My name is Bonnie and I am 18 years old and I have diagnosed Endometriosis. At age 13/14 is when my pain started feeling intense and worse, something just didn’t feel right. I was told your a girl periods hurt it isn’t a big deal. Years went by where the pain got worse and by the time I was 16 before, during and after my periods I was in pain. At the time I did martial arts at the time so I thought the pain that was now getting worse in my back and pelvic area was from that. But after months of non stop pain I realized the pain always started around my cycle. My first gynecologist visit was at age 16, to say I was terrified was an understatement. My first visit I gave him my symptoms and he gave me birth control. I was sent home for a month and told to come back and that was the same process month after month. The pain was getting worse and nothing was working. At this point I had no quality of life. It was February of 2022 when I went to my monthly appointment he finally said oh you might how endometriosis so we are going to give a medication called Orillisa. I tried that for about and a month and it worked so I continued to take it. But the pain continued and it wasn’t stopping. So after about six months of taking a birth control pill, Orillisa and my anxiety meds I was finally offered an laparoscopy. In August of 2023 I had my laparoscopy and they found endo. I finally felt seen and understood after my surgery. Although the surgery did help the pain truly never stops. It’s an ongoing battle that millions of women face everyday.I will advocate for myself and all the others who struggle with this awful disease.
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?
About 2 year after my symptoms got debilitating sloth I had endo pain since about 13
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Lower back pain, pelvic pain, hip pain, and abdominal pain. They have stayed about the same pretty severe after surgery. I currently live with pelvic pain and back pain pretty much everyday.
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?
My experience was awful to say the least. My doctor wrote me off many times and said oh lose weight, eat an all yogurt diet( not joking). My doctor dismissed my pain because I was so young. A nurse once looked me in my face and told me “have a baby it helps” I was 16 years old. He said oh your pain your feeling is probably IBS it’s just your stomach.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
My symptoms and pain affect my whole life. It’s very difficult being young and seeing everyone around me thrive and be able to live their life. I often feel envious of them I wish I could be a normal person and go out and be with friends and go walk my dog but most days I can’t because of the pain.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My support system is wonderful. My mom, dad and sister have never once given up on me no matter how many times I say I can’t move and cry for hours because of how much pain I was in. They listen and although they don’t understand the pain they try to.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
After my surgery I’m still searching for doctors I trust.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Many areas of my life have been affected by endo. I had a job but I had to quit because of how severe the pain was. I don’t have many friends because it’s hard to make them because I never have an opportunity to. I did martial arts for four years before my diagnosis and I was three belts away from my black belt before I had to quit due to the 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?
I have changed my life drastically, I don’t drink caffeine, I stay away from gluten. Those are two major diet changes I follow I find that they make my inflammation worse in my body.
For pain management I always have a heating pad by me and my pain meds. I also swear by my somedays cramp cream.
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?
For me personally tens units don’t work for me but I know they are such a great tool to many other with endo!
What do you wish you knew earlier in your journey?
I wish I knew that it’s ok to ask for help and not pretend to be ok when you aren’t.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
Yes! Being able to read and listen to others journey has helped so much. It makes me feel like I’m not alone.
Are there any misconceptions about endometriosis that you've encountered?
Yes, I was recently talking to a nursing student who is hoping to become a doctor and he thought endo only affected the uterus.
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 tell them that it’s better to talk to every doctor you can get to until one listens than living a life in pain. A motto I live by now is “its ok to not be ok” it’s ok to need help.