Category: Endometriosis News & Updates

Endometriosis Treatment Danger

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.

URLS that lead to different articles on Endometriosis

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

Genetic Link to Endometriosis – Unique Icelandic Study

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

Post Traumatic Endometriosis Syndrome

hink I might be suffering from “Post Traumatic Endometriosis Syndrome.”
The DSM-IV classifies “Post Traumatic Stress Syndrome” as having the following criteria:

The person has experienced a traumatic event that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others, and the person’s response involved intense fear, helplessness, or horror;

The traumatic event is re-experienced in specific ways such as recurrent and intrusive distressing recollections or dreams of the event;

Persistent avoidance of stimuli associated with the trauma or numbing of general responsiveness;

Persistent symptoms of increased arousal, such as hypervigilance or irritability;

Duration of the disturbance is more than one month; and

The disturbance causes clinically significant distress or impairment in functioning.

I can’t find any classifications in the DSM-IV for the following, more specific criteria:

The person has experienced a traumatic event such as Endometriosis, in which she sustained repeat surgeries and/or ineffective medications, to which her response involved intense fear, helplessness, horror and suffering in silence;

The traumatic events of life with her incurable disease is re-experienced in specific ways such as recurrent and intrusive distressing recollections or dreams, such as memories of surgery and/or ongoing or previous pain associated with the disease;

Persistent avoidance of stimuli associated with the trauma or numbing of general responsiveness, such as the avoidance of normal social interaction, for fear of having a “pain attack,” or avoidance of such settings as baby showers and the like, for fear of having an emotional breakdown due to one’s own infertility;

Persistent symptoms of increased irritability, due to living in chronic pain and having such symptoms summarily dismissed on a regular basis by healthcare providers and loved ones alike;

Duration of the disturbance is more than one month, sometimes even more than 15 or 20 years; and

The disease causes clinically significant distress or impairment in functioning.

I qualify for almost all of the above criteria. Anyone else? Having not been able to find a suitable classification for this disorder, I have now begun calling it “Post Traumatic Endometriosis Syndrome.” It fits.

Rarely do I share such personal introspection on my private battle with the disease, for I fear to do so would show a crack in my armor of hope. I have been Endometriosis-free for nearly 3 1/2 years – physically. Mentally, I still live in the shadow of the dragon, fearing that it will someday return. Like a bad dream, my memories of how it was to live everyday in pain and emotional anguish haunt me. It further saddens me to see so many women still suffering, even in this day and age of supposed medical miracles. Where is the CURE?

I wonder if I will ever be truly free from the encumbrance of this disease? Thanks to a wonderful specialist, I am physically disease-free, and what’s more, I won my 6 year battle over Endometriosis-related infertility, having my miracle child before succumbing to a complete hysterectomy. I beat my Endometriosis!

So why am I still worried about an illness that should be nothing more than just a fleeting memory?

I may be “well” of Endometriosis, but the disease has made a lasting mark on my body – and my soul. The residual post-Endometriosis problems I deal with now are negligible compared to my 15 year battle against stage 4 disease…but they remind me that I am only but one step ahead of Endometriosis at all times. People often ask me why I still frequent the online Endometriosis community spots and why I have dedicated my life’s work to raising awareness and providing education about the disease, even though I am “well.” The truth of the matter is, I feel if I do not continue my efforts, then I discontinue my fight against the disease altogether.

“Post Traumatic Endometriosis Syndrome” or not, I intend to see this battle through to the end, resting only when the disease is eradicated from all of our lives for good. Join me in the war against this enigmatic illness – arm yourselves with knowledge, hope for the future, and the assuredness that our time of victory over Endometriosis will come one day soon.


Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.

Ovaries grafted on to women’s arms – Wednesday 26th September 2001

Ovaries grafted on to women’s arms

Doctors in the US have transplanted ovarian tissue from two women on to their forearms to help them produce healthy eggs.

The women have been unable to have children because of medical problems – cervical cancer and benign ovarian cysts.

Their ovaries now function as they did in their original position, with the forearm growing and shrinking during the monthly menstrual cycle.

Dr Kutluk Oktay, from the Weill Medical College of Cornell University, New York City, told Ananova: “This was about taking ovarian tissue from women undergoing radiation therapy for cancer, or women undergoing ovarian removal for benign ovarian disease, then grafting them underneath the skin.”

He said after two to four months the tissue started functioning and the patients started to produce eggs.

“In my estimation around 50,000 women of reproductive age are diagnosed with cancer each year, as well as 10,000 women who require surgery for benign cysts or endometriosis,” he said.

“With this ovarian tissue being removed and frozen and then transplanted in the arm following radiation treatment,or transplanted freely into the arm and then being lifted above the area being affected by radiation, these women will not have to have menopausal treatment and can produce healthy eggs.”

A full report can be found in the Journal of the American Medical Association.

