So, like a lot of other people with Endometriosis I’ve done a few things : 1) Lupron Depot injections, 2) NSAIDs, and 3) birth control pills. Each of these medications, and any type of hormone treatments, can make a person susceptible to sunburns or sun sensitivity. This past weekend I was out and burnt the tops of my hands, and man did it happen quick and did it itch!! Ugh. Which got me curious: why does it make me more sensitive? I remember reading in my Lupron and birth control packets about the sun sensitivity warning. But what’s going on with my body? Time for research!
Continue readingMedications
Share Your Story : Supraneeti
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 readingEndometriosis : An Economic Machine
There are (at best guess) 176 million people born with a uterus worldwide who suffer from Endometriosis. And it’s estimated that 5 million in the United States have Endometriosis. 1 in 10 supposedly have, or will have, this disease. One. In. Ten.
An incurable, recurring disease which causes pain and infertility, among many other symptoms. A revolving door disease which the “Golden Standard” of treatment is either constant prescription medications, or surgery, or both. And, once removed, it will more than likely grow back and cause the same pain and symptoms, sometimes much worse than before. And the only tried and true way to diagnosis the disease with with surgery!
So one thing hit me today. This disease is a driving economic force! What costs are associated with Endometriosis? As I live in the USA, my curiosity was toward the United States prices. If you live elsewhere and are curious, I encourage you to figure this out. For all of you living in the States, let’s find out together!
Continue readingCataracts? …
So today I had my two-year eye exam. You know: you go in ever two years to have your eyes checked and your eyeglass prescription updated.
About 8 years ago I learned that I have a benign cataract in my left eye, located just to the outside of my pupil. My doctor back then told me it’s benign, it doesn’t grow, it just sits there a casts a shadow. However, it’s not visible to me, and it will never affect my eye sight. She surmised I was born with it : it may be due to my premature birth (I was 3 1/2 months early) and have likely had it my entire life. Every two years since, I’d been told by the next doctor that I had a benign cataract on my left eye, and that it was just sitting there, doing nothing.
Continue readingLife After Lupron
So once or twice a month, our little group of EndoSisters gets together for food, drinks, hugs, laughter, tears, and support. Tonight was one such meeting. And they’re always amazing, regardless of how many, or how few, people are able to attend.
One of my fellow EndoWarriors brought up an incredible question this evening, which inspires tonight’s blog:
Continue readingWhy isn’t there more info out there about life AFTER Lupron Depot? There’s plenty out there about life before and during, but not after.
Shoulders for Sisters : Suicide Prevention
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 readingNew Pill? Viagra for Women!
(This post was originally published on June 8, 2015. As of April 19, 2018, it was updated to include new information)
In 2015, the FDA advisory committee was pushing for the approval of a new drug, Addyi (aka flibanserin), which is being hailed as “viagra for women.” The drug was approved on August 18, 2015. Many women suffer from a low sex drive for many different reasons. I myself had suffered with it since my Lupron Depot injections, which were immediately followed by a continuous birth control. My libido was nearly non-existent for almost two years. Since I stopped taking birth control pills, however, it returned full-force!
But what is this drug? What are the potential side effects? How long were the clinical trials? All of these questions come running to the tip of my tongue – will the pros outweigh the cons? Will there be interactions with my birth control pill? Less questions, MORE RESEARCH!
Continue readingEndometriosis & the Brain
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!
Continue readingReader’s Choice : Can Men Get Endometriosis?
Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THE question…), “Are there any reports of men having Endometriosis?” I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses. So, we have our topic for today!!
In rare cases, cis-men develop Endometriosis. Transmen also suffer from the disease. But we will focus on cis-men for this blog: it appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment. Here’s what I could find:
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