The NIH Needs YOU
With only two more participants needed to complete this ground breaking study, the NIH is looking for candidates so they can bring their findings to the FDA
When I was 15, I didn't know what endometriosis was, or any of the other pelvic pain conditions that many women have that go unproperly treated. All I knew was that, when I got my period, it lasted 5-10 days and I felt awful. My very understanding parents let me stay home from school to recover. But the absences added up and I was suspended. My father brought me into school to reason with the Principal. Between both of my working parents, my dad was the one immediately available to handle this and he was more than willing to defend his daughter. However, 15 year old me did not understand this at the time and was mortified. Perhaps these could be excused, no need to take punitive action, right? However, the principal, another man, could not care less. My dad took me home, and told me to take another day off from school guilt free and to not sweat it. Maybe it is easier for my dad to understand Invisible iIllness, as he suffered from migraines most of his life, which I would grow to inherit from him later myself. Maybe he's just an awesome dad (he's totally reading this, so thanks Dad).
After going to a gynecologist to be placed on birth control, I carried on with my life. My personal story of invisible illness being disregarded and dismissed, particularly because I am a woman, is no different than many, many others. Thus, I will not get on my soap box about that here. But I've been called a hypochondriac, had a fellow student tell a professor during my undergrad that when I said I was sick I wasn't really sick, almost collapsed at work because I was told to come in or lose my job (I lost it anyway).
What is "invisible illness" you ask? As defined by the Invisible Disabilities Association:
Invisible Disability: noun
".... physical, mental or neurological condition that limits a person’s movements, senses, or activities that is invisible to the onlooker. Unfortunately, the very fact that these symptoms are invisible can lead to misunderstandings, false perceptions, and judgments."
In 2013, after my boyfriend carried me to the ER three times in two months, I finally saw a doctor who was willing to look harder at my issue. I was confirmed via surgery to have endometriosis. I've had surgeries, all kinds of medical treatments. I'd even been told at one point that I may have to give up my music career and spend my time managing my pain with regular visits to pain clinics. Luckily, that was not the end to my story.
Then, my friend Latisha sent me a Buzzfeed article "I got Botox In My Vagina and it Changed My Life". With much better pith and writing style, Lara Parker talks about her experience getting Botox injected into her vaginal wall to treat vaginal wall spasm which can cause some pains associated with pelvic pain conditions. Yes, folks, you read that right - botox... injected into your vagina. If you want the details, because I am a private person, go on over to Lara's very well written article. But, I can tell you that after reading it I emailed the link at the bottom and got a response from the NIH. After being determined eligible, I've spent the past 8 months a participant of this study, and I'm so glad that I did this, needles in wierd places and all.
I learned at my recent checkup that they need 2 (TWO) more people to participate in the study before they can bring their findings to the FDA. Do you know that 1 in 10 women may have endometriosis? Not to mention all the other pelvic pain conditions that women silently grin and bare? Why? WHY? And these wonderful, wonderful people at the NIH are trying to do something about it.
So why is this important?
Even though this treatment is currently available, without approval from the FDA and coverage from health insurance, this treatment costs thousands of dollars per injection. Think of how many women's quality of life could be improved if this were approved as a valid medical treatment.
Please share the information below so that this we can get this study completed and brought to the FDA:
Researchers are seeking ways to relieve pelvic pain in women with endometriosis.
Learn how you can participate: http://clinicaltrials.gov/ct2/show/NCT01553201?term=12-ch-0083&rank=1