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?
I was extremely young when symptoms started, much before my first period which was when I was 11! I was told about endometriosis at 15 when I visited the ER 2 weeks of extreme pain that caused me not to be able to eat. I perused that lead for nearly two years before having my first surgery, which was done by a surgeon who should not have been performing a diagnostic lap. This doctor said I didn’t not have endometriosis but had redness, adhesions and swelling everywhere. I went down different avenues, which mostly came up inconclusive before seeking help from an endometriosis specialist in the city where I received my proper diagnosis at 20.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
I do have suspected adenomyosis so some of these symptoms could cross over. Extremely painful periods, heavy bleeding, lots of spotting, pain when going to the bathroom, bloating, food intolerances, nausea, throwing up, pain throughout the month. There has been both progression and resolve with symptoms. I feel at a better place now with an IUD which has stopped my bleeding and has decreased the amount of randomness in flare ups.
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?
Some healthcare providers have been honest and great, but most very dismissive and uninformed. I received misdiagnosis many times.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I used to feel bad when cancelling plans, for the weight I have gained etc but now I own it. I don’t have fomo when I can’t attend things because I am doing what I need for my body to recover and it puts less stress on me. You are always going to find that some people will never understand, but that’s on them, not you.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
The people closest to me have supported me, learned about my condition and help when they can.That isn’t to say that there have been people or situations where this wasn’t the case.
What do you wish you knew earlier in your journey?
That you 100% should be seeing an endometriosis specialist (which there aren’t many) WITH a multidisciplinary team! (Physio, uro etc)
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Absolutely, I took a bit of a break from sharing on @endo.metri.osis but I decided to restart sharing my whole story with a new account name @endo.keana so I could share more than just my endo journey, information and resources.