I have become very good at hiding the pain and other symptoms that come with it, so I'll take whatever medication I can to try and hide it, and then I will continue with whatever tasks I have to complete. — Chanel, Newcastle
Welcome to "Unveiling the Lived Experiences of Endometriosis Warriors: Endo Diaries," a new blog series where I dive into the lives of other endometriosis warriors. In this series, we'll learn firsthand from individuals who have battled the challenges of this debilitating disease, sharing their triumphs, struggles, and everything in between.
I'm immensely grateful to each warrior and friend, who has bravely stepped forward to share their journey with us. Your willingness to open up about your experiences not only sheds light on the realities of living with endometriosis but also offers hope and solidarity to others facing similar battles.
Meet Chanel from NewCastle, South Africa.
1. Can you please introduce yourself and tell us a bit about your background and what you do?
I'm Chanel, and I'm turning 25 in May. I work in real estate as an administrator for a well-known real estate company. I studied Psychology but had to drop out after my second year due to the constant endo pains and flare-ups, making it difficult to do anything.
2. When were you diagnosed with endometriosis, and what was the journey to diagnosis like for you?
I finally got diagnosed in 2015 after suffering from symptoms that were ignored by doctors for almost three years. I was finally taken seriously after having to go to the emergency room two or three times because of pain and the amount of blood I was losing. At that time, my period had been going on for three months nonstop, and none of the meds were helping. That night, the amazing doctor on duty got me in with a gynaecologist the next day, and she scheduled me for emergency surgery four days after that. I finally got diagnosed with endometriosis and polycystic ovary syndrome (PCOS).
3. How has living with endometriosis impacted your daily life, both physically and emotionally?
Living with endometriosis is really draining — emotionally, physically, mentally, and financially. It's draining my bank account. For the last year or so, I've only had about five days a month max where I feel somewhat normal. I usually joke with my partner when a new symptom pops up that I've unlocked a new feature 😁😁. Every day, I take nine different tablets, not including pain, nausea, or dizziness medication. I feel like a drug addict with all the meds I carry around daily. There are days when I experience a full-body flare-up, and my partner can't even hold me because everything hurts. It all can become so overwhelming, leading to depression and anxiety. Some days, it feels like you just want to give up because everything is just too much.
4. How do you balance managing your symptoms with work or other responsibilities?
I am very fortunate that my management at work understands that I have endometriosis, and because of that, I have days where I struggle to function a little. When it gets bad, and I can't cope, they will allow me to leave work a little early, but I will try my best to manage the symptoms unless I really can't. I have become very good at hiding the pain and other symptoms that come with it, so I'll take whatever medication I can to try and hide it, and then I will continue with whatever tasks I have to complete.
5. Have you undergone excision surgery for endometriosis? If so, how has life been
post-surgery?
I've had just one surgery so far, and for 2 to 2 and a half years, I was able to live like a normal teenager. I was put on Visanne immediately after surgery, which made my period stop completely for that time, and then everything slowly started again. I was supposed to undergo surgery in 2019, but because I wasn't on medical aid, I couldn't afford it. However, I am hoping to have surgery before the end of 2024.
6. Have you encountered any misconceptions or myths about endometriosis that you'd like to debunk?
I was told that I would have to have kids before the age of 26 because that will most likely cure my endometriosis, and if it doesn’t, I can just get a hysterectomy, and my endo will be gone. Both of these options will most likely make it worse, and if a doctor tells you this, I would recommend finding a different doctor. Do your research before making any drastic decisions like this.
7. How do you maintain a positive outlook or find moments of joy despite living with endometriosis?
I'm not going to lie, this is hard to do, and some days it’s just not possible, and that's okay. Some days are just really hard, and it's okay to just survive. You have to mourn the life you thought you would have, the fact that you can't do what other people your age can do so easily. But also, you must accept it and find a way to show endo that you will not let it ruin your life. I'm very lucky to have the support system I have now; they motivate me to not let it get me down. Having someone I can vent to helps me to just get it out of my system, even if it’s just for a little bit, and sometimes emotional support chocolate also helps.
8. Can you share any experiences of finding relief or improvement in symptoms through lifestyle changes or holistic approaches?
Listen to your body; it knows when something is wrong. For me, something that helps, especially when I'm on my period, is fresh cranberry juice and a turmeric shot, especially on the first day. Also, invest in an electric heat pad for when the pain is really bad.
9. How has your experience with endometriosis influenced your perspective on women's health advocacy or activism?
Not enough people are aware of conditions like endometriosis, adenomyosis, PCOS, etc. They think all the symptoms they are experiencing are normal. There is this mindset that talking about periods is taboo. I've been to doctors who didn't even know what endo is because they believe women are overreacting, and it can't be that bad. There's a joke that has been made so many times that: if men had endo, we would have had a cure for it by now. If this affected males, we would have more than 10 endo specialists in South Africa.
10. Can you discuss any challenges or successes you've had in finding healthcare
providers who specialise in endometriosis?
Since my first symptoms of endo started appearing and doctors kept dismissing me repeatedly, I have dreaded going to see a doctor. I would experience a full-blown panic attack just thinking about it, and going to a new doctor was even worse.
I had just moved, so I needed to find a new doctor, but I kept delaying it for about two months because I couldn't bring myself to go. Eventually, I saw an older doctor who advised me to just have a baby, and everything would be fine. I laughed it off because I was seeking different medications. By then, I was on day 42 of my period and completely over it. The medication he prescribed caused a severe reaction in my body, so I had to see another doctor the next morning.
At that point, I joked that I might as well be dropped off at the graveyard because after feeling so sick to the point where I couldn't move without wishing for death, I now had to listen to yet another doctor suggesting I have kids or get a hysterectomy. I walked into the office, and he mentioned he had heard from the other doctor that I have endometriosis. He admitted straight up that he had no idea what that was. However, he spent the night reading up on it to ensure we could find the right medication to make life a bit easier for me. I had to hold back tears that day because it was the first time a doctor had done something like that for me.
I'd love to hear from you! How did you find this journey shared by our brave warrior? Leave your thoughts, words of encouragement, and solidarity in the comments below. Your support means the world to us and to the featured warrior.
Remember, if you're an endo warrior with a story to share or know someone who does, don't hesitate to reach out to me. Let's continue spreading awareness, advocating for understanding, and offering strength to one another as we navigate life with endometriosis.
Signed
#EndoWarriorH and Chanel
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