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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?
It took me 5 years to get diagnosed. I was 14 when my symptoms started. I was 19 when I was diagnosed with a laparoscopic surgery for stage 4 endometriosis and endosalpingiosis (tissue on my fallopian tubes as well)
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My initial symptoms were pain in my abdomen and pelvis while off my cycle. I always had a very heavy flow growing up, and tons of pain came with that. My pain has gotten worse over time, more frequent flare ups and the pain increased. My current symptoms are severe abdominal and pelvic pain, back pain, leg pain, headaches, fatigue, pain during/after sex.
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?
My experience with the healthcare system was very poor. Constantly ignored with my pain and concerns. The hospital would send me away and tell me “it’s just period pain, take Tylenol”. I was initially diagnosed with appendicitis and rushed to the hospital. Hours later of testing I was sent home. Almost my entire experience of getting diagnosed I was treated with dismissive attitudes.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
My pain affects my everyday life. I constantly worry when I leave the house if I’m going to have a flare up. I get depressed and anxious when I’m in pain and can’t do anything but lay there. I have experienced challenges communicating with others. When I tell people I have chronic pain and it’s disabling they don’t understand because I look like a healthy person on the outside. They have seen me out and about. But those are the days when my pain is bearable.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My support system couldn’t be better. My partner, family and friends all understand and have seen me go through my diagnosis.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
My medical care now is mediocre. I have a great family doctor. I’m still searching for an endo specialist to get better answers and understanding.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Yes. I can’t work due to my diagnosis. I’ve lost jobs for calling in sick too many times. I’m not reliable to work a schedule due to my pain and how random it can be.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
My heating pad is the only thing I have found helpful while in pain. Keeping an anti-inflammatory diet helps to reduce inflammation from foods.
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?
Any pain medication has not been effective. I’ve been prescribed many different medications and none of them have helped.
What do you wish you knew earlier in your journey?
I wish I knew what endometriosis was. I feel like if I knew I wouldn’t have been dismissed from doctors and my diagnosis journey wouldn’t have been so long.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
The endo community has helped me so much. I don’t feel alone in my pain and symptoms. I have learned so much throughout the community and feel safe with it.
Are there any misconceptions about endometriosis that you've encountered?
That it fully goes away after a laparoscopic surgery.
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?
My advice would be to keep your head up! Listen to your body and take care of yourself. Join the endo community for questions, advice and someone to help keep you up when you are down. You are not alone, endo warrior ♡