I’m such an open book :) got my period when I was 11. It gradually got worse with pain each year. When I was 15/16 my friends and I joked my pms was so bad I was always on my period. By 16 I was bleeding heavily and having worse pain. By 17 I was bleeding through heavy tampons in 2 hours and having severe pain. I got on birth control pills and used those and naproxen for my pain. By the time I was 19 I started having low back pain. It got worse and worse, so I did tests and learned I have a herniated disc and went to physical therapy. The pain wouldn’t go away. I saw a back specialist and got an mri, same results, keep doing physical therapy. It made no sense. I did pt as long as they told me with none of the results I should have. Finally, as I began having more pelvic irritation, my dr mentioned endometriosis and to see if that matches my symptoms. It did. I dove into the research, found a specialist in Portland, who said I was a great candidate. I got scheduled for surgery in 2021 when I was 20. Waiting for surgery I was in severe back, pelvic pain, sciatic pain, and nausea. They found endo in my cul de sac and left pelvic wall pressing down on my nerve plexus causing the sciatic pain, back pain, and nausea. Recovery for me took a long time. It wasn’t until 6 months I started to really feel better. I still have scar tissue that gets tight I massage to loosen, but my symptoms are much more manageable. The back, sciatic pain, and nausea are gone. I have an iud that masks my periods right now.
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 started my period when I was 11, though my symptoms got bad around 15/16. I wasn’t diagnosed until I was 20, so 4ish years. I have a horror story of swim team practice getting out of the pool and my coach telling me I’m leaking, since my flow was so heavy. I panicked!
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
When I was 15/16 it started with feeling like I had my period all the time, or pms symptoms constantly. Back aches, pelvic aches, tummy aches, aching body, fatigue, exhaustion, different cravings, nausea, a weird appetite or none at all. By 16 my periods started getting heavier and more painful. The real shift came when I was 17. That’s when I bled through everything in a matter of 2-3 hours, like my mom used to. I had such unbearable pain I couldn’t get to the bathroom. I remember lying on the floor and just breathing hurt so intensely. I went to get birth control from my dr. My pediatrician asked if I had a history of endo in my family and my mom and I said no. We could’ve said we don’t know. Nothing was diagnosed at the time. But I’d later learn that’s what I had, and there’s a reason my mom had an ablation, my grandmother was on birth control then had a hysterectomy, my aunt had awful periods, etc.
Birth control masked my symptoms for the next few years, until my back pain got so bad it showed up when I was 19. Then I had to investigate. I currently still have some pelvic pain, but I am able to work with my pelvic floor physical therapist who helps me a lot. Now I work on management and prevention of pain. Of course with having endo, I have other chronic illnesses that I have to deal with as well.
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?
Thankfully, I worked with a specialist for surgery and his team was amazing. Dr Fogelson and everyone at the Pearl Surgicenter were so so so wonderful. Leading up to that though, I had negative experiences. There was a naturopath who told me to get pregnant to cure endo when I was 19, there were some medically traumatizing experiences with a bad urologist and physical therapist, there were nurses who thought hysterectomies cure endo. Misunderstandings: back drs and specialists thought my pain was due only to the herniated disc. All along it was from my endo. If I didn’t research endo and find a specialist, I would’ve been stuck with them and no help at all.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I have days where flares happen. I’ve got tools, a pain bag I carry, so I’m prepared when it happens. It definitely affects your mental health. I’ve learned how much I hold stress in my pelvic floor. I live with some stressful family members and once I move out, I think that’ll ease some pelvic tension I carry.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My boyfriend’s been wonderful. He’s been there through the whole journey, he saw me from age 17 to age 23 now, so he watched endo progress the way it did. My parents have supported me financially. My home life is stressful and that does cause pain sometimes. Some of my healthcare team thinks once I move out my pain will improve. I notice my pain goes away when I’m not around the stress at home. So that makes a big difference.
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 good, I’ve found tools and sites online to search through drs and I’ve established a solid healthcare team that I work with regularly. I found drs I trust, feel comfortable with, and I searched them online to ensure they’re familiar with endo.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work- I work as a receptionist at an optical company. I have a stool under the desk I can put my legs up with. I can use my portable heating pad if I need. It’s a sitting job which works best for my body, since I have other chronic illnesses and forms of chronic pain. My boyfriend has been with me through the entire endo journey. He’s been incredibly supportive and has wanted to better understand what’s going on and how we can manage and minimize my pain.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Pelvic floor physical therapy, cbd suppositories, working with a gastro and a new diet with no gluten or wheat or lactose or oily greasy heavy deep fried foods, swimming is great for me, pain management and also prevention, scar tissue massage
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 pills were just masking things. It would’ve been helpful to better understand that sooner. Instead, it’s handed out without much info shared, naproxen with it for my period pain, when in reality those are signs right there to investigate further. It was just delaying the inevitable.
What do you wish you knew earlier in your journey?
Pain is never normal. Just cause mom had it, and her mom had it, doesn’t mean you should either! When your pediatrician asks about endo, instead of saying no just say I don’t know! Cause that’s actually what it is! (The book pain and prejudice by Gabrielle Jackson is a great read also)
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Absolutely. The internet and social media have been huge for better researching and understanding this illness and not feeling so alone either, especially when you’re in bed for months before and after surgery.
Are there any misconceptions about endometriosis that you've encountered?
Plenty, pregnancy cures, hysterectomy cures, social media is full of people convinced they can cure it too
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?
Dig deep into the research, arm yourself with the knowledge, advocate for yourself. Research a good endo specialist near you to see. Pt especially pelvic floor pt has made the world of a difference for me. Also social media has such a wonderful endo community and people share what products they use for pain which helped me a ton!