Monday, August 23, 2010
Day 3- No signs but killer mood swings??
Sunday, August 22, 2010
DAY 1- no Nuva Ring
Ok so Now what?? haha j/k I have done this many times but this is my first official time taking out my nuva ring while being officially diagnosed with Endo.. although i suffered through the migraines this mth i have to say it wasnt half as bad as i thought it would be... i didnt start getting pains until today ... My first official period is comming since sept of last year.. im not so sure if i should be excited or scared?!?! Dr Vosough told me to expect hell and have percoset on hand.. which im def taking that advice to heart... i have my trusty friends on hand ( "Matilda"- who Gabby has so lovingly named my heater, percs, tramy and my AC.) I have NO idea what to expect but i am almost afraid bc im experiencing UTI symptoms... i guess which is no surprise here jk Maybe i should fill the cipro he gave me last week... they also gave me something that turns my urine blue that actually takes the edge off my everyday pain in the bladder!! surprise!!
Monday, August 2, 2010
Yeay!
Sunday, August 1, 2010
Why is it no one understands?
Monday, July 19, 2010
What It Really Means to Have Endometriosis
In last week’s post (“What is endometriosis?”), I said that endometriosis by definition is a disease process where the inside lining of the uterus, the endometrium, flows back up inside of the body around the ovaries and bowel where it implants and begins to grow. Quite frankly a lot of this medical stuff can be quite dry and boring and does not convey what it is like for a woman to have this disease and how it truly impacts her life, her family, her career, her sex life, and her ability to live her life in very basic ways.
In reality, this disease can be like having tens or hundreds of excruciatingly painful blisters covering the inside of the pelvis. Infertility and pelvic pain are the two most common symptoms of endometriosis.
Patients with endometriosis can experience horrific pain – for the lucky ones it lasts just a couple of days during their period, and in the worst cases the pain is 24/7. The dichotomy between the way women with endometriosis look well on the outside but are experiencing excruciating pain internally can cause even well-meaning people to doubt the severity of their pain.
Most women begin to have pain in their teenage years, sometimes even starting in junior high school. While similar in timing, this pain is completely different than normal menstrual cramps. It is not uncommon for these girls to miss a couple of days of school each month from cyclic pain that can exceed the level of pain patients experience after major surgery.
A lack of awareness of this disease can leave these girls without a correct diagnosis and support from their physicians. This can lead to a lack of appropriate treatment for the pain and invalidation of the patient’s situation. Her family is now led to believe that psychological issues drive the severity of her pain.
In this tragic situation, she is effectively held prisoner and tortured by her own body in broad daylight, with no one who fully understands her situation or who can effectively help her.
The symptoms usually progress as she matures into a young woman. Both the severity and duration of the pain typically increase. Initially most days each month are pain-free, but the number of these days slowly decreases until there are a greater number of non-functioning pain days. The unpredictability of the increasing number of pain days makes it challenging to maintain a functional life. It becomes increasingly difficult to make plans for a future date as it becomes more likely that it will be a pain day and she will not be able to follow through on her commitment for the activity.
As a disease, endometriosis can take away many additional aspects of a normal life. Mothers cannot reliably meet the needs of their children when the pain is too severe to function. Wives try to push through the pain to be intimate with their husbands, but eventually the pain becomes too intense to continue. Grinding fatigue as severe as that experienced with advance cancer is present in most cases. Bloating, moodiness, and bladder and bowel issues are common as well.
Feeling like a vibrant desirable woman is long since gone. Acting like the loving compassionate woman, mother and partner that she truly is becomes more and more difficult. The stress on family relationships is common and real.
Even at this stage, most women fight the disease, refusing to let it completely take over their life. You would most likely pass right by them in public, having no idea of the devastation they are dealing with. Most of the time they get up, put on a brave face and do their best to live a normal life.
The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.
We would like to hear your thoughts, stories and experiences. Post a comment below and tell us what you think.
Sunday, July 18, 2010
About Endometriosis
About Endometriosis
by Lone Hummelshoj
We've just finished a month dedicated to women and mothers. In the U.S., we celebrated "National Women's Health Week" and before it Mother's Day. One study suggested Americans would spend a total of $14.6 billion in May alone to honor our mothers. And we should honor our mothers!
However, for millions of women with endometriosis, motherhood is elusive. In fact, an estimated 7.5 million women in the U.S. -- one in 10 -- are affected by endometriosis during their reproductive years.
Since endometriosis is one of the biggest causes of infertility, too many women will never experience the joy of motherhood -- and for them "Mother's Day" becomes a day of grieving for the children they never had.
It doesn't stop there. The chronic pelvic pain that so many women also experience -- every single day -- is limiting. Unfortunately, all of today's treatments have some degree of side effects and there is no known cure.
An average diagnostic delay of eight years, coupled with "hit and miss" treatments, has put the estimated cost of endometriosis to society at $22 billion a year. That is higher than the cost of migraine and Crohn's disease.
Furthermore, that amount does not account for a woman's personal costs, nor indirect costs such as not being able to go to work or school, or being less productive while there.
Yet there is a lack of funding for research into the underlying mechanisms of the disease -- research that could help us find a cure or even well-tolerated long-term treatments.
