My Endo Battle

The summer before I started high school, I got a weekend babysitting job. It was a friend of my dad’s who had six kids, all under the age of ten. I agreed, because what thirteen year old doesn’t want money? It was a very long weekend. I remember spending most of Saturday sitting in this tiny room with six kids, watching the Wizard of Oz over and over. I remember feeling really stressed and quite sick. It was stuffy and loud and I was so tired of watching Dorthey follow the yellow brick road on her journey to OZ. Somehow, I made it through the day and earned my fifty dollars.

The next morning I woke up early to get ready to head back to the tiny room with six kids. I wondered what Dorthey would be doing today.

Shortly after waking up, it hit me. Intense all consuming pain. A pain that I had never felt before. My back, my legs, my stomach, pelvis, pretty much everything hurt. I remember going to the washroom and there it was, I got my period. I was so scared and overwhelmed and in SO MUCH PAIN. I was screaming so loudly that the neighbours were concerned. I could barely stand and think I was in and out of consciousness. I experienced an amount of pain that no one, especially a young girl should ever have to experience. My poor parents were lost. They didn’t know how to help me. My mom gave me Tylenol and then some more Tylenol and then some more. Yes, she gave me a bit more than she should have, but I think she felt so helpless. She had never seen anyone in that much pain and watching it in her own daughter must have been terrifying. Eventually my parents decided to take me to the hospital. It was a very long twenty-minute drive for me and my mom, as she watched me squirm in pain trying to hold back the screams. When we got to the hospital, I vomited in the entrance way. Maybe from the pain, maybe from the Tylenol overdose, or maybe from both. I honestly don’t remember anything after that. They must have given me some pain meds and sent me home.

Unfortunately that weekend when I became “a woman” was just the beginning of a long battle. My life forever changed that weekend. Not because I could no longer watch the Wizard of Oz and just the thought of it makes me feel sick and crampy, but because I could no longer live carefree. The next decades of my life would be filled with pain, sickness and anxiety and not just during my period, although the second day of my cycle was always the worst day of each month. I started experiencing regular nausea, digestive issues, urinary tract issues, dizziness, body aches, anxiety and fatigue. I also became terrified of “leaking” due to a sometimes very heavy flow. I started missing a lot of school, calling in sick to work and not seeing friends as much. My friends all had their periods, but none of them experienced anything like what I was dealing with, or at least they never told me if they did. I remember being at school one day and being in a lot of pain. I didn’t want anyone to know, so I went to the office, called my mom and headed back to my locker to grab my stuff, barely able to walk, but I couldn’t roll around on the floor in the middle of the high school screaming, so I somehow made it to my locker. When I got to my locker, I remember seeing my face in my locker mirror. To this day it brings tears to my eyes and gives me chills. I was as white as a ghost. I mean I am naturally pale, but this was scary. I don’t know if I have ever seen myself as pale as I was that day.

After several months of suffering my mom took me to the doctor. My aunt had suffered from Endometriosis so I think she mom suspected this. The doctor agreed and said that basically they couldn’t diagnose anything unless I underwent an investigative surgery, where if they found anything, they could remove it, but they didn’t want to do surgery. Instead, they suggested the birth control pill. I was fourteen and hadn’t even kissed a boy and they wanted me to take the birth control pill? I couldn’t agree to taking it. I am not exactly sure why. I think I felt it would some how make me older or more mature than I was and that everyone would think I was having sex. Like I said, I hadn’t even kissed a boy.

For the next four years I suffered, a lot. I also took a lot of pain medication, that didn’t help much, but you got to keep trying, right? I remember feeling really scared about what was really wrong with me, or if I would ever feel better. I wondered if I was just a “wimp” who was overreacting. I would frequently try to justify my pain, school absences or missing work by telling people that “I might have Endometriosis”.

Finally, when I was eighteen, I decided I was ready to try the pill. Yes, by now I had kissed a few boys and even had a boyfriend, who I eventually married. The first birth control pill I tried made me so sick. I vomited daily for a week and eventually gave up. I waited for another month or two and worked up the courage to try another one. This one was much better. I did experience some mild side effects that passed after the first few weeks, but these were definably manageable. After everything I had been through, mild side effects were a walk in the park. As much as I didn’t love the idea of being on the birth control pill, I loved that I was no longer in severe pain. My periods were much more regular and I missed much less school, work and social activities. I began to feel kind of “normal” for the first time in four years. I continued to take the pill for the next six years. It was amazing. I could even control when I was going to get my period, so that it wouldn’t interfere with vacations or big social events, like my wedding.

