Grow and Glow: Karanpreet Johar
March is Endometriosis Awareness Month, a time dedicated to spreading awareness and education about this often-misunderstood condition. Endometriosis affects an estimated 1 in 10 menstruators worldwide and can cause chronic pain, infertility, and a host of other debilitating symptoms.Unfortunately, many women live unaware of their condition for years, as was the case with Glow Within's co-founder Karanpreet Kaur Johar, who went undiagnosed for 12 years before finally receiving a diagnosis of endometriosis. Her journey inspired her to start Glow Within and bring greater awareness to this often-misunderstood condition. It's important to recognize the impact that endometriosis can have on the lives of those affected by it, and to work towards finding better treatments and support for those living with this condition.
In this interview, Karanpreet will share her personal journey with endometriosis, the challenges she has faced, and how she is working to make a difference for those living with this condition.
What endometriosis is and how it affects the body? How is it different from other menstrual disorders?
Endometriosis is a complex condition that affects not only the reproductive system but can impact various organs throughout the body. This disease occurs when endometrial-like tissue grows outside the uterus, causing inflammation, pain, and scarring.
The tissue growth can occur on several organs such as ovaries, fallopian tubes, bladder, lungs, and larger intestine. This can result in various symptoms such as pelvic pain, painful periods, heavy menstrual bleeding, painful bowel movements, fatigue, and infertility.
It is important to note that endometriosis is not just a reproductive condition or menstrual disorder, but a whole-body disease. The inflammation and pain caused by endometriosis can affect a person's mental and emotional well-being, impacting their quality of life. Furthermore, the scarring that can result from endometriosis can lead to bowel and bladder issues and impact a person's ability to perform daily activities.
Can you share your personal experience with endometriosis? When did you first notice symptoms and how were you diagnosed?
As soon as I started having my periods at the tender age of 12, I knew something was not right. The severe and unrelenting pain was excruciating and left me feeling helpless and alone. I was rushed to the emergency room every month my concerned parents who couldn't bear to see me suffer so much pain,but the medical professionals often dismissed my symptoms, leaving me feeling frustrated and dismissed. The pain was so intense that it impacted every aspect of my life. From school to extracurricular activities to socializing with friends and traveling, hinged on how severe my symptoms would be on any given day. I couldn't escape the debilitating symptoms. It was as if my body was betraying me, and I felt embarrassed and isolated from my peers. I remember feeling overwhelmed by the weight of the pain and sadness, wondering why I had to suffer while others seemed to go about their lives without a care in the world.
For years, I continued to suffer in silence, gaslighting myself into thinking the pain was all in my head. Only when I was 16 years old, competing in a tournament far from home, did the severity of my condition hit me. The pain was so intense that I couldn't even speak, and I was alone and scared, with no one around to help me.
It was the longest night of my life, and I was left questioning why this was happening to me. Despite seeking help from numerous doctors and specialists over the years, my symptoms were often dismissed or attributed to other conditions such as irritable bowel syndrome and PCOS. This led to a prolonged period of misdiagnosis and a frustrating cycle of ineffective treatments.
It wasn't until I moved to Canada and a friend stumbled across an article that spoke to the exact symptoms I had been experiencing that I found hope. Finally, I was able to seek out a specialist who diagnosed me with endometriosis after 12 long years of suffering.
This journey has been emotionally taxing, and I have felt a range of emotions, from anger and frustration to sadness and hopelessness. However, it has also given me the strength and motivation to speak out about my experience and advocate for better healthcare for those living with endometriosis and chronic pain. We need to break the silence surrounding this condition and work together to find effective treatments and support for those who are affected.
How has endometriosis affected your daily life and your relationships? What challenges have you faced?
Endometriosis has had a profound impact on my daily life and relationships, especially as someone who lived with misdiagnosis for more than a decade. The constant pain and fatigue have made it difficult for me to keep up with daily tasks and work, which has caused stress and anxiety. It's hard to explain to others why I can't just push through it and be "normal" like everyone else. According to research conducted on Swedish women with endometriosis, patients with the disease have significantly lower levels of quality-of-life scores than the general population, especially in terms of vitality, physical fitness, and general health.
One of the biggest challenges I faced was the negative impact on my self-image. I often felt like my body was betraying me, and that I was less of a person because of my condition. It was hard to keep up my self-confidence and self-esteem when I was constantly battling with my own body.
The symptoms also affect my sleep, increase stress levels and severe mood swings leading to absenteeism from work or the inability to work long hours, which often makes one feel guilty.
Additionally, because endometriosis can be hard for others to understand, I often found myself struggling to establish healthy boundaries in my relationships. I would go to great lengths to accommodate others, even if it meant sacrificing my own well-being. This led to a cycle of guilt, shame, and resentment that made it difficult to maintain healthy relationships.
The financial burden of managing endometriosis has also been a major challenge. Treatment options can be costly, and it can be hard to justify spending so much money on something that others may not understand or see as a priority
Overall, living with endometriosis has been a journey of ups and downs, but I'm grateful for the lessons it has taught me about resilience, self-care, and the importance of advocating for myself.
What do you think are the biggest misconceptions about endometriosis? How can we work to raise awareness and educate people about this condition?
