Information about Endometriosis, latest news and research.
Endometriosis is when the endometrium, tissue that lines the inside of the uterus, is found outside of the uterus in other ares of the body, except the spleen. The growths respond to normal hormonal surges, to grow or shed, but the blood generated has nowhere to go, so causes pain, inflamtion, and adhesions.
Endometriosis tissue also generates small amounts of hormones themselves thereby meaning they continue to grow very slowly fuelling themselves – even after treatment for hormones etc..
BOWEL ANATOMY 101
The intestines (bowel) are made up of two basic parts, the small intestine and the large intestine. The small intestine is about 9 feet long and the large intestine is about 3.5 feet long. The small intestine connects the stomach to the large intestine. The small intestine fills the area from the from the bottom of the ribs to the top of the uterus. It has no set course and looks a bit like a bunch a spaghetti. The large intestine connects the small intestine to the anus. From the anus the large intestine follows a course behind the vagina, cervix and uterus, and makes an upside down “U”, up the left side of the body, across the upper abdomen just below the ribs and down the right side of the abdomen ending near the hip bone on the right. The appendix is a small worm like structure projecting off of the large intestine close to where the large and small bowel connect. The contents of the small bowel are primarily liquid while those of the large bowel are primarily solid. The bowel wall is made up of three basic layers; (1) the serosa, (2) the muscle wall and (3) the mucosa. The serosa is outside lining of the bowel wall. It is very thin, similar to saran wrap. Most of the bowel wall is made up of muscle. This is the middle layer. The inside lining of the bowel is called the mucosa and is also quite thin…
ENDOMETRIOSIS OF THE BOWEL
Endometriosis has been reported to grow in almost every organ in the body outside of the reproductive organs. The bowel is the most common non reproductive organ involved with endometriosis.
INVASION
The degree of invasion of the bowel wall by endometriosis is one factor that will determine the type of symptoms that the patient will experience. If the bowel endometriosis is superficial, involving only the outside serosal surface, the most common symptoms are bloating, nausea and loose stools with menses. At the other extreme, if the endometriosis has invaded all the way through the bowel wall including the inside mucosa, then the patient will usually experience rectal bleeding with her period. While it is common for the endometriosis to invade through the outside serosa and the middle muscle wall, it is unusual to invade through the inner mucosal layer. This probably accounts for the high failure rate of barium enemas and colonoscopsies in diagnosing bowel endometriosis. The location of the bowel will be the primary determining factor of the type of symptoms when the muscle wall of the bowel is involved with endometriosis.
LARGE BOWEL
The pelvic portion of the large bowel (the rectum and the sigmoid colon) is the most commonly involved part of the intestine. The close proximity of this portion of the bowel to the vagina and cervix often results in painful intercourse. Bowl movements can also be very painful since the bowel contents are solid in this portion of the bowel. The portion of the intestine where the large and small bowel connect is located in the area between the belly button and the right hip bone. This is in the same area as the appendix. Involvement of the bowel in this area or the appendix can result in right sided pain. Bowel endometriosis can also result in adhesions (scar tissue). These adhesions can involve other loops of bowel resulting in a partial obstruction (blockage), the ovary, fallopian tube or even the ureter. These adhesions can also result in pain. Endometriosis of the large bowel rarely results in obstruction of the bowel.
SMALL BOWEL
Endometriosis of the small bowel usually results in bloating and pain which is associated with eating. Often patients with small bowel endometriosis have restricted the amount and type of foods that they eat. The symptoms are slowly progressive over time and the patient may not even realize the extent to which she has altered her diet. Small bowel endometriosis often results in a partial bowel obstruction. As the bowel swells following a meal the bowel kinks, and like a kinked garden hose the contents do not get through until enough pressure builds up to push by the narrowed portion.
TREATMENT OF BOWEL ENDOMETRIOSIS
All patients undergoing surgery should have a preoperative bowel preparation. It is impossible to tell preoperatively if bowel endometriosis is present. The microscope and the laser are wonderful surgical instruments for treating bowel endometriosis. This combination provides the magnification and precision necessary for me to remove the endometriosis from the bowel, without having to perform a bowel resection in the vast majority of cases. Situations in which the crude electrosurgery would result in the need for bowel resection are easily handled by microscopic laser surgery. This is true for both the large and small bowel. In the rare cases that the endometriosis has completely replaced a section of bowel, the diseased segment of bowel is removed by one of the bowel surgeons of my team and the normal ends of the bowel are reconnected.