After getting married, I decided it was time to say “good-bye” to the pill that had given me six years free of severe period pain. My husband and I knew we would want children soon and I also knew that I should not be on the pill forever. After stopping the pill, I started experiencing major anxiety. I am not sure if it was just a coincidence or if it was the change in hormones, but I often wonder about this. It took a very long time to get control of this anxiety and on top of that over the next few months the pain, and all that came with it when I was a teenager started to return. Every month got a little bit worse. As my husband and I wanted a baby, the birth control pill was no longer an option. So instead, I was told, “yes you probably have Endometriosis, but we don’t want to do the surgery, so take this prescription pain killer every month starting a few days before you get your period and for the first few days of your period”. So I took 500mg of Naproxen for five days of every month for the next few months. It definitely helped with the pain, but not with the nausea, fatigue and dizziness, but I was getting by. Luckily, it didn’t take long for me to get pregnant (at this point Endo had not affected my fertility, so I guess I could be thankful for that). I had a great pregnancy and a great year postpartum of no periods and less Endo symptoms. My labour was actually much less painful than many of my periods. I actually loved being pregnant as I was med free and period free. I wished I could be pregnant forever.

Once my period returned, so did all that came with it. I remember one morning in particular when I woke up, not feeling well. My husband took our son to daycare and he went to work. I called in sick to lay in bed. Well my plan to just lay in bed was interrupted by the intense cramping. For some reason I didn’t proactively take my meds, thinking that it wouldn’t be too bad, but I was wrong. I was in so much pain I couldn’t even walk and my Naproxen was downstairs in my purse. I crawled down the stairs and all the way to the kitchen where my purse was on the table. I had to reach up and pull the purse down spilling everything all over the floor, it was like a scene from a movie, like one where someone has been shot in the leg by an intruder and they are trying to find their phone to call for help. I had the meds, but no water and the pills did not go down well. I somehow managed to grab the phone and called my husband who luckily was only 10 minutes away. He came home and helped me take my pain medication, but it wasn’t working. He watched and listen to my screams like my mom had many years before. He had to carry me up the stairs and help me get dressed so he could take me to the hospital. Luckily, on the way to the hospital the pain started to subside a bit, and I knew that waiting in the waiting room for hours to be told that “I probably have Endometriosis” was not how I wanted to spend my day. Instead I went back home where I spent the day in bed with a heating pad. I spent the next several months like I had spent many before; battling pain. Meds and heating pads. I had tried a few natural remedies, but they didn’t help much. When I got pregnant with my second baby, I got another much needed “Endo vacation” that lasted until my second son was almost a year old when my period returned.

For the next 5 years it was more pain, more fatigue, more body aches, dizziness, days in bed and days full of tears. I even had to be carried out of my place of work and taken to the hospital for severe pelvic pain. My family doctor finally referred me to a gynecologist who I shared my story with. He told me that because I was hoping to get pregnant again, birth control was not an option and he did not want to do surgery (I think I had heard that before), but yes I “probably had Endometrioses”, but to just deal as “it won’t kill you”. Yes he said that. As I write this more tears fall down my face as I remember feeling so small, ignored and less than significant. No, Endometriosis might not kill me, but it robbed me of so much and my mental and physical health had definitely been affected. I recently heard of a study that found fifty percent of women who live with Endometriosis have had suicidal thoughts. This does not surprises me, and in moments of extreme pain and frustration I have had these thoughts myself.

It wasn’t until I was referred to a fertility clinic when trying to get pregnant with my third baby, that a doctor finally decided to perform an exploratory laparoscopy to look for Endometriosis. This however didn’t happen right away and I was at this clinic for 1 year before they performed this surgery even though the doctor had said several times “you probably have Endometriosis”. We tried a few different strategies and when they didn’t work, my surgery was scheduled. As happy as I was to finally be getting this surgery and maybe some answers, I couldn’t help but feel sad, that my health and my pain was not enough. It had never mattered if I was healthy enough to live a full life or to be a good mom. All that mattered was if I could have children. No matter the reason for the surgery, I was so happy to be getting it.

The day of the surgery I was really nervous. I was scared something would go wrong, but more nervous that they wouldn’t find anything and all the “you probably have Endometriosis” statements would be wrong and all the pain I had lived through would still be unanswered. I remember being told that the surgery would likely be quick and I would likely be able to return to work in three days. When I woke up the doctor came into the room and he said some of the most memorable, validating and empowering words I have ever heard, “we found extensive Endometriosis”. Yep I am crying again as I write this. Just like that all of the pain, fear, and suffering I had experienced over the last twenty years of my life finally made sense. I would never again hear “you probably have Endometriosis”. All of a sudden, I felt heard, validated and whole. Now because the Endometriosis was so extensive, it was not a quick surgery and it took months for me to recover, but I recovered and healed in many ways. It was only a few months after this surgery that I got pregnant with my last baby and again, had a really nice long vacation free of any major Endometriosis symptoms, although I believe the surgery left quite a bit of scar tissue, that is a whole other battle, but I may save that for another day.

After my third baby was born and just over two years of being period free, my period return, yet again. Symptoms slowly started to make their way back into my life; painful urination, nausea and digestive issues, heavy and long periods, pelvic pain and others. I was able to manage these discomforts and inconveniences for a while using heating pads and occasional pain relievers. However, over time the symptoms became much more persistent and intense. I even got to experience the American medical system when during a trip to Florida I woke up to intense pelvic pain that prevented me from standing up straight and really barely stand at all. We spent the day at medical appointments instead of Disney like we had planned. When we returned home my doctor once again referred me to a gynecologist.

