Endosupp – Endometriosis Support and Information A support site with information about Endometriosis, latest news and research as it happens!

A paper that was presented at the American Collage of Obstetricians and Gynaecologist’s Annual Clinical Meeting this year has said that Drinking Red Wine may be good for health and may help to prevent Endometriosis.

The research in the paper has shown that mice with endometriosis were given doses of compunds found in soy and red wine the activity and growth rate of the tissue was decresed and the size also was reduced.

In conclusion Sharai C. Amaya of Greenville Hospital in South Carolina along with her co-authors say “Further studies are required in humans to investigate the role of dietary compunds such as soy (geninstein) or red wine (resveratol) on both gynecologic health and disease”.

Story gleaned from Endometriosis News & Demo-research.

Posted under Endometriosis News & Updates

This relates to our U.S. readers only at present as far as we are aware – if anyone has other info let us know.

First new treatment to be approved for Endometriosis in 15 years.  

Depo subQ provera 104 (yes it’s a mouthful – a form of Depo Provera) has been approved for treatment – the drug is made by Pfeizer and contains 104 mg medroxyprogesterone acetate and can treat endometriosis pain as effectively as leuprolide acetate, but is associated with significantly less bone loss over the course of treatment.

It also has fewer side effects also associated with prior treatments.  

Hopefully this will benefit many sufferers as one of the major problems with previous treatments, as our readers will know, is the bone density loss, which if not monitored has led to problems for people in later life, along with some very severe side-effects to sensitive people.  

Anyone who has treatment from this new drug please get in touch with us and let us know by emailing info@endosupp.com .

Posted under Endometriosis News & Updates, Treatment of Endometriosis

Just spotted this little snippet on the bbc:  http://news.bbc.co.uk/1/hi/health/7612083.stm

With Jade Goody set to undergo a hysterectomy after being diagnosed with cervical cancer. Earlier this month there have been a few articles about the treatment of cervical cancer and hysterectomy’s, in this BBC article a mention is made to Endometriosis, which apparently makes such surgery more difficult.

It doesn’t go into detail, however we suspect it’s due to the presence of scar tissue where operations have been undertaken previously, along with, in extreme cases, acute adhesions which can distort and weld the organs together making such work difficult, if anyone can point us to any information about increased risk or difficulties due to Endo in this sort of treatment let us know.

when it comes to cancer, a hysterectomy is not as straightforward as it can be when done for other conditions.

“With a simple hysterectomy the cervix and the womb are removed and it could take less than an hour,” Kehoe explains.

“But for cancer we do a radical hysterectomy where we remove the womb, cervix, some of the vagina and the lymph nodes in the pelvis to make sure the disease hasn’t spread.”

This more major surgery is more likely to take two to three hours or even much longer if there are complications.

“You might find the disease has spread to other areas that you hadn’t anticipated or you might get technical difficulties for example if the woman has endometriosis,” he says.

Posted under Endometriosis Information, Endometriosis News & Updates, Treatment of Endometriosis

From http://wjz.com/local/doctors.endometriosis.treatment.2.815382.html 

This article talks about a new approach being tried to treat the pain of Endometriosis, by combining aromatase inhibitors with the drug Lupron.  This appears to be successful for some women – though of course the side effects and as documented on this site – sometimes the permanent long-lasting side-effects.

The strongest pain medications like narcotics may take care of it for two to three hours, but the pain still comes back.

Now doctors have found a way to relieve the pain with a pill. They’re combining aromatase inhibitors with the endometriosis drug Lupron. 

“When you use the combination of these two drugs, you have a better chance,” Dr. Barrueto said.

Dr. Barrueto says aromatase inhibitors block the production of estrogen which suppresses the growth of endometriosis and reduces inflammation.

But the drugs are not without side effects.  Some of the most common ones are hot flashes, mood swings and reduced libido.

…

Dr. Barrueto says 60 percent of patients who use this combined therapy will experience a significant reduction in their pain.

Aromatase inhibitors have been well established in the treatment of breast cancer, a therapy discovered by a Baltimore scientist.

We hope this treatment does lead to increased pain relief, but also hope that doctors continue to do proper tests on items such as bone density tests and monitoring reactions to the drugs.

Posted under Endometriosis News & Updates, Treatment of Endometriosis

Chronically Ill Enthusiastically Anticipate Virtual Internet Conference Sept 8-12

Press Release posted on http://www.sbwire.com/news/view/21215 - some excerpts are below for your reading pleasure as normal…

Traveling expenses, hard beds, peers wearing too much perfume, long treks to conference rooms, and exhausting days make up the typical conference–all which make it nearly impossible for the chronically ill to attend events where they can find encouragement and education. National Invisible Chronic Illness Awareness Week’s “virtual” conference online is more than just practical. It’s necessary

 

One of the ways to meet the needs of the chronically ill is to provide the type of forum where they can learn, connect with others and interact with professionals. For the chronically ill, who typically have difficulty sleeping, extreme fatigue, trouble walking and sitting, and even chemical sensitivities, a virtual conference, where people can stay comfortable, attend free and avoid traveling is the perfect fit. 

Four seminars per day, Monday through Friday, September 8-12, are available at www.invisibleillness.com and all will be recorded and archived. 

