Berkeley Parents Network: Polycystic Ovary Syndrome (PCOS)

Berkeley Parents Network

Polycystic Ovary Syndrome (PCOS)

Berkeley Parents Network > Reviews > Health & Medical > Polycystic Ovary Syndrome (PCOS)

PCOS and Conception

October 2003

This week, after trying to conceive for a year with no success, my doctor diagnosed me with polycystic ovary syndrome (PCOS). This hasn't come as a surprise to me. In the year and change since I stopped taking the pill, I've only had my period four times, so I've known for a while that something was probably wrong. In researching what could be preventing me from ovulating, I came across information about PCOS. It's symptoms fit well with what I've been experiencing so I've known for a while that this could be coming.

Since my diagnosis, I've been doing more reading about PCOS and I'm becoming more and more depressed about my chances of conceiving. All the articles I've read so far have had throw away lines in them that say things like ''One of the most devestating effects of PCOS is infertility,'' and then they go on to talk about other symptoms like acne and excess hair growth at great length. It's very frustrating, and instead of alleviating my fears about infertility these articles have only served to intensify them. What I want to see is a paragraph or two with statistic about the percentage of women with PCOS who do eventually conceive. Since I was a little girl, I've just assumed that I would have children some day and it never really occurred to me that something could prevent that from happening. The possibility of years of fertility treatments is just now beginning to sink in and the thought that I may never have a child is too scary to even consider just yet. Because my husband and I want a child so badly, we will pursue every option available to us to become parents but I hate this feeling of hopelessness that has come over me. I know I need more time to deal this information but it would help the process along to have a better idea about the reality of my situation. I guess I'm not really asking for advice here -- I'm just curious to hear from people who have conceived after having been diagnosed with PCOS. How long did it take you to conceive? What treatments did you try before something worked? Thanks!

Can't tell you a success story, as I'm still trying to conceive, with PCOS. Two things I can tell you is that Colin Smikle of Reprodctive Science Center is something of an expert in PCOS and conception (although there are many fine RE's in the area, so if you have one you like, you may not want to change) - and some of the best info on PCOS I got was from the National Women's Health Network. Their info packet was $8.00 and very helpful to me - http://www.womenshealthnetwork.org/clearinghouse/healthinfo.htm

For others with PCOS who may want to conceive in the future - one word of advice - don't assume (as I did) that if you are getting periods regularly that you are also ovulating regularly, or won't have difficulty conceiving.

Wish I'd Started Trying Earlier

Hi there. I was in the same boat about 3 years ago...now we have a 17 month old girl! My story is kind of long and involved to post here but the good news is that once we got on the right track, time to conception was actually pretty quick. I think the key is doing the research and making sure you are 1) informed and 2) ready to advocate for yourself. PCOS is a poorly understood syndrome and my experience was that different doctors tended to have strong ''beliefs'' about what would work rather than necessarily considering all the evidence. In particular, I ran into trouble with my infertility doc because I wanted to try what was then a relatively new and controversial therapy (but is now considered pretty standard, my Kaiser OB/GYN tells me). Anyway, there's lots of hope out there for you and increasingly women with PCOS are experiencing success without having to go down the road of much more expensive and complicated treatments such as IVF (which we did not have to do, by the way, & I had been someone who only ovulated 1-3 times a year). A great website is: www.soulcysters.com. I would also be more than happy to talk further with you. Best of luck! Lorelei

I don't know what the statistics are on incidence of pregnancy for women with PCO, but it was not a big problem for me, so I wouldn't worry yet, if I were you. Here's my story: I have PCO (diagnosed 20-some years ago) and I also have 2 children, 12 and 9. My periods were always very irregular (i.e., once early in my 20's I didn't have one for 2 years!). So, I was concerned that I wouldn't be able to get pregnant, and also started somewhat late (35-ish). Like you, I was not able to get pregnant for a year. After several diagnostic tests (endometrial biopsy and making sure fallopian tubes weren't blocked) my ob/gyn put me on Clomid, which I think you take for 5 days then stop, and you check daily for the next 10 days (urine tests) for ovulation. The first time was a low dosage (50 somethings a day) and it didn't work, so I did another round at the end of my next period (90 days later), and on the 10th day I ovulated, and got pregnant with my first child. Between a year and 2 years later, I got pregnant twice and both times had miscarriages (but had at least gotten pregnant which was heartening). Six months or so later, I was just about to start clomid again, but got pregnant and that was my second child. Since my pregnancies and after I was done breast-feeding, my periods got much more regular, and now are every 4-5 weeks. When infertility is mentioned as an effect of PCO, the definition of infertility is probably ''inability to conceive in the first year of trying'' or something like that. So, I urge you to keep your hopes up - I'm sure you'll be successful! anon

I have PCOS, and was able to get pregnant, with the help of injectible fertility meds. I don't know the percentages, but it definitely is possible. I recommed you go to http://www.pcosupport.org and search there, and also post to the iVillage PCOS board at http://messageboards.ivillage.com/iv- bhpcos Jennifer R

