Living With Polycystic Ovarian Syndrome
ollowing is an excerpt from a 23-year-old woman who was diagnosed with polycystic ovarian syndrome when she was 22.
From the time I started puberty I knew something wasn’t right. I could have counted on my fingers and toes the number of times I’d had a period between the first one and the age of 22. I honestly had no problem with not having periods—it didn’t make me feel like "less of a woman." I figured it couldn’t be anything too serious, and the fear of finding out what was really wrong would probably mean more than I was willing to know. I knew that I should get it checked out, but because I wasn’t sexually active I didn’t get my first Pap smear until I was 19. It wasn’t until I was 22 that I went to find out what was going on with my periods. I finally went to the university health clinic the first year of graduate school. It had been 3 years since my last Pap and I told myself I needed to know what was going on with my body. I needed answers and I was finally willing to accept them. I was diagnosed with polycystic ovarian syndrome (PCOS) and although I’d never heard of it, I found out it was common in women.
I’m glad I didn’t wait any longer. With my diagnosis, things made more sense. I’d always been overweight and it was mostly in my middle. No one had ever said anything, but I always felt I had more facial hair than a girl "should." I had even questioned having more testosterone than most women because I have very well-developed calf muscles that look more like a man’s. After some accompanying blood work I found out I was also nearly diabetic. I had NEVER thought that not having periods would be related to developing diabetes or high blood pressure. Research is finding that insulin is connected to PCOS, which explains why many women will become diabetic who have the condition. With that tends to come the obesity. PCOS, if not managed, can also lead to hypertension and endometrial cancer. Also because of the insulin and other hormones, it’s often hard for women with PCOS to lose weight. I feel betrayed by my body; like it is working against me.
In a society where body image is everything, I grew up being overweight. Now I have more of an explanation of why, but people don’t know that when they see me. Despite how attractive I feel on the outside, I’ve
also felt unattractive on the inside because my "girl parts" just don’t work right. When I didn’t know what was wrong with me, I assumed I was a rare case, no one would really understand what was going on with me, or if they found out, it’d be a quick fix that I could ignore for the rest of my life. Yet, PCOS isn’t curable. It can be managed, and managed well enough that symptoms virtually disappear, but there is and was no magic quick fix I had hoped for.
Hearing a diagnosis can be comforting in a "they know what’s wrong" sort of way. Yet, if you’ve never heard of the syndrome you’re being diagnosed with, because it’s only recently gaining much attention, it can be an isolating and scary experience. I’m finding there are a lot of women with PCOS and they’ve formed communities and groups to talk about how to advocate for themselves and their medical care.
Because my body doesn’t work quite right and because it leaves me with some side effects I’m less than thrilled about (with the potential for more as I age!), I’m self-conscious about my body and consequently self-conscious about sex. I’m afraid it’ll be hard to find someone willing to learn about how PCOS makes my life different and somewhat challenging. I’m afraid that I won’t be able to find someone who is attracted to me that I am equally attracted to who because of how I look because of my syndrome. I’m afraid I won’t be able to find someone who is all of these things and is OK with not having children or having to work for them [using fertility specialists].
Honestly, even though I’m quite hopeful about my prognosis, I can’t help but think that PCOS has robbed me of some of my self-esteem. I basically have to take some sort of medication to make my body create a period for the rest of my fertile days, though it doesn’t necessarily mean I’m ovulating. I can’t just quit taking birth control and get pregnant whenever I want (if that’s even what I wanted). I can’t just exercise enough in a few weeks to slim down enough to look good in a bikini. I can’t guarantee that I won’t become very obese and get high blood pressure down the line; not because I’m lazy, but because of my ovaries. I can’t always choose what PCOS does to my body, but I can choose to take comfort in the fact that I’m not alone.
Source: Author’s files.
Vulvodynia
At the beginning of the 21st century, many physicians were unaware that a condition known as vulvodynia (vull-voe-DIN-nia) even existed. Vulvodynia refers to chronic vulval pain and soreness. Although a burning sensation in the vagina is the most common symptom, women also report itching, burning, rawness, stinging, or stabbing vaginal/vulval pain (Innamaa & Nunns, 2005; Lotery et al., 2004). Vulvodynia pain is either intermittent or constant and can range from mildly disturbing to completely disabling. Women who suffer from vulvodynia experience higher levels of psychological distress and depression than those who do not (Wylie et al., 2004).
No one really knows what causes vulvodynia, but there have been several speculations, including injury or irritation of the vulval nerves, hypersensitivity to vaginal yeast, allergic reaction to environmental irritants, or pelvic floor muscle spasms (R. K. Jones et al., 2002). Treatment options include biofeedback, diet modification, drug therapy, oral and topical medications, nerve blocks, vulvar injections, surgery, and/or pelvic floor muscle strengthening (Glazer et al., 1998). Newer research indicates that using birth control pills for more than 2 years may increase the risk for vulvar pain during intercourse (Berglund et al., 2002; Bouchard et al., 2002).
Infections
A number of different kinds of infections can afflict the female genital system, and those that are sexually transmitted are discussed in Chapter 15. However, some infections of the female reproductive tract are not necessarily sexually transmitted. For example, as we discussed earlier in this chapter, the Bartholin’s glands and the urinary tract can become infected, just as any area of the body can become infected when bacteria get inside and multiply. These infections may happen because of poor hygiene practices and are more frequent in those who engage in frequent sexual intercourse. When infected, the glands can swell and cause pressure and discomfort and can interfere with walking, sitting, or sexual intercourse. Usually a physician will need to drain the infected glands with a catheter and will prescribe a course of antibiotics (Blumstein, 2001).
Douching may put a woman at risk for vaginal infections because it changes the vagina’s pH levels and can destroy healthy bacteria necessary to maintain proper balance. Those who reported using douches said they were concerned about vaginal odor and cleanliness. This is typically what drives women to use a variety of feminine hygiene products (see Sex in Real Life, “Feminine Hygiene,” on page 127).