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At the age of 14 I had my first period and was bedridden. Bleeding through super pads in an hour, throwing up and dizzy. At 16 I had my first ovarian cyst and threw up at the mall where I worked and drove myself to the ER. They gave me major painkillers and sent me home. From 16 on I have had over 30 (known to me) ruptured cysts. I struggled to stay pregnant for years, having nine miscarriages and one ectopic pregnancy. Following the ectopic surgery a dr mentioned endo. Five years later I had an exploratory surgery that turned into an excision when he found stage four endo. I had my second excision surgery finding endo again adhering my bowel to my back wall, my bladder to my uterus, an ovary to my kidney an obliterated pouch of Douglass and a few spots in my thoracic cavity. My fallopian tubes were removed during this time as well as they were completely destroyed. This same surgeon now says I should have a total hysterectomy as the surgery did not provide relief from symptoms.
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 me 18 years to get diagnosed. From the first period I ever had at age 14 I knew they were “wrong”. I was doubled over and vomiting from pain, bleeding through pads and having to miss or leave school monthly and none of my friends were experiencing this. I was 26 when a dr finally mentioned endometriosis. I was 32 when I got my official diagnosis following excision surgery.
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 were excessive blood loss during my period, nausea, fatigue, and recurring cysts (that doctors always waved off “this happens to everyone”) Folllowing my first excision surgery I had 18 months symptom free. My symptoms currently are the previous listed, as well as bowel pain, bladder pain, and I have 3-7 pain free days each 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?
I experienced dismissive doctors for years. I was continuously in the hospital for ovarian cysts, and later for unexplained fertility. I was repeatedly told that it was in my head and should take Tylenol and go on with my life.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
It can be very challenging to maintain long term friendships and I only have a few close friends as people tend to struggle with understanding that this is chronic, I will not ever be better. Following my official diagnosis I thought this would be easier, it has not been as of yet.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I am actively searching for a new doctor as my last excision surgery did not change my symptoms or pain level.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Everything! Working out, being a parent, going to school and then work it is an ongoing uphill climb to function and thrive.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
My first excision surgery was amazing and I was pain free for 18 months, my second surgery with the same surgeon had a horrible healing process and I never felt any pain relief. I use a heating pad, tens units, cbd, ibuprofen and Tylenol. I am gluten and dairy free and don’t eat processed foods. I workout 5 days a week. My pain is debilitating even with these interventions. my wearable heating pad helps me stay mobile most days.
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?
Orlissa. It is the WORST. I felt worse than ever and I gained weight.
What do you wish you knew earlier in your journey?
That my pain is REAL! I have stage four endometriosis and it is on most of my organs and causing regular internal bleeding. It is not in my head and it is not in your head either.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! I have learned more or insta and TikTok than from my doctors.
Are there any misconceptions about endometriosis that you've encountered?
That it is only during your period. Get a hysterectomy to cure it.
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?
You never have to stay with a doctor who does not listen or provide adequate care, keep searching.