As reported to Nicole Audrey Spector.
Chronic fatigue and migraine attacks began for me in high school, leaving some days unable to function. With my history of depression and anxiety making diagnosis impossible, my family and I just assumed they were emanating from emotional problems rather than physical ones and shrugged it all under the rug as emotional rather than physical issues.
Things would quickly worsen.
Shortly after we married, I lost my virginity to my husband and the pain during and after sex was unbearable – like having broken pieces of glass scattered through my vagina and pelvis.
As my husband and I are Orthodox Jews, women consult with an advisor called a Kallah teacher before marriage to learn all about sex. My Kallah teacher advised that it may initially be uncomfortable when engaging in sexual relations but would ease over time as my partner and I continued having sexual encounters together.
Pain was never going away and sex became not only a chore, but a nightmare. Every time, it felt like knives were cutting deep into my vagina; its effects continued for days after. Not just my vagina was affected either; pain spread throughout my pelvis, back, legs and more — stinging like burning daggers right through me and leaving me wanting to pee but being unable to. Additionally, bloat often occurred even when not on my period and severe cramping would often ensue.
I never wanted my husband to feel responsible for my discomfort; otherwise he may stop wanting sex with me in response. Instead, I desired an ordinary marriage wherein both parties indulged sexually. Though we’d been chaste before marriage, we still enjoyed strong sexual attraction between us both and made out frequently; therefore we were looking forward to taking our intimacy further.
So I kept the pain hidden as best as possible, not just from my husband but everyone in general. In my community, sex is considered highly private experience that should only take place within marriage itself and so I never considered seeking assistance from friends or family members.
At one point I confided to my husband the amount of pain I was in. I sought medical assistance from various specialists including OB-GYNs who advised that my symptoms were normal and suggested relaxing, practicing meditation and having a glass of wine before engaging in sexual activity – basically telling me my symptoms were all in my head – something which I took at face value because they were the experts.
After four years, I became pregnant again, feeling less intensely the second time around than with our daughter (I had horrible cramps that made me think it would never end!). Our son soon followed soon afterwards, his pregnancy being much more uncomfortable as I thought I might go into labor at any moment! Our daughter came first, then our son. His pregnancy had much more painful cramps that led me to believe I might go into labor soon!
After giving birth, the pain from childbirth never subsided despite my best efforts at relieving it with medication prescribed by various doctors and referrals to other specialists. No matter where I went for help, doctors only kept referring me back and prescribing more painkillers – leaving me in hospital longer than necessary and with more doctors’ appointments for my continued suffering.
After months of suffering with my symptoms, I finally saw an OB-GYN who took them seriously. A laparoscopy revealed endometriosis; we performed ablation surgery on areas in my pelvic cavity where they believed endometriosis had taken root.
Realizing I may be cured was one of the greatest joys of my life.
But my happiness quickly turned to disillusionment as my pain persisted despite what had been promised as the solution.
After seeing multiple doctors who told me I should be feeling better, only for each to reassure me of my condition, I saw another OB-GYN who examined me and identified still-present endometriosis in my pelvic cavity despite ablation efforts, stating this time should really be my cure. She performed surgery on it and declared me well on my way towards healing.
But I remained under this doctor’s care; she was supposed to be one of the best. At some point she suggested I undergo a radical hysterectomy – which would involve having my ovaries, cervix and uterus all removed, potentially ending any chance for future children in my lifetime – something neither my husband or I wanted.
At 28 years old, I was shocked and horrified at the thought of needing a radical hysterectomy but had no choice in it due to no one providing me with alternative solutions. So with heavy painkillers no longer helping ease my suffering inside me, I agreed.
Undergoing surgery was one of my biggest regrets.
My pain from my hysterectomy had no tangible benefits whatsoever; to say I was devastated would be an understatement; in truth, I became almost nonexistent after it all occurred.
After meeting a doctor who examined me and explained that endometriosis is like an iceberg: you can remove its tip with surgery but that won’t solve anything; also hysterectomy won’t do anything since endometriosis can affect any part of the body including eyeballs.
My endometriosis affected both my pelvic cavity, vaginal, and anal areas, requiring surgery with an endometriosis specialist to have all the endometriosis removed. Unfortunately, insurance did not cover it so I raised $24,000 myself to afford this.
The doctor assured me that, six weeks later, my pain would have subsided – and sure enough, exactly six weeks to the day, it did so – but not before much unnecessary suffering was endured in reaching this moment of relief.
Now I speak out because I refuse to allow other women to believe the false premise that their real physical symptoms are all in their head. Women deserve an open dialogue regarding all available options before making life-altering decisions – something I did myself but now realize should have happened sooner.
Now, I advocate for myself in healthcare settings and hope my story will encourage other women to advocate for themselves when making key decisions related to their well-being. Furthermore, my ultimate goal is for no other woman to experience suffering due to ignorance about her options.
This resource was produced with support from Sumitomo Pharma.
Do you have an Real Women, Real Stories experience you want to share? Tell us.
Real Women, Real Stories are authentic experiences shared by real-life women that do not reflect or endorse any official policies or positions held by HealthyWomen.