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 to be diagnosed
I was 13 when symptoms started but by age 19 I was really begging for help
I was 32 when I was diagnosed
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
It initially started with severe pain and heavy periods. I leaked regularly. Then it progressed to more bowel issues. I was diagnosed with IBS at 25 and had my gallbladder removed at 27. My digestive issues got progressively worse. I was so bloated 24/7. I would get lightening crotch and have painful bowel movements. I also had the urge to go to the bathroom all the time.
Currently since my excision surgery in November 2022, my symptoms have been minor. I am grateful as I had stage 4 endo throughout my whole pelvic region. It was on places such as my rectum, posterior culdesac, ovaries, ureters and sigmoid colon and peritoneum. I had many dense adhesions connecting my ovaries to my ureters and sigmoid colon. I’m currently not doing any hormonal therapies so my periods can be a little painful but I also have adenomyosis. My biggest symptom I currently deal with is numbness and shooting pain down my legs when I have my period usually only on day 1.
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?
Not a single healthcare professional brought up endometriosis until I brought it up. I had two endoscopies, a colonoscopy, gallbladder surgery, and countless doctors appointments trying to pinpoint my digestive issues. No one ever dismissed me, but didn’t seem to think it could be any other thing than ibs. I’m very grateful that my gynecologist office is actually an endo specialist. I had no idea until it was time for surgery though. But it still took me bringing it up to actually get a the ball rolling on a diagnosis.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Thankfully my symptoms have been mild since my surgery but beforehand I really struggled. I canceled plans often, didn’t want to do much. I was worried I would flare while being out. I am a pretty open book so I told people what was going on and didn’t struggle to really communicate how I was feeling. After the diagnosis though I really struggled. It was such a rollercoaster. I was relieved on one hand and then devastated on the other. I long to be a mom and the infertility stamp on my medical chart is hard. She was unable to clear a fallopian tube in fear that I might lose it.
How is your support system? do you feel supported? Do you feel that your family and friends try to understand and support you?
I have a wonderful support system. My friends and family are always willing to listen. Unfortunately many don’t fully understand as they don’t deal with chronic pain like I do. I go to therapy regularly and that really helps as well.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I feel like my medical care is great right now. I trust my specialist, the PAs in her office and I trust my PCP.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Dating was really difficult for a long time. But I recently met someone who has been amazing about my diagnosis. I do struggle with being active and working out like I used to. I think part of that is rebuilding all the strength in my core.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Over the counter pain meds, heating pad, and stretching. I do try to eat anti-inflammatory and I notice that helps.
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 helped with not having periods and the pain that comes with the cycle, but the side effects really didn’t help my cause. I’m much happier, have a sex drive again, and my stomach issues have lessened even when I splurge on something.
What do you wish you knew earlier in your journey?
I wish I knew more about endo. It took me seeing someone else talk about it to bring it up. I would have brought it up years ago had I known more about it.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Absolutely. It’s nice to relate and see what may work for others.
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?
Keep pushing for answers, don’t give up!
It’s ok to feel your feelings and be sad sometimes. It’s a grieving process and you eventually learn how to cope. You know your body best and be sure to listen to it!