My Journey with PCOS (Polycystic Ovarian Syndrome)


Rosemary Komolafe
600-level Medicine & Surgery
University of Ilorin

Olorunyomi Fola-Oyetayo
400-level Medicine & Surgery
University of Ibadan

J: My name is Jane Doe. I am 23 years old.

Y: *smiles* Nice to meet you, Jane. I’m Olorunyomi, but you can call me Yomi. Could you tell me about yourself?
J: I am a medical student… Please, can you give me an outline? So I don’t spread.

Y: Anything you say is fine actually, so feel free to spread. Or overlap.
J: Oh, okay. Alright then. I am the second child of five children — two girls and three boys. I was really close to my dad, grandpa and elder brother while growing up. I grew up knowing I felt different from the regular females around me, and I had questions for a lot of norms. I tried to find names and terms till I finally accepted being called a feminist. I am passionate about menstrual hygiene, I hate seeing oppression and I love being of service to people. 

Y: I have three brothers too so I can definitely relate. Do you think that you feeling diferent from those of the same sex as you had something to do with your upbringing or being surrounded by so many male figures?
J: I think it was both. It had a lot to do with my upbringing and then the fact that I had a lot of males around me. Because I saw how they did things and it differed from how my mum told me to do things. Initially, I hated being female. I wanted to be a guy because, being a child, I felt they had fewer restrictions; I think I was seven then. Eventually, the teenage years came, I had girly friends and then, there was some sort of peer pressure — dressing like a girl, handbag to church, a little lip gloss and mascara here and there, and all of those things.

Y: When did you find out that you had PCOS?
J: I knew something was wrong before my first menses came, but I didn’t quite know what it was. I started menstruating in the third term of SS1; I think I was 14 going on 15. A lot of friends had already started, and I didn’t know what to say or how to feel when they were talking about menstruation. At the time, I felt shy about it (if only I knew). When it finally started, it was very irregular and I couldn’t tell when it was coming. I was too shy to speak to my mum about it; I read somewhere that it happens to some people, and so, I thought that maybe I was one of the outliers. I hated my periods and was happy I didn’t have to bear that inconvenience every month. It was so uncomfortable checking my skirts to be sure I wasn’t stained. With the discomfort and all of that, I didn’t really bother about the irregularities.

Y: I feel the exact same way most times. I’m 20, and I still have very irregular periods. I know I should be bothered, but I can’t help but enjoy those months without discomfort. So, what prompted you to go to the doctor and when was that?
J: It wasn’t until my first year in the university. My periods didn’t show up for over four months (I wasn’t keeping a calendar, so I’m not sure; I just use pads whenever it comes). I was scared because I knew I wasn’t sexually active and I didn’t have a UTI (urinary tract infection), so I did a Google search and thought that I may have caught an infection from using the hostel’s toilets, which then caused my period to cease. I also thought it was stress-related, coupled with my normal irregularities, but by the 5th month, I decided to visit the clinic. I spoke with the doctor and she recommended some tests, which I did, and then referred me to the gynaecologist. I was so scared then because I had gone for the test and found out that it was 12k. Since, I was so broke, I asked the doctor, “What will happen if I don’t do the test?” He said, “You might not be able to have children”, So I did the test out of fear *laughs* and emptied my account.

Y: *laughs* We can say it was worth it, I guess.
J: I guess. I didn’t even go back to show him the test because I was going on break, so he placed me on drugs and I went home. I got back, kept the result and continued the drugs for about three months, during which my period was regular again, but after that, the irregularity continued. It was in 2018, after I had had another four months of no menstrual flow, that I went to the hospital and saw a senior resident. I showed him the lab results and my scan (which showed multiple ovarian cysts) and it was he who said it was PCOS. In the hormone profile, FSH was normal but LH was elevated (this is usually an  indication of a problem with the ovaries).

Y: During that time, did you have some financial support from your parents?
J: Yeah. I told them but I didn’t really want to make them worry, so I just told them it was a hormonal imbalance; after 2018, I didn’t mention it again.

Y: Did you understand the magnitude of the diagnosis, being a medical student yourself?
J: Yes, I did, after researching it. I read a lot of research articles on Google scholar, so I had information. Because I had menstrual irregularities and I started late, I always had a fear within me that something was wrong. Moreover, some of my aunties had delayed childbirth, so, even before I started menstruating, I always carried the fear of having that.

Y: That means your fears were confirmed. How did that affect you the first few days or months after your diagnosis? Was it disbelief? Fear? Indifference? Or even acceptance?
J: In 100L, I cried a lot because the drugs gave me a lot of abdominal discomfort coupled with the fact that I have dyspepsia (commonly called indigestion). I was in so much pain. I told my roommate and my two best friends, but when it had a name in 400L, it definitely crashed my self-esteem. I had a boyfriend then, so I told him about it and explained everything to him. I told him to go read about it and be sure he still wanted to stay. Sometime later, about a month, I reminded him again to be sure he knew what he was getting into and if he still wanted to stay. So, I guess having the reality of your fears hit you is different from having the fears. Then, the symptoms started getting worse at the time — the receding hairline, the dysmenorrhoea (painful menstrual cycle) worsened by nausea, vomiting and a lot of discomfort. The acne that was supposed to go away since I was already no longer a teenager was still there and, sometimes, it gets worse. 

Y: Hmm, dyspepsia… We can definitely tell that you’re a medical student.
J: *laughs* I guess I won’t call it Peptic Ulcer Disease, because I haven’t done an upper gastrointestinal endoscopy (a procedure in which a tube is passed through your throat to view the insides of your stomach). So,  I just called it that. 

Y: *laughs* Alright. Our readers will just have to rely on Google for all these big words then.

