I went around different doctors for YEARS trying to solve my chronic bloat and constipation after 1,000 of dollars in test and advocating for myself, doing the research and asking for ultrasound AFTER ULTRASOUND, and driving as far at 3 hours for a new doctor and appointment they found endo and adeno all over, so much so my uterus has tipped backwards causing an obstruction on my bowel, I have excision surgery coming up in february and my life has been flipped upside down.
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?
Cosntipation, heavy periods and back pain since my first cycle (14) took 2 years of constant appts and about 6 different doctors for a diagnosis. 23 for diagnosis, only received because I went did my own research, I was my own advocate, and decided on my own to see a specialist without a proper refferral after my primary(s) said I was fine
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Back pain, heavy period, yeaaarrrsss of consipation, progressed to its worst, have had chronic endo belly for 10 months now. life hindering mid back pain at this point
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?
Awful. and all of the above
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I completely lost myself, my confidence, relationships. it’s hard to put it into words and a big heart break is others not understanding what it’s like
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My circle has got smaller, but those in my circle are what has given me strength to move forward and make me excited for my healing journey and a new version of me
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Great! I love my new doctor and was such a relief to feel heard
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
All of the above
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Heating pad, cbd, sauna, change in exercise routine, diet
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?
Typical pharmacy meds, BIRTH CONTROL
What do you wish you knew earlier in your journey?
What was going on, my symptoms are not normal, I don’t deserve this and it is not my fault
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes, it was support and acknowledgment at a time when doctors still didn’t hear me
Are there any misconceptions about endometriosis that you've encountered?
What it feels like, the mental struggle
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?
Advocate for yourself, if you believe go straight to a specialist and see, keep pushing, don’t stop until proper treatment ( and BC is not proper treatment)