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28.06.21

1 min read

WTF: Endometrios med Casey Joe

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Endometrios 💛

Visste du att 1 av 10 kvinnor och personer med livmoder lider av endometrios? Inte? I det här avsnittet av What The Fluff träffar Estrid Casey Joe, här för att dela med sig av sin erfarenhet av att bli diagnostiserad och leva med endometrios. Endometrios är en kronisk sjukdom då vävnad som bör växa i livmodern istället börjar växa utanför livmodern, vilket skapar en rad olika symtom, som till exempel smärtsam mens, smärta under sex, och i vissa fall leder till infertilitet. Casey har hittat sätt att hantera det på som fungerar för henne, men tillägger att det behöver göras betydligt mer forskning för att bota endometrios.

Vad är “What The Fluff”?

Det bästa sättet att skapa förståelse och empati mellan människor är att prata om saker. Dem viktiga, svåra sakerna. Därför skapade Estrid ”What The Fluff”: en IGTV serie där vi bjöd in olika profiler för att prata om svåra saker. Från att bekämpa ätstörningar, till hur det är att leva med en kronisk sjukdom, och vikten av att stötta unga transpersoner - våra gäster har delat med sig om sina personliga erfarenheter kring en mängd olika ämnen, och hjälpt oss skapa en trygg miljö att prata i.

Klicka här för att läsa en transkribering 👀

Hi, everyone, my name is Casey Joe and I am a beauty, fashion, and lifestyle content creator located in Atlanta, Georgia, as well as an endometriosis advocate. And I am here with Estrid as part of the What The Fluff series to talk to you guys all about endometriosis. Now, if you do not know what endometriosis is, it is a chronic illness that affects 1 in 10 women. I was diagnosed with it in 2018 after showing symptoms since I was nine years old. I am now twenty-six. On average it takes about seven to 12 years for someone to be diagnosed with endometriosis and for it to properly be done you actually have to get a surgical procedure done.

Endometriosis is basically when there is a lining that grows on the outside of the uterus that causes infertility, it causes really painful periods, very uncomfortable sex, and honestly, a whole bunch of issues. Everyone's symptoms are a little bit different. About 50 percent of the women with endometriosis do have infertility, so in order to conceive a baby, they have to do things like IVF. The reason why I actually got diagnosed with endometriosis is because I notice my stomach actually growing larger and larger and getting harder and harder. After going through multiple doctors since I was about 16 years old, I was always pushed away. I was always told that my irregular 10 day long periods every two weeks that were super heavy were completely normal, that that was a part of me and that's just what my body wanted to do. It wasn't until this cyst that was sitting on my ovaries grew to the size of a watermelon that the doctor actually took it seriously and noticed that I had to do something. I was actually misdiagnosed with cancer at first, which is something that is commonly done to women with endometriosis until they have the procedure done basically.

It was the scariest time in my life. When I first went to the doctor, it was about January 8th. I had my surgery procedure on February 12. So things were moving very, very quickly. I had MRIs done, multiple internal and external ultrasounds. It was the most uncomfortable situation to be in, not only physically but mentally. Having multiple doctors check me and be in an area they had no business being in. Well, it was their business, but I didn't want them to be in.

And it was just a lot. I do have to go see a doctor every three months to monitor this cyst because they didn't completely remove it, because if they were to do that, they would have to remove my ovaries, therefore, I would not be able to have children. Since I'm twenty-six with no children, they definitely didn't want to do that. Back in the day, women actually had to get hysterectomies in order to cure endometriosis, but technically there is no cure for it. They found ways to deal with it without having to do that procedure. But it's unfortunate that a lot of women are stripped away from the opportunity to be a parent or if they're already a parent, to have more children because of this kind of illness that no one seems to talk about.

After being diagnosed with it I knew that it was my duty to discuss endometriosis on my platform. As much as I love makeup and hair, I just felt like I had no other choice because when I was diagnosed with it, I didn't even know how to pronounce it. I didn't know how to spell it. I didn't know anybody else with it. And finding out that 1 in 10 women have this, I'm like, this is so common. I don't understand why no one is talking about it. I feel like the more we discuss it, whether you have it, I encourage you to talk about it or maybe a friend or family member, men out there, if your girlfriend has it, your mom, your sister, whoever.

