Understanding and managing PCOS — A UX Research Case Study

📄Context

Polycystic Ovarian Syndrome, commonly known as PCOS, is a condition that has severe consequences for both physical and mental health. As someone who was diagnosed with PCOS five years ago, I personally experienced its debilitating effects. Despite my attempts to manage the symptoms, I found it difficult to cope with them, and the doctors did not provide adequate support. To make matters worse, some of my friends were also struggling with PCOS and facing similar challenges.

These experiences have led me to question why PCOS is not given more attention, given its prevalence and the lack of effective management options. In this research case study, I aim to investigate the experiences of individuals with PCOS and emphasize the urgent need for a better understanding and management of this condition.

Team

Solo

Role

UX Researcher

Duration

3 weeks

Tools

FigJam, Notion

🛠️Research methods used

• Secondary research — desk research, literature review
• Primary research — User interview
• Analysis — Affinity mapping, user persona, empathy mapping
• Ideation — HMWs

💭Assumption

To begin the research, I formulated an initial assumption about the condition to establish a starting point and define the research scope.

PCOS symptoms can vary greatly between individuals, making it challenging for patients to determine effective coping mechanisms for their specific condition. This can lead to negative body image issues and other complications that can impact their ability to lead a normal life.

🔬Secondary research

Although I had some familiarity with the condition based on my personal experience, I recognized the value of gaining a more comprehensive understanding from a medical perspective. This would involve familiarizing myself with current diagnosis and treatment methods, as well as the relevant vocabulary used in the medical field.

Source — Coho Health

What is PCOS?

Polycystic Ovary Syndrome (PCOS) is a condition in which the ovaries produce an excessive amount of male sex hormones known as androgens. The cysts in PCOS refer to fluid-filled sacs that develop in the ovaries. Although some individuals with PCOS do not have ovarian cysts, they can still be diagnosed with the condition.

During ovulation, a mature egg is released from the ovary, which can then be fertilized by sperm. If the egg is not fertilized, it is expelled from the body during menstruation. PCOS occurs when the body does not produce enough hormones required for ovulation. As a result, the ovaries can develop small cysts and produce excessive amounts of androgens, which can disrupt the menstrual cycle.

Source — fx Medicine

Causes

• High level of androgen
• Insulin resistance
• Genes
• Inflammation

Common symptoms

• Irregular periods
• Heavy bleeding
• Hair growth / Hirutism
• Acne
• Mood fluctuation
• Weight gain
• Male patterned baldness
• Headaches
• Bloating

Complications

• Infertility
• Metabolic syndrome
• Diabetes
• Sleep apnea
• Endometrial cancer
• Depression

Diagnosis

Polycystic ovary syndrome (PCOS) is a condition that affects people in different ways. There are several tests that healthcare providers use to diagnose PCOS depending on the person’s symptoms. The most common tests include a pelvic exam, ultrasound, and blood tests.

• Pelvic exam — a healthcare provider checks the reproductive organs, including the ovaries, to see if there are any changes in size, shape, or masses.
• Ultrasound — to identify the presence of ovarian cysts, their size, and their location. It also helps healthcare providers evaluate the thickness of the lining of the uterus
• Blood tests — to identify hormone imbalances, insulin resistance, and abnormal levels of cholesterol and lipids.

Other tests include checking cholesterol and triglyceride levels because people with PCOS are at higher risk for metabolic disorders and heart disease. By using these tests, healthcare providers can better diagnose and manage PCOS to help people feel better.

Treatment

• Change of diet and weight loss — this is often recommended by doctors because weight gain and insulin resistance can worsen symptoms and increase the risk of long-term health complications such as diabetes and heart disease.
• Medication to induce ovulation — They are provided to release the eggs naturally. But it can also cause abdominal pain, bloating caused by ovarian hyperpigmentation
• Diabetes medication — They can help with regulating blood glucose levels and help with ovulation
• Birth control pills — They can help with regulating the menstrual cycle and reduces androgen levels

Source — Healthline, Johns Hopkins Medicine

👭Gender and PCOS

Source — The Unwritten, The Mighty, Eat Love Live

In the course of my research, I discovered that PCOS affects not only cis-gender women, but also those who identify as non-binary, transgender, intersex, gender-fluid, agender, and so on. It is important to include gender non-conforming individuals in PCOS research for several reasons, including:

• the lack of queer-focused and culturally competent medical facilities,
• the potential impact of PCOS symptoms on transgender individuals undergoing Hormone Replacement Therapy,
• and the possible role of PCOS symptoms in questioning gender identity.

This newfound understanding has influenced my approach to participant recruitment, and I aim to be more inclusive in future primary research studies.

💡Insights

• Diagnosis and treatment for PCOS are determined based on individual patients’ test reports, symptoms, and recovery goals.
• Early attention and management are crucial as PCOS can potentially be life-threatening if left untreated.
• Research related to PCOS often excludes gender non-conforming people, leading to a lack of understanding about how PCOS affects this community

🗣️Primary research

After gaining a comprehensive understanding of the scientific aspects of PCOS, my next step is to initiate primary research to explore patients’ experiences regarding their daily routines, lifestyles, and treatment journeys. To delve deeper and discover the root causes of the problem, I have opted to conduct user interviews.

