As told to Nicole Audrey Spector
The chronic fatigue and migraine attacks began in high school. Some days I was completely unable to function. Because I had a history of depression and anxiety, it was impossible to know whether the fatigue and migraine attacks were stemming from a mental health issue. My family and I just sort of swept it all under the rug of an “emotional” rather than physical problem.
Things would soon get so much worse.
I lost my virginity to my husband shortly after we were married. The pain during and after sex was absolutely unbearable. It felt like shards of glass being broken up inside my vagina and pelvis.
I’m an Orthodox Jew, as is my husband, and in our religion, women consult with a teacher, called a Kallah teacher, to learn all about sex before they marry. My Kallah teacher had warned me that sex may be painful at first, but that the pain would go away in time as my husband and I continued to have sex.
The pain did not go away.
Sex became not just a chore, but a nightmare. Every time, it felt like knives were slicing away at me. The pain lasted for days after sex. It wasn’t just in my vagina, it was in my pelvis, my back and my legs — sending burning daggers all through me. I felt like I had to pee but couldn’t. I was often bloated and had severe cramping, even when not on my period.
I didn’t want my husband to feel like he was the cause of my pain, because he wouldn’t want to have sex with me if he thought he was hurting me. I didn’t want that. I wanted a normal marriage that included sex. Though we’d been chaste before marriage, we’d always had a strong attraction to one another and made out all the time. We’d been looking forward to taking our intimacy a step further.
So I hid the pain as best I could. Not just from my husband, but from everyone. In my community, sex is not openly talked about. It’s considered a very private experience, and one that should be kept wholly in the home between the married couple. I never really thought to ask for help from friends or family.
Eventually I did tell my husband how much pain I was in. I sought medical help from a number of doctors, including OB-GYNs, who told me the pain was normal. I was told to try to relax, try meditation and to have a glass of wine before sex. Basically, I was told that my symptoms were all in my head. I believed the doctors who told me this. They were the experts, after all.
I lived with the pain and soon became pregnant. Sadly, I lost the pregnancy after about three months, but during that brief time the pain slightly lifted. It took four years to get pregnant again, and when I did, I again felt the pain less intensely. Our daughter was born and soon after, our son. My pregnancy with him was much more painful. I had horrible cramps and kept thinking I was going into labor.
After I gave birth to my son, the pain just wouldn’t quit. Sometimes it landed me in the hospital for weeks. Doctors were at a loss. They just kept referring me to other doctors and prescribing pain medication.
Rachel with her husband and children, 2019
Finally I saw an OB-GYN who took my symptoms seriously. I had a laparoscopy, which led to a diagnosis at last: endometriosis. I had an ablation on parts of my pelvic cavity where they said the endometriosis had taken root.
Hearing that I may be cured was one of the best moments of my life.
But my joy soon turned into devastation. I still had pain after the procedure I was told would fix me.
After going through second, third and fourth opinions with every doctor telling me I should be all better now, I met another OB-GYN who examined me and said there was still some endometriosis in my pelvic cavity. She ablated it and said, this time, I really should be cured.
I wasn’t. But I stayed within that doctor’s care. She was supposed to be the best of the best. Eventually she suggested that she do a radical hysterectomy. This would mean having my ovaries, cervix and uterus removed. It would mean the end of having children forever, which was not what my husband or I wanted.
I was crushed by the thought of a radical hysterectomy but no one told me there were any other options available. So, under a veil of heavy painkillers that still didn’t help the pain inside me, I agreed to it. I was only 28 years old.
Agreeing to the surgery is among my deepest regrets.
The hysterectomy was completely useless as far as my pain went. To say I was heartbroken does not begin to explain how horrible I felt. I became a shell of a person.
About a year later, everything changed. I met a doctor who examined me and explained that endometriosis was like an iceberg. You can ablate the tip of it, but that doesn’t remove it — nor does a hysterectomy, because endometriosis can live anywhere in your body, even your eyeballs.
My endometriosis lived in my pelvic cavity and vaginal and anal areas. I wound up having surgery with an endometriosis specialist to have it all removed. My insurance didn’t cover the surgery, so I raised $24,000 in order to have it.
The doctor assured me that, six weeks later, my pain would be gone. And wouldn’t you know it, exactly six weeks to the day the pain disappeared. My agony was finally over, but I’d lost so much so unnecessarily to arrive at this moment of relief.
I speak out now because I refuse to let other women accept the false idea that their real, physical symptoms are all in their head. Women deserve a conversation about all the options available to them before making life-changing decisions. I certainly did. I realize that now, after going through so much, so unnecessarily.
I now advocate for myself in healthcare settings and hope my story will inspire other women to advocate for themselves too when it comes to critical decisions about their well-being. And I hope to never see another woman hurt the way I have hurt due to lack of knowledge of her options.
This resource was created with support from Sumitomo Pharma.
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