THE TEAM APPROACH TO THE TREATMENT OF ENDOMETRIOSIS
Endometriosis is a dreaded disease which has no respect for the boundaries of the various medical subspecialties. For example: The urologist may help if the endometriosis involves the bladder or the bowel surgeon may help if the bowel is involved or the thoracic surgeon may help if a thoracoscopy is needed to diagnose and treat endometriosis of the lung. Proper preoperative evaluation and preparation in conjunction with the team approach should result in the complete treatment of the individual with endometriosis.
NON SURGICAL TREATMENT OF BOWEL ENDOMETRIOSIS
At this point in time there is no non surgical treatment of bowel endometriosis. Lupron, birth control pills etc, may slow the growth of endometriosis, but they will not get rid of the endometriosis nor the associated fibrosis or adhesions. Invasive bowel endometriosis is a serious condition which can lead to an acute surgical emergency (bowel obstruction).
CONCLUSION
In summary, you probably are looking at another surgery to treat the endometriosis of your intestine. Using microsurgical laser treatment, the vast majority of bowel endometriosis can be treated without having to perform a bowel resection.
Author Unknown
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Drug Commonly Used to Treat Endometriosis Linked to Ovarian Cancer
By Liza Jane Maltin
March 19, 2002 — A drug used to combat endometriosis may increase a woman’s risk of developing ovarian cancer. Researchers have found that women taking danazol are three times more likely to get the disease than if they take an alternate drug.
The team from the University of Pittsburgh Graduate School of Public Health presented their findings March 17 at a gynecologic oncologists meeting in Miami.
Endometriosis is a painful condition in which pieces of the uterine lining — the endometrium — migrate outside the uterus and grow abnormally.
Roberta B. Ness, MD, MPH, associate professor of epidemiology, and colleagues reviewed pooled data from two studies including more than 1,300 women with ovarian cancer and nearly 2,000 similarly aged healthy women. They looked at the relationship between endometriosis, endometriosis treatments, and ovarian cancer.
In all, 195 of the women with cancer and 195 of the healthy women had been treated for endometriosis. Women with endometriosis were one and a half times more likely than those without endometriosis to have ovarian cancer.
The researchers found that women with endometriosis who’d taken danazol were nearly three times more likely than were women who’d taken another drug to have ovarian cancer. This link held even after taking into account various factors known to influence the risk of getting ovarian cancer including having been on the pill, having had a baby, and having a family history of the disease.
“Our previous studies have found that women with endometriosis are already at a 50% increased risk for ovarian cancer, and treating them with danazol appears to further increase their risk. This new result, even though it is preliminary, may factor into the equation when [doctors] and their patients with endometriosis are deciding on the best treatment,” says Ness in a news release.
© 2002 WebMD Inc. All rights reserved.
he following URLS lead to different articles on endometriosis.
Recurrence of Endometriosis Associated with Hormone Replacement Therapy in a Woman Following Hysterectomy:
http://www.obgyn.net/endo/articles/endo-hrt.htm
Autoimmune Disease More Likely with Endometriosis:
Results of SprayGel(TM) Adhesion Barrier System”
http://biz.yahoo.com/prnews/020301/nef012_1.html
Fighting Scar Tissue in the OR: New Surgical Gel Reduces Risk of Adhesions Forming After Gynecologic Surgery :
http://www.jnj.com/news_finance/457.htm
Endometriosis & Dioxin: a Toxic Link?:
http://www.menses.co.uk/tamponbad/endometriosis.htm
Successful Pregnancies after Endo
http://www.fertilitext.org/ubb/Forum20/HTML/000024.html
World’s First Womb Transplant
http://msn.thisislondon.co.uk/dynamic/news/top_story.html?in_review_id=515381
The information in this article is from the Endometriosis Association Newsletter Vol. 23, No.1, 2002.
The FDA has approved the use of Gynecare Inergel Solution, a gel that is poured into the abdomnial cavity after surgery to separate organs and tissues as they heal, during laparotomies. This gel, which hopefully prevents adhesions, has been in use in Europe since 1998 during both laparotomies and laprascopies.
28 February 2002
A woman has more than five times the normal risk of developing endometriosis if her sister has the
disease, according to research published today
(Thursday 28 February) in Europe’s leading
reproductive medicine journal, Human Reproduction*.
Moreover, even having a cousin with endometriosis
raises a woman’s risk by over 50%, according to the Icelandic team who carried out the research.
This is the first study to analyse the occurrence of
endometriosis across an entire population, and to
demonstrate an increased likelihood of developing
the disease between relatives outside the nuclear
family. It thus provides evidence of a significant
genetic component to endometriosis, as well as a
unique framework for identifying key genes involved in the development of the disease.
deCODE genetics, whose scientists led the research team, plans to use this information to develop a DNA-based test that can identify women at risk and make non-surgical diagnosis possible. This information will also be used to try to discover new treatments.
