Living with Endometriosis: Paige Gibbons on why endo isn't just a female issue, how acupuncture changed her life and why she's bringing positivity to the endo-community
Paige Gibbons is one half of the infectiously fun podcast The Uterus and The Duderus. After years of pain and ineffective treatment, an encounter with Instagram changed Paige's approach to endometriosis and her journey with the disease. With the help of lifestyle adjustments and a determined and hopeful perspective, Paige is living with endometriosis in the most positive way she can and is hoping to help others do the same.
Can you give us some background on your endometriosis story? What were your symptoms, how long did it take until diagnosis and what treatments have you had?
I have had endometriosis for over ten years. It started when I was sixteen, my periods were unbearable and even ovulating caused serious pain. In addition to the pain I would vomit and often pass out. It took six years for me to get a diagnosis. I’ve had two laparoscopies; sadly these surgeries only temporarily alleviated the pain. I've also been on the birth control pill and had the Mirena IUD. The most successful treatment I’ve had is acupuncture and herbs from an acupuncturist that specialises in endo.
What is your current experience with endometriosis and how do you cope with the disease and the related symptoms on a daily basis? Have you made any diet or lifestyle changes to support you?
I have moved away from all synthetic hormones, like the Mirena IUD and the birth control pill. I get weekly acupuncture and take daily herbs and supplements. I’ve also cut out all sugar and may soon cut out dairy. With these changes I am able to live a relatively normal life. I am in no way free from pain but I am able to work part time and maintain a social life. In the past this has not been possible for me so these changes are very worth it!
You’re at a point where you’re talking about endometriosis very publicly, and clearly you’re comfortable with doing that and feel it’s an important subject to share. Is this a reflection of the attitude you have taken to living with the disease?
It totally is! I never used to talk about my disease. I was in denial and didn’t know how to cope with my reality. A year and a half ago I was at my wits end and stumbled upon #endosisters on instagram. As I scrolled through pictures of other girls with my disease who were fighting I started weeping. I had never met anyone else with my disease, I suddenly felt so much less alone and I knew in that moment that I wanted to join and fight for my community. It started with me just commenting on other endo sisters pictures and following girls here and there to me producing and running my own endo podcast.
What was the inspiration behind starting your podcast and what do you hope your listeners will gain from it?
It's been a total blast! Last year I was very sick with endo and chronic migraines. I sort of lost my life for a while. I was always in bed or in urgent care and I sort of disappeared. During that time I decided that I wanted to start a YouTube channel when I was ‘better’ to document my life with endo. The problem was that I wasn't getting better, it was so discouraging. One day I was having lunch with my now co host Nik and he suggested that instead of doing a YouTube channel we do a podcast. His thinking was that I could literally be lying in the couch with my heating pad and we would still be able to podcast. We started recording the very next week and have been ever since! Our goals for the podcast is to raise awareness, connect with other endo sisters and the loved ones of endo sisters and to create something light hearted and fun for the endo community.
How important was it to you, to launch a podcast with a male co-host - was it a deliberate move to get men more involved?
Having a male co host was not intentional. Now that we’re fifteen episodes in I personally feel that we have an advantage to having a male co host. Endometriosis does not just affect women. The men I am close to in my life have all been greatly impacted by my illness. In episode 8 my dad is a guest and he candidly and honestly talks about how endometriosis has been affecting his life and his relationship with me for over ten years. Nik and I both feel that the conversation about endo needs to be larger than just women. My life is full of supportive, loving men who have sacrificed time, money and energy supporting me and taking care of me. Endo affects a reported 176 million women worldwide (Endofound.org). I would guess that number is actually higher and therefore is definitely affecting not just women but their loved ones as well.
Nik just happened to have this podcast idea and was super down to invest his time and energy. It’s turned out to be an amazing experience that has really opened up the dialogue to both women and men.
In your podcast you talk about the fact that a lot of the endometriosis blogs/vlogs are not always helpful for those reading/viewing. What is your experience with this and your views on the subject?