I worry that mismanagement in endometriosis is costing national healthcare systems billions of dollars unnecessarily. Dollars that could be spent more wisely in developing early and effective treatments -- with significant savings down the line. But my concern is not about healthcare systems alone.
I am concerned about the large proportion of women with endometriosis who have to take time off work every month either because of severe symptoms or because of doctors' appointments and treatment regimes.
I am concerned about the women with endometriosis who report reduced productivity at school and at work because of their painful symptoms.
These circumstances have a profound effect on society, but most certainly also on the women themselves, whose personal cost -- both financially and emotionally -- is substantial. The effect on relationships, especially when fertility becomes an issue, must not be underestimated either.
For decades I have advocated around the world to get endometriosis and its impact recognized, speaking to legislative leaders and at conferences. Just two weeks ago, I addressed these issues in New York City at the Endometriosis Foundation of America's first medical and scientific conference.
The attention at the meeting was great.
But we need a great deal more than medical conferences.
We need to collectively urge our governments to fund research that will significantly enhance awareness, reduce time to diagnosis, improve treatments, and ultimately find a cure for endometriosis.
Otherwise, this devastating illness will continue to rob millions of women of their quality of life during what should be the most active and productive time of their lives -- those precious years when they should be finishing their education, commencing a career, building relationships, and having children -- something too many will never experience!
I believe we have finally begun the kind of research that is needed to move forward.
As Chief Executive of the World Endometriosis Research Foundation (WERF), I have been working for the past year with 12 centers in 10 countries (including the U.S.) on the first-ever prospective study to assess the hidden costs of endometriosis (direct and indirect) to society and to women with the disease.
The EndoCost study has a goal to identify areas that can be addressed for improvement and subsequent reduction in cost from endometriosis, and we expect to publish our findings during the second half of 2010.
We hope the results will spur national governments to take endometriosis seriously and invest in research to prevent the next generation of women from having to suffer during the prime of their lives the way this generation has!
Saturday, July 17, 2010
Another Endo trooper...
Congratulations to Laura... and we greatly appreciate her willingness to share this inspirational piece with our communities. Enjoy!
"That was then. Today we have a voice, today we have hope!”
by Laura Baldi-Kuhn
Over the course of 20 years I watched my entire world slowly collapse on me, but that was then.
My day started like that of any other typical 15 year old. As I headed to school I hoped for a great day. Later that afternoon, as I sat in the principal’s office, waiting for my Dad to show up I remember thinking, “Life is not fair”. In the end it was decided, other girls my age dealt with their period. They didn’t miss so much school. We left the office, my Dad with a reassuring arm on my shoulder. Nothing was said but we both knew the outcome. No matter how bad the pain, I simply couldn’t miss even one more day of school this year. Mine was an unknown, unaccepted, and misunderstood disease.
As I look back, I think about the years, how they take so long and they go so fast.
I was in my early twenties, a few weeks after my 2nd horrific surgery. I sat in another office for what began to feel like routine judgment. This time it was the office of my OBGYN. She was a busy lady with a thriving practice. She reported I was healing fine and as she wrapped up our consult she mentioned I have Endometriosis. The questions began flying. “Endo what?” She said it’s too complicated and simply sent me home with a video, that she believed, would explain it all.
The years and the ½ a dozen plus surgeries that followed were painful even sometimes unbearable but if I could take back only one day it would be the day THAT doctor left me hopeless. According to the video and our follow up there wasn’t much to be hopeful for. I would probably never have children and if the pain became too much there were hormone shots and hysterectomies. But that was then. I endured the treatments and the surgeries and from time to time my doctor would mention if there was any hope of having children I should try before 30. What did I care; I was single, riddled with pain and hopeless. Eventually the pain branched out and became unmanageable. In my mid 20’s I revisited that doctor who happily informed me that the “new” pain in my lower left abdominal area couldn’t be from endometriosis. She recommended I consult other types of doctors. Oddly my hope began to return. But after countless dead ends, tests, years I found myself back in this woman’s office. Hopeless. She was quite angry to see me. I mean who was I to second-guess her? As I left her office sobbing her receptionist hugged me and slipped me the name and phone number of her OBGYN up the street. It was however small a beginning.
I was slowly learning that I have choices. When the pain returned 6 months after my 7th surgery (1st with this new doctor) I started managing it with hospital visits, heavy medication and sedation. As I entered my 30’s childless, I lost the drive to keep my business going. I wondered if I had saved up enough to live off of until perhaps one day the pain subsided.
My Mom showed up at my house one morning to comfort me. I sat in her arms and cried for what seemed like years. “One more surgery my Laura Lee?” I needed answers. Time wouldn’t wait. We met with a dozen specialists I studied, learned, asked questions. I became my own best advocate. If they said, “try hormone shots” I left, if they said, “remove my reproductive organs” I left.
Then one day in October 2006 a complete stranger gave me the name of the endometriosis specialist that changed the course of my life. This man, his staff, their dedication gave me a chance to take back that one hopeless day almost 20 years ago.
Today I’m 37 and live with my wonderful husband Jimmy. This October we are happily anticipating the birth of our 1st child. To all the women who have and still suffer with Endometriosis I say, “That was then. Today we have a voice, today we have hope!”