What are your endometriosis symptoms like? My main symptoms were pain with sex and excruciating cramping with periods and ovulation. I also had bowel pains and constipation associated with IBS which was causing more inflammatory pain. In turn it has caused a lot of stress on my pelvic floor and as a result I have low back and hip pain and sciatica.
What was your journey to diagnosis like? I was diagnosed fairly early, I started having symptoms at 14 and was diagnosed at 17. I thought my symptoms were normal as I had always heard sex could be painful and periods were painful and that was normal. As I got a little older I realized that this was not normal and decided to talk to my gynecologist. I had a gynecologist due to a cyst on my cervix and I was completely dismissed and told la laparoscopic surgery was unnecessary and their was no reason to look into it. I went to a different gynecologist for a second opinion and he preformed a laparoscopy. He diagnosed and ablated uterosacral endometriosis.
What has your experience with treatment for endometriosis been? Treatment has been ongoing and more focused on quality of living as there is no cure. First numerous types of birth controls were used to easy symptoms when those failed or caused bad side effects Orillissa was tried to put my body in menopause to ease symptoms of pain. Then we tried excision surgery and an insertion of an IUD after over ten years and one pregnancy and pain getting significantly worse. Now with the IUD, excision, and diet and exercise we finally have the pain to a manageable level.
How does endometriosis affect your day-to-day life? For 2 years I could not get off my couch to function let alone work. I lived everyday on high doses of painkillers and was either left extremely high or still in pain or both. At first diagnosis my endometriosis was not impacting a lot of my day to day, only short term aspects of it. I lost jobs eventually due to missed days because of pain. I became severely depressed as I could no longer socialize make plans exercise or even function as a parent of a toddler. I ate very poorly and sometimes not at all because the effort required to feed myself was exhausting and painful. Showering and hygiene became non existent. My marriage suffered greatly as my husband took on the brunt of housework working taking care of me and our son and the lack of sex drive. There was no financial help, my doctor refused to fill out paperwork for disability stating that I was too well. Eventually I had excision and after a year of hard work and physical and mental therapy I am able to regain my life. I still have pain and my physical therapy will be forever to combat the damage endometriosis and surgery has caused on my muscles and organs.
How does endometriosis affect your emotional well-being? Depression and anxiety have been hard. Living in chronic pain and not being able to parent, socialize, work, or take care of myself at times has been extremely difficult. Some days I thought my husband and son would be better off without me and I was an extreme burden on both of them. Watching from the sidelines and missing out on things with my son was terrifying. My husband became very resentful as I withdrew from everyone and was very difficult to deal with. Having daily panic attacks exhaustion and pain. It has taken an immense amount of work to undo that damage on my mental health with therapy and medication.
How has endometriosis shaped turning points in your life up until now and looking toward the future? My husband had a vasectomy after our child due to the fact I had a few miscarriages. Our decision in not having more kids was due to the fact my body got a lot worse after having my son and the mental stress of having miscarriages due to my endometriosis. I have lost out on jobs and been fired for starting new medications which cause brain fog and being in pain which causes missed days. So having a job is almost impossible. I now work part time from home. I have been able to follow a career path I love but can not be employed outside of myself due to the unpredictability of my illness.
How have you found hope and support in your endometriosis journey? I found support from therapists, some incredible doctors, my church, and god when times got really tough. My husband has been a blessing and I dont know any other man who could endure living the stresses he has due to my mental and physical state. My family and his have always been great at taking on my son and helping out when I’m having bad days, weeks, or months.
What do you think healthcare for endometriosis in Canada should look like? The wait times are long the doctors have too many patients and not enough time to address all concerns. The amount of endometriosis specialists is so limited. And mental health of people with chronic pain is severely neglected. We should not have to push so hard to be heard and understood. Pain meds are greatly overprescribed when excision and self care should be a more standard treatment goal.
What do you think it is important for people to know about the experience of having endometriosis in Canada? Keep pushing and advocate for yourself. It takes time but unpeeling all the layers of your illness and body with multiple doctors will help. Research on your own. GPs do not have up to date information on endometriosis and ask to be referred to an endometriosis specialist before letting another doctor open you up. They may not even know what they are looking at.