This post is a bit difficult for me to write… In fact, I’ve made about 20 revisions on it and gone back and forth with whether or not to even publish it. Ultimately, I think it’s important to talk about. As much as I want to be a “tough girl” and not complain, I also want other women with this condition to know they’re not alone. Before I get too much into living with PCOS, first I want to talk a little bit about what it is and my diagnosis.
So first of all, what is PCOS? PCOS stand for Polycystic Ovarian Syndrome. It’s an endocrine condition that typically manifests itself in three symptoms: 1) menstrual irregularity 2) hormonal symptoms 3) polycystic ovaries. To be officially diagnosed, you need to have a doctor/nurse practitioner confirm at least 2 of the the 3 symptoms. This typically involves sharing menstrual history, getting blood tested for hormones, and an ultrasound to check your ovaries. More than 200,000 cases are diagnosed every year, so it’s fairly common.
It’s important to note that PCOS is a spectrum disorder. Some women may have a lot of the symptoms, such as Whitney from TLC’s My Big Fat Fabulous Life while other women, such as myself, may not have the outward, physical appearances of PCOS.
What Happens to Women with PCOS?
A lot of women who have PCOS experience problems with weight regulation. They may also have elevated androgens, a male hormone, which can cause facial hair growth as well as excessive acne. The most common characteristic is irregular menstrual cycles, typically intervals longer than 35 days; fewer than eight menstrual cycles a year; failure to menstruate for four months or longer; and prolonged periods.
Women with PCOS are more likely to experience problems with insulin resistance and weight gain. This can lead to future problems of Type 2 Diabetes and heart problems down the road. The biggest problem with PCOS is that it can lead to problems with fertility when a woman wants to get pregnant. There are treatments, however, that a woman can take to increase the chances of fertility.
Causes and Cures for PCOS
Unfortunately, little is known about what causes PCOS. There may be a link suggesting that you’re more likely to be diagnosed if you have a mother or sister with the condition. That isn’t applicable for me, however, as my mother doesn’t have it and I have no sisters… So I think some women just get it. There’s no rhyme or reason. There’s also no cure for PCOS. There are a number of things you can do to minimize the symptoms and complications of PCOS, however. Doctors recommend making changes in diet and exercise, if you’re experience weight/blood pressure problems. Also, getting on the pill/hormone treatment is helpful to regulate your cycle and stop the cysts from continuing to form. In addition, the pill/birth control also helps regulate your body for women with excessive hair growth and acne problems.
So now that you have a little bit of knowledge of what PCOS is, let me share my story and diagnosis with the disease. I began my period at the age of 12, the most common age for women in the United States to start. Right from the beginning, I was incredibly regular (TMI yet?). I got my cycle every month with no complications. In fact, I have an old high school diary entry from when I was 15 about me freaking out because my period was 10 days late. I was convinced I was pregnant! It didn’t matter that I was a virgin, my period was never late, so I must have had some kind of immaculate conception, right?! What other explanation could there be?? I literally laughed out loud when re-reading that entry. Oh silly little innocent me.
When I was 19, I got on the pill. Like always, I was super regular. Even more so, when I was on the pill, I could predict to the exact day when my cycle would start. Again, no complications.
Fast forward a few years later and I was too lazy to continue going to the gynecologist to renew my prescription. I figured I would let my body reset and get off of the hormonal pills. Ladies, listen up, the hormones that you’re ingesting on the pill are hormones that your body naturally produces. There’s not really any benefit to “getting off the hormones” like I told myself. I was just too lazy to keep making doctor appointments. In fact, there are a huge number of health benefits from being on the pill! Including decreasing your chances of developing cancer. So please, think twice and consult a doctor before deciding you don’t want to be on the pill anymore…
After getting off the pill, my cycle was totally messed up. I did a lot of research and found out about post-pill amenorrhea, which can cause your body to take a few months before returning to a normal cycle. Sure enough, 3 months later, I got my period and assumed all was well! Only, it wasn’t. My period never came regularly again. I did more research, wondering if the pill could have longer lasting effects. All of this research basically had one conclusion: no. My cycle should have returned to normal after a few months, but it never did. I let it go for a long time, figuring that not having a period frequently couldn’t be doing anything to my body… My periods would come, but sometimes months would go by with nothing. One year, I skipped for 6 months in a row! And when my periods would come, they were coupled with incredibly painful cramps and bowel problems (ok, now TMI??). I would wake up at like 2-3am in agonizing pain that would come in waves. But, I figured putting up with that 2-6 times a year wasn’t that bad. Besides, after falling back asleep and waking up for the day, the pain from the early morning was just a faint memory.
