Adenomyosis and Fibromyalgia: "I just couldn’t face being told “everything is fine” or “normal” again!"
Published Jun 21, 2023 • By Lizzi Bollinger
Today we are talking to Charlotte, who lives with adenomyosis, fibromyalgia and hypermobility. Charlotte walks us through her diagnosis process, highlighting the importance of taking the patient's preoccupations seriously. She explains how lonely it can feel, when diagnosed with chronic illness.
Charlotte describes how she manages work, family and health management. Today she is advocating for fibromyalgia and adenomyosis awareness.
Discover her story in this interview!
Thank you for agreeing to tell your story to the Carenity audience.
First of all, could you tell us more about yourself?
Hey, my name is Charlotte and I work full-time at an aviation company bidding on contracts, and I have my partner and his kids at home (half the time)! We recently moved into our ‘forever’ home, with our two Frenchies. I love to travel, see new places and taking pictures of my home and adventures.
Could you tell us about your chronic illness(es) When you first noticed symptoms? How did you and/or your parents react?
I started noticing my symptoms get progressively worse from about October 2019, and pushed to have it investigated further. My parents were so supportive and helped me go privately to finally get answers. Which is when I was diagnosed in mid 2020 with Adenomyosis. I was later diagnosed also with Fibromyalgia and hypermobility.
How long did it take to be diagnosed? How many doctors did you see? What tests did you have to take?
I used to suffer from “tummy problems” a lot, but had been on birth control pills since I was 16, so a lot of my symptoms were masked. I noticed issues start around when I was 15. I look into the possibility of having Inflammatory Bowel Disease (IBD), but was told I just had Irritable Bowel Syndrome (IBS). It wasn’t until I was about 23, when I came off the pill, that things started to flare up more.
How did you feel when you were diagnosed? Were you expecting it? Did you understand what was happening to you? Were you able to receive all the information you needed to understand the disease?
Firstly, relieved that it WAS a problem. This sounds crazy to say, but I just couldn’t face being told “everything is fine” or “normal” again! But once I found out about Adenomyosis, and how little information there is out there, I was concerned about I was supposed to deal with this seemingly alone. I was able to find more information about Fibromyalgia, but unfortunately still, very little actual help or suggestions on how to handle it. I was expecting a diagnosis of fibro, but for adeno, I hadn’t heard of it.. only endometriosis, which would have been less of a shock as my symptoms had made sense.
What is your current health management regime? What do you think about it? What are your treatments? Are you satisfied with them?
I am currently in a really good place managing my symptoms. I have tried so many things and have determined that I personally prefer more “home remedy” holistic approaches. I am currently taking Chinese herbal medicine and it has helped more than anything else I have tried before. I am rarely having pain once a week, not like before when it was daily.
What is or has been the impact of conditions on your schooling, professional or social life? What do you think is the most bothersome part of your daily life?
I have a fear of overbooking myself, committing to too much, resulting in a flare. I must juggle work, my condition and a social life. My social life usually takes the hit. Financing my treatments for my condition takes precedence over spending for social activities.
You are talk about your medical story on social networks. What prompted you to do so? What messages do you want to convey to your followers? And what is their feedback?
When I was diagnosed with Adeno, I had never heard of it. I couldn’t advocate for myself because I did not know about the condition. I think if someone finds out about Adeno from social media, it may help them in their journey. Personally, it helps me feel less alone, because it is such an isolating experience that others just cannot understand, and if I can make just one person feel that they aren’t alone, I see it as a win. The feedback is 99.9% gratitude/positive for the stories that I share and I speak to people a lot about their journeys which in turn helps me find out about new options to try.
You have a corporate job, what is it that you do? What are your plans for the future?
I work in aviation, I bid on contracts to support airlines with their component support, repairs, and supply. I absolutely love my job and it is a career for me. My plans are to stay in the industry and develop my career further, and hopefully move up the ladder as I go.
What advice could you give to Carenity members also living with chronic illnesses?
If you can find someone to connect with, it is invaluable to have people that understand. Friends and family can only sympathize. Personally, I have found that online/social media has taught me more than any website or doctor has been able to. The way you manage your pain will be different to anyone else, so you need to work on finding what helps YOU.
Any last thoughts to share?
I send my love and thoughts to anyone battling chronic illness, you are not alone and I hope that you are able to find something right for you, deserve it!
A big thank you to Charlotte for this interview!
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Take care of yourself!
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