As I plan what Ask Me About My Endo is going to do this year, I have simpler goals. I want to finish a video I started last summer documenting my out-of-state excision surgery. I want to make more Rubys to send out to women around the world who are in need of comfort and support. I want to put part of the proceeds toward women seeking surgery. And I want to continue getting people to talk about Endometriosis. That, of course, was our first and most important goal.
As a community, we've made some amazing strides. It seems as though almost everyone I mention Endometriosis to has at least some semblance of what it is...a painful disease that has something to do with your period. Just this week, a video surfaced from Buzzfeed of all places. With over 3 milion Youtube subscribers, this video reached more people than I think I could ever possibly dream of. My little organization is run out of my home, in my down time, when I feel healthy enough to work on it. Today, I am in bed, on the first day of my period, having yet to take any form of pain medication, over-the-counter or prescription, but I know that my adenomyosis will not let me lead the day I would like to. The disease within the wall of my uterus can only be removed with a hysterectomy, so I continue to live with this pain until that day comes (hopefully soon). However, I'm sitting upright. I can move freely side to side. I am not vomiting. It is possible that I might feel faint if I have a lot of bleeding, but for the most part, this is a vast improvement from where I was two and a half years ago, before I had excision surgery.
When I shared the Buzzfeed video to our Facebook page, I commented that the girl in the video needed to learn about excision surgery. In the video, she claimed that surgery after surgery, the pain kept coming back. That Endometriosis will always come back (if you're having ablation surgery, the most common type, it probably will). She also explained Endometriosis as being a disease where the lining of the uterus somehow travels outside the uterus and implants.
Unfortunately, this is not entirely accurate. Current research suggests that Endometriosis is laid down during embryonic development. It is already there when we are born and it is just a matter of when it will mature and start causing pain. There is also research suggesting a link to the use of pesticides, ironically conducted in the region in which I grew up. There is no scientific evidence that Endometriosis is caused by retrograde menstruation, the most popular and outdated theory known as Sampson's Theory, wherein they think the endometrium has no place to go so it travels outside the Fallopian tubes. This is what most doctors are taught in medical school, and is why it is so hard to get effective care. Myths such as that pregnancy can cure Endometriosis, that hormonal suppression (birth control, medical menopause) can halt disease growth or preserve fertility, or that Endometriosis cannot occur in girls and young women stop us from getting effective care.
We are most likely born with this disease, and when our disease is left in our bodies, it grows deeper. It damages our organs. What's more, it destroys our lives.
There are better treatment options out there. The most common types of treatments offered cannot remove the disease or prevent more growth. They can mask symptoms, they can buy us a few months of even years of pain relief before we are right back where we were before, or worse. I am a prime example. I spent 15 years living with this disease, five of which was in medical menopause, being told there was no hope. I could take pills, or injections, or get pregnant, but no one ever told me that there was something better. Meanwhile, my body was being damaged by a disease left unchecked.
My passion for sharing the hope of excision surgery is what drives my desire to spread awareness. If we keep talking about Endometriosis as a disease with no hope, as something we must merely deal with, we are not moving toward a cure. No cure currently exists. Yes, pain can still persist after excision surgery, typically from co-morbid conditions like interstitial cystitis, adenomyosis, pelvic floor dysfunction, adhesions, and neuropathic pain. Then, there is the case of true recurrence, which can happen in 5-20% of cases post-excision, depending on the skill of the surgeon. Does that mean that we ignore the amazing hope that excision surgery can give us? Do we dismiss surgery and just keep talking about Endometriosis in the same old way, as a condition we will never beat?
My answer is no. My life was changed by excision surgery. I was barely surviving living with 20 different areas of Endometriosis. Am I completely pain free today? Unfortunately, no. I continue to live with adenomyosis and a body that has had organs removed and is tied up with adhesions. But it is better. There is hope! My opinion may not be popular, and it is by no means an easy road with an easy fix. It is so easy to get discouraged when surgery doesn't magically erase the damage. I know...I've felt that. I battle every day the emotional pain that Endometriosis stole my youth and my ability to have children. But I won't let that get in the way of moving forward.
Next month, March 2015, it's our time. Endometriosis Awareness month is a big time for us to use our voices and spread awareness about our disease, to fight for more effective care and hopefully, someday, a cure. I urge you to use your voice to spread the right kind of awareness. The kind that doesn't perpetuate the same old myths. Pregnancy is not a cure. Drugs do not prevent growth of disease. Better care is out there. It's time for us to fight for knowledge and access to better care, fight for getting Endometriosis its own medical specialty, coverage from insurance, educating new doctors and nurses in the truths about our disease so if they can't help us, they will know who can.
I hope you will join me, and Ruby, next month for Rubys on Parade, and help get the word out that there is hope, and we are here to help you find it.