Today I’d like to welcome my lovely friend Karin of Betty Crotchitt. She has some invaluable information and experience to share and I can’t thank her enough for choosing my little ol’ blog to share it on! Polycystic Ovary Syndrome is one of the most prevalent endocrine disorders affecting childbearing aged women. It is also under-diagnosed and may be responsible for %70 of fertility challenges with regard to ovulation. Not only can PCOS lead to fertility issues but also to other diseases and disorders that can affect one’s quality of life. Awareness of PCOS is essential and Karin’s story touches on so many important symptoms and experiences that women who are planning (or not) to have children may encounter. So, without further ado,..
About 3 years ago, I was diagnosed with mild PCOS (Polycystic Ovary Syndrome). Characterized by a hormonal imbalance, PCOS can result in unpleasant symptoms, such as acne, thinning hair, weight gain and difficulty losing weight, excess body and facial hair, infertility, and even depression.
Needless to say, the diagnosis explained a lot about my struggles through high school and early adulthood. It was only after I stopped taking hormonal birth control pills that I realized how much they had been helping me manage my symptoms. It was my choice to become a mother, though, which really forced me to face PCOS head on; I had no idea how much trouble it was going to cause.
Like most young women, becoming a mother is something that I had thought about for a very long time. After meeting and marrying Mike, I knew I had a partner with whom I could start a family. We started trying to get pregnant in early 2009. I had quit smoking, we both had stable jobs, and we already had the house and dog. Having children was the natural next step. I stopped my birth control pills and prepared to get pregnant.
I expected it might take a month or two, but after a few months with no results I began to pay more attention to my cycle. I bought ovulation test strips and a basal thermometer. I tracked my cycle and scheduled our baby-making on a calendar. Every month, I carefully abstained from drinking while waiting (and waiting and waiting) until my period would start and I would start the process all over. I was still pretty confident each month that it would happen, though. When the ovulation strips stopped giving me a positive reading, I didn’t think much about it at first.
We had been trying to conceive for almost a year before it was suggested to me that I might not be ovulating. Mystified that this was even possible, I went to see my doctor and had some bloodwork done. The result was PCOS. I didn’t know much about it, but as I searched for answers, it became clear that conception might not be as easy as I had expected. In the face of this realization, I confess I cried a lot, and I even tried to prepare myself for the possibility that I might not be able to have children.
My doctor prescribed Clomid, a medication used to induce ovulation. I clearly remember the first time I used it. I didn’t know ovulation could be so painful, but I suppose there was no question that it was happening now. It took a couple tries, but the Clomid proved effective, and I was finally pregnant. In the excitement that followed, I dismissed my PCOS. I was pregnant, which was all I wanted at the time. I had no idea those four letters were going to reassert themselves again so soon.
Pregnancy was a great time for me – I had never felt healthier, my skin looked great, my hair wasn’t falling out quite so much. I can honestly say I enjoyed being pregnant. Childbirth wasn’t so bad, either. Seriously. When I look forward to having another child in a couple of years, the prospect of squeezing an 8 lb baby out my vagina doesn’t concern me in the least. What does concern me is breastfeeding.
What could be more natural than breastfeeding? You have a baby, you have boobs, put them together, and the rest is cake, right? Wrong! Breastfeeding is challenging for most women in some way. No one tells you how hard it is to do what appears to be a simple, primitive, and natural thing. Okay, okay – they actually do try to tell you, but no first-time mother-to-be can really understand the trials of breastfeeding until it starts. (I certainly didn’t.) Too much milk almost drowning your baby, cracked and sore nipples making it painful to nurse, mastitis (ouch!), thrush (ew!), the list goes on. My problem was low milk supply.
I will never forget the day we went in for our 3 week appointment. I practically held my breath as the midwives weighed little Gus. He hadn’t been gaining weight well, and I knew that if he had still not gained enough weight, we had a problem. When the numbers came up low, I lost it. How can a new mother cope with the reality that she hasn’t been giving her infant the sustenance he needs? Inadequacy doesn’t even begin to describe what I felt. Despair, pain for my hungry baby, guilt over all the times he had cried and cried, the poor little dude not even understanding what was going on. It was very hard, and I think it was days before I stopped crying.