Endometriosis is a painful and distressing condition
in which endometrial tissue, which under normal
circumstances is found only in the lining of the
womb, develops outside the uterus and attaches itself to ligaments and organs in the abdominal cavity. This tissue responds to the menstrual cycle as though it were still inside the uterus. The repeated growth and disintegration of endometrial tissue in the abdomen can cause bleeding, pain, inflammation, adhesions and infertility. Between 1 and 5 percent of women are thought to suffer from endometriosis in their reproductive years.
The scientists from deCODE genetics and Iceland’s
National University Hospital, both based in Reykjavik, used deCODE’s unique genealogical database for the study. This computerised database includes the entire present-day Icelandic population of 290,000, as well as nearly 85% of all the Icelanders who have lived to adulthood since the country was settled in the ninth century.
“By using our population-wide genealogical resources and statistical models for measuring kinship, we have for the first time demonstrated the existence of a hereditary component to endometriosis that can be traced beyond first-generation relatives,” said Dr Kari Stefansson, Chief Executive Officer of deCODE and
co-author of the article. “This could not have been
achieved anywhere else in the world. The study is also important as the basis for a genome-wide scan to identify key genes that contribute to the disease. We are advancing in this effort, which we hope will contribute to the development of a DNA-based diagnostic test. Such a test would assist in diagnosing the disease and in identifying women at particular risk of endometriosis, without
the need for invasive procedures.”
Assisted by Professor Reynir Geirsson, chairman of the Department of Obstetrics and Gynecology at the National University Hospital, the researchers compiled a list of all 750 women in Iceland who had a surgical diagnosis of endometriosis between 1981 and 1993. This list was then run against deCODE’s geneaology database to analyse the women’s family connections. Applying several measures of familiality, deCODE’s scientists
demonstrated that the affected women were
significantly more interrelated than matched control
groups, highlighting the involvement of inherited
factors. All data on individuals in this research were anonymized and encrypted by the Icelandic government’s Data Protection Authority.
Although other research has reported an increased risk of endometriosis between first-degree relatives with the disease, this is the first in the world to demonstrate the link with cousins.
“It is extremely difficult in most countries to
discover whether second, third and fourth degree
relatives – and even more distant relatives – have
the disease. This is due in part to the fact that
endometriosis requires invasive surgery for accurate diagnosis, and is thus severely under diagnosed. Furthermore, people often don’t know who their non-immediate relatives are or, if they do, may not feel close enough to speak about medical histories,” said Dr Stefansson. “This has made it exceedingly difficult for researchers elsewhere to look at the disease beyond the nuclear family.”
Commented Professor Geirsson: “We found that among sisters there was a 5.2-fold increase in the risk of being diagnosed with endometriosis. The risk among first cousins was lower, but still significantly higher than in the control groups. Sisters share half of their genomes, but cousins share 12.5% and the difference seen for the latter group may therefore more accurately reflect the genetic liability.”
The research team emphasised that establishing the link between cousins was a crucial achievement. By looking at the population as a whole rather than just immediate family groups, and by counting only one member of each cluster of first degree relatives when calculating the relatedness of those with the disease, they had minimised bias. They had also gained a much
more accurate picture of endometriosis risk in a
society, rather than simply in a nuclear family. From
the inheritance pattern seen in the study it was also
evident that the genetic factors involved in
endometriosis can be inherited through paternal as
well as maternal lines.
One message to emerge from the study is that women who want children but have endometriosis in the family might consider pregnancy earlier rather than later in their reproductive life, as the condition does tend to progress with time. Also, if a woman had many of the symptoms of endometriosis and a relative with the condition, she and her doctor may want to consider her having a laparoscopy to confirm or rule-out the condition.
* Genetic factors contribute to the risk of developing endometriosis. Human Reproduction.
Vol.17. No.3. pp 555-559.
Source: Human Reproduction (Journal of the European Society of Human Reproduction and Embryology)
© Health-News.co.uk, a division of Health Media Group
Lupron Depot interrupts normal menstruation and the production of estrogen.
The absence of estrogen reduces the growth of endometrial tissue. In some cases, Lupron can shrink the implants and provide significant relief from pain.
This medication creates a pseudo-menopause. Even though most women stop having periods during treatment, occasional spotting can occur. If you continue to have regular menstruation after your second injection, you should notify your physician. You could also experience hot flashes, headaches and vaginal dryness, which are menopausal symptoms.
