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 10 years to receive a diagnosis. I was about 18 when my symptoms started and was 28 when I got my diagnosis. I have questioned doctors about it for years because I’ve suspected I’ve had it for so long and have always gotten turned away.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My symptoms were initially always heavy and debilitating periods that would cause me to miss work or school. The last few years it’s progressed to severe GI symptoms, blood in my stool and painful bloating, as well as urinary symptoms.
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 had several ovarian cysts that placed me in the ER, including one rupture. In the follow ups, I always asked if they thought I had endo. I had 3 OBGYN’s tell me there was no chance based on ultrasounds prior to finally finding my endo surgeon. My naturopath referred me to get a colonoscopy and endoscopy due to my GI symptoms. The only reason I got on the right path to getting diagnosed was because my sisters roomie in PT school is a pelvic therapist and told me she thought my symptoms sounded like endo. I also was diagnosed with adeno.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It’s incredibly hard to communicate my pain to others. It appears I’m doing fine on some days, but I’ve gotten so good at masking the pain over the course of a decade. People don’t understand the severity of endo, and I can’t blame them. But it’s hard communicating when people don’t understand it affects me every day in one way or another.
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 and family & husband have been so helpful. It’s been a learning experience for all of us. Every day I wonder how I would get through this without them. It’s still hard sometimes knowing that I’m the only one who can fully understand.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I found a specialized endo excision specialist in my area thanks to my sisters friend who is a pelvic PT. The care was pretty good from start to finish. I had a lot of complications post-op so that was challenging. I am still searching to find a good OBGYN who specializes in endo & adeno.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
All of the above! I hate missing work & have to miss so much over the last couple years for countless appointments & then for 4 weeks post op. Luckily they have been amazing and so understanding but it’s still a challenge. It’s made my relationship stronger, but is the majority of our stress on a daily basis. I miss being able to do high intensity workouts more than anything but my body just can’t tolerate it anymore.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Switching to low impact workouts like walking and Pilates has helped. I’m currently in post-op PT, but it’s been so hard to find a good provider. Loving the endo app for tracking symptoms and trying to pin point inflammation triggers!
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?
Diet is the hardest. It feels like no matter what I eat, I still get painful bloating & endo belly.
What do you wish you knew earlier in your journey?
I wish I knew that endo doesn’t always appear on ultrasounds, MRI’s or colonoscopy’s. I was told for years I couldn’t have it based on my imaging.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! It’s been so helpful to be reminded I’m not alone & that it’s ok to struggle to navigate this every day. Community means having support & sharing experiences to help make the hard days easier.
Are there any misconceptions about endometriosis that you've encountered?
So many. That it’s just a menstrual health disease & that getting a hysterectomy will cure it.
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?
Go see an excision specialist! But remember that it’s not a cure. Lifestyle changes play just as big of a role. Lean on the people around you & don’t settle for care that isn’t top tier. If you have a gut feeling all your symptoms are pointing that way, you’re probably right!
