Notes from Dr. Laufer's presentation, March 19, 2003

From one member:
We no longer need to do a laparoscopy to get a definitive diagnosis of endometriosis. We now can make a diagnosis by giving Lupron and then watching for a change. If you lived in California and had Kaiser Insurance, you couldn't even have a laparoscopy---it's cheaper to give Lupron than to do a laparoscopy.

Preparing the bowel before a laparoscopy is considered 'good insurance'. During surgery, if there's a hole and a bowel prep (done beforehand), then we just sew the hole. If we make a hole and there was no bowel prep, then you're looking at a colostomy.

You can get cancer in an endometrioma. I've seen two cases in 16 years. If the ultrasound shows both solid and liquid in the mass, then we'll do a laparotomy.

Subtle lesions of endo cause more pain. Adhesions come from scar tissue and are caused by: endometriosis, infection and previous surgery. Raw surfaces attract and want to stick back together. There have been advances in preventing adhesions. In December '01 the FDA approved a Johnson and Johnson product called "Intergel". This product isn't perfect but we find a 60% reduction in adhesions with its use. Intergel can only be used during a laparotomy. Intergel isn't perfect---we've seen patients be re-admitted to the hospital within 2-3 weeks after surgery where Intergel was used. These patients present with pain and fever. We admit them for a few days, give them pain medication and monitor them. Most likely, they're experiencing a chemical reaction to the gel as it reacts with the fibroblasts. We have to make sure the gel doesn't get in any wounds, and a patient's belly is very distended for a few weeks after surgery as the stuff sloshes around, preventing the raw surfaces from touching.

Medications don't help adhesions. A frozen pelvis means that everything in there is stuck together. Adhesions can cause bowel obstructions.

A hysterectomy and ovary removal will give a 90%+ range of success in reducing endometriosis symptoms. We may not get rid of all of it during surgery because of the microscopic remnants. We have to explore the bowel during a hysterectomy and feel the intestine up and down to make sure there's no blockage. After a hysterectomy, we give patients a prescription for "Estrotest HS" (half-strength), which is a combination of low dose estrogen and low dose testosterone. She can fill the prescription anytime depending upon the side effects she feels after the surgery. We can maintain the cervix now during a hysterectomy whereas before we took it, too.

The "Kistner Technique" is a low dose Pill taken continuously, which puts the body into what's called "pseudopregnancy". Patients should start on the Pill first, monitor their symptoms, and then only go on to take Lupron if they have breakthrough pain while on the Pill. Dr. Hornstein (Mark Hornstein at the Brigham) just got a NIH grant to research Lupron and the Pill and their differences. Now there's a Pill called Seasonale where women who take it only have a period four times a year. If you don't take some kind of medication after surgery for endometriosis, within 1-2 years you're back in pain and facing another laparoscopy.

Depo-Provera is the most commonly used birth control in the world. We give the shot for three months at a time. If we just gave it in a one month dose, no one would take it again because of the side effects, which usually take three months to subside. Lupron is used for: endometriosis, prostate cancer and precocious puberty. A patient starts Lupron for three months with add back estrogen, like 5 mg. of Agestin. This is called the Estrogen Threshold Hypothesis, or "add back", which is taking enough estrogen to preserve bones and prevent side effects while on Lupron.

Women who still have pain after a hysterectomy and aren't taking HRT may be influenced by the estrogen found in their fat cells.

Hospital-based acupuncture now is OK'd by most health insurance.

I've seen patients as young as eight years old with endometriosis---girls who have endometriosis before their period even begins; in one case, before the girl even had any breast tissue.

From another member:
Here are brief clippings of notes I took. Excuse the fragments... but I am short on time. Many things you already know...

  • Endo-such a challenge because it is poorly understood
  • No one agrees on treatment
  • Don't need a lap to diagnose anymore
  • Symptoms are varied, but from a fertility point of view, it is better to have pain associated with endo to preserve endo (I'm not sure why.
  • I guess because it makes you take notice and treat it.)
  • In California Keiser (sp?) Insurance insists on patients using Lupron before a lap can be done.
  • Endo symptoms: pain, gastro symptoms, urinary symptoms, bladder symptoms, nonspecific symptoms, pain with or without period cycle, with adolescents pain anytime during the month. Most adolescents have non-cyclular pain and that often misleads doctors. Hard to figure out that endo is the cause hence patients sent to urologists and other specialists first.
  • No blood tests available to diagnose endo but in trial in Canada now
  • Ultrasound only good to detect endo if endo is on ovary
  • Cancer very rarely occurs from endo but does occur
  • Initial treatment for pain with period only should be BCP; if pain doesn't get better, possibly endo.
  • Adhesions: thin or thick, dead tissue, things sticking together that shouldn't be. Causes: endo, infection, previous surgeries. Lupron won't treat adhesions. Laparoscopies cause less adhesions than laparotomies. Need a lap to diagnose. Removal of adhesions can be done by cutting, laser, or scalpel. All are fine and you should allow the doctor to do whichever procedure he/she is most comfortable with. Intergel put on adhesion areas. FDA approved 2001; thought great; not perfect; Problems with it: within two to three weeks increased pain and fever have occurred. He has had to hospitalize some patients due to it. Symptoms go away in time. Cause not known, possible a reaction to the chemicals. It is suggested that a laparotomy be done when using, but he does use with laparoscopies. Squirts in. Believed result is a 60% reduction of adhesions.
  • Endo removal -- should be removed as you would a cancer: remove as much as possible and use meds to treat later.
  • Treatment: surgery to preserve fertility; if no pregnancy is to be considered: hysterectomy with removal of both ovaries. Ovaries left in will still feed endo. Cervix can remain unless endo there or in vagina. Hormone replacement therapy can still be taken after hyst. Controversial topic right now that he would rather not get into. He lets people decide for themselves. Estrotest is normal hormonal therapy he feels is good. Low dosage or testosterone.
  • He has four young girls who have had endo before they ever got their periods. Their mothers have endo.
  • He has done surgery for endo on children as young as 8.
  • women generally getting periods earlier
  • milk product could lead to more breast cancer (he is not letting his children drink milk)
  • Treatment of Endo: estrogen and progesterone by pill, patch or ring; important to take the pill at the exact time to avoid bleeding
  • No great studies comparing one technique to another because no one wants to pay for it. A study is now starting for BCP and Lupron
  • Continuos BCP is safe; he has patients who have been on it for 14 years Most women will still get 4 periods a year on continuos BCP BCP not totally effective to prevent pregnancy
  • Studies show that many people who use only surgery for endo will have probably have surgery again in 1-2 years. Teamtment needs to be continous, like with BCP. Dr. Laufer disagrees with Dr. Redwine that surgery alone can cure endo
  • gall stones can be a side effect of BCP