Endometriosis and Me: an interview with @Lilyfae00
Welcome to the inclusivity diaries where we interview people who have disabilities and conditions, raising awareness within the 7Cups community. Today I’ve got the pleasure of interviewing a member named @Lilyfae00.
Q: Welcome Lily, to this interview, let’s start with an icebreaker first of all, so one of my favourite questions I like to ask is, if you were the weather, what would be your forecast right now?
A: I feel like I am a cloud with a little rain, feeling the warmth of the sun behind me and witnessing a rainbow emerging. :D
Q: Awesome, right now I would say I’m quite sunny but cold, brrr, hopefully, I can warm up soon! How has your week treated you so far?
A: My week has been going well, with ups and downs.
Q: Today we’re talking about your conditions you’d like to raise awareness, because obviously when we’re online, we can’t see what you go through on a regular basis so I would love to get to know you better, why don’t you start with letting us know what disabilities or conditions you have?
A: I have Endometriosis (which also causes central sensitization, migraines, chronic pelvic pain, and gluten and soy intolerance for me)
Q: You mentioned you have Endometriosis, in your own words for those who have never heard of it before, what is it?
A: Endometriosis is a condition where tissue similar to the lining of the uterus grows outside of the uterus, it can attach to other organs and causes lesions, cysts, scarring and inflammation. Endometriosis has different stages from superficial Endometriosis to deep infiltrating Endometriosis. (The symptoms do not always correlate to the stage of the condition, someone with superficial Endometriosis can have severe pain while someone with deep infiltrating Endometriosis may not experience any symptoms at all)
From experiencing symptoms to getting an actual diagnosis took 8 years because doctors normalise the symptoms and the only way to officially diagnose Endometriosis is through keyhole surgery (laparoscopy).
Q: Is there any treatment for Endometriosis?
A: Endometriosis is chronic and doesn’t have a cure yet, because the cause of Endometriosis is unknown. Treatment mostly consists of (clean up) surgery and hormonal treatment.
I have had a cleanup surgery with no success, I tried different kinds of painkillers and hormones all with little to no effect and I have been to 3 different hospitals for treatment.
Q: Is there anything else you would like others to learn about Endometriosis?
A: I think it's important for people to know how it affects someone's life, that it's not just painful periods and that it can be very isolating and life-changing, one day I can be fine and walk around happily when the next day I’m in excruciating pain, unable to walk or do daily tasks. A lot of people who just learn about Endometriosis underestimate the condition, Endometriosis can even result in the removal of organs. It’s chronic and doesn't have a cure, even with surgery and treatment Endometriosis can still affect your life daily. If you know someone who struggles with Endometriosis or you are struggling with it yourself, know that you aren’t alone.
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Note: The interviewee wanted to have two parts to this interview, this is part one of two, if you’re interested to read the second part feel free to comment here and I will tag you on there when it is ready.
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If you are interested in participating in this series, please fill out this form. We’re all about wanting to raise awareness with the 7Cups community and if you feel happy educating us, we’d love to hear from you! You can also use the link above to apply to be an interviewer, we would appreciate you helping us out!
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@FrenchMarbles ooh i see you've upgraded the format of these interviewss. *rushes to edit my questions for the next interview so they can be as spiffy as yours :p
@Lilyfae00 thank you thank you thank you Lily. I can not thank you enough for doing this interview, and sharing your experiences. Endometriosis really deserves a greater representation, because so many females go undiagnosed because period cramps and stomach cramps have become so generalized for women.
I know there are different types, and everyone will experience symptoms differently. Thank you for saying that, because I often wonder if I have to act a certain way before I could consider having endometriosis.
As a person who's suffers horrible period cramps coupled with stomach ulcer, pain is a very common language to my body. I hope I'm able to get tested, I know how women are shun by doctors because they think every symptom we have has to be related to periods in some way.
