For every woman’s story about Endometriosis and/or PCOS it is laced with heartache, pain, and frustration. The words themselves cannot even begin to explain what one goes through when enduring the multitude of their symptoms. I’ve told a few people in my life that were close to me of the issues I have struggled with, but I have never truly expressed the mental, physical, and emotional pain this disease and syndrome has caused me. A lot of the times it is because it is too exhausting to explain and even after explaining it doesn’t feel like the explanation really does any justice to what someone experiences.
Endometriosis is invisible. No one can see it and you may look fine but in reality, it is anything but fine. For me it began when I first hit puberty. I suffered from immense pain, extreme bloating, extremely heavy periods, and fatigue. This will get graphic in my explanation, but this is every woman’s truth when dealing with this disease. My periods would be so heavy there were multiple times I had to wait until everyone left the class so that I could leave. I would drape my sweatshirt around my backside and carry my gym bag in front of me to block the bleeding that went almost down to my knees. This happened on several occasions. It affected a lot of different aspects of my life. At 17 dancing in at football games looking nearly pregnant in your leotard was mortifying.
After turning 18, I made a doctor’s appointment to get put on birth control in hopes of some relief. The day of I could barely move and had to have a friend drive me to the doctor’s office. The doctor came in and dismissed my laid-out body on the table. She dismissed my pain. She dismissed the fact I was having fainting spells and that I was in excruciating amounts of pain that I could not drive. What she did was prescribe me birth control. I won’t get started on birth control. I’ve been on just about every single one and have suffered from a bunch of side effects- circulatory issues, extreme nausea, hair loss, acne, weight gain, anxiety, and depression.
At 23, I went into the ER after throwing up, passing out, and having the most excruciating pain. I found out that I had a 5 lb. dermoid cyst that was causing an Ovarian Torsion to my right ovary (cutting off circulation to the ovary from the weight of cyst twisting the Fallopian tube). I was put into surgery immediately to remove it. It was then that I was diagnosed with Endometriosis and PCOS. It was also then that the doctor said had I waited any longer, I would have lost my right ovary. My right ovary was completely flattened out and I was told it “should” go back to normal. I spent 5 days in the hospital.
I continued with birth control as that was highly suggested. Fast forward past all the years of crying at the end of the doctors table asking what I can do to make this stop and suffering from cysts and cyst ruptures. One cyst hurt so bad I could barely walk because it hurt to move my left leg. All these different doctors suggested birth control.
At age 29, I went in for pain and they found a cyst inside my left ovary. This time around I was panicked, I was 29 with no kids and almost lost my right ovary, now it’s my left ovary? During surgery they removed the cyst and the surgeon cauterized the endometriosis he found. I got off birth control because clearly it was not helping much anymore and I tried natural alternatives to improve my situation. After this, I began to be sick daily, acne, hair loss, weight gain, anxiety, mood swings, pain, and the list goes on. I had dealt with these issues before BUT now it was intensified without having the birth control.
Next, I did the first logical thing anyone does which is go to the doctor to figure this out because there has got to be something better than birth control. That is when they found the cyst returned inside my left ovary. I once again, not even 7 months later, underwent another surgery to remove the cyst. This time around they removed the cyst found on my left ovary and another new cyst which had grown in less than 2 weeks on my right ovary.
Again, the emotional and mental pain I was suffering on top of the physical pain was terrible. All sorts of fears began creeping in. Can I have kids? Am I going to lose my reproductive organs before I try to have kids? Is this how it will be? I was so tired of feeling sick and horrible every day. After surgery, I went back to my doctor to get a plan to figure out how to get me normal. Her response…. “lose weight and only thing I can do is put you on birth control.” I left unbelievably angry.
That is when a sweet friend of mine shared her story on Facebook! I read her story and immediately started crying. Her journey reminded me of my journey. She explained she had finally met a doctor that specializes in helping women with Endometriosis. I have gained so much more new knowledge and best of all…hope. I undergo surgery for the 3rd time in one year’s time on May 30th for excision surgery to remove endometriosis. I finally feel like I have a doctor on my side that knows what he is doing and will help me through this.
In the end all I can say is, speak up, had my friend not I would not be getting the help I needed. Be your own advocate and don’t give up. Speak up because we owe it to ourselves and the medical industry owes it to us to become more knowledgeable, so we can get proper care.
— The Minnesota Endo Warriors are proud to share Shana’s remarkable story and are committed to providing a place of community and comfort to those living with endometriosis and their loved ones.
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