Polycystic Ovary Syndrome (PCOS)

Hi, there fellow humans, I’m Maison. My pronouns are she/her, I am a 26-year-old cisgender (identifying as the sex I was assigned at birth) woman and I have been living with multiple health conditions my entire life including but not limited to: severe widespread chronic pain, disk herniation, and lower back arthritis (as well as in some other places), PCOS, lymphatic issues, chronic wounds, and most importantly, it seems, a rare and still undiagnosed genetic overgrowth syndrome that affects my right leg and foot since birth. My overgrowth syndrome has also caused some overflow of my adipose tissue that composes my leg into my pelvis. On June 24, 2022, as most of us with uteruses know, the United States Supreme Court abolished federal protections for abortions that were previously protected under Roe v. Wade which came into effect almost 50 years ago on January 22, 1973. Since (formerly) being in place, not only cisgender women, and people of other gender identities with uteruses, have had the federal right and protection to get an abortion dependent on state laws for certain gestational periods of pregnancy. However, since it has now been overturned, abortion laws are up to each individual state. Prior to Roe v. Wade being recently dismantled, many states had “trigger” laws, which, according to Wikipedia’s definition, is a “nickname for a law that is unenforceable but may achieve enforceability if a key change in circumstances occurs.” Ever since I was a little girl, I have dreamed of becoming a mother, and hopefully having the ability someday to carry at least one of my own children someday if my health issues allow me. I felt comfortable until recently, to know that if goodness forbid, I would need to terminate my pregnancy for any reason (not that I would want to unless absolutely necessary), including for my health and well-being, my rights to that abortion were protected and basically guaranteed in my state of Pennsylvania. At the moment, abortion rights are still protected under Pennsylvania law, but our future as Pennsylvanians is hazy as we are expecting a new governor come election time, and each candidate has very different opinions on abortion. If we consider just Democratic and Republican candidates, our democratic candidate, Josh Shapiro, is pro-abortion rights, and our republican candidate, Doug Mastriano, has proven his views to be highly against upholding abortion rights for Pennsylvanians. Speaking more about my personal health, I had always thought for a long time that I would be able to not be considered a high-risk pregnancy, albeit I was diagnosed with PCOS, (a condition which causes cysts on the ovaries as well as hormonal issues and oftentimes infertility in those who have it), at age 14. I had experienced heavy and extremely painful menstruation since starting to menstruate around age 10. I remember being at a gynecologist appointment with my mother, maybe around the age of 16, and having a more in-depth discussion with my former OBGYN and my mother (who I am so incredibly close with to this day as she is not only my mother, but my best friend and full-time caretaker) asking if I would be able to have children someday and my doctor had replied that it was more than likely. However, as time passed and my other health issues (like my overgrowth syndrome that affects my leg continuing to grow as overgrowth syndromes typically do, etc.) continued to make themselves more well known, I started to gain an immense amount of doubt about my possibility of becoming a biological mother carrying my own child. Flash forward to now as a 26-year-old woman. I would have no problem when the time is right to have children with options such as surrogacy or adoption, but I still cling to the hope of being able to at least try and carry my own child. Those hopes were somewhat crushed when I heard that our Supreme Court had abolished federal protections for abortion by dismantling Roe v. Wade. The day that it happened, I had a major news network channel on television broadcasting a talk show, and it suddenly went to a breaking news segment: Roe v. Wade no longer existed in 2022 America. I grabbed my phone (as my boyfriend lives in England and I wanted to show him what was going on) to record the television while half-screaming expletives in disbelief. At that moment I knew things were going to change across the nation and not for the better for people with uteruses. Since the ruling happened, I’ve really begun to ponder my future, which has been accompanied by some tears that weren’t all based on the chronic pain I feel. I asked myself a lot of questions, played out scenarios in my head, and the list goes on. In truth, I cannot deny that this whole ordeal scares me for many reasons. It scares me for the countless people this decision will affect, especially minority communities (as minorities of different types are statistically and historically most likely to be affected) like people of color, those with disabilities and health issues, LGBTQ+ individuals. I identify as pansexual and queer (although in a “heterosexual presenting” relationship) and am disabled. As stated previously, ideally I would like to carry at least one of my own children. Whatever happens after that is left to some semblance of fate. But what happens if I get pregnant someday? If I do, goodness forbids I need to terminate my pregnancy for some reason and my state changes its course on abortion rights protocols. This is why voting is integral as well as protesting and speaking our minds to fight for our rights. We as Americans need to make sure to do our research before it is time to vote for new persons in office and make sure they will fight for our right to abortion and other basic human rights, we need to show our governing body that we will have voices heard. I am very much for the sentiment of “my body, my choice” as I couldn’t even imagine telling someone else what to do with their body and their health because of my personal views. People like me, and anyone really, should not be denied the choice when it comes to abortion, because abortion is truly not an easy choice to make regardless of the reasoning. I should be allowed to try and carry my own child, and if I need to terminate that pregnancy for my health and well-being, it should be thus. My fingers are crossed for the best, and you can be assured that I will be voting come November. On a final note, I would like to add this: people in America with uteruses, and those without who stand for abortion rights…I see you, and I stand with you. Together there isn’t anything we can’t do. We will prevail.

