it.

Next up, my dad has had recurrent deep vein thrombosis - blood clots, in his leg -- never thought that might be relevant, but I stumbled upon information on "thrombophilia," various clotting disorders which can be inherited and can lead to problematic clotting in pregnancy (which I had the first time). There is some treatment for this, involving baby aspirin and heparin, which appears to help in pregnancy outcomes.

So I may have it coming at me from both sides, but I now know questions to ask (which the specialist I saw didn't bring up at all!) before trying again.

I'm posting this to inform people that the common lines from doctors, "there's nothing you could have done" and "you have an excellent chance of a successful future pregnancy" deserve a little more scrutiny. These are at least two conditions women who miscarry (or all pregnant women, for that matter) should be aware of as far as their family history goes, because your doctors may treat your pregnancy differently.

Any more information on thrombophilia and PCOS (without difficulty conceiving, in my case) would be greatly appreciated.

Smiler13

Hi Roseanne,

Sorry for your losses. Yes, I have heard that line from doctors too and it isn't at all helpful! Grrr.

With your family history you may be able to be referred to a specialist for tests. I had tests done privately at St Mary's, who were great, for me it was definitely worth the money (about £1000, there is a "price list" that you can get before deciding whether or not to go private). Before my appointment I filled in an extensive questionnaire including on family history etc. There was none of that with my local (large, London) trust.

There is a lot of useful information on the website of the Royal College of Obstetricians and Gynaecologists, e.g. a leaflet about PCOS http://www.rcog.org.uk/womens-health...ycystic-ovary-
syndrome-what-it-means-your-long-term-health

and recurrent miscarriage investigations and treatment http://www.rcog.org.uk/womens-health...age-green-top-

Would also recommend Prof Lesley Regan's book on miscarriage, this also discusses PCOS and is good on the science, which despite biology lessons at school and having given birth I had no clue about!

todteach

Hi roseanne.

I have also had two losses. One at twelve and one at ten.

I have been to see a gynecologist who requested several tests for me (blood tests, saline infusion sonogram and endometrial biopsies). He has told me that I have low progesterone. Next time I get pregnant he will prescribe hormones for me to take.

Now what concerns me with his so called "diagnosis" is that he hasn't told me why I have low progesterone. Nor does he seem to be bothered by any of my other symptoms. Since I started my periods they have always been intense with severe cramping throughout my whole body. At the middle of the month I also suffer from these cramps which would be at the time of ovulation. I have hair loss. I am growing hair in places that women shouldn't. I get faint and dizzy often after eating sweets, to a state of feeling off balance and drunk. I have extremley oily skin and breakouts. I have dark circles under my eyes that I've had since I was a child. Although I am not overweight (weigh 135 lbs at 5ft 6'') my body shape is interesting: heavy on top and tiny on the bottom. I have told him of these symptoms and he doesn't seem concerned at all. He told me that (with the mid cycle cramps that put me to my knees) that maybe I'm releasing more than one egg at once, with a laugh (not likely as both pregnancies were singletons not multiples). These are all indicators of PCOS. And I've had these symptoms since I started menstrating eighteen years ago. (wow all of a sudden I feel really old)

I think what I'm trying to get at.....after this long ramble is that even specialists are sometimes just looking for an easy answer to get you out of their office too. I have been seeing this gynecologist since the end of february this year, and he has told me to go home, get pregnant, and come back to see him. (you know I have been pregnant before-TWICE and they both ended in miscarriage. It's now his job to find out why for me) He told me if I "miscarry again them OH WELL atleast we're trying".

I have since gone back to my regular doctor who has scheduled an ultrasound for me to determine if I have cysts on my ovaries. Finally!! Frustrating, but atleast we're finally getting somewhere. Also I think I've decided that I'm done with my current gynecologist and I've asked her for a referral to the fertility clinic, due to his poor bedside manner. I asked her what the course of action would be if I am found to have cysts. She told me that I would be put on Metformin to regulate insulin (it's a medication used for diabetics), which will prevent miscarriages. Many women with pcos will have successful pregnancies from taking metformin alone.

Good luck to you roseanne, I hope you have found out what is happening with your body and that you are on the road to finding a happy ending.

roseanne

Thanks. After the first lost I was referred by the OB/GYN to a perinatologist (maternal-fetal specialist, i.e., specialist in high-risk pregnancies) - I guess because it was a second trimester loss. I'm in the U.S., so they may break down the specialists' responsibilities differently here. But no matter where you are, you really have to be your own advocate and find out what questions to ask.

I talked to my dad, sounds like he'd help pay for genetic testing. He pointed out (and I'd already seen this on-line) that in addition to health insurance issues, I might want to get anonymous testing for life insurance purposes (life insurance can be harder to get or more expensive if you have a genetic marker for clotting problems!).

I'll check out those websites, thanks Smiler.

