Secondary Conditions: Polycystic Ovarian Syndrome

I’ve written a lot about endometriosis.  I’ve also written about some of the “side-effects ” people with endo often suffer, such as back pain, digestive issues, and gastritis.  Now I want to write a little series on other chronic conditions that often appear alongside endometriosis.  Today, it’s polycystic ovarian syndrome, aka PCOS.

What is PCOS? Well, it’s a condition whereby the ovaries become enlarged and prone to cysts. Tiny little follicles grow on the ovaries, containing partially formed eggs that rarely grow to maturity or become fertile. The body produces too much insulin and androgen (a male hormone).

PCOS can cause weight gain, excessive hair growth on the body, hair loss on the scalp, depression, sleep apnea, acne, pain, infertility , increased likelihood of diabetes, and irregular periods.  It’s a nasty disease and the side effects (wrongly) carry a lot of social stigma.

Like adeno and endo, no one is really 100% sure what causes PCOS. It does appear to run in families and is more likely to effect women who are overweight, but neither of these is a guarantee of getting it, nor are slender people with no family history automatically exempt. What we do know is estimates suggest it could effect as many as 20% of people with ovaries of reproductive age, and often goes undiagnosed.

As with any disease where weight increase is both a symptom and increases the risk of either contracting the disease or exacerbating the symptoms, doctors will urge sufferers to make healthy lifestyle choices, particularly around diet and exercise. Not for a moment will I pretend this is a bad idea.  Sufferers can achieve significant relief from symptoms with only a small amount of weight loss (which sounds a lot easier than it is when your own body is fighting you every step of the way).  However, I do urge people not to allow doctors to attribute everything to their weight and offer no other assistance. Hormonal treatments can also be an important part of dealing with PCOS, both to block and to raise different hormones.

It’s also a good idea to have a mental health professional as part of your treating team. Dealing with difficult symptoms that our society wrongly but consistently perceives as “gross” or symbolic of laziness is hard enough. Dealing with a disease that also can cause depression is an extra battle you shouldn’t have to fight alone.

Before you can start to be effectively treated, however, you need to be diagnosed. There is no 100% guaranteed method of diagnosis. Scans may show cysts on your ovaries, but you can have ovarian cysts without having PCOS. Likewise, you can have PCOS but not have anything visible on scans. You can also have blood tests that will look at hormone levels in your blood to see what, if anything, is elevated.  Like endo, though, it can just be a lot of guesswork and diagnoses are often based purely of reported symptoms.

Endometriosis and PCOS, unfortunately, often travel in packs, and it is relatively common to have both.  However, plenty of people only deal with one or the other.  I’m lucky enough not to have had to deal with PCOS. I have friends, acquaintances and possibly family members with it, and their experiences have ranged from annoying to devastating. Have any of my readers experienced PCOS? What was your path to diagnosis?  If anyone wants to write a guest post about how PCOS really feels on a day to day basis, I’d love to publish it.