[This post was written after my initial appointments with a gynecologist in February and a follow up at the start of May]
The most amazing thing happened the other day.
I got a diagnosis!
Not of the autism kind, but one about my periods and what’s most likely the cause of my random weight gain since 2014.
It appeared I have PCOS and endometriosis – which as of May – the PCOS component has been confirmed after more blood tests. To put it way too simply, this is a Demon Lilith’s Devil-Duo, however it needs more explanation than a really fun name I just made up.
Okay, what is PCOS?
PCOS, or Polycystic Ovarian Syndrome, is actually an endocrine disorder. I say “actually” because there’s a misconception it’s a reproductive issue, however it starts in the brain and the hormone imbalances it creates; it just so happens the reproductive system – the poor ovaries – bear the brunt of it. While a lot of people can show symptoms from their very first period (my sister is a classic example), I am one of the lucky ones that it just… happens to one day, meaning it was harder to get a diagnosis for.
Yeah, real fun.
While there are a multitude of symptoms PCOS can have, this is a list of symptoms I developed that I know stemmed from PCOS or PCOS-related issues like pre-diabetes:
- Gradual, unexplained weight gain, especially around stomach
- Difficulty losing weight
- Frequent or unusual cravings for you (I started craving more chips than my usual sweets)
- Irregular periods
- More prolonged periods
- Insulin resistance
- Acanthosis nigricans i.e. darkening of the skin behind neck
- Hirsutism i.e. excessive hair, particularly on the face, lower back and stomach
- Obstructive sleep apnea
- Inflammation, or an overactive inflammatory response
- More fatigued than usual (and I had/have CFS/ME!)
- More brain fog than what was usual up to that point
- Sleep issues (trouble falling asleep as well as broken sleep)
- Some skin tags in the armpits
- Mild (stage 1) hidradenitis suppurativa
- Increased thirst
You know what I didn’t have though? Cysts.
No string of pearls, no abnormalities with my pap smears, none with my internal or external ultrasounds. All ways normal. The thing that made the “cyst” in “Polycystic Ovarian Syndrome”, I didn’t have.
And guess what? It’s so stupidly common with people suffering from PCOS. So infuriatingly common yet general practitioners – the first line and some people’s only line for help – will swear black-and-blue you don’t have PCOS because you have normal ultrasound results.
Even though I had a sister with PCOS and had a checklist in my hand of the symptoms I was experiencing that only a handful of issues that all coincided at once, the GP – with a goddamn background in women’s health and gynocology – said no. Nope, no way I could have PCOS.
I can’t tell you up angry and upset I felt. I was confused and helpless. At that point I had the usual ‘you’re fat lose some weight’ talk so many times it was so insulting to the medical and weight history I assured them I had.
So with defeat I left it at that. I knew that there were people out there with PCOS that didn’t have cysts but I was just so exhausted by this point, I just wanted to get out of the room. Went home, tried to do my best by my own.
But the pain got worse, fast. So, tried with another doctor, Dr. Ismail (who sadly just left the practice), a compassionate and kind man, but most importantly he was proactive and recognised I was serious, and in turn, took me seriously. He got some blood test forms made up, got me in touch with Dr. Suzan Elharmeel, a great specialist who lives, breathes and teaches in obstetrics and gynaecology. Because of them, I got both diagnoses.
Okay, what about endometriosis?
While PCOS is a disruption of hormones that affect the ovaries, endometriosis is when the endometrium-like tissue that should be sloughing off from the walls of the uterus (hello, period) decide to just go balls-to-the-wall and grow outside the uterus. Sometimes this means this tissue is growing in or on the ovaries, on the bladder, and in some cases, being found in the lungs or the brain..
These are the list of symptoms I developed that I know stemmed from endometriosis:
- Secondary dysmenorrhea, i.e. painful cramps (or painful sensations of burning and stabbing) of the thighs, front, lower back and vulva (yeah, real fun) that OTC medications like ibuprofen don’t help
- Pain outside period (back pain and a numb, sensitive and sometimes throbbing vulva)
- More prolonged periods
- Heavier periods
- Urinary and bowel distress
- An absolute whirlwind of emotions and moods!
Like I said at the beginning, I just had my follow-up with Dr. Elharmeel yesterday and after looking at my results she confirmed I have PCOS. As I’ve been watching my nutrition and exercise but still have issues stemming from PCOS, predominately pre-diabetes, she was happy to also prescribe me Metformin. Hopefully the Metformin will contribute to what I’m already doing and help with not only weight loss, but my glucose, insulin resistance, increased thirst and cravings.
I can’t tell you how much hope I feel for the first time in seven years. Suffering in this way along with autism is such a crushing feeling, and the thought that I can start mending or at least managing one area of my health gives me confidence in not only the other areas of my health, but other areas of my life. All I can say is that you are not alone, you are not crazy, or weak, or sensitive; you are a person that is going through so much and you deserve your diagnosis.