Imagine waking up one morning, excited to get the day started because you have great things planned. You get up to walk to the bathroom to begin your morning routine when all of a sudden you feel something running down your leg. You’re thinking to yourself, “did I just pee on myself?” but when you look down it’s not urine, it’s blood.
Here is my story. I was 11 years old when I first started my period. I knew what a period was like due to having older sisters, but I never expected to have so much pain or to bleed so heavily. I was only 11, so we figured the pain was normal and just dealt with it. It didn’t matter that I couldn’t go to school during my cycle because I was bleeding so heavily and that I could barely walk due to the high levels of pain. It wasn’t until I started high school that we started to worry. I went from only having pain during my cycle to always having pain even when I wasn’t menstruating. With the heavy bleeding, I was fragile and exhausted. Something was wrong.
My mom took me to see my very first OB/GYN to discuss what was going on. She didn’t have a clear answer but said birth control would help. Did it? Absolutely not, but as always I just continued to push through. In 2009, I was blessed with a beautiful baby boy. My pregnancy was so rough that I spent most of it in the hospital. Due to being high risk, my doctor didn’t think he would survive, but he did. When I received my first period after giving birth, the pain was so excruciating that I ended up back in the hospital.
I was given pain medication, but still, there were no answers. At this point, I had been to many different OB/GYN’s looking for answers but never received any. During September 2011, while I was talking to a coworker at work, I experienced a sharp pain on my right side. The pain was so unbearable that I immediately fell to my knees. I couldn’t move. At first, I thought that maybe it had something to do with the fact that I didn’t eat much that day, so when my coworker insisted that I go to the hospital, I declined. I just decided that when I got home, I would take a pain reliever and call it a day. Then she said, “God is telling me that you need to go to the hospital,” and I said okay.
When I got to the hospital, I underwent many tests to determine what was going on. Eventually, they told me that I had a cyst on my right ovary and that I should see my OB/GYN to get it removed since it was causing me so much pain. I decided that I wouldn’t go to my current doctor for this surgery and that I would seek out someone different. My mom’s OB/GYN was very good with cysts, so I went to see him, and we scheduled a laparoscopy for the following month. I remember a point in time after my surgery when I overheard two nurses saying that it was a good thing that I already had a son. I didn’t understand why they were saying this.
After surgery, I was at home and I kept asking my mom why I had so many cuts on my stomach if they only had to remove a cyst from my right ovary. She said we would talk to the doctor when I saw him the following week for my post-operative appointment. It seemed as if the days dragged by on purpose. As each day went on, I was very nervous, and I wasn’t sure why, but when the day of my appointment finally arrived I was very calm. However, I wasn’t prepared for what he was going to tell me.
As we discussed the surgery and looked at pictures, he told me that I didn’t have an ovarian cyst, but that I had Stage 4 endometriosis. Naturally, I was very confused because I had no idea what that was. I never heard of it in my life. I went on to ask him what that meant and how I could get rid of it. He explained the disease to me in great length, but when he said there wasn’t a cure, I was speechless, but all of these questions kept popping into my head. How long did I have endometriosis? Is this the reason why I’ve been in constant pain the majority of my life? Why didn’t any other doctor ever mention it to me? Does this mean I can’t have any more kids? The more I asked these questions to myself, the more upset I became. Luckily, this doctor was able to diagnose me, but why did it take 11 years to do so? After speaking with the doctor, he thought it was best to put me on a medication that would help control the endometriosis and possibly prevent it from coming back. At this point, I was willing to try anything if it meant the pain and heavy bleeding would stop. Unfortunately, it only got worse. The pain increased along with the bleeding, and I began passing out often due to the blood loss. I found myself being in the hospital more than I liked.
A year later, with my symptoms still not improving, I sought out yet another OB/GYN. I was hoping to get more answers that could lead to some relief. He decided to change my medication and to give it a few months to see how my body responded to it. Again, I was willing to try it because I wanted the pain to stop, but it didn’t, and I found myself prepping for my second surgery, and another year later, the third surgery with this doctor. So here I was after having three surgeries and still dealing with the pain and heavy bleeding.
The hospital became my second home because I was always there. I was starting to get frustrated and a little depressed because I read many stories about women who found relief after their first surgery, and here I was three surgeries in, with no ease. Why was that? So I went to see a new doctor, and again we changed my medication and gave it a few months to see how I would do. At this point, I also decided to seek a more holistic approach. It was costly, but what other option did I have? In doing my research, I was able to find someone that specialized in this.
On my first visit, we discussed everything, including my eating habits. He showed me articles and educated me more on endometriosis. Together, we created a plan where I would change my eating habits. He gave me a list of foods to stay away from and things to lean towards. He even ordered a special tea, which I would have to drink twice a day, that he said would help to alleviate the pain. I stopped my current medications and stuck to this plan. For about six months, my pain became more manageable. I was still bleeding heavily, but I was okay with that because I wasn’t having excruciating pain. After six months, everything seemed to go right back to how it was. Although I was eating healthier and exercising, the pain came back with a vengeance and I found myself right back in the hospital getting ready to have my fourth surgery with a new doctor. Life didn’t seem fair at the time. I was doing everything the doctors told me to do and yet I was still bleeding heavily; I was passing out a lot and the pain only got worse. I started to question myself. Did I do something wrong to deserve this? Am I a bad person? Why me?
The more I started to question myself, the more depressed I became. Now I not only had to deal with the physical effects of endometriosis, but the mental effect that it had on me. I was tired of seeing so many doctors, of being in and out of the hospital, and I was tired of not being the mother I needed to be to my child. I needed a way to deal with this and I wanted to know if it was possible to still have kids later on down the road. A year after my fourth surgery, I was referred to IVF. I was told that they specialized in endometriosis and would be able to further assist me. The doctor that I saw seemed very nice. I explained to him everything that was going on, but when he examined me, he said he believed something else was going on. He didn’t think it was endometriosis but said he wouldn’t know until he operated. It was as if he didn’t believe me, but I went ahead and scheduled my fifth surgery anyway and it was indeed endometriosis, only more severe.
After having five surgeries, I told myself that I wouldn’t have another no matter how bad the situation was. It was taking a toll on me and I just couldn’t do it anymore. Now I’m here, after having six surgeries, wondering when all of this will end. Even with new issues arising due to this condition and all of the surgeries that I’ve had, I continue to remain positive and have faith. I am no longer ashamed to say that I have endometriosis. By telling my story, I want to be an encouragement. I want to be a light in a time of darkness. Today, I stand with each and every one of you who battle this condition. Together we can make a difference and raise awareness all around the world.
Patricia Hackshaw was born in St. Croix U.S.V.I. At the age of one she relocated to West Palm Beach where she currently resides with her 11 year old son. She works in the field of education and teaches third grade ELA, math and science. Patricia enjoys reading, dancing, spending time with friends, family and doing arts and crafts. Although she has been living with endometriosis for 9 years, she aspires to continue to be an advocate and to one day publish a book.
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*Patient stories submitted to EndoFound.org are the views of the patient and not necessarily those of the foundation. All testimonials are from real patients, and may not reflect the typical patient’s experience, and are not intended to represent or guarantee that anyone will achieve the same or similar results.