My name is Kait and I’m 25 from Michigan, I’ve been dealing with endometriosis for at least 10-15 years and only in the past few do I feel like I might be getting the hang of this thing! My story is similar to many others where we have gone to specialist after specialist with an assortment of symptoms and they usually run bloodwork and a scan or two and give you the “you’re young and healthy” speech and send you on your way with no resolution to the immense pain you feel everyday. I had a breaking point after sobbing at my general practitioners office after being told “I don’t know what else you expect me to do for you, there’s nothing wrong with you”. If that’s the case then why am I in pain everyday, struggling with horrible fatigue, migraines, IBS symptoms, joint pain so bad I could no longer exercise and periods so painful I’d black out regularly…I was about to give up, maybe I was crazy and I just need to learn to live with this since doctor after doctor wouldn’t listen. The last area I decided to investigate was gynecology, it was the only doctor I hadn’t been to yet! Luckily this doctor recognized endo symptoms and suggested surgery. Unluckily she was not a specialist and preformed an ablation, at the time I didn’t know what this was and was just excited a doctor listened to me! After a 45 minute surgery where she left so much burnt scar tissue, I thought I was good to go! Until I had a horrible recovery and no symptom relief, I actually felt immensely worse over the next two years. My pain got so bad I could no longer exercise or really do anything outside of work, I refused to believe this was going to be my life and dived back into the idea this was all still endo related. By chance I came across Nancy’s Nook for endo care and learned I had unfortunately gone down the common but unhelpful path so many people had done too. There I leaned the differences between ablation and excision and found the one doctor in my state who preformed it and made an appointment and he listened to every one of my concerns with so much care and created a plan for me to preform an excision. I had that surgery in October and have noticed a significant different in my pain levels not only on my period but the rest of my hormone cycle as well. I do still have my share of hard days and am now exploring secondary diagnoses because of some symptoms I still have, but for the first time in years I’ve been able to loosely follow a workout plan which has been great for my mental health! I still have a long journey ahead but I’m learning how to live in a body that has a chronic illness. I have more pictures, it would only let me add one!
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?
My symptoms started memorably around 14, took 7 years for diagnosis
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Heavy bleeding, cramps so bad I would black out were my first, currently post excision I’ve been dealing with migraines and sharp vaginal pains
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 saw around 10 different specialists ranging from neurology to gastroenterology, all gave me the “you’re young and healthy” speech and sent me on my way! One doctor entirely dismissed me after yet another round of clear bloodwork and said “I don’t know what you expect me to do for you, there’s nothing wrong with you” but I continued searching until my uterus area was the last place unchecked and a doctor finally listened! Unfortunately this doctor did an ablation and made my symptoms so much worse for two years until I found an excision surgeon.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Everyday I struggle with some aspect of the day, which is super hard for my inner circle to understand. Today my fatigue is so bad it’s hard to stand and keep my eyes open, yesterday it felt like there was a knife in my vagina, and who knows what tomorrow will bring! I feel like it’s very hard for people without chronic illness to understand I’ll never feel normal
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I’m very lucky to have people close to me willing to learn and work with me! I definitely have had to educate some people on what a chronic illness is, and that yes I’ve had surgery but no that doesn’t mean I’m cured. I had so much support post op for my second surgery that I’m so grateful for.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
It’s getting better! I absolutely love my endo surgeon who did my excision. He was the first doctor who I felt like took everything I said seriously and made a plan, now post op exploring secondary diagnoses I did have to work a little to get my primary to hear me, but through all my doctors visits I’ve learned to stick up for myself
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Absolutely! I love being active but sometimes my body doesn’t cooperate, and that’s something I’m still adjusting to, my hobbies have taken a hit because I feel like I have to use every minute I’m not working to rest in order to work again the next day
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Although birth control is not a cure, for me I did mask my symptoms enough that I can still work, I say all the time I would not be able to maintain a job without it. Excision has helped me immensely so far as well as making healthier food choices. I also thought pelvic floor pt was so helpful and I’ve done a round of trigger point injection treatment in my pelvis which included muscle relaxer suppositories to use at night which were great!
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?
Acupuncture! It sent me into a horrible flare. Same with dry needling.
What do you wish you knew earlier in your journey?
It’s okay you have an illness, you don’t have to pretend you’re fine and push through pain all the time
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
It’s been so helpful! It’s so validating to have a seemly and random symptom and ask the community about it and they are going through the same thing! Sometimes I struggle with feeling like it’s in my head but this community has helped me a ton
Are there any misconceptions about endometriosis that you've encountered?
Yes! I’ve been told to have a baby to cure it, I just need a different birth control or just have a hysterectomy!
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?
Don’t give up! Your symptoms are VALID and no one knows you better than you! Doctors work for you so don’t be afraid to stand up for yourself. Start logging all your symptoms, even the little ones so you have all the information for your doctors. Find an endo specialist! People have controversial opinions on Nancy’s nook but it does have a master list of specialists that’s very helpful. Also join endo friendos! 💛