What Kind of Woman Am I?
In some ways, my experience with getting my first period prepared me for being “different” from others for the rest of my life. I was the last of all my friends to get it at 14, when everyone else I knew had gotten theirs at 12 or 13. I was convinced there was something wrong with me and I was never going to get it, my fears probably fueled by the Lifetime movie I had watched where a girl was born without a uterus and was unable to have children and they found out because she never started her period.
Looking back, if I had known what was waiting for me, I never would have been so desperate to have my period start. I’ll never forget the day it finally happened though, since it was pretty traumatic for shy 14-year-old me. I was in 9th grade, and at school when it happened. My friends only had tampons with them and I had no idea how to use those and was not going to ask one of them to show me. I was too embarrassed to go to the school nurse to ask for anything. To make matters worse, my mom was out of town and the person that was keeping an eye on us while she was gone was her male boss in his 50’s, staying in his camper in our yard. I was definitely not going to call him! So I made do with wadded up toilet paper in my underwear until I got home.
My mom had had a hysterectomy several years before, so she didn’t have any supplies readily available. I called her when I got home from school, crying and explaining what had happened. Luckily, she still had a few supplies hidden away in her bathroom cabinet and she tried to explain to me over the phone how to use the bulky pad and put it in my underwear. When she got home a day or two later, she took me to the store to buy some pads of my own. My periods were irregular, so I was put on birth control pretty quickly to try to regulate my cycle. I would be on and off birth control for the next two decades.
Tampons would continue to be a mystery to me. I remember one time really wanting to go to an event where it was just not going to be practical to wear a pad, but really struggling to put a tampon in. My mom handed me a small mirror, sent me into the bathroom with a tampon, and said figure it out. I made it work for that day, but tampons were never comfortable for me. They hurt going in and coming out, I could feel them in the whole time, and sometimes it took two and three attempts before I got one situated semi-comfortably. With all this, I pretty much avoided using them unless absolutely necessary and had one brand I could use.
After a lifetime of odd health issues and being called a medical mystery by more than one medical professional, at 25, I was diagnosed with a chronic illness/disabling condition, Ehlers Danlos Syndrome, hypermobile type (hEDS). This condition is genetic and autosomal dominant, so I had a 50/50 chance of passing the condition on to any children I might have. I was advised by the geneticist, for my health and safety and that of my potential children, not to have children. Pregnancy and EDS do not tend to go well together and can be high-risk with many complications. Hearing these words from the geneticist was devastating. I had wanted to be a mom pretty much my entire life and now that was gone. Yes, I know there are other ways to become a mom outside of physically carrying a child myself, but that was not where my mind was at that time. I had already lost my beloved career to EDS and knew this.
Fast forward 5 years and I’m about to turn 30. I had been having some issues with hormones and feeling off and having menopause-like symptoms, so my primary care doctor sent to me an actual OBGYN for the first time in my life. I learned several things during that visit. First, I learned that I had a tilted uterus and cervix, which explained why tampons were difficult for me and the OBGYN showed me how to put them in at an angle to make it easier and less painful to use them. Second, I had my first internal ultrasound and learned that I had several small ovarian cysts and needed to go on birth control again to try to get rid of them. Third, given my family history of breast cancer, I shouldn’t be on oral contraceptives and was put on Nuvaring instead.
At my follow up appointment a few months later, I learned that the ovarian cysts were gone, so that was good news. This appointment would be my first time asking a doctor about a hysterectomy but not my last. See, my mom had had a hysterectomy at 38 due to precancerous cells found in the uterus and her sister, my aunt, had had a hysterectomy at 42 due to Stage 1 uterine cancer. As I was rapidly approaching 30, this was weighing on my mind. I also knew I wasn’t going to be having children, so in my mind, it made sense to just take everything out since I wasn’t going to be using it anyway and those parts were causing problems. But when asked if I could have a hysterectomy, I was told no. Despite the fact that I was single and had no plans of having children, I was told that I might change my mind about children and what if I got married and my husband wanted children? I was too young for anyone to consider a hysterectomy. This was disappointing news, but not really surprising.
Fast forward another two or three years and I’m co-teaching a diversity class during my doctoral program, and we had a guest speaker on LGBTQIA+ identities. The speaker was speaking about asexuality and what it means, and a lightbulb went off in my head. Oh my goodness, that was me! Suddenly, so many things about myself made sense. Fast forward another three years and I tried to talk to my new nurse practitioner about the idea of a hysterectomy. I had even more reason now with the added benefit of understanding my sexuality. I don’t want to have sex, I’m not getting married, there will be no children, I’m almost 36 years old. But I was now living in the deep South and the only two doctors performing hysterectomies in my town were men, and the nurse practitioner said there was no way either of them would do that surgery on someone my age. At this point, I was definitely frustrated and feeling powerless over something that should have been my decision, not something that was being decided by a male doctor who hadn’t even met me but was making judgements about the fact that I *should* want to have children and I *should* want to get married and bare my husband’s children for him like a good little Southern woman. Ugh.
After another year and half passed, I was done. Done with medical professionals making snap decisions and judgements on my life and for my body. Done with dealing with Southern societal expectations for me and how to live my life. I did my research and found a doctor who I thought would be a good option for me in a slightly more progressive city two hours away. When I called to make the appointment, her first available appointment was 5 months away. Fine, I had waited this long, I could wait a little longer. While I am pretty good at advocating for myself in medical appointments, I asked my friend to come with me as back up. I had all my arguments prepared as to why I wanted the hysterectomy. I am asexual, not interested in having sex, not getting married, not going to have children.
I am 37 and my mom was 38 when she had pre-cancerous cells found and had a hysterectomy, I don’t want to live in fear and dread of that happening to me. My monthly cycle and hormone fluctuations were wreaking havoc on my life and making my many health conditions even worse.
I was prepared to stand up for myself with the doctor and argue if need be to get what I wanted. None of that ended up being necessary, the doctor agreed pretty quickly to what I was asking for. I was a little bit shocked actually. I didn’t even need any of my arguments or my friend as back up. After getting some bloodwork and test results back, my surgery was scheduled for March 2023.
The surgery went well, but I was surprised when the surgeon came to talk to me the next day and told me that she had found endometriosis when she got in there. She asked if anyone had ever brought that up to me and I said no. She looked at me with surprise, but then shook her head. The hysterectomy was the right decision for many reasons, that surprising discovery being one of them. It’s been four months since the surgery and I’m so happy I was finally able to get this done.
While I still have many chronic illnesses and always will, my life is a tiny bit better without having to deal with my period and cramps and back pain and all the other issues that came every month.
Note from the editor: July is Disability Pride month and our team at The Rag put out a call for submissions that touched on the intersection of disabilities and menstrual health. Julie’s piece covers a range of menstrual health needs and experiences and explores the complicated relationships between menstruation and EDS . This story highlights how menstrual health rights are disabilities rights, both of which are a matter of human rights. In showing how EDS was present across the spectrum of menstrual health needs (bolded parts of the story!), it’s evident that menstrual equity is more than just product provision. In the fight for menstrual equity, we must strive not only for access to products of preference but also for comprehensive, quality, affordable care for people with disabilities/disabled people and beyond — across the spectrum of reproductive and menstrual care needs. During disability pride month, reflect on the ways in which the fight for menstrual health rights can center the experiences of people with disabilities/disabled people. Then, it’s truly a fight for equity.