Todteach - I'm 35 myself, with the big on top small on bottom shape. Only really gained a lot of weight (20-25 extra pounds) in the last few years. My mother never had a miscarriage, but she had all her kids by 31, so had youth on her side. She blamed her weight gain on my younger brother, but it happened at the same age mine did. I do have some of the other symptoms, though not as severe as yours sound. And my mother's mother was diabetic...

I'll definitely insist on a closer look at my ovaries once my body is back to "normal".

todteach

I'm 30 yrs old.

My mom had a miscarriage in between my sister and I. She later suffered from cysts and had a complete hysterectomy by the time she was thirty one. Her body shape is the same as mine?!?!

roseanne

well, my mother's mother had her 4th child at 42... so you never know!

sk100

Thank you for posting this. Have you read about Protein C deficiency? That is a genetic condition linked to clotting issues. Clotting disorders in pregnancy are very easy to treat with asprin and heparin and so please don't think the odds are stacked against you. You are fortunate that you have discovered the likely reasons for your MCs.

Re PCOS - maybe you should research alternative therapies such as fertility accupuncture.

roseanne

Thanks - I just heard from my mom - she was never actually diagnosed, just suspected of having PCOS, so that's still up in the air. (She also says she's just overweight because she eats too much -- always a possibility!)

When I say the deck is stacked, I certainly don't mean it's hopeless - what I've seen about treatment for clotting problems definitely looks promising. But I think when underlying conditions go undiagnosed, this is much harder, with much more heartbreak than there needs to be.

So I have developed some goals for the next few months, before trying to conceive - get a full exam, including endocrinology and looking into PCOS, and genetic testing for a clotting problem. And losing 10 pounds, at least (this seems to be the hardest part for me to accomplish - but as my mother says, it's that eating-too-much part that gets in the way!)

So at least I have a road map. And as my mom said, "In the meantime, try to concentrate on the upsides in your life and stay strong and healthy."

hb1

Hi, I have PCOS, I went to the doctors in May and said we were going to try for a baby and to check about any problems - they just said to stop taking Metformin.

Then - mid November I had a positive pregnancy test - the clear blue with conception indicator - it showed 1-2 weeks since conception so the Doctors would date this 3-4 weeks - we were so excited and called the doctors straight away. The receptionist said I didn't need to see the doctor and gave the midwives telephone number - I called and arranged an appointment on 8th December.

During this time I started to research PCOS and pregnancy incase I needed to ask the midwives anything - I was shocked to learn I had a 45% chance of miscarriage - even higher than someone who had had 2 recurrent miscarriages (30%). On the day of my midwives appointment I decided to take the clearblue test again to check my HCG level had increased - it hadn't ( it may have gone up and then decresed ) - I went to my appointment with my fiance - I explained about the conception indicator not increasing and they referred me straight to the early pregnancy unit. I had a scan which showed what looked to the sonographer like lots of blood clots so they did HCG tests evey other day - after the test on the Friday it had gone from 86 to 40 then by the Sunday down to 6 - during this time I had my miscarriage - I was devasted but glad I had taken the clearblue test again - at least I was prepared when it happened.

Today I went to the doctor with my other half as back up and with a bit of negotiation I got referred to a gynocologist - one of the GPs didn't think there was proof that PCOS could cause miscarriage, luckily another GP there was more open minded. From all the research that I have done there are plenty of studies that show that PCOS can cause problems on many different levels - from a luteal phase defect which can be solved by progesterone supplements within 48 hours of ovulation ( no later ), to low progesterone during the first 3 mths before the placenta starts taking over production. There is also discussion that the insulin resistance suffered by ladies with PCOS ( also causing weight gain ) can make successful implantation more difficult -that can be aided by metformin. Also there are more chances of other hormone inbalances, and also hormones affecting the release of eggs ( releasing to early or late in the cycle ) and so affecting egg quality.

I mostly feel let down that this wasn't addressed when I first went to the doctors - I doubt they are even aware or accept that there is additional risks with PCOS - it seems that the UK medical industry sees it more as a fertility issue than a high risk pregnancy issue - this is how I feel it should be treated - it might help other women going through the emotional devastation that miscarriage brings. I will be fighting for the care that I deserve going foward!!!

I know they say people need to have 3 miscarriages before they will investigate for an underlying problem ( which I feel is wrong to start with ) but I already have a condition which increases my risk of miscarriage from 15% to 45% - surely this is high risk and should be treated as such from the onset. There needs to be a lot more research and consolodation of approach by the medical world.

Sorry to rant!

Lol78

OMG! That is so informative. Can you tell me where you got your information from? I have been diagnosed with PCOS although I do appear to ovulate. My last pregnancy was a chemical and my acupuncturist told me that the PCOS made me more susceptible to miscarriage - I was unsure because I thought it was just ovulation that was a problem. I assumed because I was ovulating, the PCOS wouldn't be an issue as far as TTC was concerned.

Anyway, I would really like to arm myself with some information before going to the doctor to ask for a referral. I haven't even bothered because I assumed they wouldn't do anything as this is my first miscarriage (althoug second loss but I can't blame PCOS for that).

I would really really like to know more about this. I'll be reading up.

Thank you all.