The next leg of this journey with endometriosis

21 January 2016

This morning I got my first Depo Provera shot, thankfully in my arm and not my butt.

Most of you know I have endometriosis. Some of you even know most of the journey I’ve been on in regards to treatments and just daily life with this painful disease with no cure. I was officially diagnosed in 2013, but was first hospitalized with debilitating (and yes, literally) pain in 2010.

The main treatment for endometriosis is a laparoscopic surgery to excise all of the lesions within your abdominal cavity (or wherever else the endometriosis is growing). This surgery is also the only way to officially diagnose the disease. For the day-to-day life, well, some women are one-and-done after their surgeries, but for most it’s taking birth control regularly. I was on a variety of birth control pills to a varying degree of success. Mostly, though, over time, the birth control pills become less and less effective. In some cases, it’s like my body doesn’t even recognize that I’m on the pill and everything goes haywire.

That happened last fall. I was on a new, cheaper, but much higher dose of birth control. My body absolutely did not like it. I didn’t feel like myself at all. So I found a new doctor, who put me back on the last pill I had success with (but was too expensive for me to keep up with, which was why I’d been off the pill for a year and then was convinced to try the cheaper option). That pill worked well. For three months. And then I started noticing the pain coming back, and the nausea becoming more intense that I could handle on a reoccurring basis. Oh, and I was becoming highly emotional. I was crying during that Food Truck Challenge tv show… any time they donated something in honor of someone else.. I lost it completely.

And so, like I’ve done time and time before, I went to my doctor to talk yet again about my treatment options. Slowly and surely, I’m heading down the path towards a radical hysterectomy, but as I am still “young” they want to keep my childbearing options open as long as possible. (I, personally, am leaning towards the toss them all out I’d rather adopt for this reason and many others option. But hey, apparently doctors know what better for me about my life? Ugh.)

I can only been on Depo for 2 years. It’s a shot every 3 months. But with it, comes a high risk for decreased bone density, so we have to watch for osteoporosis. Which means I’ve got to get better at taking calcium supplements. And then, of course, after these 2 years are up, need to figure out if I go back on some formula of pill or another… or… who really knows what next. I’ll be 33-34 by the time I’m done with this series of shots. I’m hoping during this time I’ll be able to have another laparoscopic surgery done, mainly just to see how things are going inside me. If the amount of endometriosis is worse, or the whole adhering of my organs to one another is the same or worse as my initial surgery, well, I’m leaning towards the radical option. If it’s the same or better, well, that’s when things get fun as we have to figure out how to manage all of this until I eventually hit menopause. Which also means dealing with this until I hit menopause. Which is what? Another 20 years maybe? I’ve had “bad cramps” since high school, so I’ve already dealt with this for a decade and half or so. Regardless, it’s been far too long.

While I’m hopeful for the Depo to work, I’m hesitant too. Not just because of the bone density thing. Depo, according to the nurse who jabbed me today, is the #1 endometriosis medicine to cause weight gain. That alone almost made me want to go in another direction. Since starting treatment with birth control (which Depo is a form of), I’ve gained significant weight. We’re talking about 45lbs in about 5 years. Now, yes, some of that is lifestyle and diet. But a lot of it is just a side effect of my medications and also just my body’s reaction to the disease. Learning that I could gain even more weight, when I’ve been struggling to lose all of this already? Well, it’s a kick to the self esteem.

My self esteem has taken some pretty big hits over the years thanks to this disease. It’s hard to feel good about yourself, let alone feel beautiful and worthy, when you’re in constant pain, when you bloat all the time, when you are nauseous almost everyday, and when even just basic sexual excitement causes immense pain… How do you have a relationship with all of that? I know women do, but I’ve been struggling. What guy wants to date a girl who feels broken?

So I focus on other things. I know I can have an amazingly satisfying life without a romantic relationship. I’m super excited (and loving) my path in anthropology and at BSU. I’m spending more time with family. I’m working on my friendships. I am basically doing what I can to not let this hold me back. I know I should treat my dating life the same way, but if I have to make a sacrifice then that can be it. At least until I can make that sacrifice of giving up my organs and chances of carrying and birthing a child myself. And I think overall, I can be ok with all of this.

For now though. It’s just wait and see how my body reacts to the Depo. Hopefully it’ll work, and I’ll live out the next two years as normally as possible… and then go from there.

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