I do hope to learn more from you in the next part of the interview for sure. I know coping with endometriosis is difficult and challenging, I send you all my love❤️
@FrenchMarbles I agree with @MyNameIsNicole....though I might steal some structure for my own document :)
@wonderfulRainbow817
Heeeey, I'm just experimenting! Who knows, next I might magically appear out of the screen filled with marbles :P
@wonderfulRainbow817 sameee
@MyNameIsNicole
Can you put a notification out for this, my fellow co worker said she didn't get notified and she loves this series.
@FrenchMarbles okay, give me some minutes
@FrenchMarbles it's up
@Lilyfae00
Lily: I am very sorry for all you have gone through with Endometriosis. I wish you and your doctors find soon a way to deal with it and stop all the pain and damage it causes. I congratulate you for explaining to the whole community your condition, for the education and compassionate awareness of us all.
@FrenchMarbles
Thank you for conducting this valuable interview. Please tag me in the second part.
@FrenchMarbles Wow! I got to learn something new. Thank you for the interview!
@FrenchMarbles @mynameisnicole @lilyfae00
Yay, one of the best interview series is back!!
Thank you Marbles for conducting this interview, I'm excited for the next part 😮 And I agree, the format looks great! *steals for my own series* Shameless self promo!! (The link button isn't working so you're getting the whole thing in its full glory.)
https://www.7cups.com/forum/CommunityProjectsEvents_184/LivingwithLeaders_2290/
Lily, a ginormous thank you for sharing your time, energy and knowledge with us. This is definitely not something most people are familiar with, and even for those of us who are (I have PCOS) it's always great to refresh and learn from other people's point of view. So big round of applause for you, you are majorly appreciated 💚
@WarmLightXO not you tagging me because you just loove me reading your replies😃
Living with Leaders is also my favourite series so thank you for the shameless ad :p
Don't steal our format, it's copyrighted
@MyNameIsNicole
...."Our format" - hmmmm , oh yes @WarmLightXO beware, nicole can be weally scary, raaaawwrrrrr
@FrenchMarbles thank you for testifying how scary i am, hopefully @warmlightxo gets terrified by my loud rawrrrs (hehe)
also frenchie it is our format, i told you i was using it😃 (check out my post on wednesday and see haha)
@MyNameIsNicole
I usually ignore you whenever I see your name, [kidding!] oooh aren't you proud, I finally posted the POTS one. I feel so bad. Actually, it's quite funny, so this morning I was chatting with @Chevy81 and I was saying about how I'm on top of everything, and then I worked HARD on reformatting the interview and got that submitted.......only to realise I copied and pasted the wrong interview, so I had to get @AffyAyo to delete that one. What a morning! Anyway, I'm happy it's done now. I hope you're doing okay though :D
I really look forward to the next part!
The way women's healthcare is done is shameful at times. It seems like endometriosis is a fairly well known condition, yet diagnosis of it can take way too long and doctors tend to just think that a lot of symptoms are normal when they aren't!
@AffyAvo
Yeah, 1 in 10 woman have endometriosis, we really just need more research and funding so we do get a cure and we dont have to just live with it. Its a shame doctors (even some endometriosis specialists) normalize symptoms or dismiss them. And on average it takes woman 8 years to finally be diagnosed. And even when they are diagnosed fighting to be taken serious and fighting for surgery or whatever is so common. Its frustrating.
@FrenchMarbles
It’s a tough and very painful condition. I really hope scientists find the cure to it.
@FrenchMarbles and @Lilyfae00
Thank you for bringing this issue to our attention. 💜 It's so sad to see that yet again, women's health issues aren't taken serious. There is a long history of neglecting female anatomy and health. And so many of us are suffering more than they would have to otherwise.
Lily, your health issues seem incredibly tough. I hope you will be able to find treatment eventually. And I wish you strength and all the mental health necessary to deal with this. You are so brave to speak up! Thank you for sharing! 💜