An interview with Stefani on living with PCOS
One in ten women in have PCOS (Polycystic ovary syndrome)––an imbalance of reproductive hormones that can result in the formation of cysts on the ovaries. Despite the commonness, a lot of people feel unsupported, dismissed, and desperate for relief. We sat down with Stefani, a woman living with PCOS, to understand what her life has been like coping with PCOS on her own terms.
When did you start noticing that something was off with your hormones?
From the time I got my first period, it was way heavier than I could have ever anticipated. As a 12 year old it was overwhelming. That also, unfortunately, runs in my family on my mom's side; it's pretty typical for women to have endometriosis, PCOS, or polyps.
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I was around 14 or 15 when it started to get really shitty. I went to the doctor thinking it was digestive issues. Around then, I had to do a transvaginal ultrasound to figure out why I was in so much pain. At that point they found some smaller cysts, and it was like “this could be a one time thing or they could keep happening” and that was basically what I was left with as a kid.
I started birth control for my acne when I was 15 and went on it for a year. At this point I honestly can’t remember if it had any effect on my cramps, my flow was still very heavy. I stopped taking the birth control because it made me wildly depressed, which no one told me could happen. I also was constantly bloated and swollen.
Around then my cramps started getting way worse and it was something that I just dealt with, going through 4-6 super plus tampons in a day.
From the first time I got my first period, it was way heavier than I could have ever anticipated. As a 12 year old it was overwhelming.
When did you find out your symptoms were probably PCOS?
It was 2011 and I was working at a small restaurant. I had to call my coworker in to cover my shift because I genuinely thought I was having an ectopic pregnancy because I was in so much pain. I told him “you have to come in I’m going to die I need to go to the emergency room.” I ended up going to a walk-in clinic nearby and luckily had an Eastern European female doctor, which was such a blessing because PCOS and these symptoms are very common in Eastern Europe.
I talked to her and told her what I was feeling. She had me take a pregnancy test, which I asked her to do twice because I wanted to be really sure.
She started asking me about symptoms, do you have body hair, do you experience painful period symptoms, do you have a heavy flow, and I was like “yes, yes, and yes, all of the above.” She was the first person to give me a diagnosis, which to this day I haven’t been officially diagnosed because doctors, for whatever reason, are reluctant to give you PCOS diagnosis.
She started asking me about symptoms, do you have body hair, do you experience painful period symptoms, do you have a heavy flow, and I was like “yes, yes, and yes, all of the above.”
I had a few other ultrasounds and they found that I had cysts almost all the time but all I’ve ever been told by doctors is “oh that just kind of sucks and it's something you’ll have to deal with.”
I would say the diagnosis for me was really at the walk-in clinic. That’s the closest to a diagnosis I’ve gotten. Finally I had something that I at least could do my own research: who else experiences this, how do they deal with it, etc.
I feel like the root words of the condition, poly - cystic - ovary - syndrome, all that means is that you’ve had more than one cyst on your ovaries and that has happened more than once. That doesn’t seem that difficult to diagnose when it’s been twelve years of that.
The root words of the condition, poly - cystic - ovary - syndrome, all that means is that you’ve had more than one cyst on your ovaries and that has happened more than once. That doesn’t seem that difficult to diagnose when it’s been twelve years of that.
What has your experience been like with medical providers?
I would say aside from that one walk in clinic, every experience I’ve had has been almost useless. You can’t really talk to regular doctors about it, you have to really do your own research to find someone that specializes or is at least open to believing the symptoms that women experience.
Several years after the first time I went to see a doctor, she just put me on a birth control prescription, which I only took for 4 or 5 months because I remembered why I hated it when I was taking it for my acne. It definitely didn't help so it seemed pointless to put myself out of whack for no reason.
In terms of other doctors, they try to focus on bandaid solutions instead of the root cause. It will be a lot of “oh well birth control might help with the cramps, and whatever topical thing might help with your acne, and laser hair removal can help with the hair.” And I was like that’s a great way for me to spend thousands and thousands of dollars.
