I was first diagnosed with polycystic ovarian syndrome, or PCOS, in 1995, when I was 21 years old. In those early days, most doctors didn’t even know what it was. When I told other people that I had it, they didn’t know what it was either, despite the fact that one in ten women has the condition.

Before receiving my diagnosis, I had irregular periods and frequently got cysts on my ovaries. PCOS usually involves numerous small cysts on the ovaries, but my cysts tended to be large and caused me a lot of pain, especially when they ruptured. And though many patients with PCOS are overweight, I was very thin when I was first diagnosed.

I have been living with PCOS for more than 20 years now, and I’ve experienced firsthand how the medical community has changed the way it understands and treats the condition.

The Early Treatments

Because my earliest symptoms of PCOS were irregular periods and painful cysts, doctors worked to regulate my menstrual cycle. They prescribed birth control pills to suppress ovulation and therefore make the cysts less likely to form. Unfortunately, I experienced a lot of intolerable side effects from the contraceptive pills even though I tried a few different varieties, so I stopped taking them.

I saw a different doctor who recommended a procedure called a wedge resection which would have removed a small section of my ovaries. Because I did a lot of research, I was unconvinced of its benefits.

But I did agree to undergo an outpatient laparoscopic surgery called ovarian drilling, a procedure where small holes are drilled in the ovaries to restore normal ovarian function. The procedure was commonly performed in the 1990s, but it is not often done anymore. My next few cycles after the surgery were regular, but those effects didn’t last.

Managing My Fertility

By the time I was in my mid-20s, six different doctors had warned me that my PCOS meant that I might never be able to have children. I was married, but I wasn’t necessarily thinking about having kids yet. My mother-in-law was working for a fertility specialist at that time, and the doctor she worked for agreed to treat me. My insurance would cover the treatment without any additional out-of-pocket costs.

Because I knew fertility treatments were expensive, and I was afraid of not being able to have kids otherwise, I decided to accept the doctor's generous offer. The doctor planned to try just a couple cycles of Clomid, a drug to promote ovulation, along with an intrauterine insemination (IUI) of my husband’s sperm. This medication was not expected to work, so the plan was to move quickly to in vitro fertilization after that.

To everyone’s surprise, I got pregnant during my first month on Clomid. I took progesterone supplements that I got from a specialized pharmacy for the entire first trimester. It was otherwise an uncomplicated pregnancy. I did have some problems at the end, including a prolonged labor that ended in a C-section and difficulty getting enough of a milk supply to breastfeed the baby successfully. I've since learned that problems with labor and breastfeeding are more common in women with PCOS.

I went on to get pregnant with two more children without any fertility treatment. Birth and breastfeeding went better after the last two pregnancies, too. It seemed like my problems caused by PCOS went away during the years when I was actively pregnant or nursing.

Treatments in Recent Years

After I had my babies, I thought my PCOS was gone for good. But my symptoms eventually came back after the youngest child weaned. This time, my PCOS symptoms were completely different. I was having a lot of trouble losing the baby weight, which I noticed seemed to gather around my midsection. I also had problems with acne, which I never had before.

New research had come out showing a link between insulin and PCOS, and I’ve had hypoglycemic (low blood sugar) episodes for quite a few years which would make me feel shaky and lightheaded. I asked my doctor if it was related. She ordered blood tests that determined I had insulin resistance. I was prescribed a medication for type 2 diabetes called Glucophage (metformin). After a few months, it started to give me regular cycles again, my skin cleared up, and my efforts to lose weight became successful.

After being on metformin for about five years, the medication became less effective at regulating my cycles. I continued taking metformin, but I also started following a low-carbohydrate diet, getting more regular exercise, and keeping my stress levels low. These are good healthy habits for anyone, but they are especially important when you have PCOS.

I’m going to continue working hard to maintain good habits so that I can manage the risks of PCOS like heart disease. The changes in my hormones, especially insulin, will continue even after menopause. Despite the fact that PCOS is common and isn’t life-threatening, it’s a great wake-up call to take control of your health.

If you have some or all the following symptoms, you could have PCOS and should ask your doctor for additional tests. The symptoms include:

  • Irregular menstrual periods
  • Acne
  • Weight gain (particularly around your abdomen)
  • Depression or mood swings
  • Excess body hair
  • Thinning hair on your head
  • Pelvic pain
  • Infertility

PCOS can share some symptoms with endometriosis, particularly pelvic pain, weight gain, and menstrual irregularities, so it’s important to see an OB/GYN for an accurate diagnosis. Both PCOS and endometriosis are manageable, but you need to know what you’re facing.

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