What It Really Means to Have Endometriosis

What It Really Means to Have Endometriosis - Directly from Dr. Cook's blog

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.

About Endometriosis

The following article is a great piece written by Lone Hummelshoj, who has become a driving force behind endometriosis patient advocacy and education all over the world. She is chief executive of the World Endometriosis Research Foundation, secretary general of the World Endometriosis Society, and publisher/editor-in-chief of www.Endometriosis.org. Additionally, she has supported the Endometriosis Foundation of America as an advisor since March 2009.

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!

Another Endo trooper...

The following essay is the winning entry for the Endometriosis Foundation of America's Taking Back the Day contest, in which the grand prize was two tickets to the Blossom Ball and the opportunity to meet founder Padma Lakshmi.

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!”

Normal vs Endo

Normal Uterus Slightly infested Endo Endo & Adhesions

extreme endo

There are various areas where endometrial tissue can develop in the pelvic cavity including:

• . 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

Endometriosis... Old disease in this modern age

OK so i must admit i stole this from someone else's page but rightfully soo it shows our life and the wrath this disease has on us..

Endometriosis is one of the most far-reaching, devastating and misunderstood diseases in the world today. It is estimated that there are over 70 million women and girls who have Endometriosis world-wide. It is more common than breast cancer or Aids, and many other diseases, that are well known. Despite the huge numbers of women who suffer from this disease, few people have actually heard of it, but this is gradually changing, though very slowly.This disease is becoming more and more common. It seems to be gaining ground. This could be for a variety of reasons. The methods of detecting and diagnosing the disease are improving all the time, so statistics reflect this as growing numbers of cases are detected. The seriousness of the disease is gradually gaining momentum and more people are finally beginning to hear about it. This may be through television programs, magazine articles, the internet, or talking to friends. So there is an ever increasing public awareness. This public awareness helps to alert women who have concerns about their health, especially regarding pelvic and menstrual pain, so more women are able to determine whether they have Endometriosis. More women are taking their pelvic pain and period pain seriously, rather than thinking of it as normal, so they are pursuing answers from the medical profession. Finally, the numbers of women who have the disease appears to be increasing in actuality, especially in the last 30 years or so. It is also more common in industrial countries, where pollution is higher.

SO WHAT IS ENDOMETRIOSIS AND WHAT DOES IT DO?

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.

This process continues for months, or even years before symptoms of serious pain begins to develop. Many women start to suspect something is wrong because the amount of pain they feel with their periods starts to get worse and worse as the months go by. It is then that women start to investigate and question the state of their health. For other women the disease may not throw up any noticeable symptoms, but they may be having problems with their fertility and are not successful in conceiving. It is then that they seek medical advice which could lead to having a laparoscopy. It is during this procedure that the disease may be found.

As time goes by, this disease will progress and start to do more damage in the pelvic cavity. Eventually it can lead to scar tissue formation, adhesions, bowel problems, as well as a gradual decline in general health.

ENDOMETRIOSIS IN CONTEXT

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.

Endometriosis is serious. It is affecting millions of women around the world. It is not simply disrupting women’s lives, it can be devastating for most women. It affects her health, her quality of life, her possibilities of having children, her income earning potential, her emotional well-being, her relationships, her sex life, her economics if she lives in a country where she has to pay for treatment, her social life; in essence it affects her entire life.

These are the hard facts that surround Endometriosis today. Many women suffer for years and years. They may have one surgical procedure after another. They may spend thousands of dollars on treatment, especially if their health insurance does not cover it. They may travel miles in pursuit of sympathetic and informed medical treatment. This list goes on and on.

But there are some glimmers of hope beginning to appear. Many women today are beginning to take care of their own health with regard to dealing with Endometriosis. They are starting to realize that all is not clear cut with the objectives and priorities regarding health care in the modern world.

The hope and courage for many women is gained through gathering and sharing information, especially from other women who have the disease. Many self-help measures are being exchanged between fellow sufferers, and where these measures are proving successful, this instills the value and proof that these methods will help.

Endometriosis Symptoms
The symptoms of Endometriosis vary from one woman to another but the most common symptom is pelvic pain.

