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?
23 when received a diagnosis. It didn’t take long from the point I started having severe symptoms. However, I believe I’ve had these issues for a long time due to heavy, painful periods. I also think my hormone imbalance has played a role in my depression and anxiety for years. I would believe I’ve had these issues since I was 17 or 18.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Heavy, painful periods. Extreme moodiness. Heightened anxiety and depression on and around periods. Now, it’s chronic fatigue, pain at any time of the month.. not just around my periods, bloating, hormonal acne that has worsened over the years (it started when I was 20), certain food intolerances that never had an issue with before (as far as I know).
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?
There wasn’t any misdiagnoses or misunderstandings, however, there were dismissive attitudes. As if I should feel normal and okay with this diagnosis. As if I should feel completely okay that my life has changed forever.
How do your symptoms/pain affect your overall well-being? Have you experienced any challenges in communicating your struggles to others?
It often makes me cancel plans, which has affected my social life. I often get extremely depressed due to my symptoms. I feel like a fraud when talking about the diagnosis, like I shouldn’t make a deal about it.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I do feel supported by everyone in my life.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I am still searching for a medical professional I trust. Specifically, someone I trust to do surgery on me.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Everything. I have been unemployed for a few months now, I am scared that I won’t be reliable due to my pain and chronic fatigue. It has affected my social life, I do not have friends really, I have my husband. He has been supportive but I often feel like a burden. I also used to be active within nature; taking walks, hikes, etc.. but I haven’t been for months.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped alleviate symptoms?
I use castor oil on my abdomen/in my bellybutton, I drink spearmint tea, I take probiotics, I use heating pads, I cut out gluten and slowly cutting out dairy, I take warm baths very often.
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 alleviate symptoms?
There hasn’t been anything that didn’t help some.
What do you wish you knew earlier in your journey?
I wish I knew that there are so many other women who also deal with this.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes, it has been extremely comforting and supportive.
Are there any misconceptions about endometriosis that you've encountered?
I have not.
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?
Just to know that they are not alone and that their pain and exhaustion are valid.