Here are a few truths and false assumptions we want the world to understand.
1. Misdiagnosed and misunderstood.
YES, even to this day. There are many challenges in diagnosing endometriosis, as surgery is the only definitive way and it is often a "last resort".
2. Physically and mentally exhausting.
Symptoms vary but their impact on sufferers' lives, relationships and mental well-being is not to be taken lightly.
3. Manageable (not curable) with interdisciplinary care strategies.
These take a long time to figure out and self-care can almost become a full-time job. What works well varies from person to person but nutritional changes, physiotherapy, osteopathy, acupuncture, yoga and other types of exercise and some medications can help.
4. Highly variable
Endometriosis is puzzling to doctors because of its high variability; the degree of pain experienced is not related to the size or locations of the lesions.
Endometriosis is not:
1. Just a painful period.
Many women experience pain at other points in the cycle, such as, but NOT limited to, ovulation. Some have pain almost all the time.
2. Just pain.
While symptoms are not the same for everyone, many patients experience fatigue, nausea, bloating, digestive issues, fertility complications and negative effects on mental health. Some have no symptoms at all.
3. Just limited to uterus and ovaries.
Endometriosis can be found on the surface or inside organs in the abdomen / pelvis, but also on abdominal walls, ligaments, muscle tissue, nerves and even up in the diaphragm or the lungs.
4. Always equated with infertility.
About 60-70% of women with endometriosis have NO trouble conceiving. It depends on many factors, among them the stage of the disease and whether intervention occurred early.
5. Curable through a hysterectomy, pregnancy or menopause.
A hysterectomy can alleviate pain from uterine diseases like adenomyosis but not endometriosis, especially since endometriosis can be anywhere. Pregnancy may temporarily suppress symptoms but should never be recommended as a "cure". Menopause may prevent new lesions from forming but may not remove the pain.
One of Alba's missions is open up the conversation about endometriosis in a way that is accurate. Follow us over time as we interview health professionals and share numerous resources from a range of sources.
"I can do things you cannot, you can do things I cannot. Together, we can do great things"
- Mother Teresa.
If there is one thing that we learn through our battles against brutal realities like endometriosis, cancer and infertility, it's that there is much solace and strength to be found in others who have been on the same path. There is a great deal of isolation, frustration and anxiety that could be felt during physically or emotionally difficult days. But there is also something beautiful in the thought that others - strangers, all around the world - have their hand lovingly on our back.
A year ago, I never would have believed you if you'd told me I would talk so openly about endometriosis, cancer and infertility. That I would write so openly about it, in a book or on social media. That I'd try to start a movement, finally joining in on the conversations that my fellow "endo sisters" have long started before me.
I want to hit these messages home for those who watch from the outside. I also want to uplift those who live it from the inside. Not through my voice but through our collective voice.
Tomorrow is March 1st, and so begins endometriosis awareness month. Let all the campaigns remind you of the great things we can achieve together, and that you are not alone.
Welcome to Alba's "Shining Light" blog
Follow us for spotlights on our members, featured stories about courageous individuals around the world, photographic portraits, interviews, resources and tips on a range of topics related to women's health, mental health, chronic pain management, nutrition and more.