(Last name and city withheld by request)
It’s a miracle I am on the face of the Earth. I’m grateful that I am here to tell my story; I honor my body and my pain experience. I believe in the sacred relationship between body, mind and spirit. I am committed to bringing honor to people in chronic pain and those who treat chronic pain.
A pregnancy should be a time of great joy and celebration. It took every ounce of energy to celebrate our second pregnancy with my loving husband. I could barely leave the bathtub. I had such acute pain from chronic yeast and bladder infections that I sought refuge in the tub. It felt like I should go to an emergency room, but what could they do for yeast and bladder infections? I was treated with anti-fungals and antibiotics but the pain would not go away nor would the infections. My OB/GYN said stronger medicines could be used after the delivery. I was anxious for the time when I could obtain relief.
Our delivery was a challenging one and the doctor guided our daughter into this world. I felt a special bonding with our doctor after navigating a complicated delivery. A year later, this condition was still not diagnosed and the doctor felt biopsies would reveal the missing piece of the puzzle. This very trusted OB/GYN “cut” my labia in six locations with no anesthesia; he pinched the tissue and said it would hurt as much as anesthesia, but would be quicker.
There was so much ignorance of women’s bodies and healthcare in 1988. The doctor diagnosed Vulvodynia and I was told there were two options: burn the vulvar tissue or remove the vestibule and advance the vaginal tissue. I thought the CO2 laser was the best option but there were serious consequences. It felt like acid poured into an open wound when I urinated and two facing tissues started to adhere as they healed. It was difficult to take care of two babies when I could hardly take care of myself. Sadly, it did not take care of the problem and I had chronic pelvic pain as well as significant bladder/urethra issues. I kept reminding myself that tomorrow would be different. Do not lose hope. I asked for a referral to a nearby university.
The long referral pattern led me to the Detroit area where a supposed national expert was treating women for this problem. I had six laser procedures which minimally helped the pain. After serious allegations were revealed, his state license was stripped and he moved back to his home country of Australia. One of his patients gave into despair and ended her life with the help of Dr. Jack Krevorkian. The best thing I received from this supposed Vulvodynia specialist was a recommendation for an infectious disease specialist at Wayne State University. He was immensely helpful in managing the chronic yeast problems and sharing his knowledge.
I was relentless in finding help for the bladder issues. At the fourth university clinic, my urogynecologist diagnosed Interstitial Cystitis. I have been through several courses of treatments and have had some improvement. I had serious gastrointestinal side effects from the oral medication and irritable bowel was diagnosed at Mayo Clinic March 2007. About the same time, Hashimoto’s thyroid disease was diagnosed by a local endocronologist with blood tests. My local chronic pain anesthesiologist and acupuncturist suspected I had Fibromyalgia and prescribed an anti-seizure medication. In January 2008, Fibromyalgia was diagnosed by a local rheumatologist. With all of these specialists and their care, I have begun to feel better.
I have had to fight for human dignity and hope. It has been a long, tiring journey and I encourage everyone in a similar situation to affirm your pain and have faith that some answers are around the corner. Let your spirituality guide you when doctors tell you, “You’re screwed. Your nervous system is screwed up. There is no cure.” Cry when you need to, but maintain your search. I am working on forgiving people for cruel comments and violations of my body. I am determined to transcend all pain and experience peace. I am determined that the next generation of women will receive the care they need and deserve.