After waiting ten months for my appointment, I finally got to sit down with a “specialist” and tell my story, hopeful that a good treatment plan would be put into place. Unfortunately, this did not happen. After a ten month wait and then sitting in a crowed waiting room for well over an hour past my appointment time, this so called “specialist” asked me a list of questions, ticking off box after box to see if I “qualified” for another Endometriosis diagnosis. After “passing the test” the doctor told me I would likely need many more surgeries, but he wanted to hold off the surgeries by advising me to take a hormonal treatment that I was, 1) not comfortable taking, 2) given very little direction or information about what I would be putting in my body and 3) advised from the pharmacist not to take due to medical history. Needless to say, I did not take this medication, but waited the four months to go back for my follow up appointment to tell the gynecologist of my decision. Honestly, I was terrified of his response, like somehow his opinion was more important than mine. Turns out I didn’t have to face this doctor, as again after waiting over an hour past my appointment, I decided to leave the office. I already knew this doctor was not right for me.

I went home and contacted my family doctor asking him to refer me to another gynecologist. I had heard some great things about this one, so I was hopeful. After a wait of almost one and a half years, I was introduced to this new gynecologist, the one who was going to listen and really hear me. The one who was going to explain all my options and help me decide on the best course of action (fingers crossed). Turns out this gynecologist had great bedside manner, we chatted about a few different things. He was easy to talk to. He also thoroughly explained what he believed was contributing to my symptoms and laid out a bunch of treatment options. This appointment was going great, until it wasn’t. After giving me all of the options he told me the only thing he would do for me was to insert an IUD. He wouldn’t try any other treatment until I tried what he wanted me to try. The term IUD makes me feel sick to my stomach. I don’t really know why, but it always has. I told him that I knew in my heart that an IUD was not right for me, but he didn’t care. I even went home, did some research, spoke with other women and tried really hard, despite hearing mostly negative things about IUDs, to love the idea. I just couldn’t.

I went back to this “specialist” a few months later. I explained that I was not comfortable with an IUD and was now also worried about some of the side effects; bleeding, anxiety, weight gain etc. He kind of laughed at my concerns explaining he could never understand why so many women would rather have surgery than an IUD. Well, he is not a woman, nor does he suffer from Endometriosis or deal with periods, so no he will never understand. He explained that surgery may only give me five years of relief. Only five years? What I would give to have five years of an Endo free life or at least relief. He clearly had no idea at all about Endometriosis and how horrible it can really be. And for many women, surgery if done right can bring much longer relief than “only five years”.

To my concerns around weight gain he told me I could stand to gain a little weight. Umm WHAT? Who the hell is he to say that to anyone? And of course, he had no idea that I survived an eating disorder and although I have worked really hard on feeling comfortable in my body and I have come a long way, I am not sure if gaining ten pounds or maybe more could set me back. Maybe, but he didn’t care about that. He also had no idea that I spent most of my twenties battling pretty severe anxiety and still have some anxious days, but again, I don’t think my experiences, fears or opinions mattered to him. Despite being extremely uncomfortable about the idea of using an IUD, he continued to insist that I at least “give it a try”. When I told him, that I just couldn’t allow this device in my body, he told me he would not consider any other options until I allowed him to stick this device into my uterus via my vagina. He told me that was all he could do for me and to come back if I changed my mind. This was one of the most disempowering moments of my life. This man pushing his own agenda, not hearing my concerns and essentially holding my body hostage. He will help me, only when I submit to his demands.

I left this appointment distraught and so defeated. It has been about 8 months since this appointment and I still feel physically sick when I think about it. Why wasn’t I heard? Why do doctors feel they have the right to make decisions about a woman’s body? Their job is to educate and provide recommendations, empowering us do what we believe is the best option for our bodies. They have no right to disempower us, making us feel weak and insignificant, while minimizing our struggles. I feel so sad and angry that this type of thing is happening to women every single day. I have spoken to several women who have had similar experiences and it breaks my heart. So many of us have been traumatized or disempowered by our medical system and this points to a system in need of some major transformations. Women deserve to be heard. Women deserve to have a say in their medical care. Women deserve to be respected, validated and empowered. Women should never leave a medical appointment feeling violated, defeated, or disempowered and no one, not even a medical doctor should be making decisions about our bodies or medical care. We are more than capable of making these decisions ourselves.

It has been over three years now that I have been trying to get treatment for my relapsing Endometriosis. I am back on a waiting list to see a gynecologist. As I continue to wait, I continue to suffer, but also continue to hope that maybe, just maybe, third time is a charm and this gynecologist, will hear me and give me back some of the power that was striped away from me not so long ago.

Jennie Szwedo is a Prenatal and Postpartum Pilates Trainer, as well as a Core and Pelvic Health Training Specialist. Hearing stories highlighting the lack of care when it comes to Women’s health as well as her own personal experiences and observations are what guided Jennie towards a career in Women’s Health. She is extremely passionate about helping women feel strong, healthy and empowered

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