Christmas time, for me, is as enjoyable as having a Pap smear, scraping and all. When I woke up a couple of days before Christmas of 2021, I wasn’t expecting to become the world’s most exhausted, grumpiest, real-life vampire. Yet when I opened my eyes they immediately burned in my dimly-lit bedroom. The tears didn’t just stream, they were escaping my eyes for better pastures. This wasn’t normal. Christmas isn’t a great time for me. I’d rather be home alone, or getting a Pap smear — scraping and all — than go anywhere, talk to anyone, or do anything. And as the monkey paw curled, it looked like I was getting my wish. I didn’t know what was happening but I knew any kind of light — especially blue light from the screen and natural daylight — made me immediately shut my eyes. It felt like my eyeballs were being gripped by an unseen force. I took to using my dad’s professional fishing goggles, which gave me relief but because of my notorious fat head, I couldn’t wear them for too long. So I became a vampire in the most boring way possible. I couldn’t go out, I could barely look at a screen, and I quickly became depressed. I don’t think I need to emphasize how boring and hopeless you would feel if you couldn’t stand daylight and couldn’t look at a screen. Being stuck with your thoughts day in, day out, with no entertainment and nothing to make you productive. It was a sudden hell I had found myself in. After six months, an optometrist, an ophthalmologist, and a gynecologist, however, I had found an answer and a potential remedy for my vampirism. Six months before this incident, I had started taking birth control pills. I was on the pill for almost 10 years as a teen, then a year as a 20-something before quitting because I was working overseas, and getting a prescription was a whole waste of time. During the last few years of taking it, I would get my period each month, with a free migraine without fail. It was the world’s worst “buy one, get one free.” This time though, and in the past 10 years, I hadn’t had a period migraine, so I didn’t believe that was the issue. While I had recently found out that studies had shown a migraine with aura and taking the pill increased a person’s risk for stroke, I didn’t think it applied to me. However, I was still very concerned. The only new medications I had started were metformin for my newly-diagnosed PCOS, and the pill, again for the PCOS and endometriosis-related issues. There seemed to be no data out there for metformin impacting the head or eyes in this way, and while I saw some articles saying vision or “dry eye” could be a symptom of the pill, again my symptoms didn’t seem so nonchalant or mild as the articles I found seemed to explain it to be. I finally was able to get to an optometrist, who didn’t find anything wrong with my eyes except inflammation of my tear ducts. In fact, my eye health was great, but luckily she referred me to an ophthalmologist that I wanted to see. The ophthalmologist in turn did tests and found an inflammation issue (something I’m very familiar with) but still wasn’t completely sure of the cause. With some homework and anti-inflammatory drops, I went home and started heat and massage exercises with a cautious optimism. While my eyes were getting better in some ways, I wasn’t back to my normal. After constantly annoying my gynecologist for an appointment with as much desperation as a sore, tired vampire could, she finally had a free appointment available. I told her everything and my own suspicions that it could be hormonal or nerve-related and we reviewed all the medications I was taking, including ones she didn’t prescribe. It was with this look over we talked more about the culprit possibly being the pill I was taking, which was a mix of the hormones estrogen and progesterone. These pills — the same type I took as a young person — were my little enemy all along, and after just three days of being on a progesterone-only mini-pill, I was able to open my blinds a bit more. Yesterday I had my last appointment with the ophthalmologist, and aside from the unrelated eye duct issue, she was elated to give my eyes the all-clear. I’ve now been taking the mini-pill for almost a month, and today I was able to go to my vocation training orientation. My eyes aren’t 100% just yet and I still rely on blue-light blocking glasses when I’ve been around bright light for too long, but they are almost back to what they were like before all this started. While there were bits of “maybe, maybe not” information out there, it was something I figured out with the open-mindedness and help of the medical professionals. I carried a list of my symptoms and the dosage of every medication I took, including how much I take and when I started taking it to every appointment I had, even if there might not be any link, and I think it took a lot of the guess-work out of it. I hope this is something more people can be aware of. I hope that what I’ve said can help someone. Suddenly losing your ability to see is jarring and terrifying, and the pain compounds that fear. Being able to talk about it helps greatly, and having supportive professionals improves your life even more.