Get a copy of ''Taking Charge of Your Fertility,'' by Toni Weschler. I was also diagnosed with PCOS after trying to conceive for about two years, and was prescribed Clomid. But before I could take the Clomid, they (I was with Kaiser at the time) tested my husband's sperm count and found out that he was infertile too. Needless to say, we were both very depressed when we found this out because we had basically gotten married so that we could have children together. My husband started doing accupuncture and researching what type of diet and vitamins would increase his fertility. And I immersed myself in Toni Weschler's book. It teaches you how to check your cervix, cervical fluid and temperature every day to find out when you are ovulating. Because even with PCOS you may still be ovulating - I was. I just needed to be able to read the signs. I charted my cycles using Toni's methods for a few months, and the next time I was ovulating it was extremely obvious. The next thing I knew I was pregnant. No drugs, no in vitro, no fertility nothin'. Now we have two boys.

Oh, one other very, very important piece of advice: let go. You have to let go. Just enjoy becoming intimate with your husband, and spend lots of time dreaming of all the fantastic things you can do together without kids - we dreamed about travel all over the world, law school, learning the violin, taking Spanish lessons... Have fun getting to know your body and stretching your cervical mucus between your fingers. Good luck. It is a difficult process and I completely relate to where you are. I encourage you to give ''Taking Charge of Your Fertility'' a shot before you pursue other medical avenues. It's a much lower cost than any of the doctor/hospital fertility options; the only expense is your time and energy. anon

First of all, if you haven't looked at this website, it's excellent. It can answer a lot of questions. You might also want to find a posting board that deals w/ infertility and pcos specifically. Those women know everything about pcos!

http://www.inciid.org/faq/pcos.html

As for me, I have a 7 month old daughter and I have pcos. It took us 3 years to concieve, but we had other issues (tubal stuff). I was on metformin to help with the pcos. I assume they have offered that to you? It was scary to take, but I did it. We ended up doing IVF and got pregnant on our first try. I took metformin throughout the whole IVF process, but stopped once I was pg.

Pcos is not the end of your dream for a baby! I promise that you have a lot of options. I know how depressing all of this is, it seems like it should be so easy... Good luck! Annie

I have some encouraging words for you. I also have PCOS and now have a 2 year old and a 3 month old. I never get my period on my own - never. So, I knew I would have problems getting pregnant on my own. I went off the pill and tried to get pregnant for a year. Surprisingly I did get pregnant (even though I didn't have a period) and then had a miscarriage. A few months later I started on clomed to help me ovulate and after 3 months of clomed I got pregnant and delivered a healthy baby girl 9 months later. I figured that if I wanted to get pregnant again, I would need to take clomed again, but I was wrong. Big surprise when I got pregnant with my second daughter when my older daughter was 11 months old (still no period). I've heard lots of people go through a similar experience - once you go through a pregnancy, it's a lot easier to get pregnant again. Good luck. anon

Im sorry to hear about your diagnosis and your fears about having a baby. I do not have PCOS, but during 3 years of trying to conceive I met many women who have the disorder. I know from their experiences, that between annovulation and poor eggg quality, conception is not easy, but it is possible. I applaud you for looking for information, its the best thing you can do.

Assuming that at this point your biggest concern is to have a child I have two recommendations:

1. Make an appointment TODAY with a Reproductive Endicrinologist (RE) immediately. Do not rely on your OB/GYN and the inevitable course of Clomid to get you through this. There are 2 RE's I can recommend. Dr Ryzard Chetkowski at Alta Bates in Berkeley and Dr Susan Willman in Orinda. I suggest you meet them both and decide which you like better. Do not wait to do this.

(1b. Look into fertility benefits offered by your health insurance. If you do not have coverage for fertility you may still be able to get coverage for inulin reducing treatments some procedures like ovarian drilling if it is diagnosed as PCOS)

2. Visit www.inciid.org. There you will find the most amazing community of smart and funny women struggling with infertility. These people kept me sane most of the time, and completely understood the moments when not having a baby made me loco. In addition there are a ton of resources for gathering information, including fact sheets and boards where you can post to RE's for advice. Of particular interest are the following:

* PCOS CAFE ''Peer support for cysters'' http://www.inciid.org/forums/pcoscafe/index.html

* WAITING ROOM a fast moving board for women with all diagnoses http://www.inciid.org/forums/waitingroom/index.html

*PCOS FAQs from one of INCIID's many useful fact sheets http://www.inciid.org/faq/pcos.html

Again, regardless of your age please do not put off meeting with an RE as soon as you can. (and if you do stay with an OB GYN know that clomid is only only successful in 40% of women with your diagnosis. NEVER do more than 3 months of Clomid in a row and if it hasn't worked after 6 months total STOP for good as it can wind up acting as a contraceptive)

I send you the best of luck and my hopes that you have your baby sooner than later.

