Tonight I am feeling sad for an EndoSister. She posted on a forum I frequent; she had a hysterectomy less than a year ago, after fighting endo for years and years - but the endometriosis is back.
And if that weren't bad enough, she's dealing with friends and family who doubt her, who think she was cured by her hysterectomy.
This has to stop.
Empowerment, awareness, education - and fight for a cure.
Showing posts with label endometriosis. Show all posts
Showing posts with label endometriosis. Show all posts
Saturday, March 7, 2009
Wednesday, March 4, 2009
Support
Support is so important when you have endometriosis! Talking with others who understand all too well what this disease is like can be enormously comforting - and empowering.
One of the support sites I recommend is WeAreEndo.org.
One of the support sites I recommend is WeAreEndo.org.
Tuesday, March 3, 2009
Why we need to raise awareness about endometriosis
This press release from Endometriosis UK says it all:
ENDOMETRIOSIS: SURVEY SHOWS TEENS AND YOUNG WOMEN TOLD TO 'GRIN AND BEAR IT '
ENDOMETRIOSIS: SURVEY SHOWS TEENS AND YOUNG WOMEN TOLD TO 'GRIN AND BEAR IT '
Monday, March 2, 2009
Now that's what I call raising awareness!
I just recently came across this story and am very impressed... Diana Wallis, the Vice President of the European Parliament, is running in the London Marathon in April - and she's running for the World Endometriosis Research Foundation! Diana is an endometriosis survivor herself and is determined to raise awareness of the disease. You can follow her training progress at her marathon blog.
Yellow Shirt Day
Today is Yellow Shirt Day! I'm wearing my yellow shirt for endometriosis awareness.
Sunday, March 1, 2009
Myths of Endometriosis - Hysterectomy
During Endometriosis Awareness Month, it's helpful to get accurate facts out there about the disease and to dispel the common myths about endo. The myth I'd like to tackle today is this - that hysterectomy cures endometriosis. Obviously, this is a topic of particular relevance for me.
You see it on the message boards and email lists - women saying, "My doctor says I need to have a hysterectomy because of my endometriosis." They post looking for assurances that this major surgery will solve their problems at last and that they will be cured.
Hysterectomy does not cure endometriosis. Nothing cures endometriosis. I can't be any more blunt that that, folks. Up to 40% of women who have a hysterectomy will experience a recurrence of endometriosis within five years. The key with endo is the removal of the disease, not the reproductive organs. Endometriosis can continue to grow even after hysterectomy.
If you have endometriosis, you're going to have to become your own best advocate. Find an endometriosis specialist - no matter how much you like your regular ob-gyn, this is not a disease for a general practitioner. You will need a skilled, experienced surgeon who is up on all the current research and who will treat you with compassion and respect. You deserve nothing less, and should settle for nothing less.
I personally would never recommend a hysterectomy to anyone who has endometriosis. In my case, I was also dealing with adenomyosis and had exhausted my other options for treatment. I made the decision to have this major surgery knowing full well that it was not going to cure my endometriosis, but that it would resolve some of my other issues. My surgeon removed every last bit of endo he found while performing my hysterectomy - and now we all cross our fingers and hope. And that, my friends, is the way it goes with endo - surgery, and then hope.
You see it on the message boards and email lists - women saying, "My doctor says I need to have a hysterectomy because of my endometriosis." They post looking for assurances that this major surgery will solve their problems at last and that they will be cured.
Hysterectomy does not cure endometriosis. Nothing cures endometriosis. I can't be any more blunt that that, folks. Up to 40% of women who have a hysterectomy will experience a recurrence of endometriosis within five years. The key with endo is the removal of the disease, not the reproductive organs. Endometriosis can continue to grow even after hysterectomy.
If you have endometriosis, you're going to have to become your own best advocate. Find an endometriosis specialist - no matter how much you like your regular ob-gyn, this is not a disease for a general practitioner. You will need a skilled, experienced surgeon who is up on all the current research and who will treat you with compassion and respect. You deserve nothing less, and should settle for nothing less.
