Periods. They are a subject that we aren’t supposed to talk about. It’s taboo.
Why? Periods are a natural part of being a woman. Half of the population experiences them and yet we still can’t talk about them. Well, I’m going to talk about them. If that makes you uncomfortable, deal with it.
After my cyst, my periods were all over the place. I never had a normal cycle. Sometimes it would be three weeks in between periods, other times it would be closer to five weeks. That made preparing for my period pretty difficult. My only warning side would be pain, and by that point, I didn’t have long before I started bleeding.
My periods weren’t overly heavy, but my cramps were awful. I heard my friends talking about PMS and their own periods and it sounded nothing like what I was experiencing. What did I know though? I kept my mouth shut and just dealt with it.
Eighth grade passed without incident, except that I moved across the country the summer between eighth grade and freshman year. I didn’t get my period for over three months due to stress. Then, of course, I had an absolutely horrible period on my second day of high school… what a joy that was.
That fall I had my first appointment with my new pediatrician. My mom came with me and we made sure to mention my weird and awful periods. She recommended going on birth control. By then I was fourteen and she saw no reason not to try birth control. I can’t remember which pill she prescribed me, but I do remember her telling me that there are plenty of pills, each with their own levels of estrogen and progesterone. If this pill didn’t work, we could just try another one until we found one that did.
She did mention that if I didn’t see any improvement after taking the pill that she wanted me to see a gynecologist. I respect her so much for knowing that there were some things that other doctors were more qualified to do and telling me to seek those doctors out.
I tried the pill for three months, which is a pretty standard trial period when it comes to birth control. There was no difference, except for the fact that my period now came every 30 days on the dot. Yet the pain was still there.
In the new year, I went to my first gynecologist. At fourteen, it’s a slightly terrifying experience. No one wants to go see their gynecologist, let alone when you are fourteen.
I will forever be grateful for my gynecologist. She is an amazing doctor who has a gift for putting people at ease but also for truly listening to them. Let’s call her Dr. Jane for brevities sake. Dr. Jane believed me from the very beginning. She never once tried to tell me that I was exaggerating the pain nor did she make me feel crazy when medication after medication did nothing for me. She was patient, progressive and kind.
Most women with Endo have horror stories of doctors who didn’t believe them, of going to specialists after specialist with no results. I was lucky to start with an amazing doctor, but that didn’t mean it was a straightforward diagnosis.
It’s at this point that I should mention that my mom has Endo as well. She was diagnosed at age 21 and her journey contained countless ups and downs, which ultimately ended with endometrial cancer. That is her story and I won’t get into it much. The reason I bring it up is due to the fact that there is a clear genetic component to Endo.
That meant Endo was always on our radar as we tried pill after pill, but none of us wanted to jump the gun and do surgery without exhausting as many options as we could.
For the next three years, I tried seven or eight different birth control pills. I honestly can’t remember how many. I tried each for at least three months, to really give it a fighting chance. Most of them produced no noticeable difference in pain or symptoms. A few made things worse.
The summer before my senior year of high school, we sat down with Dr. Jane to talk about the last pill, which had once again been unsuccessful. At this point, it was beginning to look like there were other factors at work. Dr. Jane wanted to try one last pill and I agreed.
Instead of being a typical birth control that contained one month of pills, it contained three months. That meant that instead of getting your period every month, you were only supposed to get it every three months. In theory, it sounded like a good idea. Even if my periods were still horrible, dealing with them only four times a year, instead of every month would be a start in the right direction.
That is when things really went downhill. I only lasted three weeks on that pill before an exploratory surgery was scheduled.
I had every side effect in the book. My hair began to fall out. I stopped eating. My vision went from being okay to being horrible. I wear contacts, but my prescription is far from horrible. One day, I went from being able to see to not being able to see the board at the front of the classroom in a single class period. Fast forward another hour and I could not even read the words on a computer screen sitting directly in front of me.
There was one other major side effect, one that I’ve never chosen to focus on. I became suicidal.
I am an anxious person, to begin with. I’ve experienced episodes of sadness, but never what I would consider a depressive episode. Generally, I am a happy person. All of that changed. I went from being normal to suicidal, skipping over any feelings that might be in between. I don’t think anyone really realized how bad it was. I tried to gloss over it because it scared me so much.
What made this whole situation worse was that the three weeks I was on the pill synched up to my first three weeks of senior year. I came home crying every night because my body hurt, and I was scared of myself and what was happening to me.
