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?
Symptoms started at 15-ish, diagnosed at 20
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 IBS symptoms . Heavy or no periods. Nausea and fevers with periods. Passing out from pain during my cycle. While my symptoms have been marginally better , I’ve found lifestyle changes accompanied by a wonderful team of proven medical professionals , I am able to function. Unfortunately, I’ve developed nerve and cardiology issues due to chronic pain :( I currently experience intense pain with periods. Vasovagal Syncopse. POTS. Neuropathies. IBS. Migraines. Endo belly. Endo fatigue…. Geez so much
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?
There were so many misdiagnoses including being accused of “pill seeking” and being a “hypochondriac”. Even after diagnosis I was stranded and medically “abused” through chemical menopause , being gaslit into “just dealing with it”, and to this day I still struggle with medical professionals but am slowly finding my team of “Endo-vengers”.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Being open about my pain is incredibly difficult. I don’t want to overshare but I’m afraid of not sharing enough. I don’t want to overburden but if I don’t tell people the truth then I allow myself to be pushed past my limits. Being honest with myself was the first step in being honest with others about needing grace for my day to day .
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I feel incredibly supported. I’m honestly overwhelmed with love. It’s a beautiful thing I will never take for granted .
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
YES! My keys to success were stepping away from “hospitals” (aside from needing excision surgeries) and moving toward integrative medicine encompassing supplements, physiotherapy, pelvic floor therapy, and medical massage, & counseling.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
I am now unemployed due to endometriosis . I can hardly last 8 hours in an entire day. The fatigue is no joke.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Movement is everything…. Even if it’s a quick walk around the house on your worst days. Following an anti inflammatory low-estrogen diet and cutting out coffee rocked my freakin world !
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?
Birth control, chemical menopause, ablation surgeries… geez I could go on.
What do you wish you knew earlier in your journey?
Have grace. Don’t push yourself past your limit… you can’t beat this. Not yet. So fight for the cure and find grace and joy where ever it may be found…. And be HONEST with yourself and your support system.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes and no…. It’s hard to find a forum where it doesn’t turn into “well my symptoms are worse than yours.” I crave encouragement, scientific facts and current research//findings , and honestly just pure joy and support. I don’t need answers. Sometimes I just need heard and hugged . I need to know there is hope and people like the folks at endofound are spreading this hope like glitter in a tornado 😭🙏🏽
Are there any misconceptions about endometriosis that you've encountered?
Oof. Ablation only makes it worse… it’s not even worth trying. Birth control only suppressed my symptoms and made me gain a ridiculous amount of weight. Pregnancy doe NOT always cure endo. Hysterectomies can only help symptoms and doesn’t always “cure”. There is so much more to endo than “spontaneous endometrial tissue “. Oh? And it’s not just in your reproductive organs . It can be found everywhere but your spinal cord… that includes your brain and heart dude ! I’ve even encountered the loss of fellow endo warriors due to this disease…. You can’t will it away. You have to be good to yourself inside and out.
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?
You probably do! Please visit http://nancysnookendo.com/ . Educate yourself on the lifestyle changes and don’t just trust any surgeon, OBGYN, or “endo expert.” Take a pause. It’s easy to want immediate answers; this is a marathon …. Not a sprint. Lifestyle changes are everything! Oh… and don’t forget … LIVE LIVE LIVE ! Endo isn’t your life. It’s just a rough part of it… take advantage of very moment. Kiss the rain. Feel the sun on your skin. LIVE!