It has 5,012 members. 5,012 women suffering from endometriosis, and those are just the ones who happened upon this facebook group and decided to join. 5,012 women hurting and looking for answers. And here is where I have my confession to make:
I have known women in my life who have suffered from endo. Do you know what I thought of them? I thought they were weak. I thought they were hypochondriacs. I thought they simply had “bad periods” (and didn't we all have that from time to time?) and were latching onto a diagnosis to wear on their sleeves for sympathy. A diagnosis to define them and to excuse the days they didn’t feel like going to work or school, and instead preferred to lie in bed watching lifetime movies and avoiding the real world. I was disgusted by them. I thought they weren't trying hard enough. I am ashamed to admit that this is what I thought, but it is. Perhaps it is some kind of poetic justice that I should be shown the truth of endo first hand now.
It is thought that endometriosis affects some 20% of women, and in infertile women endo is to blame at least half of the time. The most simplistic explanation I can give is that endometrial tissue (the stuff that is usually shed from your uterus every month during your period) implants itself in other areas of your body, and then it too sheds every month; only it has nowhere to go. This causes scar tissue, which eventually builds up. That scar tissue can fuse organs together, and this can continue to cause pain long after your periods have stopped. No one knows what causes endo (although there are theories) and there are no cures. Even women who have hysterectomies sometimes still experience pain for the rest of their lives. Every woman’s symptoms are different, and sometimes extreme cases result in minimal pain, and vice versa. In my case, the endometriosis has implanted itself in several areas of my body. My kidneys and bladder are both hot spots, and as such it is almost always uncomfortable for me to pee. My appendix was removed because the endo had caused it to start leaking, and my bowel was half way closed off by endo tissue my last surgery. Both my tubes are destroyed; one was removed and one left behind simply to give me hope. My left ovary is completely scarred into my pelvic wall, and my right one seems to attract endometriomas (cysts filled with this tissue that bleed). My doctor isn't sure, but she also thinks I have implants on nerve endings which give me shooting pains frequently enough down my right hip. There is nothing she can really do to remove those implants, so she hasn't looked to confirm this theory. I actually have pictures of all this, but no one would ever want to see those, right? I mean, I’m probably the only one who is fascinated by those horrible photos of my insides… I find myself looking at them morbidly from time to time and wondering what it would be like if they looked “normal”.
When I first started suffering, the people in my life looked at me like I was making things up. I had just moved across the country (leaving behind a strong support group of friends), just gotten into (and out of) my first “real” relationship, and there had been multiple visits to the Doctor which had all resulted in him blaming stress. Still, starting with that first missed period, I just knew something was wrong. Before the pain (before any other signal) I said that I was either pregnant, or that I would never become pregnant. People looked at me like I was crazy, but I just felt it. I had an ominous feeling that something was really wrong. Even after my first surgery, I still remember thinking “This isn’t over.” I had no reason to think that, but I just felt it. And 5 months later, there I was, going under again.
I knew my friends and family loved me, but I could also feel their eyes upon me those early days. I could literally hear them thinking “has she lost it? Should we be watching her more closely?” But I knew. I knew something wasn’t right, and I knew the pain I felt. Still… Even I found myself questioning what was going on with me as my Dr. at the time continuously shooed me away. I started to wonder if maybe I had become a hypochondriac. I couldn't figure out why I was so sure, in spite of a Doctor who didn't seem concerned at all.
Years ago I questioned those women with endo, and now I am one of them. I used to find it suspect that their pain always seemed to hit on days that would have otherwise required a lot on their part, and then I found myself in the emergency room the day of my best friends baby shower. I used to think they were simply pill seeking, until I (a woman who used to avoid taking even tylenol) was the one crying and screaming and begging for more meds; lacking any and all dignity and just wanting relief.
I try not to allow the pain to bring me down. I strive to go to work and maintain my schedule, even on bad days. I concentrate on keeping my complaints to a minimum and slapping a smile on my face even when it's hard. I’m afraid of being seen as weak; afraid of someone looking at me like I used to look at them. It’s gotten better since the Lupron, but now there are the headaches and nausea. It still isn’t easy.
There is no defining the pain, the fear, the uncertainty of endo. There are millions of women who carry that badge, but as with any chronic pain disease it gets brushed aside more often than not as “all in their heads”. No one who has never been in the position of having pain that they can’t explain (or assuage) can ever understand.
Do you know? Are you one of those women for whom entire days are spent in pain? I try to be strong, I try to overcome. And in truth… the pain, the sickness, the constant fatigue: all of that I can handle. It’s the fear of never being a mother because of this disease that truly threatens breaking me.
I’m sorry. For every woman I ever judged and for every time I questioned motives. I’m sorry.
Can I be forgiven?
