This page is about the cause I support through the proceeds of my art. This cause is Endometriosis Research and Awareness. It is important to me because it is something that I have battled with for more than half of my life along with many other women, and I think more people need to know about it. Having Endometriosis has shaped my life in many ways and has also played a large role in my art career. Not every woman suffers with it to the same extent, but this is my experience.
It is also necessary to note that I wrote this page, and no one in the Endometriosis Organization is responsible for these notes except for me. Although I think my notes coincide with information you will find on the official website. To read what the official organization says about endometriosis, you should refer to their website www.endometriosisassn.org.
A brief overview on Endometriosis and what it is: Endometriosis affects an estimated 1 in 10 women during their “reproductive years” (that’s the years between starting your period and menopause). This are approximately 183 million women worldwide, who have endometriosis – regardless of their ethnic and social background.
Endometriosis is a condition where tissue similar to the lining of the uterus (the endometrial stroma and glands, which should only be located inside the uterus) is found elsewhere in the body. Endometriosis lesions can be found anywhere in the pelvic cavity: on the ovaries, the fallopian tubes, and on the pelvic sidewall. Other common sites include the uterosacral ligaments, the cul-de-sac, the Pouch of Douglas, and in the rectal-vaginal septum. In addition, it can be found in caecarian-section scars, laparoscopy or laparotomy scars, and on the bladder, bowel, intestines, colon, appendix, and rectum. But these locations are not so common. In even more rare cases, endometriosis has been found inside the vagina, inside the bladder, on the skin, even in the lung, spine, and brain.
The most common symptom of endometriosis is pelvic pain. The pain often correlates to the menstrual cycle, but a woman with endometriosis may also experience pain that doesn’t correlate to her cycle. For many women, the pain of endometriosis is so severe and debilitating that it impacts their lives in significant ways. Endometriosis can also cause scar tissue and adhesions to develop that can distort a woman’s internal anatomy. In advanced stages, internal organs may fuse together, causing a condition known as a “frozen pelvis.”
It is estimated that 30-40% of women with endometriosis may not be able to have children.
Facts and Questions about my Experience with Endo and my Art:
How old were you when you found out you had Endometriosis? Did the doctors think it was something else? First reactions to diagnosis?
I was 18 when I had my first “episode” of which I now know was endometriosis. For about a year, the word endometriosis didn’t even come up among the doctors I had been seeing…I was examined for and treated for all sorts of things including ruptured appendix, kidney stones, gall bladder, acid reflux, IBS, crohn’s disease, hormone imbalance, you name it! I think it probably wasn’t until about nine years ago that I had most definitely been diagnosed with endometriosis. It is such a strange condition that even many doctors don’t know enough about yet. Unless you are seeing credited specialists, your answers could be all over the place. When I first started getting “sick,” I definitely thought I was on my way to death, not only because of the severe pain I was in, but because it seemed like a cancer that no one could figure out. I thought eventually, I would have to deteriorate completely, or die because I had no money left to live from all the medical bills. When the doctors most definitely diagnosed me with endo, I wasn’t surprised and I was more relieved than anything because I finally had some concrete answers.
Once you found out and got treatment, how did your everyday life change?
Once I found out, I explored my options for treatment. Another bad thing about endo, is that there is no one treatment that works for everybody. Two different people can take the same treatment and one might end up well, the other not, they might both end up well, or they might both end up with no relief whatsoever. Your odds are better at gambling than your odds are for getting the right treatment for endo. I have tried all sorts of things to treat my endo and there have only been a couple times where I might get a couple months consecutively pain free. During those pain fee times, life was most definitely easier because I didn’t have to plan my entire life around the disease. Unfortunately, you can’t predict how long a working treatment might help either. In my case, and like many other cases, life has not changed for the better knowing that I have endo, because there is no cure. I’m just more aware.
What do you find works best for you to deal with the pain and other side effects of endo?
The most important thing in dealing with endo, is associating with others who support me, help me, and try to understand the condition. Endometriosis dictates my life because of all of the intricacies that come along with the disease (poor immune system, extreme pain, confusion, eating habits, sleeping habits, severe constipation, allergies, asthma, etc). If someone doesn’t understand endo or has no desire to, then they simply will not “get it” and there is no purpose in the relationship. In addition to having empathetic people around, I have found that strong anti-nausea meds, strong pain killers, good doctors that try to help, eating very low sugar diets (keeping estrogen levels down), good heating pads, lots of baths, taking care of my health the best I can, and acceptance are the ways I deal with the pain and side effects of endo. Taking the anti-nausea meds and painkillers on the slightest knowledge of onset usually helps to keep the pain from getting unmanageable. For me, the standard methods of treatment (like birth control, lupron, etc), did not help, so I went as far as having a hysterectomy at the age of 28, no kids. This still did not help. Therefore, acceptance that the disease will always be a part of my life is easier than believing something will work. That is not to say that everyone with endo should feel this way because all cases differ in severity, however all endo sufferers should try to educate themselves well on the condition so that they understand it and don’t feel alone in the process of suffering.
Was there a moment, a turning point, a change in how you viewed life because of this, and how did it lead to your art?
Endometriosis is not exactly why I chose an art career. Art chose me. I accepted it, and then I honed my inherent abilities that God gave me. However, I do feel that the issues still go hand in hand and there is definitely a “bigger picture” to recognize. When I made the decision to pursue a career in art, I was already a working artist in high school and my original dream was to do makeup for television and movies (still artistic). For a short time, I did indeed try to pursue a career in makeup. But, having endo as bad as I did, forced me to choose a path in the arts that allows me to dictate my own schedule most of the time, where I can endure pain if I have to and still paint. I can still be happy doing what I do to survive, but also live with a painful conditon that a 9-5 workingwoman might not be able to withstand. For some women, their career or relationships run their life. In my case, after God, endo and art run my life, and everything else has to fall into place after that. In a morbid way, I am lucky that the two work well together.
Is there advice for women who have not been checked out, advice for those trying to deal with the condition?
There is advice for anyone interested in knowing any more about endo. www.endometriosisassn.org is the best site to begin the search for answers. Here you will find recommended books, help groups, tips for dealing with endo, and most importantly, you will find others that can relate.
Why did you choose so open and vocal about having endo when so many choose to stay quiet?
I am open about my endo because it is who I am. If I don’t talk about it, awareness will not increase, and there may never be a cure. Even if there is no cure in my lifetime, I hope that I can help make an impact in finding a cure for the future endo sufferers. Nobody deserves to go through the pain if they don’t have to.
Do you plan on using your artistic talent to benefit endo research and awareness and if so, what are some of your goals?
I do plan to use my talent to benefit endo research and awareness. I believe that as human beings we should always try to give back when we can. Because time and physical abilities are limited for me, I want to give back at the same time that I receive. My goal is to give a percentage of all proceeds that I receive back to the endometriosis association so that there will be more opportunities to increase research, awareness, and support groups.
Bringing my journey with endo up to date:
In 2011, my doctor at St. Josephs Pelvic Pain Center performed a surgery on me to remove endometriosis again, as well as any scar tissue. This surgery allowed me to have almost four years of life mostly (but not completely) pain free. This time of my life was a true blessing. In 2015, the endo pain started returning and even worse in my upper organs near my diaphragm, causing monthly and sometimes weekly episodes where it hurt so bad just to breathe or even lay down. On May 19th, 2016 I will be getting another surgery to remove any endo or scar tissue that has grown back in my pelvic and abdominal cavity.