Fast forward another couple years and I finally made a gyno appointment (ladies, learn from me and just make a yearly appointment!). I explained that ever since getting off of birth control a few years prior, I had never been regular. She began asking me questions like, “Do you experience a lot of facial hair growth or acne problems?” “Do you have trouble losing weight?” “Have you experienced rapid weight gain?” etc, etc. I knew where she was going with that. “No.” was my answer to all of her questions. Still, she ordered a lot of blood tests and an ultrasound to look at my ovaries/endometrium. Her other concern was that if my uterine lining was building up but not shedding (aka, skipping my period), I could be building up excess tissue. This can lead to complications like cancer. Great.
I get my blood results back (that was a horrible experience – have I mentioned my fear of needles? Yeah, I don’t even have my ears pierced). The hormone results were all completely normal. All of my estrogen, progestin, androgen, and testosterone levels were textbook–perfect for a woman my age. And that made sense. I didn’t experience problems with acne, weight gain/loss, facial hair growth, or any of the other physical symptoms of PCOS. I went and did my ultrasound (another awkward experience – it was a transvaginal ultrasound which is exactly what it sounds like) and those results came back stating I had “multiple peripheral follicles present” which was a fancy way of saying my ovaries were polycystic.
I met up again with my gynecologist and she told me I was technically on the spectrum of PCOS. I had 2 of the 3 symptoms needed to be classified as having PCOS (irregular cycles and polycystic ovaries), which meant I could be diagnosed. My doctor gave me 4 months of birth control pills and I later opted for a hormonal implant to help control the cysts. She basically said there’s nothing more to do except make sure I’m eating healthy and exercising regularly to avoid any problems that PCOS can cause (re: type-2 diabetes and heart problems).
Still though, this diagnosis doesn’t feel right to me. I may have 2 of the 3 symptoms, but PCOS is commonly diagnosed as a result of the most obvious indicator, which is typically the hormonal imbalances/physical symptoms… And I don’t have that. Plus, even after being on the pill and using the hormonal implant, I still experience intense cramping problems associated with my period, and PCOS doesn’t explain that. I have done more research and I think a more accurate diagnosis may be endometriosis. But I have not been officially diagnosed with that… Let me explain, however, why I feel this fits me better.
Endometriosis is a condition that affects the lining of your uterus, or your endometrium. Like PCOS, more than 200,000 cases are diagnosed every year, so it’s also fairly common. Now, when I got the ultrasound done on my ovaries, they also checked inside of my uterus and found my endometrium was normal. Which is good! What a transvaginal ultrasound won’t tell you, is what is going on outside of your uterus. When endometriosis occurs, the inside of your uterus may be just fine, but the tissue may grow outside of the uterus. This can cause extreme pain, especially during your period.
In endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Now, I’m not a doctor so I’m not sure if those cysts look different than cysts caused by PCOS, but my guess is that you can’t really tell. There are no hormonal components to endometriosis either.
What happens to women with endometriosis?
