I began having symptoms when I was 13 years old. I had migraines and GI issues before having my first period. After getting my first period I bled super heavy and it would get all over my bed sheets and clothes. Months after that I wouldn’t have a period and then when I would get one it would be the same and extremely painful. It felt like my insides were being twisted and pulled. My abdominal wall felt like it was being scrapped. When I was 14 I woke up one morning and was in such excruciating pain. That pain never went away. I was ending up in the ER and seeing multiple different drs to be told I was just expecting my period or I was constipated. It wasn’t till November of 2019 one ER dr mentioned that I most likely had endometriosis and sent me to an OB/GYN. I had the WORST experience with the OB I saw. She made me feel like it was all my fault and that I was going crazy and imagining my pain. She put me on multiple different birth controls and suggested I got to therapy and take antidepressants to see if that would help. In September of 2020 I had a diagnostic lap and low and behold I had endometriosis. It was extremely bittersweet to have that diagnosis because I wasn’t crazy but I knew I was in for a lifetime of pain. Two weeks after surgery I was back at square one with excruciating pain that felt worse than before. My OB at the time preformed ablation and said she was capable of doing excision but didn’t think it was necessary for me to have. I was on the depo shot and yes it helped but she decided I needed to get it every month and a half instead of every three months and this made me very sick. I had a migraine for 4 whole months and I was having hot flashes and I was cramping more than before. She stopped seeing me due to me being young and her never having a patient so young that should couldn’t fix with Neproxan. I was still on this depo plan till I met my specialist that I’m so thankful I was able to get in contact with. She immediately took me off the depo and put me on the mini pill till I was able to get in surgery with her since she was so booked up. September 28th 2021 I got my surgery date and I sobbed while my friend held me. I was so happy that I was finally going to be taken care of by a medical professional who believed every single word I told her. I got my excision surgery January 5th 2022 and that day will always be a core memory. My 2hr long surgery got all of my endometriosis cleared out and removed. Pathology showed endometriosis, chronic inflammation and fibrosis that was caused from the ablation surgery I had. I had my IUD placed while I was in surgery and after a month of recovery I learned what it felt like to be a “normal” teenager and go to school and hang out with friends and go out. I now have some symptoms and some flare up days but it’s bearable and more manageable. I’m 19 and I’m just now starting to get my life on track. The life that endometriosis has deprived me of.
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 a year and a half to be diagnosed. I was 13 when symptoms started and I was diagnosed at 15. I started to get seen for my symptoms at the age of 14.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
GI issues such as diarrhea, Migraines, Heavy painful long periods, pain without menstruation in my lower abdomen, back and hips to my legs. They got worse till my excision surgery. I now currently have cramps in my lower stomach and back and pain in my hips.
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?
It was awful in the beginning. I was told I was too young and needed to go to therapy. This was all during the time of quarantine and the doctor told me I was stressed and manifesting and manipulating myself to believe I was in pain.
How do your symptoms/pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I basically missed my whole first year of high school. I didn’t attend a majority of the time and I was unable to hang out with any friends and I missed multiple opportunities that would have set me up for a better future in school. I didn’t get my license and I was bedridden all the time. I have. It’s hard to tell someone how impacted your life is from pain when they can’t see it happening or can’t experience it themselves.
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 had an amazing support system. My family were with me each step of the way. I lost a lot of friends in the beginning for being too negative or unable to hang out but the friends I have encountered now have been so much more than supportive.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
It’s so much better now. My PCP is amazing and connected me to a great endo specialist and for them I’m so incredibly thankful.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
Yes almost every area. Relationships in forms or friends and intimately. When I’ve brought up the topic of endo and what it is most guys have run for the hills. Others are sweet and caring but that’s rare. I have had yet to work because I can’t drive because I haven’t gotten my license because of my endo. Driving was scared me for the longest time because when that unpredictable pain hits I go completely numb. I had lost interest in multiple hobbies as well but I am slowly going to pick them back up and get my life back on track for everything.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Three treatments that helped me most were the depo shot, excision surgery, and the Mirena IUD. Having a cleaner diet has helped because I am so sensitive to gluten. Also doing small things to help alleviate stress has helped. Stress has been a major trigger for my flare-ups so having a calm mind helps my body.
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?
Ablation surgery DID NOT help. It caused me more and more pain and cause me to have fibrosis and more damage to my body. I’ve been on multiple birth control pills and those also didn’t help.
What do you wish you knew earlier in your journey?
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I wish I knew that I was going to be okay and that I wasn’t alone. I was so young and so scared and deeply depressed. I had no one to relate too and it felt like my life was being eaten away and I wish I would’ve know the outcome and that I was going to be okay and use my story as power to help someone else out there.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
YES YES YES!! After I was diagnosed with endo I discovered the endo community and immediately felt relief to see I wasn’t alone and there were so many other people with the same condition as me. I then joined and made my own account shortly after.
Are there any misconceptions about endometriosis that you've encountered?
The ones that make me roll my eyes the most is when people say “it’s just a period disease” or “birth control will make it go away and keep it from coming back” NO NO NO! Endometriosis is NOT the same as a period and it is INCURABLE!
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 to do their research, track symptoms and when they have them and what could be causing them such as foods or activities etc. Track every detail and present it to your doctor and do NOT back down if they tell you anything along the lines of you being crazy or attention-seeking. As intense as it all is please remember you will be okay. You will get the help you need and you are so loved and matter so incredibly much. If you ever feel alone check out the endo community on all platforms and reach out to us. We are more than happy to talk to you and share every detail of our life with endo with you. I promise you aren’t alone and no matter where you are in your journey keep fighting.
