I’ve been on quite a journey the past six months. I have gone from being a completely healthy, excited, world traveling, newly married, glowing, heart-exploding-with-happiness human to a sick, grey-skinned, weak, sad, feverish human in chronic pelvic pain.
I saw nine doctors.
Nine doctors who couldn’t figure out what was wrong with me.
I had blood tests, urine tests, CT’s, MRI’s, ultrasounds, biopsies, pelvic exams, full body exams, a colonoscopy, more blood tests, more urine tests, another CT scan, and finally a laparoscopy. I was living in constant pain, pain that showed up one-day and didn’t go away.
Over time, I could see my life slipping out from under me. Not my actual life, but the things that make you feel alive. Social engagements with friends, traveling, having a date with my husband, even working, it was all slipping away. It started out slowly, I was still able to do things, I would just be really tired and in pain afterward.
Over just a few weeks this turned into not being able to leave my house for more than an hour. My only social engagements were doctors appointments. I had to turn down jobs, back out of commitments that I had made months before, even cancel leading a Yoga Teacher Training in Brazil. I was devastated.
One night, somewhat early in this journey, I decided to lie in my bed and just get really quiet in hopes that somewhere in my mind I was able to hear what I needed to do to get help.
The first words that I heard, within seconds of becoming quiet were, “Something is not right.”
I knew this was my call to go on a journey back to my health. I knew that no one else was going to do this for me, that I had to take it into my own hands.
I became relentless. I wouldn’t take no, or “I don’t know,” for an answer from my doctors. I called for more appointments, I researched on my own, and I did everything I could for the state that I was in. I was downright obnoxious to my doctors, but I didn’t care. I knew the person that I had been just months before, and I knew this wasn’t right.
My doctor and I finally came to the conclusion that the only way to truly know what was happening would be for me to have a laparoscopy (abdominal surgery through a small incision (or incisions) using a tool called a laparoscope). He didn’t know what he would find and at this point he wasn’t convinced that he would find endometriosis, but he said, “Anything is possible.”
According to the Huffington Post endometriosis is described as: “a debilitating chronic illness estimated to affect 5 million women in the United States alone. It occurs when cells similar to the lining of a woman’s uterus exist in other parts of her body. These misplaced cells bleed, cause inflammation, and can bind organs together.” It has also been described as an “chronic, incurable, auto-immune disease.”
He said that I didn’t exhibit a lot of the “typical symptoms” of endometriosis. Although I think he is a great doctor, I think this is due to the fact that no one fully understands this disease and what it is capable of—all I knew was that I had been in pain for six straight months, and had had a low-grade fever every single day for three months.
After scheduling my surgery for three weeks away, yes, three additional weeks of pain, I was asked to wait even longer. The biggest snowstorm in 100 years moved into New York City the day before my surgery, so they cancelled. It. I couldn’t understand how it wasn’t an emergency.
I couldn’t understand how just because I wasn’t excessively bleeding or screaming in pain, how that disqualified it as an emergency. I had to wait two more weeks.
I survived only by not moving (literally from couch to bed, and back, that’s it) and taking pain medication. What a sad, sad way to live, and unfortunately a way that many women with endometriosis are currently living. Two weeks passed and I finally had my surgery.
Four hours later, I came out of surgery and went into recovery. It had taken three surgeons to clear out the endometriosis and adhesions from my insides. I had adhesions removed from my intestines by a colorectal surgeon, stints placed in my bladder by a urologist, and all of the endometriosis removed by my gynecologist.
I’m still recovering; it’s only been three weeks since my surgery. Physically I am recovering, still in pain every day, but I know that will keep improving. What I am more focused on is that emotional trauma that has occurred, and that occurs with each woman who is fighting endometriosis.
The trauma of not being heard.
The trauma of doctors telling you nothing is wrong, that you’re “fine.” The trauma of losing the life that you loved. The trauma of being confined to your house. The trauma that is caused by all of the not knowing that this disease brings. I know what you’re thinking, “Only three weeks? How are you even writing this right now?” But I can’t wait. Waiting one more second in silence makes me feel like endometriosis is winning.
Winning by keeping us silent.
I consider myself one of the lucky ones. Isn’t it sad that the story I just told of constant pain for six months is a good case scenario? According to an article in the Huffington Post, the average woman will see five doctors and wait an average of eight to 11 years before receiving a diagnosis of endometriosis.
Endometriosis affects everyone differently. Many women will have severe cases and never have any symptoms, while others have only a small amount that causes extreme pain. Many women are leery of speaking to their bosses, male friends, sometimes even female friends, about what is happening to them, because so few truly understand.
It can be a very isolating disease because it seems that no one understands, or it makes people uncomfortable to talk about. At this point, not even doctors fully understand it.
There is currently no cure.
In the past this issue has been considered a women’s issue, but it’s not. This is a family issue. This issue affects everyone. This affects every person that knows a woman with endometriosis, her partner, her children, her parents, her co-workers—everyone. So many women suffer in silence, because they are used to having no one understand what they are going through. Luckily I had the most support that I could have ever asked for.
Those who know me knew that something was not right the second I said, “I don’t feel good.” They stayed with me every single step of the way. When I couldn’t even put my socks on because I was in so much pain, my husband was there to put them on for me.
When I wasn’t leaving my house at all, my best friend (who also has endometriosis) would call me and not only ask me how I was feeling pain-wise, she would ask, “how are you doing mentally?” knowing that this disease affects your mind just as much as your body.
My parents would write or call every single day, sending me encouraging messages, and helping to keep my spirits up. I had friends near and far offering to help me in any way possible, to bring food, sending flowers, groceries, cards, gift cards, even warm fuzzy socks.
Every woman battling this disease deserves this. Every woman battling this disease deserves her doctors to listen to her.
To not challenge her observation of her own body, to not just throw pain pills at her and send her home, to become educated in this disease so that we don’t just treat it—we cure it.
March is Endometriosis Awareness Month. So I urge you, if you or someone in your life suffers from endometriosis or symptoms that seem like they may be endometriosis, please reach out to her. Please show your support in whatever way you can: donate to endometriosis research, wear yellow during the month of March, just listen to someone who is suffering.
This disease goes way beyond having to take a few days off work each month; it can truly steal the life right out of someone. I was one of them. I truly believe that without the support of those around me, encouraging me to find answers, preparing food for me, washing my clothes, and even my hair—literally carrying me through life when I couldn’t walk myself, I have no idea where I would be.
Please be this support for someone. Please reach out to them and let them know they’re not going through this alone. Together we can make it through. Together we can beat this.
Published on Elephant Journal.