Goal of this website
Endometriosis doesn’t just cause painful periods and potentially harm a woman’s fertility, this disease can have a MUCH greater impact on a woman’s body and quality of life. Internal organs in the abdomen can become stuck together, scar tissue from surgeries can continue to grow and can cause pain. In addition, Endometriosis and scar tissue on organs can cause a variety of issues in a woman’s body, including bowel and bladder issues. There is an endless list of other symptoms suffers have to tolerate day to day. Luckily there are some dedicated doctors and other professionals (and regular people like me!) that are putting efforts into sharing information about this disease and trying to help find a cause, better treatment options, and maybe ONE DAY, even a cure! There are two overall goals of this website. First and foremost the purpose of this website is let those with Endometriosis know they are not alone and to provide a place anyone can go to vent, share their own story, and/or ask questions. The second main goal is educate the public on this very cruel disease. Endometriosis truly needs more attention in the medical field, more research is needed to understand this disease, and better treatment options need to be discovered.
Hi I’m Dana, here is an overview of my story….there’s no real way to make this short…but I’ll try 🙂
After 14+ years of suspicion, I was finally officially diagnosed with Stage 4 Endometriosis at 30 years old. It was only after a 7+ hour surgery by a Gynecological Oncologist that I was provided the diagnosis. At the time I was scheduled for surgery, like many other women, the cause of my symptoms was unknown, however ovarian cancer was likely and so I was told to consult with a Gynecological Oncologist. During my first surgery my left Fallopian tube and left ovary were removed, both of which I was told were unrecognizable. Endometriosis was all over my abdomen, covering much of my abdominal organs, bladder, both ovaries, uterus,ureters, and my intestines had to be removed from the left side of my abdominal wall. There was a 9cm mass which consisted of a cluster of multiple ovarian cysts that had taken over my left ovary. There are many more details to share, but that summarizes that first surgery. Since then my life consists of continued symptoms that come and go, regular ultrasounds etc. A second surgery took place a year after the first, more endometriosis removed, another endometrioma removed as well as my appendix.
In addition to Endometriosis I also was diagnosed with Lupus in 2016 after 10+ years of doctor’s visits and tests with no diagnosis. I had many symptoms over the years but it was after a year of having a cut on my head that didn’t heal, would often bleed, and eventually began to cause me to lose my hair, that caused me to finally go to the doctor. A biopsy was taken and finally proved that I did have Lupus.
For a long time I hesitated on sharing my story because I felt like there are so many people in the world dealing with so much worse. I was concerned my sharing would be perceived as complaining. I guess I’m someone who is just used to “dealing with it”, I’m not really even one to go into too much detail with even my closest friends. However, something changed for me….. While going through this whole experience I would often go online looking for information, posts by others etc and the more I read the more I began to hear other women’s stories that sounded similar to mine. It was through listening to other women’s stories that helped create a sense of reassurance that I’m not alone, that there are other people out there that know how I’m feeling. Once I was able to feel and see what that kind of available information and support did for me personally, I knew I wanted to create a website to help others in a similar place. One of the other great motivators for this website is to help put the spot light on Endometriosis. It is my personal goal to help spread the word about this disease in hopes that this added attention can help contribute to the progress in the diagnosis and/or treatment of Endometriosis.