Various symptoms of Endometriosis
Michelle had suffered with the pain associated with Endo long before she was diagnosed with Endometriosis when she was 21. Now 52, she lives in Bury, Lancashire in the UK. Her story is one of the more dramatic ones I’ve read so far:
Michelle’s Journey: I had excruciating period pain from being 16. My doctor at the time told my mum I was hypochondriac and could not take pain. We all believed him.
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Supraneeti was diagnosed with Endometriosis about a year ago, and has shared her story with us today. She lives in London and is finding creative ways of expressing herself, our disease, and it’s effect. Her story, and music video, follow:
I am a fellow Endo-sufferer or shall we say survivor?! I am also a film director and an actress and after being in practical house arrest for more than 5 months, I decided to make a short film in style of a music video. The most difficult part of my recovery has been the stigma attached to anything to do with lady parts.
Continue readingScanxiety…? It’s a term frequently used in the cancer community. An overwhelming sense of anxiety before a scheduled scan to check if your cancer has come back. Am I comparing cancer to Endometriosis? No. I’m simply stealing their well-coined term.
For any of us Endometriosis sufferers who have had any type of relief either from surgery or medicine, there’s always an underlying fear that it will recur at any time. The doctors tell us there is no cure. They tell us it will grow back. There are a few doctors and patients out there who swear that if you remove all of the Endometriosis during an excision surgery, it will not return. But even the best Endo surgeons out there have documented cases of their patients having recurrence of Endo growth.
Perhaps some get lucky and it doesn’t return. But for many of us, it does.
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Two weeks ago a paper was published in the Acta Veterinaria Scandinavica journal. The first reported case of an Endometrioma in a dog. A German Shepherd, to be precise. Now don’t be too surprised; primates have been found to develope endometriosis: gorillas, monkeys, and baboons. But this is the first time captured in literature that an animal has developed an Endometrioma. What’s that? A blood-filled cyst consistent with Endometriosis, sometimes referred to as a Chocolate Cyst.
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Suicide and Endometriosis has been a topic heavy on my heart for the past seven months. Am I suicidal? No. However, last year there were several EndoWarriors who committed suicide. And this year a few more have. Too many. But can easily understand their hopelessness: pain; no cure; the potential for multiple surgeries; regrowth; Western medicine, alternative medicine, natural supplements, snake oils, relief, recurrence, and the cycle starts all over again. Not to mention a sense of being completely alone, misunderstood, misdiagnosed, mistreated by physicians, mislabeled as drug-seekers, fakers, and crazies.
I’ve been trying to think of ways that I can help. In a small way. Or a big way. And I’ve fallen short on ideas… But today I’ve learned of a group where Warriors with suicidal thoughts can go for help. An old-fashioned phone-line group. Yes, that’s right. You can email, PM, or call someone if you need to talk. Talk with someone who is in your shoes. Who knows what you’re going through…because they’re going through it, too. Understand that you are not alone, and understand that people want to listen. And help.
Continue readingA friend asked me to look up any connections between Endometriosis and Cesarean Sections. So, here we go. Lots of science in this one! Some studies show that less than 1% of women who undergo a cesarean section end up developing incisional Endometriosis (Endometriosis in or along the c-section scar). However, that tiny little 1% number has a staggering amount of studies involving a lot of women who suffer from this form of Endo.
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Another rare location I’ve heard can be invaded by Endometriosis is our brain. Yep. Our gray matter. But, again, curiosity led me to find documented cases, symptoms, and treatments. So I’ve scoured the interwebs for just such a thing, but it was difficult to find much of anything! This is not meant to scare anyone, or to create an Army of Hypochondriacs. It’s meant to let everyone know that, yes, it does happen. And this is what to look for…and what can be done for it..
From what I can find (which was very, very little), it appears that symptoms may include headaches or seizures. As of 2010, there have only been 3 documented cases of cerebral Endometriosis (at least in English-language literature).
Let’s get down to the nitty gritty science!
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Tabitha had suffered with the pain associated with Endo long before she was diagnosed with Endometriosis when she was 26. Now 30, she lives in Franklin, TN, and her life may be drastically changing due to her ongoing symptoms.
Tabitha’s Journey: I say I was diagnosed at age 26 but the pain and other symptoms have been treated long before that. I’d say it all started at age 23. But the severe back pain started 2 years ago. In the thoracic region around my T8 and T9. It hurts so bad at times that it’s hard to straighten myself up. I have no diagnosis yet but drs say there’s nothing wrong with my spine as far as anything herrniated and no slipped disks. So what else can it be?
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Many women with Endometriosis also suffer from infertility. Why? Well, that very question spawned today’s research…
It is believed that Endometriosis is present in 24-78% of infertile women (depending on who you ask). That’s a huge figure! Infertility associated with Endometriosis may occur at any state of the disease (I to IV; mild to severe). It’s believed that the Stage of Endo may effect the rate of infertility: people with “mild” Endo have been known to conceive 2-4.5% per month; people with moderate to severe Endo drop to less than 2%. Normal, fertile couples conceive at a rate of 15-20% per month. It’s a big difference all across the board.
The medical and scientific community do not have answers as to why Endo may make women infertile; only theories:
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Bloomin' Uterus 