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?
18 when pelvic pain began, 24 when referred to pelvic floor physical therapy and not diagnosed with endometriosis until age 26
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My pelvic pain was getting worse, I couldn't stand up straight & would cry over cramps, bleeding became heavier, sharp hip pains, pain with bowel movements, etc. I'm 4 weeks out from my lap and I think it's too soon to really tell.
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 got dismissed a lot and especially with my trauma history & car crash- doctors would tell me I'm just depressed/ anxious. I was told "everyone gets cramps", "take Tylenol". Even an endo specialist was really disrespectful making inappropriate jokes and was not gentle during my exam which was very triggering.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I often feel misunderstood by people and it makes me want to keep to myself sometimes. People don't always understand why I can go out when I was fine the other day. It can get really hard to take care of yourself too. A lot of my energy is spent preparing for the next wave of pain (often on my period).
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I'm thankful to have a great partner- he's taken me to so many appointments, let me cry and always has my heating pad or Obi ready to go!
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I finally found a good specialist who I trust! It took several to find her.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work- I am a videographer and I cannot run around with a camera when my endo starts flaring.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Pelvic floor PT helps, suppositories, heating pads. Also addressing other areas of pain to help me as a whole.
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?
Trying to "push through the pain" is NOT effective despite what doctors have said lol.
What do you wish you knew earlier in your journey?
I wish I knew it's not normal to have painful cramps, pain with tampons, pain with bowel movements. The more normalized it is- the more I gaslit myself and didn't get help. I missed out on a lot.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I love the endo community! I'm a part of your Facebook page as well as through my TikTok account. Both our communities helped me to prepare me for my first lap and gave me so many tips :)
Are there any misconceptions about endometriosis that you've encountered?
Probably that birth control will "fix it".
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?
I just want them to know they're valid. There's so many people like them. They're not alone. The idea of pelvic physical therapy can be really scary but it really helps so much.