WarmLightXO Sheds Some Light On PCOS

Hi everyone, it has been sometime but we're back with another interview with a spectacular person who is always helpful and kind to everyone they meet. @WarmLightXO is an excellent leader, a great friend and a beautiful soul. He leads the Living With Leaders interview series and has been going such a great job. I hope you enjoy reading as much as I did❤️

Polycystic ovary syndrome (PCOS) is a hormonal disorder that affects over 10 million people in the world. It is marked especially is usually initiated by an elevated level of luteinizing hormone, androgen, or estrogen which results in an abnormal cycle of gonadotropin release by the pituitary gland. (Source:https://www.pcosaa.org/)

Q: Hello Elliot, it’s so great to speak with you today. You’ve been a reader of the inclusivity diaries for quite some time now, what strikes you most about the series and the people interviewed?

Hi hi, thanks for having me! Yes, I remember when this series started and it’s one of my absolute favorite interview series. Every time a new interview comes out I learn something new about my peers and different disabilities, impairments, and chronic conditions. Education and inclusivity are d definitely values of mine so I majorly appreciate this series and the lovely people involved 💚

Q: What are things you thought you knew about PCOS but were debunked after you got your diagnosis?

Ooooh a lot of things hehe. First, and this is a big one, I thought you had to have ovarian cysts to have PCOS. That is indeed one of the symptoms, but it isn’t a requirement for diagnosis. I also thought only females could have PCOS! As some of my close friends know, I’m intersex, so it was definitely a shocker for me to learn that it was possible for non-females to have PCOS.

Q: What symptoms or signs did you notice that made you go in search of medical advice?

The biggest thing for me was my lack of a menstrual period over the last six years. I’ve also experienced intense cramping, and about two years ago I started gaining lots of weight for no apparent reason, and that was when I really started searching for an explanation.

Q: How long did it take you to get an accurate analysis of your symptoms?

About six years, which may seem like a long time, but the average diagnosis time for PCOS is five years. I went to dozens of doctors who all told me there was nothing to be worried about and suggested I take birth control to regulate my hormones. Several months ago I visited a new doctor who diagnosed me almost immediately and started a treatment plan. I’m beyond grateful for her💚

Q: What are your opinions on the processes of getting a diagnosis or receiving treatment based on how long it took you?

I should specify first that I’m American, and the healthcare system here is not designed to benefit the patient.

It was a very difficult, exhausting process as I kept telling doctors that I was uncomfortable with my symptoms and they kept brushing it off. It’s extremely disappointing when you entrust a medical professional with such personal concerns and they act like you don’t know what you’re talking about.

With that said, my current doctor is wonderful and I’m very glad I kept trying.

Q: What advice would you give people who are struggling with getting proper medical testing and are being turned away from healthcare professionals?

Trust yourself. Keep trying. Fight for yourself and your health. You know yourself and your body, and as discouraging as the process can be, you are worth the time and effort. It can take time to find the right professional for you, and you are worth this process.

And if you ask for a test to be run and they say no, tell them you want their refusal noted in your chart. This usually changes their minds.

Q: When it comes to PCOS, what do most people not understand about it? (misconceptions, generalizations and stereotypes)

The biggest one that comes to mind- when people get diagnosed with PCOS, people tell them to lose weight. Not only does this disorder make it incredibly difficult to do so, there is absolutely zero evidence that it will help with the disorder.

Another one, people with PCOS are not necessarily infertile. Plenty of people with PCOS are absolutely capable of having biological children.

It’s not a rare disorder. Somewhere between 6%-26% of people worldwide have PCOS, which is between half a million to two people. It’s the most common endocrine disorder.

Q: What has been your support system during the period of you trying to get a diagnosis up until now?

My mom has been a lifesaver. When trying to find a doctor, she was the one who kept advocating for me and reminding me to keep trying. My doctor is phenomenal, she listens to me and my experiences, and my opinions matter to her. My therapist is one of my favorite people on the planet, she has written so many letters to doctors and encouraged me to stick up for myself. And my cousin who was diagnosed with PCOS just a few months before me has been a major source of education and comfort.

Q: What are the things you struggle with in your daily living because of PCOS?

My hormone levels are constantly changing and never quite right, which means I struggle with acne, excessive body hair and random irritability. I have to take huge pills twice daily to keep my cysts from bursting. My cholesterol and insulin are constant struggling, and I'm at high risk for diabetes and heart disease. I’ve also had multiple miscarriages, and my weight can fluculate 40 pounds either direction in a month. Although I don’t have a menstrual period, I have cramps about two weeks each month which I have to plan my schedule around because they can become crippling.

Q: What adjustments or accommodations have you made to your lifestyle because of PCOS?

I try to remember to take my medication, eat more fiber, and do strength training a few times a week. My biggest adjustment and suggestion is to reduce stress as much as possible. For people who have ovarian cysts, stress can make them inflame and possibly burst, which is obviously not something we want. In general, I would say I’m especially gentle with myself, especially when I experience bad cramping or increased depression. I think it’s really important to remember that you know your body better than anyone else, and the accommodations you’ll make for yourself are not the same as anyone else’s.

Q: In your opinion, does the media portray the symptoms and manifestations of PCOS accurately?

Although it is a very common disorder, I don’t remember ever seeing it in the media.

Q: Has it been difficult managing the conditions that come with PCOS and in what ways?

At times it’s been difficult. Like I mentioned, PCOS brings high risk for other problems such as extreme weight gain, diabetes from insulin resistance, heart disease from high cholesterol, constant brain fog, skin and hair problems, depression and anxiety, insomnia, headaches and infertility. I’ve come to peace with these struggles and do my best to take care of myself, so I’d say the most difficult thing has been weight stigma when people don’t understand why my weight fluctuates so much and give unsolicited, inapplicable advice.

Q: How has 7 Cups been a sense of community and support to you?

When I very first got diagnosed, I needed to not think about it, so my 7 Cups responsibilities were a welcome distraction. After taking some time to process, I was ready to learn more from others, and was able to chat with people experiencing similar things.

Q: Would you like to add anything else?

Being diagnosed with PCOS is daunting. It’s a big diagnosis and can feel shattering. It is going to be okay. You are going to be okay. 💚