I Lived With Painful Endometriosis Symptoms For Years — Now I'm On A Mission To Help Others Find Relief
I have a vivid memory of being in the boardroom with my three male partners at the company I used to work for in the U.K. I recall bending down in excruciating pain, attempting to mask the agony I was experiencing before presenting my quarterly strategy.
Not long before that, I had done what I used to do every day: I had picked up my cappuccino on my way to work. But that morning was different. Doubled up with pain, I fainted on the floor of the coffee shop. Then, I still drove to work.
I simply had to pretend I was doing OK in front of my CEO and the rest of the leadership team. I also felt I had to be an example to my team (taking time off at that company was judged as a weakness) and be seen as a resilient woman who could cope with everything. This was very much my modus operandi, but the stress of living with the pain of endometriosis and managing a very demanding job as an executive was pushing me to my limit.
Until this moment, I had never fully realized the ramifications of this condition, nor was I prepared for what lay ahead.
I lived with excruciating endometriosis symptoms for years, without a diagnosis.
My hormonal imbalance started at the age of 21, with fibroids—a very common condition—but it can be painful nonetheless. I had my first surgery to remove fibroids at that age.
At 23, I started having very painful periods, and by the time I was 28, I was diagnosed with endometriosis. I lived in some form of pain (sometimes unbearable, sometimes manageable with the help of frequent high-strength painkillers) around 40% to 60% of the month. By the time I was 35, I had gone through two further surgeries.
When I fainted before that meeting, I knew it was coming back. I was 37, married at the time, and we were trying to have a baby. I went through an IVF round, and it was useless; I had less than a 10% chance of conceiving, the doctor said.
My dream of getting pregnant was fading away, and the ultrasound showed the endometriosis was back. A possible chance of conceiving was to go through yet another surgery "to clean up" my ovaries (or what I had left of them), so I duly had my fourth laparoscopy.
After that, I still didn't manage to get pregnant, but I finally had a somewhat stable period. My checkups looked OK and I was relatively pain-free for a little while, probably about 12 months.
Then endometriosis turned my life upside down.
Fast-forward two years; we moved to New York. My marriage broke down. I then started my own company and was going through a divorce. The pain was back, and, at times, it was unbearable.
As I boarded a plane to visit my family in summer 2018, the pain was so bad the cabin staff put out a call to see if there was a doctor on the flight. Luckily a pharmacist responded and gave me a strong painkiller.
I finally got home, but I couldn't stand up or sleep. After numerous hospital trips back and forth, they found I had Stage IV endometriosis, and it had infiltrated my colon. Three weeks later, I went through a full hysterectomy and a colon resection. The surgical team had started with a less invasive laparoscopy, but they found my organs to be so deeply infiltrated, they had no alternative but to open me up. It was incredibly hard, physically and psychologically.
I then went through what is referred to as "surgical menopause." This is when surgery, rather than the natural aging process causes a woman to go through early menopause. My doctor gave me excellent guidance and explained what that meant and what symptoms I should expect: I had hot flashes, sleepless nights sweating, and I would cry for no reason. She prescribed a hormone treatment, and after about six months of taking it, I had some side effects, which included tremendous pain in my legs.
I then did some research of my own until I finally managed to find the best prescription for me: bio-identical hormone treatment. The main difference between synthetic hormones (the ones created by pharma companies) and bio-identical hormones is accuracy. Bio-identical hormones replicate the molecular structure of naturally produced hormones (estrogen, testosterone, progesterone, etc.), resulting in a hormone that functions far better than synthetic forms. This deserves another chapter in itself, as it has worked like magic.
Now, it's my mission to educate others and share resources about endometriosis.
Today, I am pain-free and I feel stable, finally.
That was the start of this new chapter. I promised myself I would help anyone I could and that nobody should go through the hell that I lived through, alone. I found it was inspiring to talk to other people dealing with hormonal-dysfunction-related conditions. It made me realize that sharing experience and knowledge can change someone's life.
A friend put me in touch with Tamer Seckin, M.D., FACOG, founder of the Endometriosis Foundation of America (Endofound), and I have been volunteering and helping his team with business partnerships and connections so they can continue funding for research. I am now chair of their advisory board.
I realized that what I truly wanted to do was to start my own way of giving, and a friend suggested I should start Hormone University, a platform to offer straightforward education and to empower people through better hormone health. I truly believe that all of us could benefit from more knowledge, tips, and ideas from our community and help from experts.
Finally, here we are. What a ride. Now, my goal is to empower others to take control of their lives and have the tools on hand to be able to prevent pain whenever possible. My dream has started. It's still a seed but slowly getting the nourishment to help it grow and become a reality.
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