Story filed: 22:05 Wednesday 26th September 2001

Story from ananova – url below.

http://www.ananova.com/news/story/sm_408923.html

Arianna’s Letter to her MP

Dear Mr. Hodgson,

I am writing to you today in hopes of helping to raise awareness of the need for increased research into women’s health issues. Specifically, I would like to address the disease known as endometriosis because as a woman, who suffers from endometriosis, I feel that the health services offered are not adequate.

As you may not know what endometriosis is I will tell you a bit about it. Endometriosis affects at least 5.5 million women in Canada and the United States. It is not fatal but it certainly can bring a lot of grief and suffering, both emotional as well as physical. Endometriosis is a gynaecological condition that affects women of any age, race or class. It is when tissue similar to the endometrium – womb lining – is found outside of the uterus. This ectopic tissue responds to normal hormonal surges, to grow or shed, but the blood generated has nowhere to go, so causes pain, inflammation, and adhesions. Endo can grow anywhere in the body except on the spleen. Some of the more common symptoms include but are not limited to:

-> PAIN which can be experienced before or during menstrual periods or continuously throughout the month; the pain can be a typical low pelvic cramping, pain with sexual intercourse, with bowel movements, merely with movement, at rest; pain can be diverse depending on the location of the endometrial growth.

->INFERTILITY. Many women have great difficulty conceiving and indeed may never become pregnant despite invasive, risky and expensive medical procedures and treatments. In some cases, OHIP does not cover IVF and other procedures.

-> BOWEL/BLADDER COMPLICATIONS. Diarrhoea, constipation, rectal pain or pain with bowel movements, symptoms of bowel obstruction or pain with voiding may occur – it has sometimes been mistaken for appendicitis.

->HEAVY OR IRREGULAR BLEEDING.

->FATIGUE, LOW ENERGY, DIZZINESS, HEADACHES.

-> LOW RESISTANCE TO INFECTION.

-> NAUSEA, ABDOMINAL BLOATING.

-> LOW GRADE FEVER.

-> ANGER/FRUSTRATION with chronic disease, missed time at work, decreased energy for home/family life

I have suffered from this disease since my periods began and will continue to suffer for the rest of my life, as there is no cure.

Doctors who treat the disease are almost impossible to find without calling several ob/gyns who might know something about it. According to the woman that I spoke to at the College of Medical Doctors and Surgeons – endometriosis isn’t a specialisation; it’s a hobby. Doctors and the general public are misinformed about the disease, which is very unfortunate as many women suffer since puberty. I have included a letter and a brochure, which may help you to understand the disease and what the many women who suffer from it go through every day.

On July 29th, I called Telehealth because I was in a lot of pain and both my family doctor and my specialist are on holidays. The woman I spoke to, although polite, had very little knowledge about endometriosis and the knowledge she did have was wrong. When I told her that I had been diagnosed with endometriosis on my ureter she told me that this was not possible, as endometriosis did not occur anywhere but in the uterus. This is of course not true, and I told her so. Endometriosis can occur anywhere in the body; there have even been cases of it occurring in the nasal cavity. After I told her that I was experiencing pain from my endometriosis – but never the pain I was currently experiencing and calling about, she said that I could not be suffering from endometriosis pain as I did not have my period. This is also not true, as pain caused by endometriosis can occur at any point in time. Like myself, many of the women who have endometriosis suffer from pain 24/7.

Many women become very frustrated, angry and upset after visiting doctor after doctor who just tell them that experiencing crippling pain every month or constantly or having pain during intercourse, is “normal” and to “live with it” or “all women have a bit of pain during their period”. We are not being heard and our doctors/health care system, do not care that we suffer a great deal of pain and cannot lead a fulfilling life.

The treatment options for endometriosis vary from surgical castration (removal of uterus, tubes and ovaries) with the risks associated with a major surgery, the potential of complications of instant menopause like osteoporosis, heart disease and depression, to medical options such as danazol (a synthetic male hormone) which may cause irreversible side effects such as facial hair, deepening of the voice, acne and clitoral enlargement among others. Most women end up having to use high doses of painkillers every single day of their lives just so that they may get out of bed and try to have a normal life.

This disease can make a woman infertile or even cause her to never be able to bring a baby to full term. It is often hard for a woman who suffers from endometriosis to work full time, or even take care of her family, if she is one of the lucky ones to have one, and do simple chores around the house. It sometimes makes a woman feel very un-woman like at all.

It is about time there was more awareness of the disease and that all women who have either already been diagnosed or awaiting diagnosis, were given better care. Being fobbed off by doctors repeatedly saying it’s normal is unacceptable.

A list of Doctors who treat endometriosis should be made available to women, and their general practitioners, who have the disease or need to be diagnosed. More public awareness is needed, as there are many myths that need to be dispelled.

I would like to hear from you in writing regarding this issue. If you would like further information please don’t hesitate to contact me, or contact the Endometriosis Association (8585 N. 76th Place, Milwaukee, Wisconsin 53223; 1-800-992-3636).

Sincerely,

Arianna Chiasson

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