What are your endometriosis symptoms like? 

While waiting for one of my lap procedures in my early 20s I was sitting next to another women in her mid 40s. We got to speaking about why we were there. I told her I had endo and was going in for my third procedure because the pain was so debilitating. She turned to me and told me she also had endo and wish someone told her this when she was young. The pain we feel can be worse than childbirth. It is real and should be taken as seriously as. She was fortunate to have two kids and said the pain from endo was worse than both her childbirth and contraction experiences. The pain we feel throughout the month, not just during our periods is comparable to contractions with no finish line in sight. This is just one symptom, however thought it maybe helpful for someone else to hear this comparison.

What was your journey to diagnosis like? 

I got my first period young. I had just turned 11 years old and the pain I felt on my first period was pretty intense. I did not know what to expect. I was told it can hurt and it may take a few periods for it to have some sort of regularity. With each passing year and period it would consistently get worse and I had heavy bleeding with periods lasting 8 days. When I was 15 years old I was referred to a gynecologist. Unfortunately the gynecologist. was dismissive of my symptoms saying it was normal, I was too young for it to be anything else and some women just have bad periods.

His solution was birth control and pain medication. Hesitant my mom agreed as she knew my pain was unbearable and did not know how else to help me. After a year of birth control with no real improvement the gynecologist. agreed to do an exploratory lap. He was in and out in record time claiming there was no findings. Left with no answers I was told again you just have a bad period and will have to deal with the pain through birth control and narcotics. It took me 5 years, multiple referrals to finally convince another gynecologist to do a lap. I was convinced that it had to be something, I am not crazy because there was no way this was normal.

Unfortunately the doctor that did the procedure was not highly skilled in endo removal so when she went in she confirmed the endo was there, stage 4 (everywhere). She was not skilled to remove from some areas and therefore left it in. I was relieved to know I finally had a diagnosis but also frustrated that they could not get it all. Fortunately this procedure did provide me temporary partial relief however now I had to find someone who was skilled to remove all my endo. At this point I had another referral to a more specialized endo clinic in Ontario and I was also seeking options out of country.

The day my private health insurance provider denied my request to have this procedure outside of Canada I finally got my appointment locally. This physician was wonderful. He understood my situation and agreed another procedure was necessary (2 years after my last procedure). During this procedure he also performed a pre-sacral neurectomy to basically kill some of the nerve endings to my abdominal area so that if I have pain and endo come back hopefully it won’t be as bad. This procedure did provide a lot of relief for me. Along with an IUD I would consider myself somewhat stable until I unfortunately had pre cancer cells identified on my cervix. The IUD had to come out for a period of time and a LEEP procedure was performed. From this point onwards I noticed my pain getting worse with each cycle. After multiple attempts with various combinations of medications including lupron and adbac therapy the endo clinic specialist agreed another lap procedure may be helpful and this time excision technique would also be used. Within 6 years I had three procedures because of lack of physician skill and technique that is now available today. This is a high level summary of my diagnosis experience and does not include all the other specialties, consults, procedures and therapies attempted. This also does not include my current journey and challenges with endo.

What has your experience with treatment for endometriosis been? 

Access to treatment can be very difficult. Do your research in your area to find local expertise. Hormonal treatments were never helpful for me as they just masked the problem and eventually they would show their face with a vengeance. Surgical interventions were most effective but obviously come with their own risks and side effects. Combination of naturopathic and medical interventions have been most successful for my case. Concerns around treatment: treatment is currently focused on symptoms and not root cause or solutions. This shift is needed in order for real change and improvement for those suffering.

How does endometriosis affect your day-to-day life? 

Fatigue is the most constant challenge faced on the daily. Pain and unpredictable pain is equally challenging as you do not have to be on your period to experience this. Both of these affect one’s abilities in their work, school and personal life. When there is a good day optimizing that day is important to get things done but be sure not to over do it because in my case I will then pay for it the next day.

How does endometriosis affect your emotional well-being? 

Gas lighting by the medical profession has been the most challenging part for me from a mental perspective. In addition sleep, anxiety and depression are a challenge with endo itself but also with some of the medications you are provided. Finding a balance and strong support system is important to managing the mental health elements with endo.

How has endometriosis shaped turning points in your life up until now and looking toward the future? 

I was told at a young age that having children may be a challenge and therefore never made it a necessity in my life. My career and education was heavily shifted by my endo as well. Navigating this is very case specific and continues to be a challenge. I find you have to take it day by day and face each challenge or decision point as they come. Planning is great but adaptability with compassion for your self is equally as important.

How have you found hope and support in your endometriosis journey? 

Loved ones have been very supportive and integral to my journey. Friends with endo and online support groups have been very important as well. Sharing information and experiences with others has helped validate and confirm you are not alone through this and it is real problem for women that deserves attention.

What do you think healthcare for endometriosis in Canada should look like? 

Multidisciplinary team approach that includes natural and homeopathic elements in addition to traditional medicine! Has to focus on more than just symptom management. Must look at root cause and solutions.

What do you think it is important for people to know about the experience of having endometriosis in Canada? 

It is real. It is painful. You are not alone. More support and research is required in Canada to help women live with and overcome this condition. The stats only reflect 1 in 10 women diagnosed and we know how many people are fighting for their diagnosis or are being dismissed. The number of women affected by endo is much higher than reported.