I think if we were to discuss it a little bit more, more research would be done and they'll just be more awareness to it. We have to find ways to cope with this. One positive thing that came out of having endometriosis is the community, meeting all these women. I've met so many amazing women, especially during Endometriosis Awareness Month, which is March and wear your yellow, OK? March is coming up. But I've met so many women and we are able to share all of our tips and tricks on how to cope with this chronic illness and how to deal with these flare-ups when we are uncomfortable and in pain.

Some ways that I like to deal with it is red raspberry leaf tea with some nettle, that helps tremendously as well as eating bananas. I also like to only use organic feminine care products. I've noticed a drastic difference when you're using pure cotton feminine care products opposed to the things that have chemicals in it, that will trigger your cramps. Especially if you're using it so often, you don't know what those chemicals can do to your body in the long run. I also have completely changed my diet because of this.

I stopped eating meat, so I am a pescatarian and I did cut down significantly on dairy as well because the hormones in these foods and dairy products can cause my cyst that is still there to grow. I do still have my cyst because if they were to completely remove it, they would have to remove my ovaries and of course, like I said, they didn't want to do that and I didn't want them to do that. So I sacrificed eating meat and I have noticed a drastic difference. My period has shortened. My cramps are not as bad as they used to be.

While I do still have my days where I'm just completely uncomfortable and in the worst pain, it's a lot easier to cope with now when I've done these steps and I feel better about doing it this way because then I can minimize my pill intake, like I don't have to take so much medication. One thing that a lot of people don't discuss about endometriosis is the mental trauma that you go through as well as the physical. When it comes to the mental aspects of it, it's difficult when you're someone who likes to be around friends and family or takes their responsibilities very seriously as you should.

And there's a lot of times where I will start off thinking, OK, I'm going to get this done and this done and I'm going to do this, or I might make plans with my friends. It might be a birthday party or a baby shower or just like a girl's night out. And I can't do these things when the day comes because I'm in so much pain and I can't get out of bed. And that really does affect me. There's a lot of times where I'm just in bed crying because I just want to be able to do my everyday responsibilities. I want to get up and film and I want to do my makeup and I want to interact with people.

But I'm just so uncomfortable that I can't move. I always have to kind of remind myself that I have no control over this. This is a part of me and I can't beat myself up for not being able to take care of things. It's only going to be maybe a couple of days of pain and then I'll be able to get right back to it. And although I'm not in a relationship, nor am I trying to conceive a baby any time soon, it does get to me that I know my journey won't be as easy as some people. I know that it might take a couple of years, even after I'm married and things like that, to conceive a baby.

I do have faith that it will happen, but I just know that it's going to take a little bit more patience. And sometimes that does bother me because I'm hoping that whatever man I end up with in the future is super understanding of that. Unfortunately with endometriosis, you also have to get multiple surgeries sometimes, and that takes a toll on you. When I first got my surgery in 2018, I did go through a really, really dark time. I felt like my body wasn't my body. I had no control over it and that I was literally being betrayed by my body.

Like, what else do you want from me? I'm trying everything and it's just constant pain. I was in and out of the E.R. and there was one point where the entire lining of my uterus felt out of me at once and I was at work and I literally had contractions. I'm assuming that's what it was. But I couldn't walk. I couldn't talk. It was like every couple of minutes because my body was trying to pass this entire lining out.

It was so uncomfortable. It was so painful. And I am not someone who is on birth control. I personally don't think it works well for me. And that is the only way they tell you you can deal with endometriosis when you're at the doctor, they just put you on some type of birth control and call it a day. And my body completely rejected the birth control that I was on. I was on the NuvaRing that has to be inserted in.

And I had allergic reactions. I had constant yeast infections. I could not be intimate because of the pain. I would literally be left crying in pain. So any form of intimacy was out of the question. It definitely took a toll on me and it was something really difficult to deal with. But I'm always someone who tries to be positive and look on the brighter side of things. And I know that there are ways to cope with it and I feel like there would be better days to come. And that is why I find it so important to share what I know and just try to be there for the community. Even if people don't want to talk to me about it, I'm hoping that whatever I say, they can take it and hopefully help someone, help somebody that is close to them. So, yeah, guys, that is my endometriosis story. I hope that I taught you something, and if you never heard of endometriosis, I encourage you to do your research on it. You never know if someone important to you comes out and tells you that they have it.

So I just want to thank Estrid so much for having me as part of the What The Fluff series to share this. And I hope to see you guys soon, bye!

Nu får du belöning när du bjuder in vänner! Ge , och få genom att bjuda in vänner som inte redan är del av Estrid-familjen.