Here again, PCOS caught me by surprise. Meeting with a lactation consultant, I learned that PCOS is a major risk factor for low milk supply. The reasons for this are not entirely clear. It is thought that early onset PCOS can result in underdeveloped breast glands. High androgen levels may also interfere with the hormones involved in lactation. Insulin resistance (more about this later) may also affect milk production. Add in the myriad other things that affect milk supply, such as stress, sleep deprivation, inadequate hydration and nutrition, and infant habits, and we have a problem.
Mike and I pretty much spent my entire 3-month maternity leave on this problem. Nursing and pumping every two hours and supplementing with formula. (Manipulating the tube of the Supplemental Nursing System was a challenge in and of itself.) Fenugreek and oatmeal every day. Food and water (and water and water). Weekly weigh-ins at the local support group. I even did a trial of a medication called Reglan (metoclopramide). When Gus was 12 weeks old, we had finally increased my supply enough for Gus to breastfeed almost exclusively. He still had some formula every day, but I was happy with the outcome. We had to work hard for this outcome, though, and I couldn’t have done it without Mike’s support and a lot of outside help.
I was able to breastfeed until Gus was 2 years old, and if it was up to him, we wouldn’t have stopped even then. In the end, breastfeeding was such a success that it would be easy to forget about PCOS and all the trouble is had caused thus far.
“Breastfeeding will help you lose the baby weight. The pounds will just melt away!”
After I got pregnant, I heard this so many times. For many women, it’s true, and I am very happy for those women. But I am not one of them. Gus is over two years old, and I’ve still only lost 5 pounds since he was born.
Now, if you know me, you know that I do have a sweet tooth. Despite that, I do eat a pretty reasonable diet. We all do, since we use diet to manage Mike’s Crohn’s Disease. We rarely eat pasta or starchy foods, ice cream and pizza are a special treat, and processed junk food is only for parties. And considering how poorly I ate before I quit smoking, you would think that such a moderate, balanced diet would be doing wonders for me.
Alas, not. Frustrated with my lack of weight loss, I turned to the internet to search for answers. Somewhere along the way, I came across something that said that women with PCOS often don’t lose weight until after they stop breastfeeding. Surprised (but actually not surprised), I modified my search to find weight loss strategies for women with PCOS. I learned that a low glycemic index diet is most recommended, and the reason for this is that PCOS is closely linked to another fun condition called Insulin Resistance.
Insulin Resistance (also referred to as pre-diabetes) means your body does not use insulin correctly, causing it (and glucose) to build up in the bloodstream. Instead of being used by the body as energy, the excess glucose ends up being converted to body fat and stored. Consistent high levels of glucose and insulin in the blood can eventually lead to diabetes. As we all know, diabetes sucks.
Women with PCOS frequently become insulin resistant, and the combination can make for a vicious cycle. The increased glucose and insulin in the bloodstream can trigger the excessive production of androgen (a male hormone). The androgen triggers all those gnarly symptoms we talked about earlier. Suddenly you may find yourself 10 or 20 pounds overweight, and struggling to lose the weight because both PCOS and Insulin Resistance make weight loss very difficult. Ironically, losing 10% of your body weight is surely the best medicine for both conditions.
Knowing this now, I guess I shouldn’t have taken pregnancy as a license to eat dessert whenever I wanted, huh?
So why was all of this such a surprise?
I have been asking myself this lately. When my (former) OB initially gave me the diagnosis, we just went straight to Clomid, and didn’t really discuss any other aspect of the condition. It never came up during my prenatal care with the midwives. When I brought it up to my current practitioner (during the breastfeeding troubles), she didn’t know much about it.
In fact, almost everything I know about it (and how to manage it) has been found using Google. I’m gratified that there is so much information out there, and so much support for women struggling with symptoms, but I’m also a bit sad that this is what I have had to do. Another woman (who may not be as obsessed as I am with Google searches) may not get the answers and the help to make her well.
PCOS affects up to 5-10% of women (75% of whom go undiagnosed), and poses a significant risk of cardiovascular disease, obesity, and diabetes, all of which are preventable with proper diet and management of the symptoms. Knowing what I do now, I feel that I can manage this condition, but I also want to do what I can to get the word out to other women, to promote awareness of PCOS. That is why I am writing this post of my own experience, in the hope that it may help someone else find the answers they need.
- Polycystic Ovary Syndrome Will Get a New Name Because No One Knows WTF It Is (jezebel.com)
- What Is Polycystic Ovary Syndrome? (everydayhealth.com)