It's Endometriosis Awareness Month, and everyone is talking! In my last blog post, I wrote about my strong belief that as we spread awareness, we need to keep in mind what type of information we are conveying. It is vital that we share accurate, up-to-date information because there are so many myths that are widely believed as truths. The biggest myth, and I believe the most dangerous myth, is that if symptoms are relieved by a treatment option, such as diet change, hormonal suppression, or even during a pregnancy, the endometriosis must be gone or "in remission." 

This is something that I was led to believe by doctors for years, or at least led to believe that I was keeping my Endometriosis from growing and progressing. I stayed in medical menopause for almost five years, enduring horrible symptoms like fatigue, excessive weight gain, depression, and eventually bone loss because I was told that it would keep my disease from getting worse. I was even told that staying in medical menopause would preserve my fertility. 

All of this was false. Efforts to reduce inflammation, suppress estrogen production, and "starve" the Endometriosis can mask or relieve symptoms. I believed that my disease was being controlled because I wasn't having severe pain, and my ovaries weren't producing cysts. At one point, I joined an online support group because the side effects of my suppression were starting to overwhelm me. I hoped that my Endo Sisters might help me find a way to relieve the side effects, or at least to deal with the emotional aspects of being in menopause in my twenties! As I read through the posts by patients just like me, I began to think that all of these women were so much worse off than I was. They were having surgeries left and right, struggling with debilitating pain, some were being pushed to the breaking point by their disease...and I felt sorry for them. I tried to tell them how wonderful it was that my disease wasn't that bad. One woman reached out to me (and I consider her an angel now!) to explain to me about excision surgery...and I promptly left the group. I didn't need that! I was doing great! My disease was under control and when I was ready, I would have my babies and my hormones would "reset" and my Endometriosis would be gone!

Poor, naive 24 year old Kelsey. 

As it turned out, when I finally couldn't stand the hot flashes, night sweats, and lack of energy, and came off of hormonal suppression, the pain was mindblowing! I convinced myself that I had just forgotten how painful it was to have a period. It's hard to keep telling yourself that when new symptoms begin, like the stinging, pulling pain I had with every urination during my period, and the stabbing rectal pain during bowel movements, not to mention the weekly, severe bouts of diarrhea that not only kept me in my bathroom for 6 hours at a time, but also caused some of the worst pain and fainting spells I had ever had. 

It became clear that my disease had not been controlled. I soon found out that my fertility most certainly was NOT preserved (I couldn't even ovulate on my own once I started trying to conceive).  Everything I had been told since I had heard the word Endometriosis had turned out to be a myth. 

Most medical treatment options are based on the notion that Endometriosis is just transplanted endometrium, cells that escaped the uterus and implanted elsewhere. Extensive research, however, has proven that Endometriosis is not the same as endometrium. It is pathologically and histologically different. Endometriosis has the ability to produce its own estrogen, so even when we are on medical treatments, which attempt to cut off the fuel source that feeds endometriosis, it can continue to grow and progress. The sad part is, we may not even be aware that it is happening. Like 24 year old me, many patients and even some doctors believe that their Endometriosis is being controlled or even cured because their symptoms have stopped. I was told by one fertility specialist that he had "cured" many of his patients by helping them get pregnant (by the way, if a doctor ever claims this...run!). 

But why is it so important to bust this myth? If the patient doesn't have symptoms, who cares?! She is able to get back to her life, and perhaps she doesn't have many side effects. Perhaps she has found a way to control her disease that works for her. That's the goal in this life with Endometriosis; to break free from the chains it has placed upon us and continue to live happy, productive lives. 

It is important  because laparoscopic surgery and pathological analysis is the only way to diagnose Endometriosis. Endometriosis cannot be diagnosed based on a patient's response to hormonal suppression. I'm passionate about this because I know what it is like to take one medication after another, to be told it is "too early" for surgery, and meanwhile live a life in which I can't even stand to be in my own skin. I know what it is like to be on the other side of that scenario, when the treatment either stops working or I choose to stop taking it. Endometriosis fell back upon me like a ton of bricks, but it was 100 times worse than it had been before. My disease progressed while my symptoms were under control. By the time I had surgical intervention, my Endometriosis had been left to grow inside my body for 14 years. The damage was done. I've come out on the other side, I've had excision surgery, but chronic adhesions, multiple surgeries, and damaged or removed organs continue to leave their mark on my life, and my health record. 

Women with Endometriosis are being seen as a billion dollar industry, a market to be tapped. Keeping our disease inside our bodies, instead of cutting it out root to tip and sending it off to be analyzed by pathology ensures that we will continue to require treatments, many of which are exceptionally expensive and can cause long term damage to our bodies. There are people out there claiming to have a magic cure, and women who are desperate to try anything, only to find they've spent money on false hope. There are even people out there who are charging exorbitant amounts of money to teach us to love our Endometriosis away, to reconnect with our "womanhood" and unload our emotional baggage that is "manifesting" as pain in our pelvises. 


Comprehensive care, provided by licensed professionals and coordinated with an expertly trained Endometriosis specialist, can improve symptoms, quality of life, and our ability to manage life with a chronic illness. Any technique that can legitimately improve our lives in worth trying, and every body is different. Each program should be individually tailored to the patient.  The key to remember is that symptom management does not equal a cure for Endometriosis. Through comprehensive care, including a team of specialists in excision surgery, nutrition, physical therapy, and more, we can strive for higher quality of life and healing. The first step is dispelling myths and focusing on effective treatment options. 

As we move into our second year as an organization, the excitement and hope that I felt about spreading Endometriosis Awareness has shifted. When I created Ask Me About My Endo, I had a lot of big ideas and a whole lot of momentum. I wanted to teach, I wanted to organize huge campaigns and concerts, I wanted to change the world! A year later, life, as they say, has become complicated. 

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.