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!!!!!!
~Kara
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
~Krista
Oh yes!
I have found some awesome
sites! Here they are:
1. Message Board for Loss
and PCOS
http://pub30.ezboard.com/fbabyminefrm11
2. PCOS 101.
http://www.pcosupport.org/medical/whatis.php
3. PCOS Iformation Center
http://pcos.itgo.com/
4. Resolve- The National
Infertility Association
http://www.resolve.org/main/national/index.jsp?name=home
5. Tarra's PCOS page and
LINKS to more info!!
http://www.angelfire.com/nd/matthew777/PCOS.html
6. WebMD-can find answers
to questions about PCOS,
TTC and Infertility
http://www.webmd.com/
7. Low Carb seems to be
the way to go when you have
PCOS
http://www.low-carb-diet-plans.com/
8. PCOS email support groups
http://www.pcolist.org/
9. Soul Cysters-message
board, articles etc all
about PCOS
http://www.soulcysters.com/
10. Scrambled-one woman's
journey thru PCOS
http://www.scrambledthewebsite.com/
11. Woman's Reproductive
Health Issues- couple pages
on PCOS
http://nichollsvi.tripod.com/
12. American Journal of
obstetrics and gynecology
(search for PCOS)
http://www2.us.elsevierhealth.com/scripts/om.dll/serve?action=searchDB&searchDBfor=home&id=ob
13. INCIID-PCOS frequently
asked questions
http://www.inciid.org/faq/pcos.html
14. Helping Women with PCOS
http://www.pcos.net/
15. OBGYN.net PCOS PAVILION
http://www.obgyn.net/pcos/pcos.asp
16. Callilil's PCOS pages
http://pcos.freeservers.com/
17. PCOS and Carbs
http://oak.cats.ohiou.edu/~cp391990/carb.html
18. Center for PCOS
http://centerforpcos.bsd.uchicago.edu/
19. A personal PCOS story
and Journal
http://www.angelfire.com/on2/pcosinfo/
20. The Center for Applied
Reproductive Science- PCOS
pages
http://www.ivf-et.com/pcosstate.html
21. PCOS resources and support
(lots of links)
http://pcos.freeservers.com/links.html
22. Brianna's Home Page-story
of PCOS
http://www.geocities.com/HotSprings/Spa/4981/
23. PCOS should REALLY ed
Poly-Cystic Ovary/Excess
Androgen Production /Adrenal
Hyperplasia / Insulin Resistant
/ Hyperpipidemic / Often
Overweight / Anovulatory
/Hirsute / Sometimes Acne"
Syndrome.
http://www.infertilityphysician.com/androgen/pcos.html
24. PCOS support site
http://www.pcos-support.org/
25. This pages is FULL of
all the info you could ever
want to read!
http://hometown.aol.com/cystershell/pcoshome.html
26. American Infertility
Association about PCOS
http://www.americaninfertility.org/pcos/pcos_center.html
27. Kjenn's PCOS Corner
http://www.geocities.com/BourbonStreet/3032/pcos.htm
28. "Normal" ovary
picture VRS. a PCOS ovary
http://www.geocities.com/BourbonStreet/3032/ovary.htm
29. Beth's PCOS pages
http://www.airstreamcomm.net/~mickbeth/pco.htm
~Steph
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
~Kara
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?
~Kara
