I’ve dealt with the pain and inconsistent periods since I first got them at 11. I was put on birth control at 14 to help make my periods more manageable. By age 17 I had went through every combination pill they made. Shortly after moving to Alabama I had a gyno suggest maybe I had endometriosis and she put me on depo which helped until I was almost 19. I ended up going off birth control 7 months after moving back to my home state, Indiana. I tried a bunch of home remedies and supplements until I finally found a gynecologist that believed my pain and scheduled a surgery for me in March of 2022. I finally got it confirmed as well as PCOS diagnosis. I had 6 months of relief then after moving back to Alabama the pain hit me like a freight train. So I got put back on birth control and also put on orlissa. That was the lowest I had felt in my life while I was on orlissa and norethindrone. So I went back on depo. I stopped taking depo January of this year and went back on norethindrone which I am slowly going off of because come to find out it effects my epilepsy. The norethindrone and many other forms of birth control can interact with certain medications as well as lower the seizure threshold making me more susceptible to them.
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?
8 yrs. I was 11. I was 19 when diagnosed.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
They’ve gotten worse over time. Stress makes all of my conditions flare up. I have pains in my abdomen, back, torso, chest cavity to where it feels like I can’t breathe, pains in my hips that shoot down my legs.
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 was told it was normal for a 19 yr old to have to use a cane to walk. I met two gynos who actually believed me and tried to help me.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I get very depressed at times when I can’t do basic things that I feel like I should be able to do. It’s hard to talk about to people because not everyone understands until they see it everyday.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My man is fantastic and extremely supportive.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I’m still searching since being back down south.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Work, relationships with loved ones and friends, hobbies like going on walks/swimming.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Changing my diet helped in the past and trying to minimize stress is very very helpful
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, supplements, exercises that were recommended by drs
What do you wish you knew earlier in your journey?
What I was experiencing wasn’t normal and there was a reason for it
Yes it means the world to me I don’t feel alone anymore
Are there any misconceptions about endometriosis that you've encountered?
That a hysterectomy or a pregnancy would cure it (my stepmom and birth father said those two to me)
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?
I would help them find ways to manage the pain to where they would still be able to function and I would try and help them find a Dr who could help them even further.