I feel like there should be something to address the root cause. Especially at this age, I feel like the “easiest” would be to have everything taken out, but until a certain age people tell me “oh you’re not old enough to decide if you don’t want kids, you don’t know what might happen.” Honestly, I don’t know if I can even have kids because of this condition, so all they’re telling me is my pain or avoiding pain is less important than me living up to your standards.
Honestly, I don’t know if I can even have kids because of this condition, so all they’re telling me is my pain or avoiding pain is less important than me living up to your standards.
What I’ve found in my own experience, and from friends that have PCOS, is the best advice you’re going to get is from naturopaths and holistic doctors. I have a friend in Toronto that just started seeing a naturopath, instead of all of the bandaid solutions, she has her on a meal plan and goes through it with her.
What do you wish people knew about PCOS?
There are so many things to the condition that people don’t realize. Cysts on my ovaries suck, but the hormonal imbalances are arguably for me the worst part. There’s a gland in your brain, that for people that function normally, tells you when you’ve eaten enough food, but mine doesn’t work so I’m always starving. I can eat 5 burritos and still think, what’s next; and it’s not because I’m still hungry, it’s the chemical and hormonal imbalance.
Cysts on my ovaries suck, but the hormonal imbalances are arguably for me the worst part.
I’ve found a community of other women that deal with PCOS, and they really pay attention to how your diet triggers certain things. I’m not at the point where I can figure out what helps and what hurts when it comes to pain, but I know that if I eat a slice of pepperoni pizza, I’m essentially gonna grow a beard of zits. There are different ways that you can approach it and a huge part of managing PCOS is understanding your diet and activity levels too.
A lot of us experience adrenal fatigue. So essentially it has to deal with your blood sugar levels and how much activity you’re doing. Yes, it’s good to work out, but if you work out too much then you get too hungry, and then you eat more which can lead to gaining weight, which is really bad for PCOS because extra weight on your abdomen can make it worse. You have to follow this really strict exercise plan of, walk around at a moderate level for thirty minutes instead of going for a run, manage stress because that makes it worse. How do I do that? It’s a total lifestyle change. How the world is doesn’t really accommodate it.
Yes, it’s good to work out, but if you work out too much then you get too hungry and then you eat more which can lead to gaining weight, which is really bad for PCOS because extra weight on your abdomen can make it worse.
I’ve been fortunate that because it’s gotten so much worse, I can work from home when I’m having a really bad day. For the most part when I was working in the service industry, it was like chug a bottle of Advil and hope you can get through the day.
One of the other things that sucks is how irregular your cycle can be. I’ve had many phantom pregnancies. I had one year where I didn’t get my period for 8 months. I wasn’t on birth control or anything. I took pregnancy tests ever couple of weeks and nothing was happening. On the one hand I’m pretty sure I can’t get pregnant because of this condition but on the other hand i’m like how could this happen what did I do.
Have you found employers to be understanding when you need to call out sick?
Ummm…. No is the easy answer. At my current company I’ve made a point of making it a really normalized thing in the office. I bring it up regularly, and the guys will start to get uncomfortable, but if you want to know why I’m bent over in my chair groaning, I’m not going to lie to you and say I ate bad food. When it’s something that’s recurring, I can’t say it was something I ate because then it’s like “well stop ordering bad Chinese food.” You need to realize this is something that I deal with. I’ve been starting my period on the weekends, my body is just really intuitive somehow, so I can chill at home on a Sunday. If it happens at the office, there needs to be an understanding that this is going to keep happening at least once a month.
...if you want to know why I’m bent over in my chair groaning, I’m not going to lie to you and say I ate bad food.
I would say for the most part, even female employers, it’s rare that someone is understanding. It’s arguably more difficult with women that have a normal/ easier menstrual experiences than it is with men that just don’t understand at all. Even my own cramps now compared to five years ago, I would have said “oh you’re just being dramatic.”
Have you found any resources that have been particularly helpful?
I ended up finding a community of women on instagram, through a model who has PCOS. She posted something in a story about how she was having a rough day, and she started this support group. I’m not trying to conceive, so there are certain things that don’t cross my mind. Now I’m in a group of women and some have just lost their fourth baby or are going through hormonal treatments to become fertile.