A reduction in estrogen might also cause a reduction in bone mineral density. Once treatment is stopped, this is partially or completely recovered.
©Abbot Laboratories, Limited LUG/4A01 – April 1998
This article contains information on Lupron that I have gotten from the Inserts that came with my first Lupron shot.
From the Patient Information Insert that came with my Lupron shot:
-it is for intramuscular use only
-it comes in 3.75mg (1-Month slow release) and 11.25mg (3-Month slow release)
-it’s limited to women 18 years of age and over
-the proper use of Lupron Depot:
-very important your physician checks your progress at regular check-ups
-you might get a local skin reaction: itching, redness, burning and/or swelling at the injection site; the reactions are usually mild and disappear within a few days; if they persist or worsen, tell your physician
-you might get hot flashes; if they continue and make you feel uncomfortable, tell your physician
-if you develop: severe bone pain, severe hot flashes, heavy sweating, severe pain in the chest or abdomen, abnormal swelling or numbness of limbs, persistent nausea or vomiting, rapid heart beat or nervousness, contact your physician immediately
–if you think you might be pregnant, contact your physician immediately
-always remember to:
-check with your physician or pharmacist before taking any other medications, including non-prescription (for colds, nausea)
The above information was from the Patient Information insert distributed by ABBOT LABORATORIES, LIMITED October 1999
From another Information Insert that came with my Lupron shot:
Lupron Depot is also known as leuprolide acetate for depot suspension; this is a synthetic, nonapeptide analog of naturally occurring gonadotropin-releasing hormone (GnRH or LHRH)
-it acts as a potent inhibitor of gonadotropin production when administered properly
-it exerts specific action on the pituitary gonadotrophs and the human reproductive tract
General Warnings from the Insert:
-isolated cases of short-term worsening of signs and symptoms have been reported during initiation of Lupron therapy
General Precautions from the Insert:
-those on Lupron therapy should be assessed on a regular basis by their attending physician
Adverse Reactions:
-body odour, flu symptoms, injection site reactions, palpitations, syncope, tachycardia, dry mouth, thirst, appetite changes, anxiety, personality disorder, memory disorder, delusions, insomnia/sleep disorders, androgen-like effects, alopecia, hair disorder, nail disorder, ecchymosis, lymphadenopathy, rhinitis, ophthalmologic disorders, conjunctivitis, taste perversion, dysuria, lactation, menstrual disorders
-mood swings, including depression, have been reported as physiological effect of decreased sex steroids
-the following symptoms have been reported by patients while using this medication, but the relationship of the symptoms to Lupron hasn’t been established
-symptoms consistent with fibromyalgia (joint and muscle pain, headaches, sleep disorders, gastrointestinal distress, and shortness of breath)
The above information was from an insert that was distributed by ABBOT LABORATORIES, LIMITED July 1999
On August 22nd, 2001, I received a response from my MPP in regards to the letter that I had sent him on Endometriosis. All it stated was that he had forwarded my letter onto the Minister of Health and that if I had any further concerns or comments to get in touch with him again. Make sure to read the response from the Minister of Health.
LIVING WITH ENDOMETRIOSIS
“THE LETTER FROM SURVIVORS”
THIS LETTER IS FOR ALL OF US
Dear Parents, Partners, Friends, Families, Employers & Doctors:
We have spent the last years of our lives apologising for being stricken with a disease we did nothing to contract, and we can do it no longer. We are not responsible for not living up to your expectations the way you think we should. What you seem to fail to realise, 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 capabilities.
We are not lazy, we are not winners, and 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 exhibit the disease in our every day 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 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 defined cause or absolute cure.
When we can’t have intimate relations with our partners, it is not because we don’t love you or not want to. It’s because we can’t. It hurts too much. And we aren’t feeling very 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 ar all having such a nice time with your children and loved ones – we can’t remember the last time, or the last time 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 of passed this disease down through our blood into 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 caretakes, 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 we ever are. You are appreciated more than words can ever say.
DON’T GIVE UP ON US NOW.
As medical professionals, 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’s “normal for women 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 to 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 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 appointment, what surgery we are going to have next, and why we feel so sick all the time. This is not 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 pain 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 we have been dealing with infertility for the last however many years). We in our 20s and 30s 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 the insurance companies don’t deem necessary, or worse, we deplete our savings because we 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 war we wage just to try and live with some modicum of normalcy don’t make it harder on us by not seeing the reason 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 contribue meaningfully to our work environments. We can stop taking the pain killers 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?
THINK ABOUT IT.
~The Sentiments of Millions of Endometriosis Survivors around the World
Copyright (c) 1997-2001 by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author
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