PCOS: The Chronic Disease that Affects up to 10% of Women
Hey guys, Mace here. I don't have much of a fertility update for you all besides that I am still not pregnant and I have my first appointment at an actual fertility clinic later this month. I've been super frustrated these past few months that I haven't gotten pregnant naturally yet and have become almost hateful to my own body for making things so difficult, but regardless I am actually very excited to see a more qualified doctor and explore more options. Even though artificial reproductive technology will never be my first choice, I am incredibly grateful that it exists and I live in a day and age where I can utilize it if needed. I'm also thankful for all of you lovely ladies that have reached out with your own stories. No one should suffer silently and no one is alone in these kinds of struggles!
Most of you know that I am diagnosed with PCOS, but probably don't know much about it. The surprising thing is that even though almost one in every ten women are currently living with it, the majority don't even know that they are. That group is probably experiencing so many negative physical symptoms without explanation and I feel for them, because that was me for years! PCOS is an interesting disease, in that it manifests differently in every woman and may be diagnosed differently. For me, I did not have very many visible symptoms, so I was diagnosed via ultrasound after years of confusion. I have been feeling like I need to write this post for quite some time now to raise awareness. I really hope that my limited knowledge and experience will help someone somewhere!
PCOS stands for Polycystic Ovary Syndrome, simply meaning that a woman's ovaries are enlarged and filled with small, fluid-filled cysts. Although, there is much more to it than that. If you were to look at an ultrasound of a women's ovary with PCOS you would likely see what can be described as a "string of pearls" inside. Or, in my case, the ovaries look more like a "chocolate chip cookie" or a "wiffle ball" (legit doctor's description). A normal woman will have about 4-5 follicles floating in each ovary. I have about 20. Luckily, these cysts are typically pain-free and you wouldn't be able to ever feel them inside of you even when they do grow and rupture on a regular basis, except for in the case of an enlarged, special kind of ovarian cyst, which hurts like hell and feels like death when/if it ruptures.. If a cyst grows large enough that it causes any pain it actually warrants a doctor's appointment ASAP, because in some cases, these cysts can rupture and leak fluid into your body or cause real damage to your reproductive system and need to be surgically removed before they rupture. Sharp, shooting, ovarian pain is not normal and can be dangerous.
The exact cause of PCOS is actually unknown, but research shows that it is basically related to high levels of testosterone compared to estrogen in women and insulin resistance. Some speculate that today's cultural bad diet is the main concern for rising levels of PCOS, a disease that seems to become more and more popular which each generation. Increased amounts of sugars, carb-heavy meals, and chemically altered foods in our diet definitely attribute to the continually growing amount of women living with this disease, most who are overweight. The fact that I am a normal, healthy weight was the main reason that two different doctors basically did not believe that I could have PCOS when I thought I had already diagnosed myself. When I had finally convinced a third to take an ultrasound she was surprised at what she saw and called my condition "lean PCOS", which is more typically inherited from genetics (although, no other women in my family have PCOS to their knowledge) and not nearly as common.
A typical woman with PCOS is usually overweight. I am glad that I don't fall into that category, although I do still feel the effects of insulin resistance and struggle to lose weight when I want to. I also face a real risk of developing diabetes in the future among other diseases like sleep apnea, as do all women with PCOS. Other undesirable symptoms of a woman with PCOS may include thinning hair on the scalp, excess hair on the body (Doc missed that one on me, thanks laser hair removal), acne, bloating, indigestion, fatigue, depression, irregular and painful periods, headaches, insomnia, and PCOS is also the leading cause of infertility.
The definition of infertility is "a disease of the reproductive system defined by the failure to achieve a clinical pregnancy after 12 months or more of regular unprotected sexual intercourse", so while I am technically infertile by definition, I avoid using that word, because IT IS usually POSSIBLE for a woman with PCOS to become pregnant, sometimes with medical assistance, but sometimes naturally as well. I think it is unfair to women who are infertile forever to categorize myself as infertile at this point. I was able to become pregnant after over a year of trying naturally, but unfortunately miscarried at ten-ish weeks. It is unknown whether PCOS affected my miscarriage specifically, but it is known to increase the risk of preeclampsia, gestational diabetes, and miscarriage, so I'm only assuming. A doctor once told me that the follicles or eggs of a woman with PCOS are considered almost "stale" and that a bad egg is the main cause for miscarriage. I have since been trying to get pregnant again for about nine months, long enough to warrant a trip to the fertility clinic and explore other (more expensive eek) options.
I call PCOS a chronic disease, because it does not have any known cure. You can, however, "manage" various symptoms with an effective treatment plan. For most women this means losing weight. For me, this has included getting on and off (and then on again) birth control, exercising regularly, trying Clomid to promote ovulation, adjusting my diet, and having an active Metformin prescription, a Diabetes drug that hasn't seem to help or hurt as of yet. Cosmetically, laser hair removal and a trip to the dermatologist never hurts. When it comes to achieving pregnancy, there is ovarian drilling, which is known to restore ovulation in women with PCOS temporarily, and many PCOS/IVF success stories. I don't feel great about my so-called treatment options, but options are better than nothing! I was relieved when I got my diagnosis, mainly because I felt justified that my symptoms were real and recognized in the medical community.
I'm sure that most can only imagine my frustration living with a disease with no known cause or cure, but the main reason I wanted to write about PCOS was not to generate sympathy, but awareness. There are thousands of women living with all of the negative symptoms of PCOS without the knowledge that there is any rhyme or reason to it. I can guarantee that someone will read this post who also has PCOS and probably does not even know it. Maybe there is someone out there struggling with their self-image because of unexplained acne, weight gain, and hair growth or maybe someone else feeling helpless like me while desperately wanting a baby and not being able to become or stay pregnant. My hope is that one or two of these women might come across this article, realize that they have an actual disease with a name and begin their own treatment journey. The PCOS community is growing every day and real research is underway, and even though words like "diagnosis" and "chronic" seem terrifying, they are really just steps in the direction of managing this disease in a good way!
I hope that any of you feel comfortable reaching out to me with any questions, I am no expert, but I do have a bit of experience under my belt! As always, I also love to hear your personal stories and any advice you have to share.