I’ve struggled with period pain since I was 16. Frequently I would need to skip a couple of days from school, then work. Working with the pain became more troublesome. I found it awkward having to share with my bosses why I needed so many sick days. Many of them I don’t think believed me. This made me very selective with jobs. I would seek out ones that allowed me to work from home sometimes. My profession is in the film industry, so that made it difficult. There were many days I’d have to put in 12-15 hrs on day 1 or 2 of my period. The best periods were ones that landed on a weekend so that I didn’t have to burn out my body from working through intense pain. Some of my biggest worries were coming across as lazy or unmotivated at work too. Planning everything about my life revolved around my period. This would be especially annoying since my period had an inconsistent schedule. I tried every single birth control pill, which made me throw up and then eventually get a blood clot. I went to physio therapy, nutritionists, Chinese medicine doctors, dietitians and physical trainers. Nothing worked. At a women’s clinic the doctors mentioned it could be PCOS, or endometriosis. There was something that always made me think it was endo. During my final year of college I found an endometriosis specialist who believed me and wanted to perform a laparoscopy. But soon after I developed an undiagnosed virus that left me unable to eat for three months without getting sick. I had elevated liver enzymes and immense abdominal pain. This again took my down a dark rabbit hole of doctors not taking my symptoms seriously and kept checking to see if it was a STD. Swab get swab. Bloodwork after bloodwork they eventually said “we could take a biopsy of your liver, which would be incredibly painful and likely not provide much info, or we accept that there are unknown viruses.” My endometriosis surgeon said I was too weak to undergo the laparoscopy and would have to wait a couple of years.
I went to a Chinese medicine doctor who gave me teas to drink twice a day. This eventually got me feeling better but gave me horrible acne. This was apparently the teas showing they were working. Then I had to go on accutane… In my early twenties when friends were worried about what to drink to have the most fun that night, I’d worry about what was going into my body and how it would affect me. I know my friends would think I was crazy for the amount of supplements I consumed daily and how I had to take them at a specific time to ensure they would provide the most benefit. The pain became a part of me. I got used to the health anxiety, panic attacks, work stress, brain fog, headaches, back aches, and leg pains. When my boyfriend moved in with me he noticed this wasn’t normal. He urged I seek out a specialist again. Although my boyfriend never complained and always took such good care of me every month, I didn’t want to be a burden in the relationship, so I researched endo surgeons and got a referral from my doctor. It took two years to get an appointment. The year I was supposed to see the surgeon my boyfriend suddenly died from a brain tumour we didn’t know he had. I was so devastated that I couldn’t return to work. I couldn’t go to that endo appointment. I was consumed by grief. And when my period came all I could think about was how he would always take care of me. Having to go through the months alone felt so scary. I had deferred the endo specialist appointment for a year later and went. I told them I want the surgery and they said “okay” —no questions asked. I filled out the paperwork and awaited for the call. 6 months after that I had the surgery. I can’t begin to tell you how hard it was to walk into a hospital with all of those memories of my boyfriend dying. He was so brave though and I wanted to show him I could be brave too. I knew he would be watching over me. The surgery ended up being four and a half hours long. I had stage four deep infiltrated endometriosis. The recovery was the second hardest thing I’ve had to go through, and I put that up with making the decision to take my boyfriend off of life support and hold him as he died. It was incredibly painful and emotionally taxing. I never expected to be immobile for three weeks. Needing help to shower or get dressed. I was vomiting from the pain and constantly crying. When people would check in I would say “getting better everyday” because I didn’t want to come across as weak. I thought that I must not be as strong as other women because so many go through painful childbirth, unexpected c-sections and various other abdominal surgeries and are back on their feet more quickly. I was so ashamed of my body for being slow. I’m now 8 weeks post op and I just went for my check up. I spent two hours waiting for my appointment, spent $17 in parking and it was barely a two minute meeting. I didn’t get to see my surgeon or look at pictures from the surgery like I was promised. But instead this new doctor said I need to go on birth control. When I mentioned again that it makes me sick she said “your loss”. I left that appointment in tears feeling defeated. I always knew I had endometriosis but now that I have an official diagnosis everything feels more hopeless.
How long did it take for you to receive a diagnosis? How old were you when symptoms started? How old were you when you received a diagnosis?
17 years
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Painful periods. Have gotten more manageable with time or my tolerance has gone up.
What was your experience with healthcare professionals during the diagnosis process? Were there misdiagnoses or misunderstandings? Did you experience any dismissive attitudes regarding your symptoms?
Mostly dismissive
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Always. I never want to come across as weak even though I know living with endo only means your a baddy.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I feel more supported now but still wish I had more.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Still searching.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work, planning trips or get togethers. Feeling like a burden in relationships.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Going vegan made me even more aware of food I was consuming. Drinking lots of water. Taking supplements. Daily movements and long extra hot baths. Really good pain medication.
What do you wish you knew earlier in your journey?
My pain is real. I am worthy of care.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
YES. so much validation. Great tips. And more resourceful than my doctors. Thank you so much for bringing us together. You’re an amazing inspiration.
Are there any misconceptions about endometriosis that you've encountered?
Mind over matter bs.
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Advocate for yourself. Seek others who are on a similar journey. I believe you and your pain is real.