Having had ‘the talk’ with your friends and your boyfriend, do you think it’s something you’ll want to bring up with your parents eventually? Especially with the expectation of grandchildren that African parents tend to have, whether it is against their children’s wishes or not.
J: We thank God for science. You can definitely have kids even if you have PCOS. A lot of options are available, and my orientation has changed. I am no longer bothered about having kids and it has nothing to do with PCOS. I hope to be far away from my parents before I broach the subject — at least, having ‘the talk’ long distance is way easier *laughs*.

Y: I hope that works out for you, really, because at the end of the day, difficulty in having children or not, people should be able to make these decisions for themselves, with their partners at their own time, without pressure from society or anybody.

Now, while you have accepted it, some days may actually be difficult. Do you have a support system or any coping mechanisms?
J: The only hard part about this is my hairlines. I really do treasure my hair, and it sucks on so many levels that I am losing my hairline even when I am doing everything right. It sucks so much. I am really into my edges, and I hate seeing them that way despite my efforts. I tried getting supplements but they didn’t help much.

The menstrual cramps have been killing me. They are so uncomfortable sometimes, I feel like yanking out the entire reproductive system. I practically do nothing but have pains, and considering the fact that I have ulcer, I can’t use strong pain relievers. I have been tempted to get over-the-counter opioids, but I am scared of addiction. So it just sucks.

The acne doesn’t even let me breathe sometimes, and when using skincare products, you just know in your mind that your face cannot be entirely smooth since there is an underlying hormonal issue.

Y: I definitely don’t understand how it feels, but we live for the good days and wish away the bad. I find solace in videos about body positivity, if it helps .

You mentioned earlier an interest in menstrual hygiene. Does having PCOS have anything to do with that?
J: I think it does. But it also has to do with the fact that there is a lot of whispering and low tones around menstrual health conversations. Sometimes, you can’t say you’re having menstrual cramps to some guys, so you say you are sick. Young girls can’t even speak to their mothers about their menstrual problems. They tie menstruation and reproduction to your worth as a woman, and some young ladies have identity crises once they start having these problems.

Y: I really wish it wasn’t so. One time, I walked all the way from Tedder Hall Cafeteria to past Law department and not a single person told me I was stained. I felt so terrible when I got home.
J: Wow. That is so terrible. Really sorry about that.

Y: Thanks but I’ve let it go. Slightly.
 J: *laughs* I understand. I have been there a couple of times. I remember when I had abdominal cramps in the Anatomy Reading Room during my menstrual cycle and kept going to throw up. I couldn’t tell anyone what was wrong because my female friends were not around.

Y: A lot of this certainly has to do with upbringing, not just what society says we can and can’t talk about. I say this because I don’t have any problems talking about that part of my health. It’s most likely because my mother always made me collect money for pads from my dad when I was younger, and he would behave like it was no big deal, which it actually isn’t, but I was definitely shy about it then.
J: This is very true. The little information that is given. The way we have to source for information by ourselves and hope that your school holds events that people volunteer to come to and speak to you about your body. So much unnecessary awkwardness around sexual and reproductive health conversations.

Y: Not to mention that we always tie things like this to waywardness.
 J: True. This is good. I had to do a lot of reorientation; I had to make myself get comfortable with  these conversations.

Y: So, considering your interest, have you been involved in any activity that educates people about women’s health and menstrual hygiene? Whether on the frontlines or at the background?
J: I have. I go for outreaches to schools with a few organisations I am a part of. I have conversations with friends and anyone that cares to hear, whenever the topic comes up. I talk about it on my Twitter handle whenever I can. I hope to do more, but I think I have contributed something to make sure it is better. A little here, a little there… We keep pushing.

Y: Yessss, definitely, and thank you for all the effort you’ve put in because a little does go a long way. To round up, do you have any fears about or hope for the future especially considering all that you know about PCOS and living with it?
J: Personally, I won’t call it fears. Sometimes, I just remember some future risks and I get scared a little bit (I don’t want to state them, so I don’t scare people), but I know that, eventually, I would be fine. I hope to be involved in research pertaining to the disease, especially in Nigeria. I have seen a couple of women in clinics and the fact is the data is not being recorded. I hope that the disease is better understood and more diagnostic options are made available and probably a cure. I also hope that it will become a more common conversation. Let’s talk PCOS; let’s talk about gynaecological conditions. I do worry about the dysmenorrhoea too, but I have seen a gynaecologist for that already.

Y: That is indeed the right mindset to have moving forward. And good news hopefully??
J: *smiles* He prescribed pain killers and then placed me on a drug I would use for a few months. 

Y: Thank you so much, Jane, for taking out time to have this conversation with me. I definitely learnt a lot, and I look forward to more insightful conversations with you. I wish you the very best.
J: Thank you so much, Yomi; it was nice talking to you. Good night.

Y: You’re welcome. Have a good night.

P. S.
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PENDICAL an educational weblog creates a platform for medical personnel/practitioners including medical students to share inspiring stories, lifestyles, and resources for medical personnel/practitioners or anyone aspiring to be a physician thereby encouraging and promoting diversity in lifestyle, mindset, thoughts and experience among medical personnel and medical students. PENDICAL started out, like many realities, a dream. It is a weblog whose contributors are medical personnel. In a most profound way, medicine and health meet art in the realm of writing. What we seek to achieve cannot be summarized into bullet points, but if through the pieces herein someone’s path is more illuminated or another is inspired to reach beyond its ‘limits’, if doubts are cleared from this mind or the spirit of another are lifted after a long day, PENDICAL would have served well in the line of duty. Our core values are creativity, excellence, truth, and passion.

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