Three months ago to the date, I took a really personal matter to my blog and went on a tangent about life with endometriosis. Well, its March, and guess who's back with another tangent? This time, we're going a little deeper, because I am royally fed up with the way endometriosis is handled throughout society and HEY- It's Endo Awareness month, so why not?
Endometriosis is a condition that causes the uterine lining to grow outside of the uterus. It can basically grow anywhere- any organ in your reproductive system, the intestines, appendix, bladder, etc- and it is extremely painful. It can cause heavy and painful periods, pain between periods, pain with urination, nausea or vomiting, pain with sex, digestive issues, brain fog, fatigue, infertility, miscarriage and after years of misdiagnosis and medical professionals who refuse to take one seriously- emotional trauma. In the advanced stages, it can literally fuse your organs together. ONE in TEN WOMEN are diagnosed with endometriosis, and it usually takes anywhere from seven to ten years to be diagnosed. Until recent years, endometriosis was very much overlooked. There was not a lot of research being done about it, and most women who complained of symptoms that could've been related to it were simply shut up with a birth control pill and advice to eat healthy food.
In my case, it took me about five years- five years of being kind of sick, two years of being sick, and about a year of being really sick. Five years of countless doctors, countless shrugs and "Try this birth control", many choruses of "I think you're overreacting", random misdiagnoses, terms like "endometriosis", "PCOS", and "PMDD" thrown around like ping-pong balls without anyone willing to follow up on them, pills I was taking for reasons I didn't really understand, and pure frustration. Listen, I know I am dramatic- but this was real. By the end of it, I was consistently missing work, was passing out from pain, and could barely function. I was withdrawing from people in my life because I could not handle more "this is normal, take an Advil" when I was experiencing this pain nearly every day. I was consistently angry, as no one seemed to understand. The ER doctors didn't know what to tell me either. The tough girl became the sick girl who didn't know where to go. On multiple occasions last year, I desperately called my doctor to get an appointment so they could physically see the pain I was in and hopefully it would help them give me a diagnosis, and I was told by a receptionist to go to the ER- they didn't know how to help me. It was that easy. One morning, I woke up on the bathroom floor after a night of horrendous pain that probably should've landed me in the hospital and my best friend, who was sick of watching me go downhill, pulled out her phone and decided to start researching endometriosis specialists in the area. Within the hour, we found a specialist at Cleveland Clinic in Fort Lauderdale. By stroke of fate, I got an appointment to see him the following week.
The moment I sat down and described my symptoms, he said "I see ladies like you every day. I think you do have endometriosis. Let's get you in for surgery. Don't worry. We are going to get to the bottom of this" and I don't think I have ever heard such beautiful words. He is my angel.
I had surgery eight days ago today. I'll save you the dirty details, but they found what they thought they would- pockets of endometriosis and large ovarian cysts that they were able to remove. Nothing about this surgery is as easy as they make it seem. They blow you up with air and are cutting pieces of tissue out of your organs. I came out of surgery successfully and safely, and I am so lucky.
Unfortunately, millions of other women are not so lucky. Many women come out of this to news that they are infertile, or very damaged. Most women with endometriosis hear the words "IVF" or "infertility" far too often. Many come out with stomas, as this disease has infiltrated their bowels and doctors are forced to cut pieces of their intestines out. Many women are told their condition is too severe and they need to have a complete hysterectomy. It is baffling to me that the government continues to cut funding for endometriosis research.
As if this post wasn't TMI enough, here's a couple pictures of me and my battle wounds. I'm really proud of them. It has taken me a long time to get here, and I have been through hell. They say our silence keeps us sick and our silence will keep other women sick. Hopefully these pictures gross you out enough to spread the word.
If someone you love is struggling with any of these symptoms, encourage them to speak up to their doctor or find one who will take them seriously. Hopefully the next few generations won't have to deal with endometriosis the way we have had to deal with it. Let's find a cure. Fuck Endo.