PCOS — Illustrative Tidbits re: My Lady Bits

Poly-Cystic Ovarian Syndrome (PCOS)

The road to a PCOS diagnosis — for me — was one fraught with pain (in more ways than one). There were medical appointments and blood tests, questions and non-answers, ultrasounds and hormone checks and the gut-level knowledge (knowledge that medicos refused for years to validate) that Something Is Not Right; there were medications that had horrendous side effects and hormone therapies that did not work (which both came after the pregnancy that did not work because, clearly, my body does not work); but I think what stands out the most to me as signifying The Beginning of my travels down the PCOS road was the pain.

The first — and in terms of physical agony, the worst — came shortly after I was married.

It was urgent. Acute. Sudden and unexpected. Piercing. Prolonged. Stabbing, sharp, twisting.

Unrelenting.

The pain was intense enough that I was doubled over — literally doubled over, folded at the waist; I was incapable of standing up straight — with a clenched jaw and held breath, trying not to cry.¹

It was bad enough that I called my mother. (I never do that, especially not if/because I’m sick. And most especially if that ‘sickness’ has anything to do with being incapable of Manning Up.) And she gave my husband orders to take me to the emergency room, pronto.

The diagnosis – that night – was (after ruling out appendicitis and gall stones and finally believing me that I truly was IN PAIN and not just trying to get my hands on narcotics²), “Oh… Well… You have lesions on your ovaries.”

The FUCK?!

Nothing was explained as to how those lesions might have gotten there.

Fifteen years, multiple specialists, and several additional ultrasounds later, I finally had an idea of how it works.

You see, in a “normal” female, the ovaries create a little cyst every month. When that cyst bursts, the egg is released into the uterus. The menstrual cycle happens. Things proceed like this on a regular (monthly) basis for approximately 40-50 years.

In ME, if/when I get a cyst (which is at uneven and unpredictable intervals), it doesn’t necessarily burst like it would in a normal woman and release its egg. Instead, cyst builds on top of cyst on top of cyst for months/years at a time. And then, when one of them bursts, it causes a chain reaction of bursts. (Which means that suddenly, post-burst, there is a plethora of eggs floating about inside my uterus… Which would explain why I got pregnant so quickly after the ER visit I just told you about — obviously, the pain was caused by the “superburst” event; while the aftermath of this Burst Event temporarily made me into a Fertile Myrtle, my body – with its fucked-up hormones – didn’t understand what it was supposed to do with that fertility.) Considering that these multi-bursts had already happened – by the time of that first ER visit – multiple times over the course of my lifetime: I have lesions on my ovaries.

Having poly-cystic ovaries also means/meant (for ME):

• abnormal periods
• high testosterone levels
• body hair resembling that of a circus entertainer
• difficulty losing and/or maintaining weight
• high cholesterol
• high libido³
• inability to conceive and/or to carry a pregnancy to term
• hormonally-triggered migraine headaches⁴
• physical presentation of typically-male characteristics (receding hairline, overall musculature, “dad bod” belly)

There’s more, but those are the basics.

And the thing is…

PCOS is (still) considered a “controversial” diagnosis.

Much like the criteria for psychological conditions, the list of potential symptoms someone might exhibit is HUGE, and yet you only have to have three (it may be only two in some places; when I was finally given a diagnosis it was because “Well, obviously you exceed the requirement of three symptoms presenting. You actually have about nine”⁵) symptoms to be classified as a PCOS patient.

And really…

For most people, “abnormal periods” looks like “every 9-12 weeks instead of every four” and “high testosterone” does NOT equate to having higher testosterone levels than those found in adolescent males. (Yes, that was me. My testosterone was that high.⁶)

In fact, for most people, PCOS is just a bit of a nuisance. It may make conception more difficult than it would be otherwise, but it doesn’t prevent it. It might come with occasional pain when two or three bursts happen at once instead of a single ovulary release, but it doesn’t constitute a trip to the emergency room. And occasional single chin hair may appear, but it can easily be dealt with by using tweezers; full body laser hair removal treatments — starting with zapping the full beard — are unnecessary.

But I am not most people.

(Which is part of the reason I write posts like this.)

This post is part of my spring-into-summer Inspirations writing project. (Click the badge for more info.) I originally had the idea to write about pain – as relates to sexual health – after reading Julie’s post about painful sex during the A-to-Z Challenge and then later after reading Joan Price’s informational article addressing the topic of pain with sexual activity / intercourse.

While I was originally intending to discuss painful intercourse (and I still will, if people are interested), I switched gears slightly after a brief conversation in the comments section on one of my recent menstruation-related posts.

FOOTNOTES

¹which triggered a panic attack — which was oh.so.HELPFUL in compounding the problem{s}

²because, apparently, I “fit the profile” for a narcotics abuser — ME, who for years wouldn’t even take a Tylenol!

³The diminishment of libido is what helps draw the line, medically, between PCOS and menopause; the typical “cessation of periods” does not apply in my case as a determining factor, because I’ve been experiencing year-long (or longer) cessations of menstruation for the past 25 years.

⁴I have written about my migraines in the past but perhaps I should revisit that topic? If you’re interested or have questions, please let me know; a lot has changed since I wrote my initial “this is what I deal with” post several years ago — I know more about their cause than I used to and I’ve learned different ways to cope/treat than I knew at that time as well.

⁵This was ‘official commentary’ from the endocrinologist — hooray for medical professionalism! — who also said “you need to work out your treatment plan with your OB/GYN” because with “the severity of your [my] clinical scenario” she felt unqualified to deal with it/me… which meant that PASS THE BUCK was very much in play.

⁶Since testosterone is biologically required for orgasm in both males and females, this meant that during the worst of my testosterone hormonal spikes, I had a.ma.zing orgasms.