What are your endometriosis symptoms like?
I have heavy bleeding that can go up to 10 days, there are months where I have my period twice in the month. I feel exhausted, I have sharp knife- like pain in my abdomen and pelvic area. I also become bloated and look like I am 6 months pregnant.
What was your journey to diagnosis like?
My name is Joana, I live in Regina, since 2012. This is my story about Endo, Adeno and Fibroids. I always used to have sharp pain since I can remember having my periods. I used to feel dizzy and fainted every month when I had my menstruation. I thought it was normal, this is what I was told when I was younger in my country of origin-Mauritius. In 2015, after having my first child, I started to have abdominal pain, back pain, leg pain and I was diagnosed with IBS and Fibromyalgia. I changed my diet, exercise everyday and I was also on several medications for Fibromyalgia for nearly 3 years and the medications would do nothing except from making me miserable, suicidal and gain weight.
In December 2016, I had my little girl and my pregnancy was very difficult, I had early labor and was put on steroid injection. Fortunately, I had her at 37 weeks. But after my second pregnancy, the pain was unbearable and I had blood in my stool. I went to see my doctor again and he said it was IBD after sending my stool for testing. I went to the ER many many times, I have doctors telling me that I was clearly healthy after doing the basic blood panel test and that I should just go and see my family doctor; I have doctor also telling me if I was under stress as if it was in my head. At this point, I decided to contact the Women’s Health Clinic to get a referral to a gynecologists’. I waited several months to see one and after several ultrasounds both before and after my menstruation and ovulation, she told me she suspect I have Adenomyosis and Endo as well as they saw some cysts and Fibroids, she told me the only treatment for Adenomyosis is a hysterectomy and she can put a Nuvaring (Mirena) to help with the pain and will send a referral for me to see a specialist.
I waited nearly 14 months to see a surgeon and at our first appointment, after talking about my symptoms and ultrasounds, he said the best course of action is an hysterectomy and if I agree, he will send my papers for a hysterectomy at the hospital and he also told me, it’s going to take time because of COVID. Nearly 3 years since I saw the first gynecologists’ and I am still waiting to have the surgery. It took me 4 years to get a diagnosis and 2 years to be put on the list for an hysterectomy and I am still waiting and my surgery might happen this year if I am lucky.
The past 6 years have been the most difficult time of my life, my mental health has been greatly affected, living with chronic pain on a daily basis is unbearable and not being able to do things I wish I could do with my kids makes me sad, angry and I feel miserable. There has been many many days when all I wanted was to go to sleep and not wake up but my kids and family are my one constant support/reason and they give me unconditional love that make me want to live for them. My career and work life have been greatly affected, I don’t have the same courage as before, I am unable to do everything I used to be able to do. I function at maybe 50% of my capacity, I used to work 2 to 3 jobs, always having strength to do everything I wanted but now caring for my kids is a real struggle. All I want and need is a life free of pain and I want to believe that after the surgery it will happen, I will see the light at the end of the tunnel.
What has your experience with treatment for endometriosis been?
When I was first diagnosed, I had to use the Nuvaring and unfortunately it didn’t help and in September, I started on Visanne until I can get my hysterectomy and it does help a bit with the pain but I feel tired, sluggish and continue to have spotting everyday. I also do not have any sexual attraction and relationship since I have been on Visanne.