Today I want to talk about being a woman and what that can entail. I hope you read all the way to the end (whether you’re a male or female) because this is a topic that we often don’t allow young girls to talk about and then they feel left behind in society, like I did and sometimes still do. This is a very important story of a large aspect of my life. I want to break through the taboo topic of menstruation, so that if something is out of “the norm” a girl will know, instead of assuming everyone goes through the same thing.
I started menstruating when I was 12. I was lucky to be well educated on the matter thanks to the school system I was in and my mom allowing me to be a part of health education starting at the age of 9. When I got my period, I was at a friend’s house. I ransacked her bathroom cupboard, figured out how to use a pad, told her I needed to go home early, then walked home. I told my mom what happened and she stocked me up on supplies. I bled heavily. I was uncomfortable. It lasted 8-10 days every time.
When I was 16 I had a searing stabbing pain in my lower right abdomen. It was so painful that I was unable to stand up straight or walk. I had an abdominal ultrasound. I had a cyst. I was prescribed low dosage birth control pills and told it would make the cyst shrink. I asked no questions. I was told nothing else. No other options. I was not asked about how I felt. I did not have any sort of exam. I took the pills.
Over the next several years I was on and off birth control pills to control the pain. The best way I can describe this pain is worse than giving birth. And yes, I have done that, so I can compare. I would get sweaty and so hot that I would feel like I was going to pass out. The room would spin. I couldn’t stop my body from curling into a ball because my abdominal muscles were contracting so hard. I would vomit from the magnitude of the pain. I laid on a lot of bathroom floors, because the tiles were cold and would help ever so slightly to cool me down. Because that would keep me close to the toilet. I would hold onto the walls to try and keep me upright while on the toilet. I would slip in and out of consciousness.
When I was in school I was told cramps were normal and to get on with my day. Take Midol! Midol couldn’t touch my pain. I ate Advil like it was candy. I was still in unbearable pain. I learned to hide what I was going through. I learned to cancel plans. The real pain came when I was of college age. During these years I lived with roommates and a boyfriend and I would hide away in the bathroom during these terrible fits of pain. Sometimes for days. How could this be normal? I was shamed by my boyfriend and his mother when I had frequent yeast infections. I must be promiscuous! I was a slut! You only get yeast infections from having sex with multiple people! I was heart broken. I was sick and confused.
I went through this increasing pain for many many years. I lost majority of my twenties to it. I had trouble staying in college. I had trouble keeping jobs. There was never enough sick time to cover my sick days. When I was 25 I left being a waitress (which gave me flexibility) so I could start a career and have health insurance. While in the training of this job I became increasingly ill. I ended up in the ER. I was put on a “final written warning” at my job because you weren’t allowed to miss one day of training. This meant that if I missed one more hour of time that I would be terminated. I was ridiculed by a female coworker saying I should know better than to miss a day. I should have expected the warning because those were the rules and it didn’t matter that I was in the emergency room. Another coworker overheard and later pulled me aside. She asked me if I had ever heard of endometriosis. It was an entirely new word to me. She said her mom had it and what I was describing sounded a lot like it. I researched it when I got home (and I recommend you do the same now, but here is a short description from endometriosis.org: “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.”) It had to be the answer. All of the symptoms were dead on. I made an appointment with a gynecologist.
This gynecologist listened to me for a bit and before I could even mention endometriosis, she did. She pulled out a large book to show me what it was and could look like. She said it sounded like what I had. I agreed. She said the only way to know for sure was to do a laparoscopic surgery. She didn’t think it was really necessary at this time. I was prescribed more birth control and pain pills. I was offered Vicodin and Hydrocodone. I was told the pain is hard to manage. I declined and asked for a non-narcotic pain reliever. Narcotics basically knock me out to not have to deal with the pain, but I needed to work, so I could eat, so I could have health insurance, so I could survive. I ultimately was given Toradol for pain and Zofran and Phenergan for nausea and vomiting.
Since a lot of my symptoms also revolved around my bowels and vomiting, the gynecologist sent me to a Gastroenterologist (GI). I had to undergo an endoscopy and colonoscopy. I ended up on 9 medications total. I was becoming sicker and sicker. I was down to a size 2. I ended up back in the ER getting a spinal tap because I lost the feeling in my hands and feet. The ER Doctor believes I had a reaction to one of the medications I was placed on by the GI. The worst part was when the ER Doctor told me I could continue to take it if I wanted, because it may help me sleep. This was a turning point for me. I realized that the doctors were not looking out for my best interest. I went home and started to research. I completely changed my diet and took myself off of all my medication. I slowly started to get better.