Dr. Jane didn’t even make me come into her office. She simply ordered me to stop taking the pill immediately and switched me to the lowest dose of birth control possible until the surgery. The side effects cleared up eventually, but from then on, I have been much more hesitant to take new medications.
I had my surgery on November 19, 2015. I had to be at the hospital at 5:30 in the morning because the surgery was scheduled for 7:30.
For obvious reasons, I hadn’t gotten much sleep. All I could think about was what the aftermath of the surgery would be like. Nine months earlier I had my first surgery where they shortened the ligaments in my ankle. To say that the recovery had been bad would be an understatement.
Let’s just say that anesthesia is not my friend. I got sick for days, unable to keep down anything including pain medications. I eventually ended up unconscious on the bathroom floor. I never wanted to experience anything like that ever again.
Sleep had also been elusive for another reason. The night before, I had watched the final installment of the Hunger Games movies at an early premiere. That meant the fangirl inside of me was busy analyzing every moment of the movie.
So, it’s 5:30 in the morning and I am freaking out. One of my pastors met us at the hospital and said a prayer with us before we checked in. For those of you that aren’t religious, you might not understand how much that meant to me, but it meant the world. I knew that I had an army of prayer warriors at my back who would do anything they could to help me and my family through what was to come.
I checked in and was given a hospital bracelet with all my information and also a bright red bracelet that listed my allergies. We sat for all of four minutes in the waiting room, my parents sitting on either side of me, holding my hands in a silent show of support.
Here is a super blurry picture of me getting ready to go back to surgery
When we were called back, I had to change into an extra-large purple hospital gown that could be hooked up to a machine that would either act as a personal heater or air-conditioner. I was given the standard blue socks with sticky white soles. All my actual clothes were put in a plastic drawstring bag.
The pre-op process started as soon as I was sitting in bed. Nurses circled in constantly, each finishing off a different aspect of a checklist. I was hooked up to an IV. I was asked to give my name and birthday more times than I cared to count. The anesthesiologist came in and talked through what they were going to do differently to try to help mitigate the negative side effects of anesthesia. I ended up getting a scopolamine patch and also an anti-nausea medication was added to my IV from the start.
The final person to come in was Dr. Jane. She looked too awake for an early Thursday morning. She walked us through the surgery and what to expect during and afterward. Then it happened. I was wheeled back to the operating room.
I was told that I wouldn’t remember being wheeled back, but I even remember seeing the operating room. It was so much larger than the OR where I had my ankle surgery. Then I went to sleep.
I woke up alone in a dark room with a blanket wrapped around my head. apparently, they had problems warming me up after the surgery. Four blankets, my own personal heating apparatus and a blanket around my head was their solution.
I just remember being super groggy and not wanting them to turn on the lights. I also remember a massive pad in between my legs, which was really uncomfortable, but not so much that I did anything to move it.
My parents eventually came into the room and with it, I began to really wake up. I was given a small cup of cranberry juice and also a small cup of sprite to try to sip on, which I actually managed to keep down. That was a miracle in itself.
The surgery had been orthoscopic, so I just had two little incisions, one in my belly button and one right above my bikini line. They had used bright purple super glue to close the wounds. The incisions didn’t hurt, nor did my stomach. What did hurt was my right shoulder.
When they do abdominal surgery, they inflate your abdominal cavity with gases. Those gases travel up after the surgery and try to escape, but often get stuck in your shoulders. I had been told it would happen, but to be honest I hadn’t believed them.
Before I was allowed to leave, they made me walk down the hallway and use the bathroom. I was still hooked up to an IV, so my mom held the IV, while my dad held my arm and helped me walk. A nurse commented that it looked like he was walking me down the aisle. After successfully completing everything on their checklist, the nurses let me leave.
While in the hospital I never even asked what they had found. I guess deep down, I already knew the answer. Yet at the moment, I was more focused on getting home and into my own bed than finding out what was wrong with me. My mom got me a hot fudge shake on the way home because I wanted something to soothe my throat.
Having a tube shoved down your throat doesn’t feel good. Plus, I had been under for longer than they were expecting. We had been told the surgery would only last about 45 minutes, I was in there over an hour and a half. That meant my throat was incredibly sore. I was just amazed that I was actually hungry and able to keep food down. That hadn’t happened until almost four days after my previous surgery.