I go on reddit. There aren’t really any medical resources because if I go on Mayo clinic it will say “oh use a hot water bottle and take some pain killers.” Talking with women that are actually dealing with it and natural health I’ve found to be the most helpful. There are a lot of studies that have been done in Turkey about natural remedies and one of the things studies recommend is drinking spearmint tea specifically. The study found that women who took it regularly twice a day, within 3 weeks to a month found a significant decrease in excessive hair growth. It also helps regulate hormones and the gland that tells you when you’re hungry.
When you look at a recommended diet for PCOS it’s basically don’t eat anything that brings you joy. Then you’re left with this decision, would I rather feel kind of shitty sometimes and feel good because I’m not depriving myself of some things, or do I stop and only eat things like leaves and see if that balances out my hormones. Then I'm left with questions like: Can I travel? How do I explain this diet to someone who doesn’t speak the same language as me? How much worse can I make it for myself?
When you look at a recommended diet for PCOS it’s basically don’t eat anything that brings you joy. Then you’re left with this decision, would I rather feel kind of shitty sometimes and feel good because I’m not depriving myself of some things, or do I stop and only eat things like leaves and see if that balances out my hormones.
What do you do to help with the Physical pain?
I will say that I recently discovered CBD as pain relief and it’s been a miracle. I recently had my period and woke up at 6am on a Sunday. I started googling what can I do to end this miserable pain and found a company that makes a CBD suppository. It’s this radiating pain that feels like intense nerve damage that messes with my legs, my back, my feet. I have to lay there and rub CBD balm all over my body.
I will say that I recently discovered CBD as pain relief and it’s been a miracle.
When i take CBD orally, it relaxes me mentally, but for pain relief, for me personally, it needs to be more localized. The higher the concentration, the better the effect is going to be. I’ve tried both 25 mg / 4 oz and 250mg / 4oz. The 250mg is amazing, within 15 minutes I can stand up and do yoga and go out and walk my dog and its astounding how much of a difference it’s made for me.
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I’ve learned a lot with timing out CBD products. A pill is gonna last longer but it will take a while to kick in. The drops will kick in in like 15-20 minutes but only last for 4-6 hours, the pen will kick in immediately but won’t last. You have to do the time release calculations on your own.
The 250mg is amazing, within 15 minutes I can stand up and do yoga and go out and walk my dog and its astounding how much of a difference it’s made for me.
I really love magnesium. When it comes to menstrual cramps, mine are really bad, so it helps a little bit but not as exponentially as the CBD. What I find magnesium really helpful for is my bowels; they get kind of messed up around my period because of the inflammation and tense muscles. It also helps me sleep and keeps me regular if that’s the issue. It’s either nothing comes out or everything comes out. Magnesium can help a lot over time as long as you take it regularly.
What is your medical care like now?
I just saw a new doctor and that will be the last time I see him. When we were doing my initial interview, I told him “I’m pretty sure I have PCOS, it’s never been formally diagnosed.” He cut me off and was like “yeah it’s pretty hard you’ll never get that diagnosed and it doesn’t matter anyways. It’s not like we can do anything unless you want to have kids.”
Whats the thing about PCOS that scares you most?
The debilitating pain. For a long time it was a lot of the superficial stuff, that I break out or have a lot of body hair. I’ve paid for laser hair removal and it was not permanent. I find that as I get older and have more life experience that i’m more comfortable with myself physically. I can deal with those things and I’m moving past it. This is the first year that I am comfortable wearing crop tops and that’s great and I feel good about it. It would be really cool if there weren’t two days of every month that I can’t walk.
I find that as I get older and have more life experience that i’m more comfortable with myself physically. I can deal with those things and I’m moving past it ... It would be really cool if there weren’t two days of every month that I can’t walk.
Want to know more about the resources Stefani mentioned in this interview? Ask us at firstname.lastname@example.org. Click here to learn more about PCOS and it's symptoms.