I got diagnosed with endo on August, 2022, after I almost died with peritonitis. I was so used to the pain (cramps and intestinal pain) that I didn’t realise my appendix was exploding.
I’ve had symptoms since I was 12 years old. Stabbing pains on my ovaries, gastro issues, cramps, poop pains, etc. but people kept telling me it was normal, maybe my pain threshold was low, I needed to live with the pain and other nonsense.
But I knew a something was wrong. I’ve been going to doctors since I was 15. All of them repeated the nonsense. Until 2018 when I read about Lena Dunham‘s story. It sounded so familiar. I told my doctor I suspect I had endo. He told me it was probably just stress (wtf?) and that I wasn’t infertile so I didn’t have it (I was 20 and a virgin).
Three years later my symptoms started getting way worse. I lived with diarrhoea, bloating and nausea. My cramps kept me in bed for weeks. And I felt really bad. I went on an inflammatory diets and it helped for a while. But other symptoms persisted. I had these awful pains on my bowel that made me want to die.
Until August 28th of 2022. That day I woke up with intestinal and uterine cramps. “Normal” I thought. But after hours and hours of pain, bonito and diarrhoea. I finally when to the emergency room. I had emergency surgery and finally, after years and years of waiting I had my diagnosis.
I still live in pain. But I am learning how to manage it. I have fisio therapy, a waking stick, medicine that helps and many other aids that make it all more manageable (on most days).
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?
It took 13 years to get a diagnosis. I was 12 when symptoms started. I was 25 when I knew for sure.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
I had awful cramps and stomach issues. My cramps (the way they used to be) are gone now because I don’t have periods anymore because of my treatment. But i do have daily pains on my legs and abdomen. the diet I have helps, but my gastro issues appear at least 10 times a month.
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?
Awfull. They ignored me and delayed my diagnosis for years. I even told them “I have endometriosis” and they didn’t believe me
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
It’s very hard. My family is supportive but they get scared sometimes and in the midst of my pain I have to comfort them.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
I do feel supported. But sometimes I wish they could feel what I am feeling so they can understand more
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Thankfully yes. I have a great pt and gyno. However I am still looking for a good a gastrointestinal doctor and nutritionist.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Yes! I loved going to the cinema. Now I can’t seat for that long on the uncomfortable chairs. So I have to pick the movie very carefully. It has also made going to parties and events harder. I manage sometimes, but it is a whole ordeal to do it
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
I love my hot water bottle. My ice pack. Physiotherapy has been a life saver. And also my walking stick (thank you Emma for the suggestion).
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?
Pain medication. It hardly ever works and it messes up my stomach.
What do you wish you knew earlier in your journey?
That alcohol was my worst enemy. After I quit it my symptoms decreased a lot on my nights out. It was truly a game changer
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! Couldn’t do it without you guys. I had so many questions I was nervous to ask and you made me feel so seen and understood
Are there any misconceptions about endometriosis that you've encountered?
People usually jump straight to the kids thing. They assume they have a right to ask about my possible infertility. Truth is, I've always known I wasn’t born to be a mom, endo or no endo, but I don’t want to explain that to strangers.
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?
Advocate for yourself. You know your body better than anyone. And do research. It’s better to be prepared with knowledge