Your Invisible illness(es):
Endometriosis, Ovarian cysts and Fibroids
Explain about your journey, symptoms and how long a diagnosis took:
Diagnosis time was 3 years.
6 years ago, I had irregular periods, clotting and intense pain where I ended up in the ED (Emergency Department), it was put down to coming off the pill and told that because I was on the pill I wasn’t used to a normal period. After that my cycles were never the same. I was led to believe it was just how it was. 3 years ago, I ended up back in the ED again with the same symptoms, intense pain like someone was holding my uterus in their hands and squeezing as hard as they could whilst my belly blew up like a balloon, clots, irregular bleeding. The first question they asked was how far along am I in pregnancy, of course once they tested for pregnancy, they understood I wasn’t pregnant despite me saying so. Investigations revealed that I had an ovarian cyst on my left side and my gynaecologist suspected I may have Endometriosis. Whilst waiting for surgery I had a few visits to ED for pain but the time I was seen the flare up was over. Turns out it was Endo – stage 4 with deep Endo lesions on my uterus. After surgery we were told to start trying for a family. Three years, IVF and three embryos later we finally have our little miracle daughter, and I am waiting on my next gynaecology appointment (a two month wait) to discuss my Endo as the irregular bleeds, clots, bloating and flare ups have come back more intense than before.
What does invisible illness mean to you?
Suffering yet having to explain yourself because people don’t see it, haven’t’ been through it and don’t understand it.
Has your understanding of an Invisible illness changed over time?
Yes, and I want others to understand that my thinning hair is due to Endo and I’m scared I will lose it all. That my bloated belly is due to Endo and I’m self-conscious about it to the point I hate the way I look, that my infertility was contributed to by Endo and it caused me to think that maybe I’m not good enough to be a mother and completely doubt myself worth, that having a period for two weeks is Endo and because of that the intimacy with my husband has suffered and that Endo could be the cause of our infertility issues.
The worst part of having an invisible illness?
That no one can see what you are going through and because of the nature most people don’t want to hear about it. Due to its impact on our infertility it made people pity me, when all I wanted was to be able to talk and be listened too.
The best part of having an invisible illness?
That it has made me more aware and responsible for what I put in my body and how I treat my body.
What do you feel is the biggest misconception?
The biggest misconception is that it (Endo) is just pain or a bad period. It is so much more, it impacts your mental, physical and emotional well-being, you fear being judge for what people can’t see and don’t understand!
What are your hopes for the future?
I have so many questions around this disease that no one seems to be able to answer. Hopefully one day we will get the answer we want and a cure.
Carly’s husband Jason:
Have you researched your loved one’s chronic illness?
A little bit and Carly has filled me in on Endo.
What is it like living with someone with an invisible illness?
I feel hopeless because I don’t know what to do and I feel like I can’t do anything to help take it away.
The hardest part about your loved one having an invisible illness:
Intimacy is hard because Endo can stop that happening.
What are you most proud of in relation to your loved one:
That she is strong and pushes through and doesn’t let it impact her life too much.
What do you wish others knew about the illness/condition?
What it is like on her life, the pain, the bloating and how it impacts not just her life but our life.
What are your hopes for the future around your loved one and their illness?
That it doesn’t bother her too much, and she can live her life without it stopping her from enjoying what she loves to do.
Carly’s Instagram: @carly_reardon
Jason’s Instagram: @jason_runjumpcrawl
Editors note: Thank you both to Carly and Jason for sharing their story and journey together. It’s always insightful hearing things from a partners perspective.
Scouse Spoonie, Nat xox