My symptoms started around 12 years old and it was August 2022 when I was 24 when I received a laparoscopic procedure that diagnosed me with stage 4 endo on many of my organs. I deal with 10/10 pain most months and it affects my life in so many ways but one of the most painful & frustrating parts of this diagnosis has been the doctors / medical professionals I trusted to help guide me that fully gaslit & belittled me. So many family / friends / loved ones don’t understand and carry conversations about this condition that affects my daily life like I’m being dramatic which is one of the most painful / lonely parts of having endo.
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?
Answered above: I’m 26 now & will be 27 in October!
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
My initial symptoms are similar to the symptoms I experience now: my mom thought I had food poisoning the first time I experienced severe nausea/vomiting/diarrhea on the first day of my cycle in middle school. I was put on hormonal birth control for a decade straight from ages 13-23 which masked some of the symptoms but caused insane side effects and had an overall negative effect on my hormones as I was not through puberty when I started them. My symptoms have fluctuated over the years but pretty much stayed the same.
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?
:( it actually makes me so sad to think about. A few months prior to my diagnostic surgery in 2022 (after suffering for over a decade and doing my own research to try to advocate for myself) I asked my OBGYN at Kaiser for hormonal blood work testing, a pelvic ultrasound, and asked about the possibility of having a laparoscopy to finally get a diagnosis, explaining that I think I might have endo. In the most condescending tone/smile she stopped writing and told me “a lot of people THINK they have endo, it’s kind of trendy right now to self diagnose that if you have bad cramps” and didn’t order blood work for me, but pushed birth control on me which I refused. My next period that year sent me to the ER as I couldn’t stop vomiting for over 8 hours. It was so painful and traumatic and the nurse I saw at the ER said they believed my symptoms were characteristic of endo and recommend that I see a new dr. Less than 2 months later I had surgery & I was diagnosed after endo tissue was biopsied
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I experience so many challenges in communicating my truth and advocating for myself. It’s been a long path of learning to not internalize the doubt and shame I feel projected on me by others.
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 like FINALLY in the last few years since my diagnosis I’ve set boundaries and created a support system for myself. It’s actually so so sad and painful to think about the super close girlfriends and family that I tried to maintain relationships with for so long & that now I’m not close with at all anymore because of their refusal to understand / attempt to educate themselves or empathize.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Still searching. My pain has been bad in the last few months & I’m trying to get seen in Rochester MN at the Mayo Clinic where they have excision surgeons for endo. Your page is so validating and informative and has introduced me to the my OBI devices & the cramp cream which help my pain SO much. Thank you🥲
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Everything 😭 literally my school / work / physical hobbies & relationships are constantly impacted by the unpredictability of my high pain days
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Diet changes & pain management tools / OTC meds & thc/cbd help more than anything else!
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?
Literally all OTC birth control (so many diff brands of pills, the nuvaring, Lupron, etc) has made everything worse. I also really heavily focused on cutting out everything that might be “bad” or “inflammatory” based on random advice from drs over the years and ended up in a place where I was so scared to eat anything / malnourished and it ended up causing more problems than helping.
What do you wish you knew earlier in your journey?
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So much😭 my heart breaks for my middle school aged self that felt so alone and confused and scared by the pain I felt. I wish I could tell myself and my mom to advocate always and know that no matter what is said in the appointments I go to, this level of debilitating pain isn’t normal.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes!!! It’s personally so comforting to me to find other women speaking out about their experiences with endo. I want more than anything to be in a position where I can help advocate for young women who feel lost like I did
Are there any misconceptions about endometriosis that you've encountered?
😭 where do I START? A doctor told me and my mom at 13 when I missed a week of school because of my period that I should try to manage my stress and implied to my mom that I just wanted to stay home. She made me go to school the next month when I was in severe pain and I was sent home after vomiting in class.
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?
YES. I would want to share literally every online resource/book/pain management tool that has ever helped me and advise them to keep track of everything, take notes at drs appts, always advocate for yourself, and know that they’re not alone.
