So as some of you know- I was diagnosed with PCOS and endometriosis this past summer (summer 2016)- and it’s been an experience to say the least… And maybe I should have gone into more detail about what it is and what it means to me?
So- I’ll do that since endometriosis awareness month was in March!
What is endometriosis?
“Endometriosis is an often painful disorder in which tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.
With endometriosis, displaced endometrial tissue continues to act as it normally would — it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to exit your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irritated, eventually developing scar tissue and adhesions — abnormal bands of fibrous tissue that can cause pelvic tissues and organs to stick to each other.
Endometriosis can cause pain — sometimes severe — especially during your period. Fertility problems also may develop.” from the Mayo Clinic
What it means to me?
It means a sense of fear when my period coming- especially because my period is erratic- it’s the sense of fear that grows when I realize that because of my PCOS… my period doesn’t run on a schedule or is normal for when it comes. My hormones are already everywhere.
But with the schedule off it means it’s hard to see it coming. It means trying to find a birth control that works– and dreading the period when it arrives. Noticing the signs that it’s coming even though you’re doing everything you can to make sure it doesn’t. It’s coming. The things associated with endometriosis are coming.
It’s the excruciating pain– that can sometimes leave me unable to move- leaves me curled up in a ball.
It’s the heaviness of the period- that leads me to change my menstrual cup often- sometimes resulting in every hour and worried about ruining clothes and sheets- and often doing so even with my best efforts.
It’s knowing that the heating pads, tea, and pain meds usually aren’t enough– with a numbing and stabbing pain that is persistent and relentless.
It includes everything else associated with your period- but intensified– fatigue, insomnia, diarrhea, bloating, and feeling nauseous. It’s also all of the mental health side of things with your period and the impact on blood sugars.
It’s hoping that a birth control works- but not trusting your body that it will. So it’s also just appreciating the rare moments when your period isn’t creating havoc in your life- but trying to be patient to see if it will- not if- but when it will. It’s then trying another birth control… and starting the 3 month “trial period” to see if the next one will work.
It’s trying to find a doctor that is open and a right fit for you. But struggling to do so.
It’s being grateful that it’s not quite the experience you had pre-birth control when your period first arrived- Where I would fall in pain. Couldn’t move. And be hospitalized almost every period.
It’s trying to not let it get in the way of functioning or life when it hits. But it’s also recognizing when there’s only so much pain you can move past. Can ignore. Can power through. When you need to stay in- curled in a ball– and try to wait out the pain and other symptoms that come crashing in on you. But it’s also trying to explain why you need to sometimes- and feeling self-conscious when someone says it’s just your period, you shouldn’t talk about it, get over, etc.
It means being able to tell that you’re not taken seriously about the pain- that you shouldn’t talk about it- that it’s “normal” and a “sacrifice” as a woman. It’s wishing that it wasn’t so taboo (especially as a teenager) so you could learn from others that your period was in fact… not normal…
It’s knowing that when you power through… you should give yourself some credit.
It’s wishing there was more than just “management” more than just a minimal treatment- wishing more was done.
It’s knowing that the diagnosis solidified my belief that gender norms play too much of a role in medicine– especially as a female. Even though I’ve stressed I don’t want children.
But the diagnosis means answers– it gives me the why- and the information I need to back me up that what is and was happening- wasn’t normal. That it wasn’t okay. That it could and should be better. (It’s also nice to have answers).
But for me- these past 9 months- the biggest thing endometriosis has meant for me- It means getting comfortable talking about something I never imagined myself being upfront about– especially on social media.
So yeah- that’s just some of what endometriosis means to me. and ohhhhhhh how I wish that mother nature included gift receipts with her gift I wish I could return.