A real bitch.
A warning for anyone reading, this is getting into the waters of TMI.
Part two of my journey into Birth Control and women’s health: Polycystic Ovarian Syndrome.
(If you haven’t read my post about birth control, read that first, as it goes into my 10 year struggle with my period)
This is a story about fighting for your intuition, and listening to your body.
About two years ago, I started getting hair on my chin. Mind you, my family is not known for hairlessness, so I assumed this was as regular as the sparse hair on my toes and arms. Additionally I’ve had hair on my stomach since high school (again, due to comparison to other girls, I assumed this was “normal”). Fast forward to one day I’m at my parents house at christmas and I ask my mom to borrow her tweezers to pluck my chin and I make a joke. She gives me a weird look and I ask her what’s up? Turns out, she reveals, that while she has the same arm hair and toe hair, she has never had an issue with hair on her chin. I find this a bit strange but I attribute it to mother’s overactive anxiety. For the next few months she pushes me to talk to someone about the chin hair, and I make an appointment with planned parenthood to alleviate her worry.
As it would have it, as my upcoming appointment draws near, I start having cramps again. This is strange as I haven’t really had any period symptoms for about 9 months since acclamating to my IUD. I go into planned parenthood and talk to one of the doctors there. I had looked up what may cause abnormal female body hair and came across a diagnosis called, Polycystic Ovarian Syndrome. She checks the placement of my IUD, and mostly brushes off my concern about the chin hair, although she would prescribe a low dose of Spironolactone, a testosterone reducer, and she does blood work (which would come back inconclusive). She explains that PCOS is really hard to diagnose and with the IUD in place, it would be near impossible to get a proper reading. I leave feeling confused, but she seemed not to be concerned, so I try not to be either.
The Spironolactone would make my acne go absolutely nuts, and so against recommendation, I would stop taking it.
The Planned Parenthood appointment was at the beginning of 2018. My acne gets better when I don’t take the pills (so I think) and I just keep plucking as I go. Fast forward to 2019, and I’m working full time with a legitimate health plan, so I book an appointment for a dermatologist, something that has been on the back of my mind for years following my mother’s skin cancer diagnosis. As luck would have it, I would have the dermatologist appointment within weeks before one of the worst cycles of my life. I had just seen my PCP for light cramping and what looked like a yeast infection (that would mysteriously come back negative). Again my doctor checks my IUD and confirms there’s no issues in its placement, and sends me on her way. She tells me if the cramping continues, to let her know.
I walk into my dermatologist, explaining I’m just there for a skin test and explaining my mom’s history with cancer. We talk a bit and he examines my various freckles and moles. He looks at my chin and without a beat asks
“Do you have PCOS?”
For the first time, the doctor I was seeing was possibly confirming what I was considering to be my own anxiety. I give him a look and say
“No… I haven’t gotten a diagnosis but I asked my doctor about it.”
He explains that what’s currently erupting on my chin is clearly hormonal cystic acne, a common PCOS symptom. I explain that I had been put on Spironolactone, he’s happy about this and decides to increase my dose, saying regardless, this will clear the hormonal acne up. He also explains that this kind of acne can’t be treated with normal means, such as benzoyl peroxide and salicylic acid, which made sense because both of these methods never seems to work with my face. I had flat out refused to use benzoyl peroxide anymore because of the rash it would cause on my face. I left the dermatologist feeling more confused, but a bit confirmed in what’s been nagging on the back of my mind, that I might have PCOS.
In the following two weeks, I started having some of the worst cramps of my life since going on the Mirena IUD. At one point the only comfortable position was laying on my back on the floor. What else was strange was that rather than regular cramping, I could feel the pain focused mostly on my ovaries. And they felt swollen, rather than sore. I could literally feel them pulsating. It was a feeling I had only really dealt with once before, with my uterus when my IUD was placed. I could feel the difference between menstrual cramps and what was literal swelling in my abdomen. I saw my doctor about the cramps, and explained that I had been icing my ovaries pretty consistently, and that I had taken a sick day at work because of the pain. I was also experiencing hot flashes, and fatigue, and bouts of nausea making it near impossible to eat. The feeling was similar to having a toothache, and I found myself wishing I could just rip my own ovaries out. My doctor decided at that point it was time for an intrauterine ultrasound.
I would get the ultrasound, my very first by the way, and even while having them turn the camera in different parts of my insides, I would feel discomfort anytime it pressed against one of my ovaries. The results would be sent back to my doctor, and they assessed that while they saw cysts present on my ovaries, this was considered normal for menstruating women and there was nothing of concern. I groaned as I felt like I had been shot back to day one. My doctor did say if the cramps continued, that I should make an appointment with a gynecologist.
At this point my house was being flooded with letters about insurance claims and bills for the various testing that was happening every time I walked into a doctors office. The cramping would inevitably come back, so I made an appointment with a gynecologist.