Endometriosis is often mischaracterized as a minor inconvenience or a normal part of menstruation, which perpetuates the idea that it's not a serious condition. Another myth is that only older women can develop endometriosis, but it can actually affect women of any age. There is also a common misconception that the severity of the condition is linked to the amount of endometrial tissue present, but this is not always the case. Additionally, some people believe that having a hysterectomy (removal of the uterus) will cure endometriosis, but this is not always true, as endometrial tissue can grow on other organs besides the uterus.
It's important to dispel these myths and raise awareness about endometriosis, as it can have a significant impact on a person's physical and emotional well-being. People living with endometriosis often face delays in diagnosis and treatment due to these misconceptions and a lack of awareness among healthcare providers.
By sharing personal stories and advocating for research and funding, we can work towards a better understanding and management of this condition. It's also important to break down the stigma surrounding menstrual health and to promote open and honest conversations about the impact of conditions like endometriosis on people's lives.
How has the medical community responded to endometriosis? Do you feel like there is enough support and resources available for those who suffer from this condition?
In my personal experience, the medical community has not responded adequately to endometriosis. Many doctors are not trained to diagnose or treat this condition properly, leading to misdiagnosis and delayed treatment.
Through my lived experiences and reading through research related to women’s health over these years I have found out that unfortunately, women's health issues, such as endometriosis, have historically not received the attention and funding they deserve. There are a number of cultural and societal factors that contribute to this gap in research and treatment. One issue is the stereotype that women are overly emotional or exaggerating their symptoms, leading to dismissal or disbelief of their pain. This can lead to delayed diagnoses and inadequate treatment.
Another issue is the lack of diversity in clinical trials, which often exclude women or do not take into account the unique biological and social factors that affect women's health. This lack of representation can result in incomplete or misleading findings, which can harm the health outcomes of women.
Cultural issues, such as shame and the taboo surrounding menstrual health, also contribute to the lack of attention and funding for endometriosis. Menstruation is still considered a taboo topic in many cultures, and this can create barriers to seeking care and resources for menstrual health issues.
Additionally, there is a lack of funding and research for endometriosis, making it difficult to find effective treatment options. We need more education and awareness about women’s health and the impact it can have on overall health and well-being. We also need to work towards breaking down stereotypes and cultural taboos that prevent women from seeking the care and resources they need.
Can you discuss some of the treatment options available for endometriosis? What has been your personal experience with different treatment options?
There are various treatment options available for endometriosis, including pain management, hormone therapy, and surgery. Personally, I have tried many different treatments, including painkillers and hormonal birth control. While these treatments provided some temporary relief, they were not able to fully manage my symptoms.
How have you personally found ways to cope with the pain and other symptoms of endometriosis? What advice would you give to others who are struggling with this condition?
I have found that managing my endometriosis requires a multifaceted approach that includes self-care, exercise and healthy eating. I can attest that going through this disease and trying to manage basic tasks can be a lot so it can be hard to do regular exercise and/or take time for self-care and eating healthy.
Managing the symptoms of any condition can be a challenge, but over time, I've discovered some techniques that have been helpful for me. One thing that has made a big difference is blocking out time for yoga each week and incorporating simple self-care practices into my daily routine. This might mean getting enough rest, eating well, taking short walks, and practicing relaxation techniques such as yoga or meditation to manage stress. Additionally, it's important to make time for activities that bring joy and help you relax, whether it's reading a book, taking a warm bath, or spending quality time with loved ones.
There are also medical treatments available for endometriosis, including pain medications, hormone therapy, and surgery. It's important to work with a healthcare provider who is knowledgeable about the condition and can help you find the best treatment options for your individual needs.
Finally, it's important to be an advocate for yourself and for others who suffer from endometriosis. This may involve speaking up about your experiences, advocating for more research and funding for the condition, and educating others about the realities of living with endometriosis. Together, we can work to raise awareness and improve support for those who are struggling with this condition.
Can provide some resources that Endo warriors can access to advocate better for their health and also for people who are learning about this disease for the first time?
Ofcourse, Glow Within Foundation provides education about the condition specifically to youth, but you can follow the list below to get support for people of all ages.
Endometriosis Network Canada: The Endometriosis Network Canada is a nonprofit organization that provides education and support specifically for Canadians who are dealing with endometriosis. They offer a variety of resources, including support groups, educational materials, and advocacy opportunities that are tailored to the Canadian healthcare system.
The Endometriosis Foundation of Canada: The Endometriosis Foundation of Canada is a nonprofit organization that provides education and advocacy for those dealing with endometriosis in Canada. They offer resources such as educational materials, support groups, and advocacy opportunities that are specifically focused on the Canadian healthcare system.
The Canadian Society of Endocrinology and Metabolism: The Canadian Society of Endocrinology and Metabolism is a professional organization that focuses on promoting research, education, and clinical practice related to endocrine disorders, including endometriosis. They offer resources such as educational materials, clinical guidelines, and research opportunities.
Women's Health Matters: Women's Health Matters is a website that provides health information and resources specifically for women, including information on endometriosis. It offers articles, research updates, and advice from healthcare professionals, all with a Canadian perspective.
Canadian Women's Health Network: The Canadian Women's Health Network is a nonprofit organization that focuses on advancing women's health in Canada. They offer a variety of resources, including articles, webinars, and research updates, that can help women with endometriosis better understand their condition and advocate for their health.
In case you our looking for medical support and a list of experts overseas you can find more resources below :
