~I noticed a strange lump while wiping after urinating~
After about three months of feeling the bulge, I took a hand held mirror to see what was going on down below. I was a bit shocked to see what looked like a large tumor coming out of my vagina. I wasn't scared, I'd never heard of vaginal cancer and I had no pain, but I knew whatever was going on had to be addressed. I emailed a friend who is my primary care clinician and she said come on over for a pelvic exam.
Upon examination my clinician friend stated in a matter of fact way "you have pelvic organ prolapse, I will fit you for a pessary, and if you are not happy with the pessary, I'll refer you to a urogynecologist to explore surgical treatment. I had never heard of any of those 3 terms prior to that day. When I arrived home, I immediately started googling pelvic organ prolapse (POP) and was shocked to see how much information was available, and that nearly everything I read said the same thing...it's so common, it's very common, extremely common....if it's so common, I couldn't understand how I'd never heard of it. As I read about POP, I started recognizing multiple symptoms I'd experienced over the years, chronic constipation, tampons pushing out, vaginal and rectal pressure. Then I became angry. I knew I had to do something to generate change, that if I’d never heard of pelvic organ prolapse after being so pro-active about my health, there had to be millions of other women unaware as well. My journey began with writing a book to get information into the hands of women. The 1st edition of Pelvic Organ Prolapse: The Silent Epidemic, enabled me to reach women. While marketing the 2nd edition of my book, I recognized if I wanted to generate POP awareness, guidance and support effectively for women, I should found a nonprofit. Association for Pelvic Organ Prolapse Support (APOPS) was born September 2010.
In this day of exposure to incredibly graphic materials in a multitude of formats, I couldn't understand how it was possible that a condition impacting what is estimated to be 50% of the female population and on medical record for nearly 4000 years could be so shrouded in silence because of stigmatizing symptoms. It just didn't make any sense to me. I also couldn't understand how despite being very pro-active about my health, particularly my pelvic health while navigating fertility treatments to conceive, I could experience a common condition that I'd never heard of. I'd even asked the gynecologist who scheduled my hysterectomy 14 years prior to my POP diagnosis what stops stuff from falling out-I'd opened the door. Unfortunately, she simply assured me I had nothing to worry about and made no mention of pelvic organ prolapse.
My diagnosis was grade 3 cystocele, rectocele, and enterocele; my surgical repair was transvaginal mesh. At 8 years past surgery, I am still happy with my surgical choice and would make the same decision if I had it to do over. Every woman's needs are unique, every woman must make her own choice whether to move forward with surgical or non-surgical treatment for POP, analyzing a multitude of subsets of treatments with guidance from a POP specialist. What is most important is that women with POP do something; pelvic organ prolapse will not magically go away or cure itself.
The most significant value that has come out of my journey is the birth of APOPS. Association for Pelvic Organ Prolapse Support unites women around the world as one, providing a sisterhood of support and guidance for women from teens through end of life, from diverse race, nationality, employment, socio-economic, and educational strata, we are quite simply-women. As our voices get stronger and louder, change will come and soon all women will know about pelvic organ prolapse ahead of the curve.