I personally would never recommend a hysterectomy to anyone who has endometriosis. In my case, I was also dealing with adenomyosis and had exhausted my other options for treatment. I made the decision to have this major surgery knowing full well that it was not going to cure my endometriosis, but that it would resolve some of my other issues. My surgeon removed every last bit of endo he found while performing my hysterectomy - and now we all cross our fingers and hope. And that, my friends, is the way it goes with endo - surgery, and then hope.
March is Endometriosis Awareness Month
Welcome to Endometriosis Awareness Month! The fabulous Endochick has put forth a great idea -
MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS
Endometriosis survivors across the web are going to blogging, twittering and talking about endometriosis all month long to raise awareness.
I'll start off the month by recommending a website - endometriosis.org. This site is a global one and has a wealth of information for anyone who visits.
Education, awareness, empowerment... and hope for a cure.
MARCH BLOGGING MADNESS FOR ENDOMETRIOSIS AWARENESS
Endometriosis survivors across the web are going to blogging, twittering and talking about endometriosis all month long to raise awareness.
I'll start off the month by recommending a website - endometriosis.org. This site is a global one and has a wealth of information for anyone who visits.
Education, awareness, empowerment... and hope for a cure.
Saturday, February 28, 2009
Back
February is always the cruelest month for me, so I can't say I'm sorry that today's the last day! I have asthma and during the last gasps of winter I always end up with bronchitis. I was hoping that this year I'd escape it, but with my resistance down after my surgery I suppose it was inevitable.
But I'm excited to get blogging - because tomorrow is March 1st, and March is National Endometriosis Awareness Month.
My first symptoms of endometriosis appeared when I was sixteen - but it wasn't until I was thirty-three that a doctor actually uttered that word to me. That's seventeen years from onset of symptoms to first tentative diagnosis. And my story is not the least bit unusual among endometriosis survivors.
Awareness is the key. We have to raise awareness. And I'll be doing my part to do just that during the month of March.
See you tomorrow.
But I'm excited to get blogging - because tomorrow is March 1st, and March is National Endometriosis Awareness Month.
My first symptoms of endometriosis appeared when I was sixteen - but it wasn't until I was thirty-three that a doctor actually uttered that word to me. That's seventeen years from onset of symptoms to first tentative diagnosis. And my story is not the least bit unusual among endometriosis survivors.
Awareness is the key. We have to raise awareness. And I'll be doing my part to do just that during the month of March.
See you tomorrow.
Sunday, February 1, 2009
Just a thought
I remain flabbergasted by the people who do their best to pretend I haven't had major surgery or to ignore my health issues. Because, oh my god, it has to do with my womanly parts.
To say I consider these people utterly pathetic would be too kind. No, I don't need you to hold my hand and sing kumbaya at a campfire. You don't have to say the word 'uterus' if you're truly that uptight and it freaks you out. But, geez, if you see me a month after my surgery and can't even say, "Looks like you're feeling better," or "How are you?" or anything like that, then, well, um, wow.
In all seriousness, setting aside my own personal annoyances with people -
It wasn't all that long ago that no one would acknowledge breast cancer. It was considered shameful and embarrassing and you were supposed to go to your corner and not speak up about this horrible disease, because heaven forbid we say the word "breast" in polite company.
2.5 million women in the United States have had breast cancer, are survivors or are warriors. To put that in perspective, the population of Nevada is 2.6 million.
Endometriosis doesn't kill you. It just does its best to destroy your life. Sometimes I go to the various endo support sites and I just weep, reading the posts from all these women who are suffering. Here's a sampling of subject lines from a boards I frequent:
22 & a hysterectomy? Advice, please!
Horrible ER experience
Bleeding won't stop
Ruptured chocolate cysts
Endo found on bowels
I just can't stand it anymore
Which painkillers work best
Finally giving up on having a baby
Lost my job, too many days out
The average woman suffers for 9.28 years before they're diagnosed. And then once you're diagnosed - guess what, there's no cure.
Take a look at this survey of 4000 members of the Endometriosis Association. 79% of those women report they cannot carry on normal activities as a result of their disease. 61% of them were told there was nothing wrong with them the first time they sought help from their doctor.
All that suffering - but we're not supposed to talk about it.
There are 5 million of us with endometriosis in the United States today. That's more than the population of the state of Colorado. It's five Rhode Islands.
God forbid we make you a little uncomfortable by talking about it, though.