Hundreds of people are also blogging for awareness about invisible illness issues on September 8, 2008. For more information see http://www.invisibleillnessblog.com 

 

Media Relations Contact

Lisa Copen  
Director
National Invisible Chronic Illness Awareness Week
858-486-4685
http://www.invisibleillness.com

 

At last this seems to be a step in the right direction for people who suffer badly from diseases like Endometriosis, it will be intresting to see if any post awareness week articles and press releases give us some info on how successful it was.

Posted under Endometriosis News & Updates, Other News

Neurocrine studied 252 patients, with a confirmed diagnosis of endometriosis. The company split the group into 3 sets for treatment over 6 months.

• elagolix 150mg once daily  (new drug)
• elagolix 75mg twice daily  (new drug)
• depo provera 104 (DMPA)  (common treatment)

Posted under Endometriosis News & Updates, Treatment of Endometriosis

The story in this news article is a moving one, basically about a woman who has been mis-diagnosed with endometriosis many times when her condition is much rarer – so I do feel for her and we can all relate!.

However, the reason why this is apearing here, is that the article goes to explain that endometriosis is:

The common wrong conclusion was that Tara had endometriosis, which occurs when endometrial tissue — tissue normally found only in the lining of the uterus — grows elsewhere in the reproductive system and even in the intestines.

Which we all know is WRONG – on this site we have numerous entries about endo elsewhere, even with a couple about endo in the LUNG which is a little bit removed from the area’s above.  This sort of mis-information doesn’t really help much – though at least they have it right for the majority of known sufferer’s I suppose!

Anyway we are going to make a new section for “wrong news on endometriosis” – which might be fun!

p.s. original article here http://www.newstimes.com/ci_10386222

Posted under Wrong News on Endometriosis

Posted under Endometriosis News & Updates

In the british press and some medical journal sites an intresting story appeared today.

Scientists at the University of Liverpool have identified an enzyme which could be a cause of endometriosis.

Below are links to the Daily Mail article (bit short on facts) and a link to an article on breakthrough digest (bit more technical – more detail).

The bottom line is that an enzyme which is not normally seen in the body except in the lining of the womb is present in women with endometriosis outside of the womb and some cancer cells.

Telomerase is an enzyme normally released by cells in the lining of the womb early on in the menstrual cycle, however women with endometriosis also appear to release the enzyme during the later stages of the cycle, this causes the cells to continue to divide and replicate (and is one of the reasons why it exists in cancer cells).

As a result of this these cells divide more often and can survive longer outside the womb to implant themselves in other parts of the body – where they continue to thrive. Of course this continued survival is culmulative and gets worse as more cells exist outside where they should.

There is also a link being drawn to infertility as these cells may make the womb less hospitable to newly fertilised eggs / embryo’s thus causing implantation to not be successful.

The cyclical nature of this also co-incides with many women’s pain cycles with Endometriosis, even when pain occurs elsewhere in the body to the pelvic region.

Daily Mail Article

Breakthrough Article

Posted under Endometriosis News & Updates

These tips were posted on alt.support.endometriosis by Eileen. She has been good enough to let me post them on our site in hopes of helping others find a good doctor.

How do I know what doctor to use, if they have extensive experience with endo?

This is a great question. Too often we find out after the fact. that there is a great “skill gap” in doctor’s understanding of and ability to treat endo.
1. First and foremost YOU get educated. Then when you are talking to a doctor YOU will know if they are educated on the topic or not.
Read the Endometriosis Sourcebook by Mary Lou Ballewig. Its an easy read.. and then you will be more knowledgeable about endo than most
run of the mills docs.

2. Talk to other women with endo… who are “ahead” of you in the game. You will find out what did and didnt work for them. You will find out who got relief and how.

3. Read the web pages of a few of the top pioneers in endo treatment. These guys have done thousands of cases of endometriosis. It is the sole focus of their practice… endo surgery. They have a lot of important information. ( for example…. they can all tell you about the numbers of women that have come to them AFTER hysts.. because of ongoing endo pain… Well.. of course this is contrary to doctors who will tell you that the hyst will cure your endo… in these cases… the women had hysts… BUT the unskilled gyn did not remove all their endo at the time of hyst )

4. Accept the idea that this is not a perfect world and that doctors do not always know everything.. also..many doctors will not TELL you when they dont know ( this is unethical in my opinion.. but nonetheless it goes on all the time ) Many women when first confronted with this reality that their gyns dont have a clue in helping them with their endo… they cant “believe” it. I guess because we are brought up in a culture that glorifies doctors and gives them status… no matter what they know or dont know. I always tell women… Don’t screw around with the B team. Go right to the A team.. and get the best treatment for your endo.
YES it might cost more
Yes you might have to travel
Yes its not convenient.
Yes insurance will complain and not want to pay
Yes.. you may have to take out a loan to get good health care

I know.. none of that is “fair”… but as years go by and the quality of your life.. your pain.. your phsyical welfare suffers… how much is that worth
??? That question is eventually answered by each of us who has endo. Dont “wait” for the any system to help you.. Give yourself the best shot you can. There ARE doctors who have made it their business to know endo.. and help us with it. Give THEM your money.

Finally, while these top experts are all great.. there is a new group of doctors who have come up.. learning from these top guys… and they are practicing good endo treatment…. and they might not have a web site..or a national reputation… BUT.. they will have studied what the experts have published and proven.

I wish you the best.. in fact I wish all of us the best. I encourage each of us to love ourselves enough to keep partnering with health care practicioners who are educated, skilled, and caring.
Love to all
Eileen K

Posted under Endometriosis News & Updates, FAQs, Recommended Doctors