The primary symptom of endometriosis is pelvic pain, often associated with your menstrual period. Although many women experience cramping during their menstrual period, women with endometriosis typically describe menstrual pain that’s far worse than usual. They also tend to report that the pain has increased over time. Hmm, this sounds oddly familiar to me. Back in the day, I never experienced any problems with my period, aside from mild cramping, occasionally. Lately, since I initially got off the pill, I have had intense cramping during my cycles. Some women also experience pain with intercourse, pain with bowel movements (during menstruation), excessive bleeding, and infertility. A lot of those symptoms are similar to those of PCOS, which is why I think the diagnosis can be confusing. Another huge indicator that I may have endometriosis instead of PCOS is that women with endometriosis may instead be diagnosed with irritable bowel syndrome (IBS), a condition that causes bouts of diarrhea, constipation and abdominal cramping. Women with PCOS do not typically report the IBS symptoms.
So if you’re reading this and you’re like, “Oh, yeah Gen, it does sound more like you suffer from endometriosis. So why did you title this post about PCOS?” I get it. I wanted to talk more about endometriosis, but I haven’t been properly diagnosed with endometriosis. Why not? Well, in order to for sure classify a woman as having endometriosis, a procedure called a laparoscopy must be done, and I have not had that done. Basically, you need to get an incision in your stomach and have a camera inserted to look for the endometrium growing outside of the uterus. I’m a little hesitant because the only thing that will do for me is tell me, “Yes, you have it.” or “No, you don’t.” The treatments for PCOS and endometriosis are basically the same – stay on hormones to help control the cysts/endometrium growth. So for me, it doesn’t make a whole lot of difference. I’m going to continue the hormonal medicine and continue to live with the intense cramping/IBS like symptoms, but hopefully the medicine will prevent me from having too many future complications.
At this point, it doesn’t really matter what I actually have. Whether it’s PCOS or endometriosis, I’m treating it with hormone medicine (in the form of an implant in my arm). I don’t really want to be cut open and examined just to confirm my suspicions because nothing different will happen. I am going to keep taking Midol/Tylenol/Ibuprofen when I’m suffering the cramps, and keep using a heating pad to help relieve some of the pain.
Living with PCOS/Endometriosis
To be honest, it just kind of sucks… That being said, most days I don’t think anything about it. It’s just during my period that I remember, “Oh yeah, I have this weird, painful menstrual condition!” I do my best to ignore the pain, but that isn’t always possible. Just a few months ago, I was attending a big family reunion and after dinner one night, I was in such immense pain, that I had to go to bed early, causing me to miss out on family time with relatives I don’t get to see very often. Last summer, I was at a Decemberists concert having a great time when I was suddenly overcome with pain. It doubled me over and I had to sit down, in an effort to ease some of the pain. Needless to say, my great time turned into just waiting to go home to suffer alone, in my bed. So yeah, it sucks. As I said above, most of the time I wake up from the intense cramping and pain and find myself bouncing between the bathroom and bed, just praying the pain will go away soon. Personally, I usually only suffer 1 or 2 days usually right before and at the start of my period. But the pain is real and it is awful. I do my best to put on a happy face and pretend I’m not secretly wishing to rip out my uterus, but I just want any women suffering this kind of agony to know: you’re not alone.
In fact, you’re far from it. Like I mentioned, over 200,000 cases of both PCOS and Endometriosis are diagnosed every year. I get it, really. More than a few times, I have panicked at the thought of having fertility problems in the future. What if I’ll never be able to have children? I have looked into services such as freezing my eggs, just in case. I have woken up at 2am in immense pain, feeling like the only person in the world who is dealing with this sort of pain. Why is this happening to me? I have been in and out of doctors’ offices more times than I would like to admit, making appointments, getting blood work done, checking ultrasounds, meeting with specialists, etc. What the hell is wrong with me? It’s overwhelming! It’s a condition that makes you feel different, makes you feel so alone. But you’re not alone. I’m here with you. Hundreds of thousands of other women are going through the same things you are. And you know what? It’s going to be ok. Together, we are going to get through this ♥
Do you suffer from PCOS? Endometriosis? Do you feel isolated with your condition? What are your thoughts on this? Let me know!