One of the biggest problems regarding Endometriosis is that the signs of this disease in the early stages, appear to be the ‘normal’ bodily changes that take place with the menstrual cycle.It is only as time goes by that a woman begins to suspect that what is happening, and the symptoms she feels, are not normal. The pain of her menstrual cycle gradually and steadily becomes worse and worse as the months go by.

This is only the beginning of what will become a gradual decline in a woman’s general health, as well as the health of her reproductive system.Having said that, there are odd instances where some women do actually have Endometriosis, but they are nearly free of any symptoms. These women will only be diagnosed by default, for example when they have surgery for other issues, and only then is Endometriosis found. That is what makes this disease so mysterious.
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.

Some of the symptoms will mimic those of other health problems, including:

• . 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

Other symptoms which are common with Endometriosis include:

• 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.

As Endometriosis develops a woman’s immune system becomes more and more impaired and this leads to further health problems. Due to increased research, as well as surveys of Endometriosis patients, it is now becoming clear that women with the disease are susceptible to other serious health problems including:

• . 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

It does seem clear that as women with Endometriosis are more receptive to other health problems, then their immune system is the key to their problems.

No two women will have the same symptoms for Endometriosis, and will not suffer the same knock-on health problems, but the most common symptom experienced among Endometriosis sufferers is acute pain.In some instances the pain of Endometriosis can prohibit a woman to contribute in every day activities as well as her ability to sustain a career.

Most missed diseases

Endometriosis and Polycystic Ovarian Syndrome: The Two Women's Diseases Doctors Miss Most Health & Fitness: glamour.com

Finally doctors are starting to realize they under diagnose ppl... finally!

Christian Northrup, On oprah... im so upset!

Christiane Northrup who is well known womens "advocate" as well as doctor... showed up on the Oprah show and talked SOOOOOOO much junk about Endometriosis. First of all she is a doctor so everyone would believe her... I just cant understand how someone who never experience Endometriosis can talk so much on how it affects someone (when they don't even HAVE IT!!)

"Endometriosis does not cause infertility, but is felt to be a contributing factor. Whatever is causing the endometriosis symptoms may also be responsible for the infertility, but one does not cause the other. Like fibroids, endometriosis is related to diet and blocked pelvic energy. It is an illness of competition that comes about when a woman’s
emotional needs are competing with her functioning in the outside world." click here for Article

OK news flash people!!!! - Endometriosis is actually a medical condition not something that happens out of "competition" and it DOES cause infertility! I'm so upset she would even say this UGGH! What the heck is blocked pelvic energy anyway?

Emergency Room... (Again?)

-Pengi my nebulizer :)

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!!

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).

This is Me and My Life

I started all my symptoms as early as 14 but all my life everyone told me i was crazy; I always got sick over nothing! ... The same song and dance: "pain i was describing they had never heard of and it was normal to have a period like i had"... which im sure all women with Endometriosis have heard... so when i was 18-well basically now 24 i cannot even tell you how many times i ended up in the ER with cysts or ruptured cysts and the sorts but no one ever suspected a thing wrong... then last june i was rushed to he ER and well suprise suprise, i had 5 ruptured cysts and my gyn was a total jerk about it... i was sent home with pain meds a couple of hours later... that same summer i got a period lasting almost a month in which i lost so much blood i was on the border line of needing a transfusion... ended up going to a new gyn... (who my the way is amazing he was the one that actually has been fighting for me ever since) ... he supsected endo from the first visit... so we tried many different methods to get the pain under control as well as the constant UTIs ( had 7 in total in 2009). Finally i had enough and scheduled a lap... but ended up in the ER about three weeks before with a majorly elevated white blood cell count ( over 18,000), after a billion tests and a week in the hospital they had to do an emergency lap (Dec 11,2009) and yes stage 4 endo.... was given luperon and the works... i felt like superwomen for a mth and then boom pain is back and more agressive... ended up in the ER end of Feb was bleeding like crazy was hospitalized for 8 days and they couldnt find any other medical reason except for endo? so another emergency op (Feb 26, 2010) and they removed my appendix also... After all this craziness the pain persisted and i was officially diagnosed with the evil triplets of endo.. -PCOS, IC and Endometriosis as well as fibromaylsia. Because of Urinary Inconsistence i Had a Surgery to have in Interstim device installed (May 17, 2010). It's been a constant Battle so I have decided to make a blog about it.. so that all women with this disease can step up and be known :)