The day of my appointment, I was ready for battle. It had been 6 months since my original appointment for the cramps, and I was tired of being told there was nothing wrong with me. I had talked through my thoughts with my therapist and he was supportive of me advocating for my own health. I knew there was something wrong, and I was terrified of being told I was healthy. I brought in the ultrasound and insisted when I entered that I didn’t need another pregnancy test (I was tired of paying for them and I knew I wasn’t pregnant.) My gyno was kind, and could tell I was exhausted. She listened to my story, and looked at my ultrasound. She explained what each thing on my ultrasound meant, and she looks at me and says
“You know Lauren, it’s true that most women get cysts with no problems. But what I’m noticing here is that your ovaries are in fact, enlarged. It’s not by much, but there is a sizable difference to what they should be. And along with the physical symptoms you’ve been experiencing, I would agree with your intuition in saying you have PCOS.”
I was elated. I finally had a diagnosis. My Gyno would explain that PCOS affects my endocrine system, which is why it affects not only the reproductive system, but also my acne, dandruff, fatigue, weight gain and struggles losing weight, as well as could be feeding into my diagnosis of depression and anxiety. My diagnosis was a blessing in that it gave me a reason for all the things that had been plaguing me for 10+ years. I celebrated with my therapist, feeling validated in my concerns. My Gyno asked to be my permanent Gynecologist, a yes that took no deciding. She sent me to an endocrinologist who would explain further that my acne and things like my stomach hair are confirmations of an endocrine disease like PCOS.
This is where things get a bit rough.
After the initial joy of a diagnosis ended, I was left with a lot of feelings. This would be further perpetrated by my endocrinologist. He would start asking me about my plans for children, and if I was planning to get pregnant anytime soon. I had never been asked this by a doctor so I was thrown off. I explained no, I wasn’t planning anytime soon. He was cheerful in explaining that was good, as it would take a while to ween off the IUD. He then explained that when I did plan on getting pregnant, he would have a plan ready to figure out what needed to happen, whether it would be certain insulin medications to IVF therapy. My head began to spin, Ihad never even thought about the problems of getting pregnant. My whole adult life had revolved around not getting pregnant, and now I was being confirmed that it would probably be harder for me to get pregnant. That it would require some extreme changes in lifestyle in order to even plausibly happen. That unlike the other women in my family, this was going to be harder. Most of my immediate family has had no issues with infertility, specifically my own mother. On her side of the family it’s become a bit of a joke about how easily the women in my family manage to get pregnant. Even on my dad’s side, I had an aunt joke after my IUD placement, to be careful, as my own grandmother had gotten pregnant after having an IUD placed (Granted this was back in the 70s, but regardless). Infertility has never been a concern of mine. Ever.
Beyond the psychological affect this has on me, every few months I have a cycle that puts my body through hell. PCOS is not curable, all one can do is treat the symptoms and try to reduce it’s affect on the body. The first issue I suffer from is obvious, which is the cramps. I have a habit of sticking Salonpas pain relief patches on my ovaries when I have to leave the house. It’s meant for muscle strains, but it does the trick. When I’m home I have a set up of a heating pad on my lower back, and an ice pack on my ovaries. Elevating my legs help, taking vitamins like magnesium, turmeric and cinnamon helps. Midol helps. Baths help. But at the end of the day it’s all just trying to get myself to a comfortable place so I can focus on work, sleep through the night and just function.
Among other issues, PCOS brings a lot of hormone abnormalities. The high testosterone causes cystic acne and hair, so I take Spiro which is actually a blood thinner, so I’m also dealing with low blood pressure and sleeping limbs now and then. As of late, I've had low estrogen after the week of my cycle, so I get symptoms normally attributed to Menopause. I deal with hot flashes, fatigue, and what I had thought was chronic yeast infections. It turned out to be vaginal dryness from low estrogen, which looks a lot like a yeast infection (I refer you back to the original doctor’s visit this year, where I go in for a yeast infection that comes back clean. Go figure.) I still don’t really bleed, I just get some bloody discharge every once in a while. None of my doctors are certain if that’s the IUD or the PCOS. Most of the time I know I’m about to start a cycle when I get cramps again or I get a massive zit on my chin. Other than that it’s more of a guessing game.
The moral of all of this is to trust your gut. Push your doctors to find you an answer. Keep showing up. Because what I’ve learned in all of this is that you are the only person who’s going to advocate for your own health. Additionally, I'm in the process of practicing self love and care, and giving myself a break. I’ve accepted that PCOS is a chronic illness that I am allowed to deal with. It’s not a matter of sensitivity, this is a real problem I have to deal with day to day and I’m allowed to take breaks from the world and my work when it gets too much. And at the end of the day, I’m allowed to just say this sucks, a lot. But I am thankful for the diagnosis, and finding doctors who listen to me, and are committed to helping me through this. And I’m thankful for the friends and family who understand when I say I need to go home and rest, my roommates who bring me chocolate when I’m having a bad cycle and for all the other people out there speaking out about PCOS.
If any of this resonates with you, and you too are searching for answers, talk to your doctor and please feel free to talk to me.