During this trying time, I met my husband. I maintained my health for several years with diet and exercise, but I was still sick. I was completely non-functional for 2-3 days a month. It was difficult to hang onto my career, but I did. Then my husband and I decided we wanted to have a child. I took myself off birth control pills, which managed the majority of my pain. I became very sick and was in severe pain around my periods and randomly throughout other times during the months. We weren’t getting pregnant.
It all becomes a jumbled mess in my mind sometime around this point, but I saw my gynecologist and she referred us to a fertility clinic. After going through some testing there they said they needed to check if my Fallopian tubes were open. I am allergic to iodine, so the typical method couldn’t be used. I went back to my gynecologist and we talked about the laparoscopic surgery. She said they could check my tubes that way and at the same time check for endometriosis. Around this time she was retiring from performing surgery and referred me to her partner who would be my surgeon.
I had a transvaginal ultrasound. I had many of these done over the years and they are awful. Painful, embarrassing, uncomfortable. Then my husband and I met the surgeon. I remember this day very clearly. We sat in a small room. I on the exam table. My husband in a nearby chair. The surgeon was an older man with white hair that formed a ring around his head. He was bald in the center and had glasses and a mustache. He told me that the ultrasound showed a lot of darkness around my right ovary and that it was most likely endometriosis. He said that it was so massive and major that once they got in there, they would most likely have to remove the ovary. I felt dizzy. I started to get hot. I saw stars. The room started to go black. He was still talking, but I could no longer hear what he was saying. It was muffled. I put my head down. I asked him to please stop talking.
After that appointment I Googled the hell out of removing an ovary. Ovaries do a lot more than just hold onto your eggs and release them. They control hormones, your mood, your bone density. I was terrified. I didn’t want a piece of me removed. It felt so wrong. I called my gynecologist and left her a frantic message. My husband and I decided to go out to dinner to try and relax and put the day behind us. My phone rang in the parking lot before we went into the restaurant. It was my gynecologist. I probably started to cry during that conversation. I can’t remember exactly, but I basically pleaded for my ovary. I was so scared that the surgeon would take it out without my permission. She assured me that it was not necessary to take it out and if I said no to having it done, then he couldn’t do it. Basically, it would be easier for him to remove the ovary and the mass of endometriosis around it, rather than try to delicately remove just the endometriosis and leave my ovary intact. It was a very reassuring conversation, but I was still so scared.
Surgery day came and everything went fine. It was a horrific night at home as the gas they filled my body with to perform the procedure rose in me and caused excruciating pain in my back and shoulders. My husband was on the verge of calling an ambulance, but I made it through that night at home. I was out of work for weeks and weeks unable to stand up straight. I had three incisions. My stomach was black from the bruising. At my follow up appointment with the surgeon he tried to show me pictures and I refused to look. I do not want to know what my insides look like. He was astonished at the severity of my endometriosis. Categorized as stage 4. My right ovary was totally engulfed and “glued” to my pelvic wall. My bowels were completely entangled in endometriosis. My Fallopian tubes were also engulfed. He removed every bit that he possibly could, cleared out my Fallopian tubes, and put my right ovary back in its rightful place. I was told if I wanted to get pregnant, I should do it soon. Within the next few months, as endometriosis comes back. It will be a never ending battle.
We went on another long journey after this with the fertility clinic. I had to quit my career. I would have never gotten pregnant without the surgery. During fertility treatments my right ovary was the only one to ovulate. My daughter would not be here if I hadn’t stuck up for myself and listened to my heart and gut and let the surgeon take the easy way out and take my ovary.
We as women need to be our own advocates with our health. So much is still unknown. Endometriosis has no known cause and no known cure. The earlier it is detected, the earlier symptoms can be managed. There are several ground breaking endometriosis surgeons in the United States that are taking great strides to completely remove endometriosis through revolutionary surgeries. One day I dream of seeing one in Atlanta Georgia, but until then I hope I can help to give at least one little girl a voice. I hope I can help just one girl to be able to recognize if something isn’t right with her body and be able to have the courage to talk to others. To compare how she is feeling with how other girls are feeling. To talk to someone who can get her help. To let her know she is not alone. She is loved and she doesn’t have to hide away in the bathroom in pain. And I ask that if you are a woman, that you talk to others about your body and what is happening with it. And if you are a man, I ask that you listen. I ask that you make it acceptable for women to talk about their bodies and what is happening to them. Lead by example and let all the little girls in the world know that it is ok to speak out about whatever is going on with them.
Your Endo Sister