I slept for most of the day. My mom kept checking on me and making sure that I was staying hydrated. My drink of choice was Arctic blast Gatorade, well I guess it wasn’t by choice, but I needed the sugars and electrolytes.
Food stayed down and I was able to let my body rest, though getting comfortable was still difficult. My shoulder really was killing me and eventually, my stomach started to hurt as well. My “Endo belly” was bad.
At the Newsboys concert with a few friends
I had my surgery on a Thursday. That Saturday I went to a Newsboys concert. I had missed their concert the year before and wasn’t going to miss it again. Plus, I had bought the tickets before I knew I was having surgery. I was hopeful that it would provide a good distraction. I put on my loosest pair of pants and an oversized sweater, which is not normally the look I go for.
We picked up one of my friends on our way to the concert and she hadn’t seen me since the surgery. She spent the car ride asking my mom all sorts of Endo related questions, while I sat in silence, still not totally with it.
It came out that Endo is the number one cause of infertility and how it had made it difficult for my mom to carry a pregnancy to term. That conversation just made me look down and try not to cry.
For as long as I can remember I have wanted to be a mother. When other kids said they wanted to be an astronaut or a ballerina when they grew up, I said I wanted to be a mom. At just seventeen, I was having to come to terms with the fact that I might not be able to get pregnant. While that is not the only way to be a mother, it still was really hard to think that that option was already being taken from me.
Then my mom started talking about how much Endo they had found. According to Dr. Jane, it was “widespread,” far more than she had imagined. Lesions had covered the entire back of my uterus, both of my fallopian tubes, and both of my ovaries.
“They took biopsies to test for cancer because of how widespread it was.”
My heart stopped. Cancer. It’s a word that automatically creates fear. Could I really have cancer? My mom had endometrial cancer, which had led to a hysterectomy. Would that be me?
While my mind raced with the possibility of a cancer filled future, my body was rebelling. While the surgery had gone as well as could be expected, there was a side effect that no one had been prepared for… an allergic reaction.
It turns out that I am really allergic to the soap that they use to prep you for surgery. My entire torso was covered in itchy, raised hives that made an already uncomfortable time, miserable. Due to the fact that it was a Saturday, there was little we could do until Monday except treat with over the counter allergy meds.
On Sunday, I started getting stomach sick. I spent the day, exhausted and lying in bed. My grandparents had come down to celebrate Thanksgiving with us, which was the following week. I felt bad because I literally hugged them hello and then went back to bed. It’s impossible to know why I got so sick that day. Maybe it was an allergic reaction? Maybe it was just pain? Maybe I had caught a bug at the concert? All I knew was that it sucked.
By Monday I was on a Prednisone pack, which comes with a whole list of its own side effects, but it helped the allergic reaction to calm down. That week, my new reality started.
I had off that entire week, and I spent it doing as much research on Endo as I possibly could. I wanted to be as informed as possible when I went for my post-op visit. I knew which medications Dr. Jane would recommend and I wanted to research them. I joined support groups, looked at clinical trials for new medications, researched diets that could help. I spent hours trying to make sure that I could make informed decisions about my own health.
The post-op appointment was two weeks after the surgery. By then the bright purple glue had peeled away, leaving two little raised scars. The bloating had gone down, but it wasn’t great by any means.
Dr. Jane wanted to put me on a drug called Lupron. It causes you to go into a medically induced menopause. By doing that, you limit hormone spikes and periods, which ultimately slow down the growth of the lesions. In theory, it sounds like a good plan.
I was terrified of going on Lupron. My mom had tried Lupron for her Endo and it had caused her kidneys to shut down and heart arrhythmia. She had suffered from the side effects for months. So far, my reactions to various medications had been pretty in line with what she had experienced.
Lupron had changed since my mom had taken it. Now it was given in smaller, one-month doses instead of three-month doses. There was an add-back therapy to help with side-effects. While Dr. Jane didn’t push it, she did highly recommend that I at least give it a chance. So, I did.
In the first month, I was terrified that something was going to go wrong. It didn’t help that in the middle of the month, I got a horrible UTI that was accompanied by kidney pain. Yet, it worked. My pain didn’t disappear, but it was a lot better than it had been before my surgery. The first six months on Lupron were full of ups and downs, but I stayed on it for a little over a year. Then, due to federal regulations, I had to be taken off of it.
Just like that, I felt like I was being thrown back to square one. I had a diagnosis but no treatment and no cure. The one thing that had been giving me some relief was about to be taken away. Where did that leave me?
MRC