Q & A on PCOS
Compiled by Kota Discussion Group

Editor's Note: On our small discussion group online (less than 30 members total), we have at least 5 moms (though I think there are a few more than that) who have had stillbirths AND who are dealing with PCOS. Though medical folks will tell you there is no way to prove that PCOS has anything to do with stillbirth, I think this "coincidence" is insane! Anyway, the following questions were asked on the group discussion list. Four of the moms answered. Here's a bit of their stories:

1) When and how did you find out you had PCOS?

It hasn't been formally diagnosed but my obgyn said that women with diabetes often show PCO symptoms - which I do. I've had anovulatory cycles since my loss. I was also anovulatory before I was pregnant with the baby that I lost, but I was put on metformin a month before he was conceived. That seemed to be enough at that time to get things going. ~Nisa

I found out last April - over six months ago. My GP had tested my insulin levels but never along with my glucose levels. So for about 6 months prior to being diagnosed, it was being "ruled out" supposedly. It wasn't until an online friend suggested I have a fasting insulin/glucose test that I was able to ask my doctor about it and subsequently test positive for Insulin Resistance. I do not have cystic ovaries, however. I started on Metformin in late April and got AF naturally about 8 weeks later. ~Krista

I suspected I had PCOS after we lost Amanda and I wasn't getting pregnant again, so I started researching on the Net. I learned all about it, and then went in to the Dr. and asked him to check me for it. After a Laparoscopy, the Dr. confirmed it. ~Steph

Well, apparently I was told prior to my pregnancy that I had PCOS. But it was definitely not impressed upon me that there was anything special that needed to be done during my pregnancy. They tested for diabetes like three times and nothing. And then my son died -- stillborn -- I was told it was a cord accident. And then I couldn't lose the weight. And then I couldn't get pregnant again. Eventually I discovered Thatcher's book on PCOS and thought to myself, "hmmmm?" Went to my doctor - different one than the one I had when my son died because my insurance had changed, etc -- and they tested for Insulin Resistance instead of diabetes. Sure enough. That doctor did make some comment to me like, "Losing weight will solve some of this for you." I don't think she fully appreciated how stupid that comment was. So I suggested Thatcher's book to her. Then I began reading on the internet and asking other bereaved moms about PCOS. I AM ALARMED AT THE NUMBER OF STILLBIRTH MOMS WHO HAVE PCOS -- GET A CLUE PEOPLE!!! IF YOU ARE IN THE MEDICAL FIELD, HOW ABOUT SOME RESEARCH ABOUT THE RELATIONSHIPS BETWEEN "ACCIDENTAL CORD ACCIDENTS" OR UNEXPLAINED STILLBIRTH AND PCOS????? COME ON PEOPLE, I'M NOT A MEDICAL PROFESSIONAL AT ALL AND I SEE SOMETHING HERE!!!!!!

2) How has the PCOS affected/effected your TTC?

I've been unable to conceive again for the past 13 months ~Nisa

Hmmm. Does everyone have time to listen to all of this? ;o) Since my pregnancy with Madison was naturally conceived and I was borderline for gestational diabetes with her, it is thought that my IR is due to my pregnancy with Madison. So, needless to say, this secondary infertility has sucked big time. It has affected my ttc in that for 9 months after starting ttc I did not have my period naturally, Clomid had no effect and I felt I was playing with no cards. I have not been able to lose my pregnancy weight at all. Once we started on Metformin and my periods became "normal" (averaging between 31 and 38 days - which is still a little long), I started Clomid and still have not had luck with ttc. We even did an IUI (artificial insemination) one cycle and that was a failure. ~Krista

It has effected our TTC in the fact that we have been unable to concieve for 3 1/2 years now.....I have secondary infertility. It has made TTC much more stressful and tedious with all the meds I have to take! Every time we have sex, I wonder.....is this the time that worked?? ~Steph

Ha. That's a joke. I'm a working artist. When I quit the 9 to 5 world I lost my last insurance which had been shitty coverage at that. Now I have no insurance. So the hopes of dealing with PCOS so that I might even get to the TTC discussion are nil.~Kara

3) Can you tell us a little about your loss? Has anyone said that the PCOS may have had something to do with the loss?

I had a placental abruption at 17 weeks gestation - no one has mentioned any link between that and PCOS. ~Nisa

Don't think my PCOS had anything to do with my loss, but what I find hard to believe is that there are so many unrelated issues that are rare. How can they NOT be related? Pregnancy Induced hypertension, DVT (deep vein thrombosis) in my leg prior to pregnancy, blood clots in placenta, normal pregnancy with loss ocurring at full term, insulin resistance........~Krista

Our daughter Amanda Joy was stillborn at 31 weeks gestation. She died because she had a 2 vessel cord and it twisted and cut off her life supply. No, PCOS had nothing to do with the loss. ~Steph

Hmmm, let me say this again. I had a stillborn son after a perfectly healthy pregnancy. He was completely viable, nothing else wrong with him except that he was dead! Doctors insist that there is no corrolation between PCOS and pregnancy loss or stillbirth. And yet in a random group of 30 bereaved parents, we have at least FIVE women who have lost children AND have PCOS. Yeah, right, no connection whatsoever. Uh-huh. And I have a golden cow to sell you, too. ~Kara

4) Have you taken any meds for PCOS? Have they helped with the TTC? Have the meds affected/effected other areas of your life?

