What are your endometriosis symptoms like?
Heavy flow during menstruation, severe abdominal pain, felt as though my intestines were being twisted which lead me to vomit and tremble in pain. Low energy, bloating and occasional pain during intercourse.
What was your journey to diagnosis like?
My journey started after giving birth to my third child back in 2008, I noticed a change in my menstrual cycle. My cycles were heavier, irregular and often the pain was severe. My OBGYN suggested a D&C to help with the heavy flow which was making me anemic. I agreed to the procedure in 2010. For one year I had relief of the heavy flow but then I started with the heavy flow again and the pain was more severe this time. I would walk hunched over and guarding my abdomen, felt nauseous from the pain. At times the pain was so debilitating that I could not make it out of bed and had to miss work.
A vaginal ultrasound was done, a cyst on my left ovary was discovered. My OBGYN suggested Endometrial ablation (destroy the lining of uterus) and did not believe the cyst needed to be removed as it was a small size. The ablation was a solution to my heavy flow and hopefully no more pain as I would no longer be menstruating. I saw the light at the end of the tunnel. I agreed to the procedure in 2012. The procedure resulted in no more bleeding but I still had all other symptoms of menstruation ( tender breast, back pain, tired) more manageable symptoms though. I had relief for about a few years until the pain returned with a vengeance. The cyst on my left ovary had now grown to the size of an orange. Was removed via laparoscopic in 2018 and again I was pain free for about a year. Was not able to get a follow up appointment after my surgery because my OBGYN seemed to be booked and after several attempts to see him, I gave up. Pain returned, often leading me in the ER department for pain management. After several visits to the ER department for pain management, another vaginal ultrasound was performed, it revealed a cyst on my left ovary again. I requested at this time to have my left ovary removed. An emergency laparoscopic surgery by the on call OBGYN was performed in 2019.
It was at this time where this OBGYN informed me that I had Endometriosis. She stated that it had been discovered by my regular OBGYN back in 2018 during my previous surgery. This was the first time I was learning of my Endometriosis diagnosis. My OBGYN stated that she ‘cleaned me up’ but could not remove my left ovary as there was too much scar tissue attached to my bowel and a risk of perforating my bowel was too high. I was referred to the Endometriosis clinic at BC Women’s Hospital and Health Centre. In the mean time I was placed on hormone treatment for my endometriosis. The hormone medication did not agree with me. Made me sick and caused me severe cramps. A different type of hormone treatment was prescribed but again my body reacted negatively to it. Unfortunately, there was a 6 months waiting period before I can see the Endometriosis specialist.
I decided to accept the pain for the rest of my fertile years. I had lost hope that anyone could help me. I had anxiety every month not knowing how severe the pain would be each month. Wondering if this month I would end up in the ER department or if I would be able to make it to work. I finally was able to have my consult at the Endometriosis clinic in October of 2020. A vaginal ultrasound was done. The doctor diagnosed me with stage 4 Endometriosis and suggested a hysterectomy (remove the uterus). She was so knowledgeable in this area and so passionate about helping me that I now felt hope for the first time in a long time. I was placed on hormone treatment again and placed on a wait list for my hysterectomy. I waited 10 months until my surgery was possible. During these 10 months I suffered severe abdominal pain during my menstrual period, I started to spot again, was missing work due to the pain, ended up back in emerge for pain management, was depressed, anxious, and at one point suicidal. Felt like there was no end to this torture I had to face every month.
The last hope I had was this hysterectomy surgery I was on the wait list for. Was my last hope. Finally my prayers were answered and I had my surgery by the Endometriosis clinic doctor. She removed my uterus, cervix and my left ovary via laparoscopic. My surgery was performed in August of 2021. It took me two months to recover and return back to my full time job. I am learning to live life again without pain. Its been four months now since my surgery and I am just now learning to accept this pain free life as my norm. It has been a Long 13 yrs journey of pain, surgeries, pain meds, hormone therapy, depression, anxiety but its over now. Thanks to the brilliant doctor at the Endometriosis clinic and her OR staff, I am now living a pain free life. I have quality of life again. I will forever be thankful for this resource (Endometriosis clinic) and its knowledgeable specialists. Passionate about helping their suffering patients. I hope my story can give hope to another suffering woman like I used to be . Hope you can get the help I received at one of these clinics. It changed my life forever.
What has your experience with treatment for endometriosis been?
Endometriosis clinic where specialists that are knowledgeable about this diagnosis can truly help you.
How does endometriosis affect your day-to-day life?
Endometriosis lead me to years of suffering . Lead me to a life of depression, anxiety, suicidal thoughts and many trips to the already over crowded and busy emergency department. Made me miss work a lot, robbed me of spending quality time with my kids because the pain had debilitated me from being active with my kids, the pain made me depressed and anxious. All these symptoms took me away from my love ones and my hobbies.
How does endometriosis affect your emotional well-being?
Endometriosis lead me to a dark place. I was depressed, saw no ending to this suffering. Had forgotten what life before endometriosis was like. What a pain free life felt like. Lead me to anxiety. Never knowing how bad the pain would be each month. Whether or not I would make it to work this month or end up in the emerge department. Suicidal thoughts started entering my mind as I started to see no ending to this pain.
How have you found hope and support in your endometriosis journey?
Only support I sadly found was towards the end of my journey. The Endometriosis clinic was my saving grace.
What do you think healthcare for endometriosis in Canada should look like?
I think that there should be more Endometriosis clinics where women can get the help they need early in their journey. No one should have to suffer and be lead to suicidal thoughts because they feel hopeless with this condition. More clinics with passionate specialists in this field that can help and bring hope to those suffering from Endometriosis.