…is not something you see every day, but is something I have seriously been thinking about every day, lately. And to be fair, let’s preface this whole thing with clarifying I don’t exactly want a hysterectomy…but it’s seeming to be a far better option than any of the alternatives.
Last year (2018), I was diagnosed with Endometriosis. I had never even heard of this condition until I was diagnosed with it (which I’m not sure if I should attribute to the seeming lack of knowledge of the condition in general/common discussion of women’s health, or if it’s a failed public schooling.)
Endometriosis, as defied by the Mayo Clinic, is an “often painful disorder in which the tissue that normally lines the inside of your uterus – the endometrium – grows outside of your uterus.” Just to add to the magnitude of how many people who have a uterus/female reproductive organs that are affected by this condition, it’s estimated that roughly one in ten women (10% of the world) are living with endometriosis. That’s an estimated figure of 176 million people. Diagnoses can take an average of seven and a half years to be assigned — primarily because women’s symptoms are often not taken seriously.
While research doesn’t seem to be making huge strides towards finding wildly successful care plans (or even some that don’t come with a hefty price tag; both fiscally and physically), nor a “cure” for the condition, it’s not even really known what causes endometriosis either.
Now that I’ve been knowingly dealing with the condition, after a laparoscopic surgery confirming the diagnosis and removing all visible adhesions to my doctor at the time, the darkness has started to settle in. I tried Orilissa, a heavy-duty drug that’s pretty much the only option to mask any of the major pain I was in or months-long bleeding that would seem to stop one day, only to bleed through and stain my clothes the next. It’s been really hard, especially coming off of a short span of time where I felt some weird “normalcy,” at least physically.
Endometriosis has been commanding my attention for over a year. I’ve missed out on spending time with friends because I felt disgusting or my bleeding was so heavy I didn’t want to be running to the bathroom every 25 minutes to “freshen up.” I’ve skipped more runs than I want to think about, especially on days when the weather was incredible here in Georgia (which doesn’t happen nearly enough for this northern-Minnesota gal) [also, if you’re new here, I love running. It’s a huge part of who I am. Early blog posts include: how miserable I am when I don’t run]. I’ve been put into terrible moods because of how much pain I was in, the stress I felt, the medication I was on…countless reasons, and taken it out on my usually-supportive boyfriend, Nick. I’ve spent more tears on this condition in the last year than I have on ex-boyfriends for my entire life. Some nights, I hold the heating pad tighter to my belly than might be safe; when really, all I want to do is hold my dog tighter than she might like.
All of this because of my reproductive organs don’t seem to want to function the way they should. In reality, there’s quite a bit of research that backs up that women who suffer from endometriosis typically have fertility problems. Of all the research we could be doing on this condition, at least I can find that on Google. And really, I’m at a point where that’s a decision that I have to make within the next ten or so years, which at the rate things are going, is going to be simultaneously here before I know it and some incredibly long, painful weeks.
My big question to my gynecologist in two weeks will be this: if I may not even be fertile, or have an incredibly low chance at being able to even have kids — especially when I don’t even think I really want kids — why should I not think about the one thing that I’ve been told could potentially put an end to all of the pain I’ve been feeling? The physical pain, of course, but also the mental and emotional pain? Which, oftentimes, feels even worse than the physical hurting?
I wasn’t going to post this. I typed this up last week after making my doctor’s appointment to discuss the options, and thought about what might happen if I did [post it]. Could it spark a conversation between two women dealing with the same things I do — or open up the opportunity to meet someone that is around the same age I am, and is considering or has gone through with a hysterectomy, or a partial hysterectomy, if that’s even a thing?
But then Planned Parenthood and many other organizations that support women AND men’s sexual health were forced to resign from Title X. Birth control is the only care plan that many women suffering from endometriosis are offered, one reason being because it’s typically a little more affordable than the only other alternatives. My heart is aching for all of the women who have it worse than I do — both in their life situations, and in their uterine pain — whether that’s from endometriosis or something far worse.
There’s been so many things in the news since the current U.S. President took over that has made my heart absolutely ache — especially in 2019. Especially for women and minorities. With the half-way point of 2019 appearing in the rearview mirror, and the 2020 election approaching closer and closer, I realize that I can’t keep my gripes and personal opinions contained to my personal social media platforms only. It’s not like I have ever gotten any traction on anything here on my corner of the internet (which, let’s face it, has been radio silent for many reasons in recent history), but I’ve also never felt as strongly [politically] about something as I do about the importance of women’s health, and how important it is for the accessibility to healthcare and treatment.
The only intention of even putting this out there is the same as it has been in the past for me on social media: to connect with people. To inform of the struggles of a condition that likely affects someone, or many someones, that you know. Women’s health is so many lightyears behind what it could be, and something has got to change. If enough women can find the courage and the platform to say something, including myself, then maybe something can change. It’s better to try than to not – right?
[Something Creative] 