I don’t fear retribution, but in my previous workplace, they knew I was in and out of the hospital for surgeries, and I was treated differently, even though my work stayed at the expected level. — Greta*, Johannesburg
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 Greta* from Johannesburg, South Africa.
1. Can you please introduce yourself and tell us a bit about your background and what you do?
I am a 31-year-old working in the tech industry abroad, specifically in artificial intelligence. I have two degrees, but they are not tech/computer-related. I would say I am driven but at the moment, I am trying to figure out what the next 9/10 years of my life will look like.
2. When were you diagnosed with endometriosis, and what was the journey to diagnosis like for you?
I was diagnosed with endometriosis in 2021. I had been experiencing symptoms of heavy periods for most of my life, and when I started having excessive pain in my 20s, no one seemed to notice or investigate further. The journey has involved a lot of advocating for myself, with no one listening or believing me. I would say if it weren't for my kidney complications, nothing would have happened—the urologist had to perform my biopsy during my surgery just so the gynaecology department would take my concerns and the MRI showing a mass seriously.
I underwent a laparoscopy, and they said they didn't find anything after the Visanne had shrunk the mass (thank God!). So, I think it made me seem more like a liar. I was then told that I should have children, and this would be over. I've accepted that I need to find new doctors I can trust, but every week is a journey.
3. How has living with endometriosis impacted your daily life, both physically and emotionally?
I don’t think I am the same person I was before I was diagnosed. I started noticing my symptoms in context and wondered why I waited so long and didn’t speak up more. Physically, my body is still recovering from a lot of trauma (this is true emotionally for me as well; the kidney complication could have killed me if it hadn't been found by accident).
I feel my mortality, but I am alarmed by it because I could be alive, and my quality of life can deteriorate in a flare-up very quickly. I am trying to figure out what my real life will look like in the future because having endometriosis comes with a number of lifestyle adjustments and financial commitments.
4. How do you balance managing your symptoms with work or other responsibilities?
To be honest, I am not fully balanced, but I have found that giving my body space to communicate with me has helped me avoid flare-ups for a couple of months now. If I need to sleep, then that is what I will do, etc. Unfortunately, work and life don’t wait for my body to get in alignment, so I am still seeking that balance. I am getting better at knowing when to push myself and how hard, and when to stick to the plan!
5. Have you undergone excision surgery for endometriosis? If so, how has life been
post-surgery?
Life post-surgery has been better. I have found a generic version of Visanne that makes me feel normal, and that has been a game-changer! But that was recent. The pain has improved, but the flare-ups are still intense, so I have to monitor my pain closely and always have pain meds ready. I have more anxiety now. I was never an anxious person, but being on constant alert for the last few years has started to burn me out. However, I feel more at peace with the new meds.
6. Have you participated in any clinical trials or research studies related to endometriosis treatment or management?
No, which is a shame because I was used for one by my urologist. It turns out it is quite rare for an endometrial mass to attach to a kidney and essentially grow and impact it.
I feel like our concerns and experiences are not documented. It wasn’t until Visanne and its generics started going out of stock that I realised there are A LOT of us in out there with endo, and yet we’re almost invisible.
7. How do you approach/ have you approached conversations about family planning and reproductive health with your healthcare providers?
It’s really tough. I have always been child-free and wanted to remain that way. My doctor(s) never agreed, and now that my fertility is not guaranteed and complications are expected with my endo, it feels like there is more pressure because "who knows?"
The most frustrating thing is, I get told repeatedly (because I don't have children) is that it can cure my endo and I am choosing this suffering. I have stopped discussing this with the doctors because if my husband and I decide to have children, then we will - I can’t let my fear of endo control such important decisions in my life.
8. Can you share any experiences of seeking accommodations or support in the workplace due to having endometriosis?
I have not disclosed my endo to my work because it is none of their business 🙂. I feel like if I need to see a doctor, I will get a sick note, but my whole medical history is too much and too personal to share. I don’t fear retribution, but in my previous workplace, they knew I was in and out of the hospital for surgeries, and I was treated differently, even though my work stayed at the expected level. I am hoping I never have to disclose because that would mean something serious is happening with me.
9. Can you discuss any experiences of finding relief or improvement in symptoms through medication or surgical interventions?
This may sound insane, but raspberry leaf tea made such a difference when I had flare-ups and needed a natural approach. I have worked hard to avoid taking pain medication because I felt like I was increasingly becoming dependent on it and increasing my intake. I have seen the most progress with my diet and getting more sleep. I have not met my goals, but I think exercise will be next on my list to find more relief.
10. How do you manage fatigue or low energy levels associated with endometriosis?
I adjust my diet. It has taken me about 3 years, but I can modify my diet based on how my body feels. Sometimes I need comfort food or sweeter things, and other times I should be eating more fiber and low-glycemic foods. I have tried supplements, and those have not really worked for me. The most effective approach for me, though, is just slowing down during that week and doing as little as possible so I can sleep or rest. But that is a luxury, and most of the time, I can't stop living so I can rest.
In learning Greta's personal story about her journey with endometriosis, I found myself deeply resonating with many of her experiences. It's crucial that we share these stories not only to remind other warriors they're not alone in their battles, but also to raise vital awareness about endometriosis. By sharing our experiences with medical practitioners, friends, family, colleagues, and partners, we can collectively work towards better understanding and support for those of us impacted by this condition.
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 Greta
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