Research goals

• The patient’s daily routine and any lifestyle changes they have made
• Their progress so far in managing PCOS
• How they are coping with the lifestyle changes that come with PCOS management
• The challenges they’ve faced while coping with PCOS

Screening and recruiting participants

To recruit participants for the user interview, I established the following criteria:

• Age group — participants can be anywhere from puberty to menopause
• Gender — participants can identify as cis-women or gender non-conforming
• Diagnosis — participants must be diagnosed with PCOS and are undergoing treatment
• Location — participants can be located anywhere globally since PCOS diagnosis and treatment are similar worldwide

I posted this message across social platforms and communities to recruit participants

I was able to find 8 participants of which:

• age group (17–30)
• 5 ciswomen, 2 non-gender, and 1 genderfluid

📌 Unfortunately, I was unable to find any transgender participants who were willing to share their experiences. I recognize the challenges associated with divulging personal health information to a stranger. Due to time constraints, I decided to proceed with user interviews with the participants I was able to find.

Planning the structure of the user interview

For the user interview, I wanted the flow to feel more natural: more like a conversation and less like an interrogation. So I divided the interview into 4 parts:

• Brief — I wanted to set the stage for the interview, and provide some context about the interview. I wanted to be clear about my intentions and make the participants feel comfortable.
• Warmup questions — I wanted to keep this part to be brief and to get a picture of what their lifestyle looks like. I wanted to find a hook that I could use as a segue to talk about PCOS.
• Exploratory questions — to collect information on individuals’ experiences with PCOS, I divided this part into three parts — diagnosis, treatment journey, and the challenges they faced while coping with the condition.
• Debrief — to conclude the interview in a roundabout way, and ask the user to confirm, clarify, or add more to their statements.

Click here to view the full interview script

🕸️Affinity mapping

After reviewing the data collected from the interview, I identified shared patterns among participants such as their comprehension of the ailment, their interactions with gynecologists, adverse reactions, and concerns about their well-being.

Affinity mapping

👩🏾User persona

Based on the insights I gathered, I learned that ciswomen and gender-nonconforming people have different goals and concerns about their treatment journey. So I created two different personas and listed down their motivations, goals, and pain points. This helped me paint a better picture of their needs.

Persona 1 — Ciswoman

Nalini (26, cis-women) is a Software Engineer based in Chennai

Persona 2 — Non-binary

Taylor (19, non-binary) is a film studies student based in London.

Empathy mapping

From the interview, I also gathered some key quotes and how they feel about their condition and it helped me understand the key problems with PCOS treatment.

Persona 1 — Ciswoman

Persona 2 — Non-binary

💡Insights

1. Lack of proper information

• There is so much information available about managing PCOS but the patients don’t know which one is more suitable for them because everybody is unique
• Currently available resources are only limited to cis-women but not to non-binary, gender-fluid, transgenders so they feel invalidated by the medical community
• PCOS influencers on social platforms are sharing sugar-coated information that is not verified and mostly trying to sell their products

“There’s not enough information or resources for non-conforming people, or for people who don’t want children.”

2. Lack of support from gynecologists

• Most gynecologists are lethargic or refuse treatment unless the patient is planning on getting pregnant
• They don’t offer any insights into why certain symptoms and side effects occur. Some of the patients don’t have enough time and knowledge to learn about it and feel clueless.
• They are deeply concerned by the implications caused by PCOS (ex: diabetes, ovarian cancer)

“Trying to find things to help the symptoms seems so difficult and doctors are so reluctant to listen most of the time”

3. Lack of empathy from others

• Side effects caused by PCOS such as tiredness, exhaustion, and mood swings make them hard to lead everyday tasks.
• Their friends and family don’t understand their concern and dismissed it by saying “this is nothing you’ll be fine” so they don’t feel like talking about it to them

“It doesn’t seem to matter how much I talk about my distress and my quality of life decline. I feel blamed for my own suffering. I suspect this is due to a combination of misogyny, ableism, and fatphobia. It’s so frustrating.”

🧠How might we tackle this?

From the insights, I brainstormed solutions as to how to make PCOS treatment easier for patients, and here are my suggestions:

• Daily logging of your period cycle, mood, side effects, and medications can provide valuable insights and help them monitor progress toward their goals.
• A compilation of medically precise information on topics associated with PCOS, such as typical side effects, suggestions on how to cope with them, the purpose of medications, and more.
• To make the most of each doctor’s visit, patients will be given pre-prepared questions ready to ask. These questions will be based on the symptoms they’ve recorded and suggest topics to discuss with their doctor. After each visit, patients can take a survey to provide feedback and suggest improvements for the next appointment.
• PCOS patients can find solace in a community of individuals who share their struggles and challenges. Such a community provides a platform for open discussions on various topics where patients can feel heard and seen without judgment. To ensure a safe space for all, the community should be moderated to prevent any hate speech or unauthorized medical advice.

📖What I learned

I was really excited while working on this project because it combined both my background in healthcare and my passion for user research. Here are some of the key learnings I had:

• It is important to make your participants feel comfortable during the interview. Especially if you’re talking about health conditions like PCOS, you should let them know that they can stop if they don’t want to talk about it anymore.
• Be clear about how you’re using the information collected from them. Ask for their permission before recording the conversation.
• Ask open-ended questions. It lets your participants give a broader answer about their experience and paints a better picture of the problem. Ask prompting questions whenever necessary.
• Be inclusive while you’re recruiting your research participants.

Thanks for making it to the end! Please share your thoughts and feedback in the comments :) If you enjoyed this, please take a look at my portfolio for more projects.

Thanks to Sharad Mothay for his insightful feedback on my case study.

I’m actively seeking full-time Product Designer / UX Researcher roles. If you have any cool opportunity or just want to chat, please feel free to reach out on Twitter, LinkedIn, or by Email.