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 got my period at 9 years old, that's when the pain started... now at 19 it's one of the many diagnosed problems with my uterus/intestines
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Initially I had bloodcloths bigger than "normal", which turned into gold ball and occasionally jelly fish sized.... along with that I can't ever really walk or sit up right either due to cramps or pain in my legs. Over the years it only got worse, to the point now where I'm in a wheelchair...
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 the same old "lose some weight", "exercise", "take the pill",.... until I lost rapid weight because I couldn't get up to eat due to pain, couldn't exercise anymore for the same reason, and ended up having a psychotic episode due to the pill. It took me going to an 8th different gynecologist for her to believe me and set everything in action.
Before that they'd slapped an easy IBS on my problems but that only happened after I was admitted to the hospital because of malnutrition and dehydration...
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
People often give me the "I get cramps too" or "it can't be that bad". When people ask me why I'm in a wheelchair these days and I explain it they dismiss it as "wanting attention".
When I went to the doctor for the millionth time because of excruciating pain in my abdomen he gave me the "it can't hurt that bad unless it's appendicitis"
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My friends do, altho I've gotten a lot of "it'll get better soon" (spoiler, it won't), family is a bit iffy, especially my dad
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
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I'm starting to gain some trust again. Out of every doctor I've seen there's 2/3 I truly trust, the others just scare me
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I'm unable to work.
I used to be a dancer, I worked out, but now I can't get up without excruciating pain.
I feel like I lost a part of who I am and I don't recognize myself. I can't go out anymore, can't do the things I love...
Most importantly, I feel like a burden to those around me
What strategies or treatments have been effective in managing your pain? are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Using a mobility aid!!!
I was one of the people that had a very stereotypical view on them but if it helps you, USE IT.
Other than that, following the fodmap diet has helped controle the spasms in my intestines.
Heavy painkillers in days I need a little relief and a lot of hot water bottles and compression socks
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?
Movement, the pill, any kind of IUD, sleeping medication (because "I just needed to sleep it off")
What do you wish you knew earlier in your journey?
It sounds so stupid but I'm religious and just trusting that God will do everything in His timing. I've lived in pain for 10 years but am getting breakthroughs. Putting faith in Him I'll eventually get better helps me get up in the morning.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
People understand my struggles. People see my pain. People BELIEVE my symptoms and I get so much power through seeing people like me fight every day
Are there any misconceptions about endometriosis that you've encountered?
Its a one and done kind of diagnosis.
They find it - surgery - pain gone.
When it's so much more than that... and surgery doesn't always help...
Also that it's just painful on your period and it's just the fact that your cramps "are a bit worse"🙃
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?
Keep fighting.
Use whatever works for you, even if there's nothing that fully takes the pain away, use those tiny things that get the pain away even for just 1%