My name is Jessica Glenny, I’m 28 years old and I was diagnosed with Stage 4 Endometriosis, Adenomyosis and Thoracic Endometriosis a year and a half ago. I got my period when I was 12 years old and started having cramps right away. I have a very long history of hospital visits, internal ultra sounds, gynaecology appointments, OBYN appointments and begging my GP for help. Every single time, I was told “it’s just a period, don’t you think you’re being over dramatic?”. After hearing this for over ten years, I started to believe it myself and gave up. I lived a life in pain, until it got so unbearable.. I believed I was dying. I was admitted to the hospital with what they thought was appendicitis (fainting, extreme pain in lower right abdomen, throwing up). They kept me over night and gave me pain meds to feel more comfortable. The next morning, a doctor came in and told me I had a cyst burst and another cyst on my left ovary and it was the size of a pool ball. This doctor told me I had to follow up with my GP and get checked further. So, I knew it was time to make another push for further testing. I got a CT scan and the radiologist confirmed it was an Endometrioma (only stems from Endometriosis). I broke down, knowing immediately I was right the whole time. I then got an appointment with an Endometriosis specialist, who completed an Endometriosis mapping scan and MRI’s, which then confirmed I had stage 4 endo, Adenomyosis and Thoracic endo. I FINALLY had answers. It took 15 years to diagnose me. I have it on my bladder, bowel, uterus and lungs. My first excision surgery will be at the end of summer and my hysterectomy for Adenomyosis will be at age 35. I’m happy, because I now have a diagnosis. On the other hand, I’m sad because my body will never be the same. I can barely move some days, I’m always extremely I’ll (especially with stomach issues, I was misdiagnosed with IBS on multiple occasions) and I now fear the future. I’m someone who truly wants children and I feel like the health care system has let me down. If someone had of listened from the start, it may not have spread so rapidly and could have been caught early on. Instead, I was made to feel it was all in head.
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?
15 years. Symptoms started at around 12 years old and I was diagnosed when I turned 27.
What were your initial symptoms? Do you feel they've progressed or gotten better over time? What symptoms do you currently live with?
Originally my symptoms were cramps and I would faint when they would get extreme. They have gotten way worse. I now have bad cramps, back pain, pain during intercourse, headaches, thigh pain, bowel issues and discomfort with urinating. I also struggle from extreme fatigue and lack of appetite.
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 constantly misdiagnosed and misunderstood. I was constantly dismissed and told it was all in my head and “it’s just a bad period, this happens every month”. I was always told to take birth control and it would solve my problems. No one ever listened, they just wanted to give me meds and send me on my way.
How do your symptoms/ pain affect your overall wellbeing? Have you experienced any challenges in communicating your struggles to others?
I had to quit my in person job after working there for 5 years. I needed to get a work from home job in order to remain comfortable during the day. I also have bad anxiety when being out in public, thinking I will get a flare up and I won’t be able to communicate during the high intense pain levels. I feel I can’t communicate the struggles I have to family or friends, because they don’t understand and thing it’s a period disease. My spouse is AMAZING. He doesn’t miss an appointment and communicates with me so I never feel alone.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
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Some of my friends try their best, but others just don’t care to understand because I seem “fine” on the outside. I find opening up to my family can be difficult at times, because they don’t seem to understand how uncomfortable this illness makes me feel, how painful it is or how I feel trapped in my own body. They sometimes act like I should be able to do everything I use to be able to do.
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
My Endometriosis specialist has saved my life. If it weren’t for him, I still wouldn’t have a full diagnosis today. He listened to me, heard my concerns and ran every test possible. I found an Endometriosis specialist that I can trust and a chronic pain specialist that I trust.
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
All of the above! Like I mentioned, I had to quit an in person job and find a work from home, in order to remain comfortable during flare ups. My partner and I have had to have serious conversations at a younger age about infertility and what the future may look like for us. He spends a lot of time with me at the hospitals (not ideal date days but we make it work lol). I have to have hobbies that I can do from home for the most part (unless I’m having a good day where I can go out). So I took up reading, that way I can always enjoy something!
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 had to to change my diet for a bit to see what would cause flare ups (then eliminate those items from my diet). I find walking in the fresh air helps me a lot (no running, just walks with my dogs). I also found chronic pain therapy to be the most helpful! It taught me so many techniques on how to deal with my bad days. I was never able to understand how my body reacted to pain and now I do! I’m all natural so I don’t take medication unless absolutely needed.
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?
I loved going to the gym in the past! I would workout and go at a fast pace (which was not good for me at all). I need to listen to my body and know when to slow down or take breaks. I noticed I would get dizzy or crampy during my high intense workouts.
What do you wish you knew earlier in your journey?
To trust myself instead of the doctors (which is sad). I thought they knew everything and would know if something was wrong. I feel let down constantly when I think of my journey and how long it took to get me here.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
I love the Endo community! I am a part of so many Facebook groups. I follow a ton of Instagram and tiktok accounts related to endo and it’s where I find a lot of tips and tricks to help me through my journey! The community means everything to me. They are the only ones who truly understand how hard this can be.
Are there any misconceptions about endometriosis that you've encountered?
Endo is just a heavy period, Endometriosis is always painful and it only effects the pelvic region!
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?
If something feels wrong, always follow your gut. Even if you’re told no a million times, you know your body best. Advocate for yourself because you deserve answers!