A typical 20 something gal with major medical complications. Just need a place to vent.. exchange ideas and most of all support! The purpose of this Blog is to let people know these things really do exist and also thanks to a close friend one day it can be turned into a documentary...
Thursday, September 23, 2010
its thurs.. and still no period?
Wednesday, September 22, 2010
and cue cramps...
This will be my second period since luperon (excuse the sarcasm)- YEAH! woot woot... well the cramps have begun so lets see if my monthly friend appears tomorrow which for some reason mine always appears on a wed?
But i hv sharp pains beginning...
Sunday, September 19, 2010
wow its been a while...
Monday, August 30, 2010
::sigh:: life...
Thursday, August 26, 2010
Just a small vent..
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!”
Friday, July 16, 2010
Normal vs Endo





- . Ovaries
- . The outside surface of the uterus
- . Fallopian tubes
- . Ligaments supporting the uterus
- . Internal region between the rectum and the vagina
- . Lining of the pelvic cavity
- . Intestines
- . Bowels
- Other organs within the abdomen
Thursday, July 15, 2010
Endometriosis... Old disease in this modern age
Fundamentally, Endometriosis is a serious biological malfunction which focuses on the reproductive organs and the pelvic region of a woman’s body. This disease will start quietly, insidiously and unnoticed. Then gradually symptoms of painful periods, pain at other times of the month, and a general feeling of being run-down, will start to develop. In women with Endometriosis, the natural bodily processes of the reproductive system goes seriously wrong. The disease is linked and affected by the menstrual cycle and the hormones that make menstruation happen. Physically, what happens is that tiny, and sometimes microscopic particles that are similar to the lining of the womb, find their way into the pelvic cavity. These particles behave in the same manner as the lining of the womb. The lining of the womb is called the endometrium, which is where this disease gets its name. The natural process of the endometrium is to react with hormones produced in the body and each month the endometrium builds up with blood cells and other chemicals to prepare for pregnancy. When pregnancy does not occur then the endometrium sheds this blood and women have a period. A similar reaction takes place in the stray cells that have found their way into the pelvic cavity. Each month they react to hormones, and break down and bleed, but the blood and tissue shed from these endometrial growths has no way of leaving the body. This results in internal bleeding, breakdown of the blood and tissue from these sites and leads to inflammation.

Endometriosis is not usually fatal (though there can be rare occasions where the symptoms can pose a serious threat to life and it is not cancer. It is not a disease that you catch from another person, nor is it a micro-organism that starts this disease like the processes of other infectious diseases. Basically it appears that the body, and its natural healing processes are defective. It can strike women at any time of their reproductive life but we are seeing more and more cases of young girls who have Endometriosis. Recent studies are beginning to indicate that women with the disease are at greater risk of other health problems, but this could be an indicator that women with this disease are actually suffering from a break-down in the immune system. This situation seems to ‘ring true’ as many women who have Endometriosis seem to suffer from a myriad of other health problems.
The symptoms of Endometriosis vary from one woman to another but the most common symptom is pelvic pain.
Endometriosis does not follow any distinct pattern, which is why it is difficult for the medical profession to know that a woman has the disease.
- . ovarian cysts
- . ectopic pregnancy
- . Pelvic Inflammatory Disease
- . irritable bowel syndrome
- . ovarian cancer
- . fibroid tumors
- . colon cancer
- . appendicitis
The most common symptoms of Endometriosis are:
- Pain before and during periods
- Pain with intercourse
- General, chronic pelvic pain throughout the month
- Low back pain
- Heavy and/or irregular periods
- Painful bowel movements, especially during menstruation
- Painful urination during menstruation
- Fatigue
- Infertility
- Diarrhoea or constipation
- Headaches
- Low grade fevers
- Depression
- Hypoglycaemia (low blood sugar)
- Anxiety
- Susceptibility to infections, allergies
- In the later stages of Endometriosis, adhesions usually develop in the pelvic cavity, which are caused by untreated cysts, which can ‘glue’ pelvic organs together. These adhesions will seriously interfere with normal functions of organs in the pelvis, causing bowel obstructions, digestive problems, infertility, urinary problems, agonizing pains when the adhesions are pulled, mobility problems.
- . Chronic Fatigue Syndrome (100 times more common in women with endometriosis)
- . Hypothyroidism - under-active Thyroid gland (7 times more common in women with endometriosis)
- . Fibromyalgia
- . Rheumatoid arthritis
Wednesday, July 14, 2010
Most missed diseases
Christian Northrup, On oprah... im so upset!
emotional needs are competing with her functioning in the outside world." click here for Article
Sunday, July 11, 2010
Emergency Room... (Again?)

