I have had horrible periods from the moment I got my period at age 9. Every month I would fear my period and partially the fear and anxiety would make it so much worse. As I got older it got worse- I remember in High School I would sit on the floor of my bathroom in my catholic school uniform and dry heave into the toilet before school and my mom would say ‘get up- you’re gonna be late’. I don’t blame my mom at all- she is the product of every single doctor of mine telling me that I was fine. They would tell me to start taking Tylenol and Advil 3 days before my period started and then when it came- switch between the two every 3 hours. As a 24 year old I still have so much anxiety taking advil or tylenol because of how much I abused those as a teenager. One I started having sex at 17 I realized something was really wrong. I would bleed a lot and have horrible pain during sex. Certain positions like doggy and missionary hurt the absolute worst. Finally I found my doctor (Dr. Seckin and Dr. Lora Liu in NYC) and they told me I was a perfect candidate for surgery. I was only 19 when I had my first laparoscopic surgery for Endometriosis. The surgery was suppose to be 1 hour long- it ended up being 3. They had to suspend my ovaries because of the inflammation caused my endo. My uterus was super retroverted which made everything harder. I had 21 polyps of endo (average is 9 for someone who is middle aged). They took out my appendix because of how much endo was covering it. The recovery was so so horrible. I needed help getting out of bed every morning, I got a UTI from the catheter, and the gas pain was so bad. Your first period after surgery is so so so bad. I remember thinking ‘what if the surgery didn’t help’ ‘what if I went through all that and it didn’t work’. It was a long road to recovery. But at age 24 I can say that I am so happy I had surgery and have scheduled another one in March. Endometriosis is complicated, it makes everything confusing and blurry. I remember I used to disassociate from the hips and down whenever I had sex. The pain was so bad I would close my eyes and try to imagine I didn’t have a bottom half. It because such a habit and still now I have to focus on being present during sex to actually enjoy it.
I hope I can share my story with anyone willing to listen! I am open to share anything and everything!
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?
From when I got my period to when I was 19 (I was diagnosed at 19). So approx. 10 years.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Painful periods, joint and knee pain, vomiting and diarrhea. Symptoms got worse as I got older and now I still have them (a lot less since surgery) and I have a lot of pain during sex.
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?
All of my family doctors and gynecologists told me that period cramps are normal. They told me try ‘working out’ some even recommended me to read a self help book. When I was 15 my doctor wanted me to go on birthcontrol but my parents agreed that I was far too young.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
Symptoms can completely change my mood. I had a cyst rupture this past summer and thankfully I was at my parents house because they had to rush me to the hospital. I Couldn’t walk and even breathing felt like it hurt. I have another chocolate cyst (blood filled cyst) on my ovary and every day it feels like a ticking time bomb waiting to explode.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My parents are so so amazing. When I had my surgery and they had to wait longer than expected- my mom told me she was so worried. When my doctor explained that my condition was worse than he thought, my mom was so apologetic for all the times she rushed me to school or forced me to go out when I was on my period. My family is so very supportive and I am so happy to have them and the funds to support my condition. (Medical bills- especially for a condition that is not considered essential to treat- is expensive)
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
I have an amazing doctor who I have known for 5 years now. She is so kind and is a mother herself so she feels very warm and loving. I will be going back to her for my second surgery in March
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
School, relationships and work have all been affected. I am a young woman with sexual dysfunction because of endo. Everytime I am penetrated by anything, I clench up and get so anxious that it’s going to hurt because of how long I have dealt with pain.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
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I go to yoga and pelvic floor physical therapy. These two have been saving my life
What do you wish you knew earlier in your journey?
I really don’t like messing with fate or the universe. I feel like everything happened how it was suppose to happen and I found out about my endometriosis at 19 which is so young.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I love the endo community. Everyone is so supportive and informative, I couldn’t be happier with all the IG accounts that share critical medical info.
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?
Stay strong!!! Move your body!!! Talk to friends!!! Watch youtube videos about endometriosis!! There is support , but you have to look for it.