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When I was 11 years old, I had an injury to my abdomen. Shortly after this, I hit puberty and got my period at the age of 12. Within the first year of having my period, I knew something wasn’t right. I had symptoms that were completely abnormal compared to any of my friends. I couldn’t empty my bladder for up to 12 hours at a time. I got hot flashes, cold sweats, constipation, numbness and stabbing pains down my legs, nausea, headaches, and extreme cramps. In my teenage years, I began having pain and bleeding with sex - bleeding that would last up to a week at a time. Birth control did not change this. When I was 18, after hitting a malnourished weight and being unable to function from stomach problems, I went to Mayo Clinic and was diagnosed with Pelvic Floor Dysfunction. It was not until some years later when I was 21 that my doctors and I began suspecting that I may have endometriosis. In 2021, I underwent an exploratory laparoscopy and my surgeon did not find anything. I was crushed, I didn’t understand how with all this pain they couldn’t find anything wrong. Over the next year I underwent a multitude of procedures to have pelvic botox, nerve blocks, and froze my eggs. During an MRA to be diagnosed with a pelvic compression syndrome (May Thurners), the radiologist noted that I had Adenomyosis. After trying just about every birth control pill out there and consulting more than 5 doctors who specialize in Obstetrics, Pelvic health, and fertility, it became clear that I needed a hysterectomy (hence the above mention of egg retrieval). Reasons for the hysterectomy were: uncontrolled bleeding for 2+ years and chronic pelvic pain. At the beginning of 2024, I underwent an exploratory laparoscopy, total hysterectomy/salpingectomy, and cystoscopy which resulted in not only the finding of Adenomyosis but also stage 1 endometriosis. Upon reflection with my surgeon and some medical literature, we suspect that the birth control I was on during my previous surgery in 2021 had suppressed the endometriosis so that it was undetectable. I am still recovering from my surgery and digesting the fact that I am 25, infertile, and there’s still a chance the endometriosis can grow back.
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?
13 years, I was 25 when diagnosed officially
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Fatigue, headaches, constipation, inability to use tampons, pain with sex, chronic bleeding, numbness/pain through legs and back, chronic cramping, stabbing pain, throbbing. I just went through surgery and no longer have a uterus so the bleeding is gone and cramps are different.
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 some horrible doctors who’s immediate treatment option was to put my in menopause at 18. With other comorbidities this was a horrible option for me and not thought through. I have experienced dismissal and doctors not looking at the whole picture but I was very lucky to meet my surgeon who was always willing to listen and keep brainstorming ideas and treatments.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Endo/Adeno have made life extremely difficult. I have not been sexually active in five years because of it. Many people can’t possibly understand what it’s like because other people’s periods are not debilitating and often endo/adeno are painful beyond just the period which is also confusing because they’re mostly seen as period/hormone diseases.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My family is very supportive and my best friends do a great job too.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I finally found a team of medical professionals I trust. It took a very long time and hard road to find them.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Relationships and hobbies have been largely affected. I do not date and am not sexually active. I am often in too much pain to participate in the hobbies that I want to.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Heat and pelvic PT are very useful. Pelvic Botox & nerve blocks have been helpful with pain. I take gabapentin every night for pain and occasionally muscle relaxer suppositories. I also eat a mostly Low FODMAP diet which has helped with inflammation.
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?
Opioids, antidepressants, muscle relaxers, exercise, and hormones have not been particularly effective.
What do you wish you knew earlier in your journey?
I wish I did research sooner and knew people who had endo sooner. I felt alone for a long time and often felt crazy for thinking I had endo when people constantly told me it was just my pelvic floor dysfunction causing the pain. We know our bodies best.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes, I got connected to Nancy’s Nook through the endo social media community and the research I did through their files really helped me understand endo better so that I could try to help others understand.
Are there any misconceptions about endometriosis that you've encountered?
Many don’t understand that endo can’t be seen on scans which feels very invalidating and is difficult to make decisions to undergo exploratory surgery when scans and doctors often can’t guarantee you that it is or isn’t there.
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?
Fight for yourself. Do your research. Reach out to people who have it. If your doctor won’t listen, find another doctor.