To say I consider these people utterly pathetic would be too kind. No, I don't need you to hold my hand and sing kumbaya at a campfire. You don't have to say the word 'uterus' if you're truly that uptight and it freaks you out. But, geez, if you see me a month after my surgery and can't even say, "Looks like you're feeling better," or "How are you?" or anything like that, then, well, um, wow.
In all seriousness, setting aside my own personal annoyances with people -
It wasn't all that long ago that no one would acknowledge breast cancer. It was considered shameful and embarrassing and you were supposed to go to your corner and not speak up about this horrible disease, because heaven forbid we say the word "breast" in polite company.
2.5 million women in the United States have had breast cancer, are survivors or are warriors. To put that in perspective, the population of Nevada is 2.6 million.
Endometriosis doesn't kill you. It just does its best to destroy your life. Sometimes I go to the various endo support sites and I just weep, reading the posts from all these women who are suffering. Here's a sampling of subject lines from a boards I frequent:
22 & a hysterectomy? Advice, please!
Horrible ER experience
Bleeding won't stop
Ruptured chocolate cysts
Endo found on bowels
I just can't stand it anymore
Which painkillers work best
Finally giving up on having a baby
Lost my job, too many days out
The average woman suffers for 9.28 years before they're diagnosed. And then once you're diagnosed - guess what, there's no cure.
Take a look at this survey of 4000 members of the Endometriosis Association. 79% of those women report they cannot carry on normal activities as a result of their disease. 61% of them were told there was nothing wrong with them the first time they sought help from their doctor.
All that suffering - but we're not supposed to talk about it.
There are 5 million of us with endometriosis in the United States today. That's more than the population of the state of Colorado. It's five Rhode Islands.
God forbid we make you a little uncomfortable by talking about it, though.
Tuesday, January 20, 2009
New research article on endometriosis
An article is being published in the New Journal of Medicine which has contains some pretty interesting findings -
A U.S. researcher links endometriosis to abnormalities resulting from defects in the early embryo. click here to read the press release.
I'm looking forward to obtaining a copy of the full article. The researcher, Dr. Serdar Bulun, has been studying endometriosis for the past fifteen years and is an adviser to the Endometriosis Research Center.
A U.S. researcher links endometriosis to abnormalities resulting from defects in the early embryo. click here to read the press release.
I'm looking forward to obtaining a copy of the full article. The researcher, Dr. Serdar Bulun, has been studying endometriosis for the past fifteen years and is an adviser to the Endometriosis Research Center.
Thursday, January 15, 2009
Three weeks out
I've been struggling to put together a post after my post-op appointment yesterday. Everything went fine, and I was cleared in that I don't have to go back again. Stitches look good, everything's healing nicely. I'm to use my own good judgment about exercise and activity in general. I can swim or take a bath now.
I didn't get the pathology report or pictures that I was hoping for, so that was disappointing.
I'm also wrestling with the whole endometriosis issue.
They did find endometriosis on my right side, which explains all the pain in the months prior to my hysterectomy - particularly the ER and doctor visits which had everyone convinced I had appendicitis. They took care of it.
But I've kept an ovary. I'm only 37, and if we can hold off menopause for as long as possible then it's for the best. But it does leave me at risk for developing endometriosis again.
My surgeon put the odds at 50-50.
I'm choosing to be optimistic, but living with this disease, you get used to unfair twists and turns, and there will always be that little fear - will it come back? Have I gone through all of this, only to have to have more surgery in the future?
Endometriosis is such a rotten bastard, isn't it?
I didn't get the pathology report or pictures that I was hoping for, so that was disappointing.
I'm also wrestling with the whole endometriosis issue.
They did find endometriosis on my right side, which explains all the pain in the months prior to my hysterectomy - particularly the ER and doctor visits which had everyone convinced I had appendicitis. They took care of it.
But I've kept an ovary. I'm only 37, and if we can hold off menopause for as long as possible then it's for the best. But it does leave me at risk for developing endometriosis again.
My surgeon put the odds at 50-50.
I'm choosing to be optimistic, but living with this disease, you get used to unfair twists and turns, and there will always be that little fear - will it come back? Have I gone through all of this, only to have to have more surgery in the future?
Endometriosis is such a rotten bastard, isn't it?
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