After years of being in pain and being ignored, and misdiagnosed, I was done playing games and wanted a serious gynecologist. I wanted an endometriosis specialist. Not just someone who heard the term in passing, but knew what it was and to treat it. Living about 90 minutes away from a healthcare and medical mecca, this meant visiting the Cleveland Clinic. They are world renowned for a number of specialties, but I wasn’t sure if endo was that well known where they would have an entire department devoted to it. Not only do they have a department, they have well known specialists who handle endometriosis treatment. I wanted someone who was going to listen, and willing to take on my ongoing health challenges. I would get an appointment, but because I was a new patient, it would take a couple months to get in to see this new gynecologist who not only knew the term endometriosis, but specialized in handling and treating its various symptoms.
Not only did she listen, she heard me. That’s right listened AND heard. She would empathize with what I was going through, noted my signs and symptoms and referred me to an endometrial excision specialist. While she said she could treat most endometrial symptoms, my having a partial hysterectomy already and still bleeding was a major red flag to her that I needed to have endometriosis properly removed. She would be there for the surgery but only to assist the excision specialist, who listened AND heard just as well as she did. I happened upon the endo gold mine of doctors. They didn’t dismiss my complaints of pain, they wanted to address them for the long term.
The original partial hysterectomy surgery 6 years earlier left 1 ovary to avoid hormone replacement therapy since I was so young when it was performed. This time, I would not be as lucky. Various scans and tests showed that my remaining ovary was no longer functioning, covered with endo and cysts and desperately needed to be removed. In addition, I had the special skill of growing an endometrioma. This is a tumor like mass that is filled with endometriosis that feeds from surrounding tissue. It grows extensive blood vessels and becomes self-sustaining. This lovely little ball had grown through the vaginal cuff and made sex unbearable. Every time I had sex, the endo tumor would be angered and bleed in retaliation.
These fabulous endo specializing ladies would remove multiple spots of endometriosis and the endometrial tumor which was the source of pain and bleeding. They cleaned up all my endo sites and sent me on my way. I would follow up several times with each of them and obtained my clean bill of health. I was pain free once again, but this time it would be a little different – I had no female organs left so I would need to take hormone replacement therapy to keep menopause symptoms under control. I would happily take this little pill if it meant I would not suffer mood swings and night sweats each day. I no longer see a local gynecologist and only see my endo specialists at the Cleveland Clinic. While the local docs might be great for routine things, I have found my health issues are anything but routine therefore I only rely on specialists for my care now. My mental and physical health is far too valuable to leave in hands of those not found in my gold mine of care.
This post was originally published on September 10, 2018 on Endo.Net at
https://endometriosis.net/stories/finally-doctor-heard-chronic-pain
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