Some online resources about endometriosis.

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I stumbled across the following page today:

http://www.nlm.nih.gov/medlineplus/tutorials/endometriosis/htm/index.htm

It’s quite intresting actually, the information is not all encompassing, but it is good and might be something for partners and family to look at – and even some GP’s and Family Doctors!

Basically there are several ways to view the information – the text view just gives a summary of facts and information on endo, and another view which goes through the tutorial without asking questions.

The best is the first one, which shows the tutorial, it then asks questions throughout just to make sure someone has been reading.  it’s worth a look, I don’t think it’s new – form the copyright around 2004.

But anything that helps people to

  • Understand Endometriosis
  • Learn how it affects women
  • Learn how it might be treated and that options are available.
  • Learn how they can support people with endometriosis.

Points That Should Be Known About Lupron (Prostap)

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It has come to my attention that many people are being told that as long as they take HRT they can have Lupron as many times as they wish. This isn’t exactly true.

While it is not illegal for doctor’s to prescribe Lupron (Prostap), it is stated in the leaflet insert that is in the injection kit that: “The safety of
re-treatment as well as treatment beyond 6 months with Lupron has not been established.” This statement indicates that they have no idea how safe it is to have Lupron (Prostap) for more than 6 months at a time, or to even have it for more than one course.

People who have this medication should also have regular bone density scans to check whether or not this medication is affecting their bone density. Anyone who is going to have more than 1 6-month course should definitely make sure they receive one of these scans before beginning another course.

I would also recommend that before starting this treatment, you research the drug very carefully so that you fully understand the impact that it could have on your life.

Possible cause of Endometriosis Found.

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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

Endometriosis of the Lung – from Dr Cook Archives

Question:
I’ve been told that endometriosis can spread outside of the pelvic area and I even heard of a woman with endometriosis who’s lung collapsed every time she had a period. Can endometriosis really spread to the lungs?

Answer:
Yes, while it is rare, endometriosis can grow in the lung…

. This is also known as thoracic endometriosis. There are two basic types of thoracic endometriosis. Thoracic endometriosis can be divided into pleural endometriosis (the lining of the lung) and parenchymal endometriosis (the lung itself). The majority of cases of pulmonary endometriosis occur in the pleura rather than the lung itself (about 5:1 – pleura:parenchyma).

PLEURAL ENDOMETRIOSIS:
The vast majority of patients with pleural endometriosis experience difficulty breathing (shortness of breath), pain, and pneumothorax (collapsed lung) or pleural effusion (water on the lung). Over 90% of cases are right sided. It is not uncommon to find small holes in the diaphragm. The majority of patients with pleural endometriosis also have pelvic endometriosis, raising the question if spread of the endometriosis is via the small holes in the diaphragm.

for more information visit
http://www.drcook.com/adca8.html

The above information is an excerpt from the weblink above from the Dr Cook website.

Adhesions in relation to Laparotmy and Laparoscopy

This article goes into some details on adhesions and Laparatomy and Laparoscopy operations.

Both of these methods can cause adhesions – laparatomies are more invasive and have got a higher incidence of adhesions. This is probably because less tissue is actually handled and therefore damaged in a laparoscopy.

Most adhesions apparently occur on the ovary causing moderate attachment to other organs.

However information points to the fact that at the actual site of incisions the chance of adhesions are the same – some stats from clinical studies are:-

Removing Endometriosis with a Laparotomy the chance of adhesions is 85 percent.

Removing Endometriosis with a Laparoscopy the chance of adhesions is down to less than 5 percent.

This implies that laparoscopies are significantly better in respect to removing endo – and indeed many more laparoscopies appear to be being performed nowadays than ten years ago helping endo suffer’s obtain some relief.

The information in this article is a compilation of articles found during a search on www.google.com

How To Find a Good Endometriosis (Endo) Doctor.

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

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