I'm on a combo of metformin and glucophage XR as well as Clomid. I was in denial for many months so I wasn't testing my blood sugars. Recently, though, I've started testing again and my blood sugars are way up indicating that the metformin/glucophage combo is not meeting my needs. Clomid has helped me to ovulate more consistently, but I'm not pregnant yet. I have found that Clomid makes me very irritable at times. I am on my fifth and last cycle of Clomid. ~Nisa

I am on 1500mg Metformin. It has helped with my cycles. I have regular periods and am pretty sure I am ovulating. It's great news but doesn't do any good if I am still not getting pregnant (sorry for the negative jabs). ~Krista

I am on Metformin right now. I have been on it for 2 weeks, so no answers....YET. This med makes me nauseated, and have stomach cramps and some diahreah. ~Steph

Can't afford health insurance. I'm so high risk now after stillbirth, PCOS, and having asthma that no one will cover me for insurance ever again anyway. So I can't even see a doctor about this stuff, let alone find out what drugs to take -- and then how would I pay for those anyway? Health equals Money in this country -- hell, all over the world. So, I can't really say what meds would do. ~Kara

5) Have you seen your regular doctor about this? Or a specialist? How did you end up working with the doctor you have? Did they know about PCOS before treating you? Did you end up educating your doctor at all? If so, how?

Yes to my regular doctor and to my obgyn. I switched obgyn practices after my loss and I feel like my current doctor is very upbeat and optimistic as well as compassionate. I don't think my regular doctor is up to date with PCOS info, but my obgyn seems to be. ~Nisa

Only my OB who prescribed the Metformin. My insurance doesn't cover infertility and I am starting to investigate a way to see a specialist.~Krista

I went to a Dr. recommended by a friend who suffered from primary infertility for 7 years, then finally had a successful pregnancy and now has a beautiful 3 year old daughter. This Dr. is an OB/GYN and fertility specialist. He does know about PCOS. He was wonderful on my 1st appointment and spent about an hour talking to me and learning my past medical history. ~Steph

Again, no insurance. No health care. No doctor. ~Kara

6) Have you found online support for PCOS, TTC, and infertility issues? Informational sites? Group support sites?

I just recently joined the soulcysters.com boards and I have also been frequenting the a couple of boards at Fertility Friend. ~Nisa

Found a lot of support at INCIID (pronounced "INSIDE")....http:www.inciid.org

Oh yes!
I have found some awesome sites! Here they are:

1. Message Board for Loss and PCOS

2. PCOS 101.

3. PCOS Iformation Center

4. Resolve- The National Infertility Association

5. Tarra's PCOS page and LINKS to more info!!

6. WebMD-can find answers to questions about PCOS, TTC and Infertility

7. Low Carb seems to be the way to go when you have PCOS

8. PCOS email support groups

9. Soul Cysters-message board, articles etc all about PCOS

10. Scrambled-one woman's journey thru PCOS

11. Woman's Reproductive Health Issues- couple pages on PCOS

12. American Journal of obstetrics and gynecology (search for PCOS)

13. INCIID-PCOS frequently asked questions

14. Helping Women with PCOS


16. Callilil's PCOS pages

17. PCOS and Carbs

18. Center for PCOS

19. A personal PCOS story and Journal

20. The Center for Applied Reproductive Science- PCOS pages

21. PCOS resources and support (lots of links)

22. Brianna's Home Page-story of PCOS

23. PCOS should REALLY ed Poly-Cystic Ovary/Excess Androgen Production /Adrenal Hyperplasia / Insulin Resistant / Hyperpipidemic / Often Overweight / Anovulatory /Hirsute / Sometimes Acne" Syndrome.

24. PCOS support site

25. This pages is FULL of all the info you could ever want to read!

26. American Infertility Association about PCOS

27. Kjenn's PCOS Corner

28. "Normal" ovary picture VRS. a PCOS ovary

29. Beth's PCOS pages


AND Stephanie who gave you all those links above also has an online discussion group for ttc and offers lots of PCOS info there, too. Check it out: Path of Hope

7) Please add anything else you'd like about your experience!!

As a last ditch effort, of sorts, I'm now going the low-carb route. It's only been a couple of days so far, but I'm hoping this is what will work for me. ~Nisa

If you are a medical professional, if you are in a position to look at doing research, can you PAH-LEEZ re-read this article? Can you honestly ignore the "coincidences" of these stories of loss? Who the hell is going to do the research, get the answers, and help people BEFORE the children die?


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