Boy have I been there! In my early 20s I had way too many ''close-calls'' (if you know what I mean) so that my suspicions were up about my chances of conceiving. Before my husband and I started trying, I went to my doctor with my suspicions, ''just to see'' and it turned out that I had every single symptom of PCOS, including a massive amount of cysts on my ovaries and very high insulin levels. I would get a period about every three months, and there was absolutely no predicting them. I thought I was doomed, but she recommended an OB (who unfortunately isn't practicing anymore, or I would recommend her: Dr. Laura Stachel) who had expertise in the area. She said that strength training (weight lifting, especially, in my case, heavy duty gardening) in addition to aerobic exercise and a low carb diet were good tools to try to combat the effects of PCOS. I also started using one of those digital ovulation detectors and my husband and I started trying, with very heavy hearts, thinking that we would be in it for the long haul. Well, my husband still says that he feels cheated, our son is now 21 months old, because I got pregnant after two months of trying! I was lucky that I didn't have to use any fertility drugs and to this day I'm convinced it was the strength training that did it, I mean, I worked HARD digging in the soil, pulling up roots, anything I could do to break a sweat. I'd highly recommend starting a strength training program, whatever you're comfortable with. When we plan to start trying again, I'm going to go right back to it. I really believe that that's what worked for me. Good luck!!! Jill

I have PCOS, and had very irregular cycles, not ovulating very often at all (perhaps 2-3 times a year.) I did have to go through fertility treatment. Clomid didn't work for me, so we moved onto injectable drugs. The good news is that using those, I got pregnant three times (bad news is that I miscarried all of them, but keep reading...) The thing about PCOS is that when you do combine it with the follicle stimulating drugs, you tend to get lots of eggs, so your chances of conceiving may be somewhat better than a non-PCOS woman on those drugs. Anyway, I ended up doing an IVF attempt after the three miscarriages, even though IVF wasn't really necessary in my case. My doctor simply recommended it as the highest success rate method, we'd tried everything else and were about to give up because the emotional toll was too great and I was getting too old. Again, on IVF drugs I responded really well and produced tons of eggs; we transferred two embryos to my uterus and 8.5 monts later I had twins.

So, you may have to use fertility drugs if your PCOS causes an ovulation problem, but on the bright side, you may respond really well to those drugs! Don't give up and don't despair. I've also heard that PCOS can be ''fixed'' by a low-carb diet or insulin resistance drugs; you may want to read up on that. We were in a hurry due to my age so those methods weren't appealing to us. Good luck! anonymous

Well, I have PCOS (though not the 'string of pearls' cysts on my ovaries), I have am currently 5 months pregnant with my second child. I would suggest two things: 1) Make an appointment with an RE (Reproductive Endocrinologist or RE) about TTC (Trying To Conceive); and, 2) Sign on the http://www.soulcysters.net . This is a great message board for women with PCOS. It provides a ton on information on PCOS, and it also puts you in contact with women at all phases of their journeys, i.e., TTC, PG, Mommies, etc. Feel free to email me with questions. Tunisha

Hi there I hope I can cheer you up a bit. I was diagnosed with PCOS a few years back (not in the East Bay) and was treated with clomifin. When at times it did'nt work and I still would'nt have my period for 2 months, I got progesteron pills to make it possible to start trying again. In the end I was reffered to an ultrasound every other day to see if I'm ovulating or not while taking the clomifin. And I was, not after 2 weeks but after 3 weeks, but there you go - I got pregnant that night and have an adorable 2.5 YO daughter. When we decided we wanted a second child, I was prepared. My new Dr suggested we give it a try ''the old way'' and try to keep truck of my periods for 4-6 months and then go from there. Not surprisingly they were very irregular - 2 weeks to almost 2 months apart. But guess what- I am pregnant now without any medication this time. I guess it changes from each case, but yes, it is possible to have a child despite PCOS. Wish you all the best and good luck! I.

I am sorry to discourage anyone but I personally dont think it is possible to conceive on your own if you have PCOS. The chances are even low with assistance. I suggest that you find a RE with experience in PCOS and not waste your time with a OBGYN. ellia

PCOS is a complex and multifaceted condition. Clearly some women with PCOS have been able to concieve -- our ancestors! It is genetic, after all. And keep in mind that it is very common and highly underdiagnosed -- I believe something like one in 10 women have PCOS!

In my case, I had good results with both alternative medicine (mainly acupuncture) and with conventional infertility treatment; the combination resulted in our first child, who is now 3. I just recently had my first non- provera-induced menstruation since before Wilfrid's birth -- after 8 months of acupuncture. I hope that it means I ovulated as well, as I am trying to get pregnant again. My acupuncturist, also a naturopathic doctor, is Carl Hangee-Bauer at SOMA acupuncture in San Francisco. He is fantastic -- kind, careful, and very knowledgable, especially about PCOS, as he has worked with me for so long!

I've also tried extensive therapies of herbal medecine, with negligible results. Low-carb/balanced protein diets have helped; Metformin did not.

Oh yeah, my OB/GYN is also fantastic: Laura Statchel in Berkeley. She has PCOS herself, and was able to concieve, I believe naturally.

Feel free to call me if you want to talk further -- after 20 years of researching and experiencing PCOS I have a lot of info to share! Also try the national support organization at www.pcosupport.org. Good luck! cturrell

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