I really try to keep a positive mind-set with the books I read, the podcasts I listen to and the people I surround myself with. I fully believe that we make our own emotional reality and that it’s important to cultivate a positive and hopeful environment especially when we’re chronically ill. I’ve seen some material out there that is so hopeless and it breaks my heart. I think this needs to be addressed as a tool to bring hope to those people. This is not to say that I do not value honesty. Be honest about your pain, cry, scream, post, be vulnerable! I find it encouraging seeing posts of endo sisters really struggling (like me!) yet still finding the good and not giving up.
What are the challenges you face as a young female living with a chronic disease? For example, climbing the career ladder, seeing friends, relationships, etc. How have you dealt with these challenges?
Learning to live with a chronic illness is hard and can be very lonely. You really learn who your true friends are. I am so fortunate to have a very loving and strong support team, but it hasn't always been this way. This past year I was sicker than I've ever been and it became very isolating. I had to go on disability at school, quit my job and scale way back on my social life. While this was incredibly painful and hard I learned a lot, especially from the endo sister community on Instagram. I learned about the spoon theory, diet, acupuncture and how to maintain positivity. Even with these skills it’s still a challenge. One issue I’ve been facing recently is the idea that people think I am ‘cured’ now. Just because I can get out of bed and function relatively normally doesn’t mean I am not in daily pain and needing to do a lot of self-care. I’ve had to learn to not take it personally, communicate my needs more directly and focus on myself and my goals.
You also suffer from chronic migraines – which is linked to endometriosis and hormone imbalance. For those who haven’t listened to the podcast yet, can you explain the link here and your experience with migraines? What do you do/use to manage these as best you can – is there any medication/food/lifestyle changes you have made?
Chronic migraines are exhausting and it has taken me years to figure out how to manage them. Chronic migraines are often caused by a hormonal imbalance. Even women without endo may get a few migraines around their period as their hormone levels change. I have tried every migraine treatment under the sun with the help of my neurologist. Everything from low dose of antidepressants to 36 injections of botox. My neurologist and my OBGYN have even worked together to change my medication to try and find me relief. Last year my migraines got so bad that I couldn't go three weeks without being in urgent care seeking relief. My endo was also so bad that I was on the pill and had the Mirena IUD, which turns out isn’t good for you at all! I became drug resistant to my oral prescriptions and could only get my pain down by injections and IV medications. In the spring I made the decision to have my mirena taken out, it was doing me more harm than good. After that I saw an acupuncturist that specialised in endo and hormones. After months of treatment I went off the pill. A few weeks after that my migraines went down by 80%! I was shocked! I still have triggers but I am able to manage them so much better. Hormone regulation will look different for everyone and it may take years of exploration to find out what work for you.
Running a podcast, being active on social media and holding down a job takes time and effort! How do you manage a busy lifestyle and staying on top of these with a chronic illness?
It's hard and a lot of things slip through the cracks if I am being perfectly honest. I only work part time, which helps, but the self-care I do can also take a lot out of me. I’ve recently implemented some extra management strategies. I now carry my to do list around with me so I can add things to it as soon as I think of it, this has helped a lot! I’ve started meditating more, which helps me manage my time better. I set alarms on my phone for everything! I have also stopped sleeping in. I go to bed early and I get up early and it helps me stay focused. I don’t eat sugar, I exercise as much as I am able and I drink a lot of water. I promise it makes a world of difference!
What keeps you positive, strong and happy? What are your favourite ways to take care of yourself?
Self-care is a constantly evolving art in my opinion. I listen to a lot of audiobooks and podcasts on self-care, self-love and positivity. I surround myself with people who love and believe in me. I also let myself grieve when I need to. If I am sad or overwhelmed I let myself cry and process and then I start problem solving, it’s a very simple way to love myself and validate my experiences. I went through a time where I tried to just ‘suck it up’ and it left me feeling empty and depressed. Being chronically ill certainly affects my mental health and I try to use each day as a learning experience to love and believe in myself. A huge part of this has been learning to ask for help not just for physical issues but for emotional ones as well. Cats also help too :)