So i started getting extreme chest pains and it was getting harder to breathe. We decided it was best to go to the ER.. Turns out i have Bronchitis. SUCKS! the ER Dr even told me just try to live your life as normal as possible??? every time i go out i get sick... any suggestions on immunity boosters? Something.. because me and my bed have too much of a common relationship!!
Friday, July 2, 2010
Life with Interstim
My Dr suggested i have a device called Interstim installed into my bladder .. there really is no info out there to tell you really about it... i was REALLY skeptical but im glad that i did it... now i can tell the difference between a UTI and my endo pains. Although the procedure was a little scary but in all i'm glad i did it! I have to say i have at least a 75% improvement in pain.. its a little overwhelming at first but its really helped me to understand what its like to go somewhere and not have to look frantically for the toilet before i sit down LOL. and I was able to drive 3 hours with out stopping every 20 mins. (AMAZING).
Thursday, July 1, 2010
This is Me and My Life
Wednesday, June 30, 2010
A Letter to All...
We have spent the last years of our lives apologizing for being stricken with a disease we did nothing to contract, and we can do it no longer. We are asking one last time for your understanding. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realize, is that you are just as much a part of the cycle of the disease as we are, because you are not getting the whole of our person and our capabilities. We are not lazy, we are not a whiners, we do not make the pain up in our heads.
We have Endometriosis.
We know that we look healthy on the outside, and that is sometimes harder to accept than if we exhibited the disease in our everyday appearances. What you don't see is what our organs look like on the inside, and you don't see what living with it has done to our mental state.
When we call in sick, it's not because we need a mental health day or to go shopping. It's because we can't get out of bed from the pain. Do you think we like letting our careers pass us by? Would it be easier for you to understand if we said we had cancer and looked the part?
When we get emotional and cry at the seemingly silliest things, or get angry for even less reason, it's not because we are flaky females. It is because we are taking experimental drug therapies to combat the disease, or perhaps because we have come close to the breaking point after dealing day in and day out with the pain for which there is no known cause or cure.
When we can't have relations with our partners, it is not because we don't love you or want to. It's because we can't. It hurts too much. And we aren't feeling real attractive right now.
When you as our parents can't understand that since you are healthy, we should be but aren't - try harder. We don't understand it either. We need your support more than anyone's.
When we can't go to family gatherings or accept social invitations, it's not because we don't wish to share in your fun. It's because we feel like pariahs. You are all having such a nice time with your children and loved ones - we can't remember the last time we had a nice time, or the last time we were pain-free. We can't have a nice time with our children (some of us), because we were robbed of that chance before we were old enough to even care about having them in the first place. Do you think we need to be reminded of our battle with infertility by watching you and your babies? Or for those of us who were blessed enough to be able to conceive, do you think we want a constant reminder that we never feel well enough to spend enough quality time with our children, or worse - that we might have passed this disease down through our blood onto our daughters?
When you married us, you didn't know that we meant the "in sickness and in health" part literally, did
you? We bet you were counting on at least a 50/50 split of that combination, rather than the 90/10 ratio you got. You are our caretakers, the ones who drive us to and from our doctors, countless surgeries, and emergency room visits. You are the ones who hear us crying in the night and see us break down during the day. You are the ones who wait on us hand and foot after surgery. You are the ones that go for months on end without sharing our beds with us. You are the ones that deal with our infertility right along with us. We strike out at you when we are hurting and angry, and you take it in stride. You are perhaps bigger victims of endometriosis than even we are. You are appreciated more than words can ever say. Don't give up on us now.
As a medical professional, we are coming to you for help. We are asking you to do the job you were trained to do and ease our suffering. We do not need you to tell us that we are imagining the excruciating pain we live in, or worse yet, that it is normal for a woman to hurt. Keep up with your research, find the cause of this disease and better yet, find a cure! Stop taking the easy way out and drugging us into oblivion so that we will quiet down. We are not going to quiet down. We want answers and it is your job to provide them. You were the ones that took the oath to heal, why do we have to try to do your job? Do you understand what it means when we tell you that we literally can no longer live a normal life and care for ourselves and our families? Are you not up to the challenge to find the answers?
To those we have called friends all our lives, why have you deserted us when we needed your compassion and understanding the most? Do you see the selfishness of your actions? When we can't "hang out" and get together with you, it's not because we don't like you or we don't care - it's because we are no longer capable of enjoying healthy leisure time. Our minds are consumed with our next doctor's appointments, what surgery we are going to have next, and why we feel so sick all the time. This is not about you - it never was and it never will be. It is about us. Please try to remember what the term "friend" means.
Try to walk one minute in our shoes. We have fought a war for the better part of our years. We are faced daily with physical pains we can't understand and mental anguish we can barely cope with. We have to face a society which doesn't even know the word endometriosis, much less the ramifications of living with the disease. We have to face uneducated and unsympathetic doctors who tell us things like, "it's all in your head", and "have a hysterectomy, it will cure you", and "get pregnant, it will also cure you", when we know that it won't and have been dealing with infertility for the last however many years. We in our 20's and 30's do not wish to give up our organs just yet. That would be like giving in to the endo. Can't you see that? We have to fight to get medical treatment that insurance companies don't deem necessary, or worse, we deplete our savings because aren't able to obtain proper care unless we pay for it ourselves. We have to have surgery after surgery and subject ourselves to horrific medications just to be able to get out of bed in the morning. This is not a conscious choice we made, it was the hand we were dealt. It is enough of a war we wage just to try and live with some modicum of normalcy - don't make it harder on us by not seeing the reasons why. Endometriosis is a disease that affects all of us. Take the time to learn about it and understand why we are the way we are. If you can do that, and you can join us in the battle for a cure, then we can one day return to our old selves and live a normal, productive life. We can have a healthy relationship with our loved ones, we can contribute meaningfully to our work environments. We can stop taking the painkillers that numb our suffering to a degree and become part of the living again. Please don't judge us and declare that we are all the things we are not - until you have lived with this disease ravaging your mind and body, you cannot speak on it.
Whatever doesn't kill us makes us stronger, someone once said. While endometriosis may not kill our physical body, it kills our spirit. It kills every hope and dream we ever had of doing the things that make us happy. All of us are out here searching for a cure to put an end to the disease...we are asking you to take part in that battle and work with us on doing so. Wouldn't it be nice to have back the daughter, wife, friend or family member you once knew?
Tuesday, June 29, 2010
Life before outbreak





well before endo i was into bowling, a cheerleader, super active... but the last 2 years my life style had to radically change bc i was always worried about having some kind of pain attack and it also made me very sick like constantly almost... now im into movies ( i love going to see new movies) and i like doing new things whenever im up to it... i like going for walks when the weather is nice.... reading and yes of course i am learning american sign language.
I'm a nursing major (and i intend to work with women in the hospital with endo... i see it only fitting!!! bc all those drs out there think we are nuts)