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When I was 16, thats about when I started experiencing endo symptoms. At the time I didn't know what endo was, just that I was extremely painful when my period came around. I was always just told "pain during periods is normal", and I have always had a high pain tolerance so I figured it was fine and I was being dramatic. Fast forward to when I turned 20, symptoms got worse. I started being more sexually active around this time, and it was somewhat painful, but again brushed it off. I got the IUD sometime in that year for my period since it was recommended by my gyn, and still had no idea what endo was. About 6 mo later I went back to my gyn multiple times for pain on my lower R and L sides which got increasingly worse daily. I had about 4 ultrasounds within 3 months, plus 2 at ER's which both showed a "cyst" on my R ovary. I then had a meeting with my doctor about surgery, and she was hesitant. I dropped it after that appt, but reached out a few weeks later as the pain got worse. I was still working at this time, despite the pain I was in. I finally called my doctor and pushed for my first surgery which found endo on my L ovary. After my surgery I was virtually "pain free" for about 6 months until the pain came back stronger than ever. Through a friend recommendation I found a doctor who soecializes in endo, and they encouraged me to get a second surgery for per my surgery notes they did not believe my other dr was thorough enough. At first I declined, but later went back and agreed. I am thankful for my second surgery coming this April. In between all of this I have had GI issues and ER visits where I was brushed off and told "its normal" and since I was still working that "its not that bad". I knew something was wrong. I'm just thankful for the doctors I have now and even though I got 2 surgeries in the next few months I'm hoping it will lead me to be more functional.
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?
Extremely dismissive to the point I do not go to ER's anymore. I can't trust them to believe and provide me the care I'm seeking. If anything I feel like a bother to them.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
My QOL is poor, I'm unable to hang with friends often, or have sex with my partner. I'm working on getting mobility aids to help me move a little better though.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
Kind of. I feel like a bother, and I wish I had more people/ friends around.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Much better as stated previously
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work. Its been difficult and I have had to limit myself with what I do
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes and no. I feel sometimes out of place, like I'm too young to be experiencing this.
