A few months ago I attended an informative meeting about Endometriosis treatment in Israel, run by Endometriosis Israel. Having been recently diagnosed with this debilitating disease myself, the evening was all at once overwhelming, thrilling, motivating, and terrifying. Lot's of words, basically. It inspired me by making me realize how much power we have, as a community, to get the treatment we require and deserve, yet it simultaneously reminded me how far we still have to go, as women in a man's medicinal world.
Where does the story of women and medicine begin? I'm sure it begins many years before this, but for me, it all goes back to that 19th century view on women's pain. The "Wandering Womb" was a theory that existed for way too long in the world, in my opinion. It was the claim that any unexplainable pain that women experienced was due to a stubborn and wandering womb, that would go to that particular part of the body and cause havoc. The fact that women's pain, when inexplicable by science, was blamed on the fact alone, that we were women, is disturbing. That, and the early research on endometriosis, which strongly resembles a similar theory, just shows us how far we have to go still, in the world of Women's Health.
Though that in itself is upsetting, it wasn't the thing that caused me the most grief at this event. What hurt the most was seeing all of the women, with nearly identical stories, tell, and retell their experiences trying to find someone to believe them. I learned it takes, on average, ten years for a woman to be diagnosed with Endometriosis. Some women are only finally diagnosed when they have infertility issues, and their complaints are finally taken seriously. I learned that about one in every ten women have Endometriosis. That's more people than suffer from Crohn's disease, IBS, Lupus, or other autoimmune diseases that have a huge name, and prominent awareness. These numbers don't add up. So many women are suffering silently, assuming this is normal.
On the other hand, once you are finally, properly diagnosed, don't think it's all smooth sailing from there. First of all, many Endometriosis patients require surgery, and finding the right surgeon is a real trip, sometimes, even quite literally. Many women have to leave the country to get better quality surgery, with a doctor who better understands the treatment for Endometriosis. When it comes to surgery, not all surgery techniques are equal, so you must be careful who you chose to go with. That being said, you haven't been "enlightened" until you have a man with a medical doctorate mansplaining to you how your female reproductive system works. It's not that male doctors cannot be good, I myself go to one who I really trust, (and I myself have experienced female doctors rolling their eyes at me, asking me if I looked up my symptoms on the internet,) but sitting there I was repeatedly reminded that half the battle is finding the right doctor to treat you, and that's horrifying.
Women told stories of their experiences convincing doctors that no, in fact, bleeding for 5 weeks straight was not normal, and agonising pain for 2 weeks out of every month did, in fact, make them "dysfunctional" when it came to going to work. I'm no medical professional, (yet,) but seeing the gap in trust between a doctor and the patient's knowledge of their own body, was deeply disturbing to me. Sick patients shouldn't also be burdened with seeking out someone who respects them. That should be a basic human right. Respect people, the way you wish to be respected. You may be a genius in medicine, but I'm a genius about me. I have lived with myself much longer than these 5 minutes I'm standing in front of you, so give me some credit. It came up time and time again, suggestions of doctors, not based on how well they did in medical school, but based on their bedside manner. Why can't we have both though? Why can't we have a medical field filled with people that are masters at their specialties, while also understanding and respecting the patient's knowledge of their own body. I was reminded this is so rare, and when you find it, you need to hold onto it.
As a (somewhat recently) diagnosed endo-sister, myself, sitting there made me realize that I don't think I trust my body, any longer, either. I've been told for so many years that what I was experiencing was my life being "too stressful" or that I was a "hypersensitive person," to the point that I often find myself curled up in bed during my period thinking, "Am I really in pain? Maybe I'm just being over dramatic... maybe that pad wasn't really as bloody as I thought it was.." It terrifies me that that belief, or disbelief, is so deeply ingrained in me, that I'd rather have surgery to prove it to everyone else, than just believe the one doctor who finally validated me, and told me she was almost certain I had endometriosis, without surgery. At the same time, I have that deep rooted self talk telling me, "better you don't get surgery, you know they will just open you up and find nothing, and then you'll REALLY know it's all in your head."
Lastly, sitting there, taught me that it doesn't have to be like this forever. It reminded me that change is possible, and it's coming; but that it takes time. Together, we can make it happen faster, more quickly and more efficiently. We need to keep warning each other about the bad doctors; the ones who make us feel like crap, or don't believe in our mission, no matter how good they are at surgery. We need to keep pulling each other back up, while also acknowledging that the down happens, and not let ourselves get depressed because of it. Being at that meeting reminded me that I have an infinitely strong sisterhood, that while I tried to run from in the beginning, can actually understand and believe in my story, and I need them as much as they need me. Together, we can do so much. We need to stop running from the things that challenge us, and we need to be better, not in spite of them, but because of them.
To find out more about women's health in Israel, follow the BirthBuddy Blog by signing up at www.birthbuddyisrael.com/blog