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?
About 4 years the doctor who perform my surgery said you are very lucky because it can take up to ten years for a diagnosed and when she told me that I had stage 4 endo I had no clue what she was talking about I have never heard of it before. This was 2019.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Pelvic pain
Heavy bleeding
Numbness in legs because of the pain
Painful sex
Nausea
Painful bladder and bowels
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?
I went to two different doctors being finding the right one who did my first surgery. The first two kept telling us there was no cure but the best thing to do is either have a full hysterectomy or go on the pill, at the time when I first started to have bad heavy periods I was only 15 years old but then I found Dr Gay and she helped me navigate through it all then help me find the endometriosis clinic in Hamilton and that was the best thing that could happen to me!
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
My quality of life has been such a rollercoaster. When treatments stop working or it’s time for another surgery it can be terrible.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
You learn who is your support system pretty quickly and for your mental health you learn to disconnect to the ones that aren’t there for the proper support. The friends and family I do have are great and some what understanding just always willing to learn more.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Good, I do trust them.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work can be tough but I manage to learn to work through the flares
Relationships are also tough especially when the guy you are talking to are talking about the future and what he wants and it’s just stressful and then the pain that comes with sex isn’t enjoyable so you need to find someone that is good with communication which can also be hard.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Currently for me, it’s moving my body by walking and pilates, pelvic floor therapy, osteopath, lymphatic massages, different types of vitamins and thc for the pain
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
LUPRON. Just like most treatment it’s only temporary that brings on long term side effects.
What do you wish you knew earlier in your journey?
Listen to your body and your gut for what is best for you.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Absolutely, especially when I never heard of endo before I was diagnosed so same with many of friends and family so it was super hard at first to talk to anyone about this so the community was very helpful especially mentally.
Are there any misconceptions about endometriosis that you've encountered?
We are lazy
We are faking since we usually always look good
Just a bad period so you can only be or feel sick when you have your period
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?
Seek for the proper medical care and try not to settle just for any doctor or any kind of treatment. Find a good support system online and off !
