A doctor convinced me to have a hysterectomy to treat my endometriosis.  She was wrong.

A doctor convinced me to have a hysterectomy to treat my endometriosis. She was wrong.

As told to Nicole Audrey Spector

Chronic fatigue and migraine attacks started 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 if the fatigue and migraine attacks stemmed from a mental health issue. My family and I just swept everything under the rug of an “emotional” rather than a physical problem.

Things would soon get much worse.

I lost my virginity to my husband shortly after we got married. The pain during and after sex was absolutely unbearable. It felt like shards of glass were breaking in my vagina and pelvis.

I am an orthodox Jew, like my husband, and in our religion women consult with a teacher, called teacher Kallah, to learn all about sex before getting married. My teacher in Kallah had warned me that sex could be painful at first, but that the pain would subside over time as my husband and I continued to have sex.

The pain hasn’t gone away.

Sex has not only become a chore, but a nightmare. Each time, it felt like knives were cutting me. The pain lasted for days after sex. It wasn’t just in my vagina, it was in my pelvis, back and legs, sending flaming daggers through me. I felt like I had to pee but I couldn’t. I was often bloated and had severe cramps, even when I didn’t have my period.

I didn’t want my husband to feel like 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 it. I wanted a normal marriage that included sex. Although we had been chaste before marriage, we had always had a strong attraction for each other and made out all the time. We couldn’t wait to take our intimacy one 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 discussed. It is considered a very private experience and should be held entirely in the home between the married couple. I never really thought about asking friends or family for help.

I finally told 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 have a glass of wine before sex. Basically, I was told my symptoms were all in my head. I believed the doctors who told me. They were the experts, after all.

I lived with the pain and soon became pregnant. Sadly, I lost my pregnancy after about three months, but during that short time the pain eased slightly. It took four years for me to get pregnant again, and when I did, I felt the pain less intensely again. Our daughter was born and soon after our son. My pregnancy with him was much more painful. I was having horrible cramps and kept thinking I was going into labor.

After giving birth to my son, the pain didn’t stop. Sometimes he took me to the hospital for weeks. The doctors were perplexed. They kept referring me to other doctors and prescribing me painkillers.

Rachel with husband and children, 2019

I finally saw an OB-GYN who took my symptoms seriously. I had a Laparoscopy, which finally led to a diagnosis: endometriosis. I had a ablation on parts of my pelvic cavity where they said endometriosis had taken root.

Knowing that I could be healed was one of the best moments of my life.

But my joy soon turned to devastation. I was still in pain after the procedure which I was told would fix it.

After going through the second, third and fourth opinion with every doctor telling me I should be better now, I met another OB-GYN who examined me and said there was still endometriosis in my pelvic cavity . He ablated it and said, this time, I really should be cured.

I wasn’t. But I remained under the care of that doctor. It had to be the best of the best. Finally he suggested that we do a radical hysterectomy. This would mean having my ovaries, cervix and uterus removed. It would mean the end of having kids forever, which wasn’t what my husband and I wanted.

I was crushed by the thought of a radical hysterectomy but no one told me there were other options available. So, under a veil of heavy painkillers that still didn’t ease the pain inside me, I accepted. I was only 28 years old.

Accepting the operation is among my deepest regrets.

The hysterectomy was completely unnecessary as far as my pain was concerned. To say I was heartbroken doesn’t begin to explain how awful I felt. I have become the 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 do tip ablation, but that doesn’t remove it, nor does a hysterectomy, because endometriosis can live anywhere in your body, even in your eyeballs.

My endometriosis lived in my pelvic cavity and vaginal and anal areas. I ended up having surgery with an endometriosis specialist to get everything removed. My insurance didn’t cover the surgery, so I raised $24,000 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 from the day the pain disappeared. My agony was finally over, but I had lost so much unnecessarily that it came to this moment of relief.

I speak up now because I refuse to let other women accept the false notion that their true 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 it now, after going through so much, so to no avail.

I now advocate for myself in healthcare settings and hope my story inspires other women to stand up for themselves when it comes to critical decisions about their well-being. And I hope I never see another woman hurt the way I hurt myself due to a lack of knowledge of her options.

This resource was created with the support of Sumitomo Pharma.

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