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We hope to start finding out the information about more of these conferences as the site grows and our userbase continues to expand.
For our users from Australia here’s info about the fertility society of australia’s conference dates this year (2008). Since our personal IVF was successful – and the main reason for needing this was due to the endometriosis causing infertility problems I think these advances are very very important.
Posted on http://info4endo.com/2008/08/29/fertility-society-australia-2008-conference/ .
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When & Where
19 to 22 October 2008
Hilton Hotel, Brisbane
Theme: Working Together For Reproductive Health
The conference theme, “Working Together For Reproductive Health” guided the development of the sessions, though we retained some of the discipline based sessions. This theme was chosen to highlight potential benefits for our patients if we all recognize our respective skill sets and organise ourselves around a common theme. The overall aim of the program is to provide sessions that stimulate further discussions with your colleagues in the many IVF Units in Australia and New Zealand.
Jonathan Van Blerkom
Andrew Van Steirteghem
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.
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
It is important to note that the following are only suggestions. They are in no way intended to be construed as medical advice.
You do not need to be a diagnosed patient to use these suggestions – please adapt to suit your own needs.
We’ve all been there: draped in a paper gown with our clothes and our dignity in a little pile on the chair next to the cold, uncomfortable table we wait (and wait – and wait) for the doctor on. When the doctor finally arrives for your allotted 15 minute visit, you try to cram as much information into one sentence as you can – while enduring invasions from cold speculums and other instruments of torture. When the pelvic exam is over, the doc stands up and announces cheerily, “everything looks great! See you in 6 months!” You get dressed and wonder if he actually heard your complaints of pelvic pain, irregular bleeding, medication intolerance, etc.etc. You go home feeling worse than you did before you got there and wonder if you will ever get help from the medical establishment.
This is a sad reality of life with this disease for many of us. Did you know the average delay in diagnosis for an Endometriosis patient is a staggering 9 years?
So how do we become partners in our healthcare and get our physicians to listen? Believe it or not, it is possible!
First, Find a Doctor who can Successfully Treat your Endometriosis
OBGYN is the discipline that primarily treats Endometriosis. You may also want to consider seeing a Reproductive Endocrinologist or other health care professional depending upon your own situation; however, the questions below are formatted with an OBGYN in mind. Adapt to whichever practitioner you might be seeing.
The best Endo doctor referrals seem to come from word of mouth. Talk to other Endo patients and find out who their doctor is, what they think of him/her and if they would feel comfortable recommending you. Contact Support Groups in your community, talk to the Endometriosis Research Center, search internet message board communities for positive references, call your local hospital, state medical board and even the AMA if you need to. There are several Endo experts out there, many of whom take various forms of insurance. Seek and ye shall find a practitioner to suit your needs.
Get to Know Your Doctor’s Capabilities
It is important when selecting a specialist to treat your Endo that you are aware of his/her capabilities in treating the disease. Some questions you may want to bring along with you to the appointment include:
How much of your practice is dedicated to obstetrics? How much to gynecology? This can be helpful in determining whether or not your doctor will be sent off to the delivery ward during your appointment time…this happened to me on too many occasions to count; usually after I had been in the waiting room for upwards of an hour already.
How familiar are you with the disease? Do you have many Endo patients? Do you keep up on the latest information surrounding the disease?
What do you believe the proper course of treatment to be?…one note here; if the doc says “pregnancy!” or “hysterectomy!” without even examining your records and dismisses all other methods of treatment, you may want to thank them and see yourself to the door immediately.
What method of surgery do you utilize to remove the Endometriosis lesions?…if you believe excision to be more successful than simple cauterization or ablation, then you would likely wish to select another doctor who does perform that type of surgery.
Do you have colleagues consult in the OR with you in the event that the disease presents itself in an area outside of your expertise?…ie. bowels, bladder, etc. – often, surgeons leave Endo in these areas to professionals who are better suited to treat it, such as gastroenterologists and urologists/urogynecologists, for instance.
Do I have access to all of my medical records at any time I wish?
Other things to consider…do you feel comfortable talking with the doctor? Do you think that you will be able to be an active partner in your healthcare with that particular healthcare provider, or do you feel as though “they are in charge?” There is a long-standing joke in many patient circles: “what’s the difference between God and a doctor? God doesn’t think he’s a doctor.” If your physician gives the impression that you will have no say in your treatment, then they are probably not the doctor for you.
If you’re not already diagnosed…
…tell your doctor what you are feeling and why you suspect you might have Endo. Do you have any of the following symptoms?
Reproductive/bowel/urinary tract Endometriosis
chronic or intermittent pelvic pain
dysmenorrhea (painful menstruation is not normal!)
infertility, miscarriage(s), ectopic (tubal) pregnancy
IBS-type symptoms (abdominal cramping, bloating, diarrhea, constipation, painful bowel movements, sharp gas pains)
dyspareunia (pain during intercourse)
pain after intercourse
blood in stool
blood in urine
tenderness around the kidneys
painful or burning urination
flank pain radiating toward the groin
urinary frequency, retention, or urgency
coughing up of blood or bloody sputum, particularly coinciding with menses
accumulation of air or gas in the chest cavity
constricting chest pain and/or shoulder pain
shoulder pain associated with menses
shortness of breath
collection of blood and/or pulmonary nodule in chest cavity (revealed under testing)
deep chest pain
pain in the leg and/or hip which radiates down the leg (this symptom is concurrent with both sciatic and inguinal Endo)
External (skin) Endometriosis
painful nodules, often visible to the naked eye, at the skin’s surface. Can bleed during menses and/or appear blue upon inspection (skin endo)
General, non-specific symptoms
allergies and other immune system-related problems
Surgery is still currently the only way to confirm a diagnosis of Endometriosis. If your doctor wants to place you on Lupron or another GnRH prior to obtaining a surgical diagnosis, you may want to rethink becoming his/her patient. Most Endo experts believe it is not only a poor method of diagnosing the patient, it is also unethical to treat an undiagnosed patient with such drastic means.
How to talk to Your Doctor
Remember that you are both human beings; don’t place any unreasonable expectations on yourself or the doctor. By working together to treat your case the best way possible, you can reach a successful level of management of your Endo.
If possible, it is helpful if you go to your appointment with a prepared set of questions to ask, a journal or diary of your symptoms over a period of time, and perhaps a pain journal as well.
Following are some examples of questions to consider when meeting with your doctor for the first time, questions to ask regarding surgery or other procedures, and a sample pain journal which you may want to adapt for your own usage.
When Meeting for the first time
Do you have medical records from previous physicians throughout your treatment? Bring them.
Explain why you are there. What are your symptoms, concerns, fears? How long have you been experiencing these problems? Be specific.
Don’t be afraid to ask questions.
Indicate that your wishes to be a partner in your treatment plan. When discussing options, always ask what else is open to you and choose the option you feel most comfortable with.
What is the reason for my surgery?
What exactly will be done during the surgery? For instance, if the surgery is a hysterectomy, will it be total or partial? Stress your wishes prior to surgery and put in writing what your understanding is…if you are going for a diagnostic laparoscopy and do not wish to wake up with a hysterectomy done without your permission, let them know that!
What pre-op procedures will be done? Do I need to store some of my blood? What type(s) of incision(s) will be made?
What type of anesthesia is being used?
Am I at high risk for any complications? If so, why, and what are they?
How do you expect to deal with any unforeseen complications, should they arise?
How much pain can I expect to be in post-operatively?
How can I lessen the pain? What are my post-op restrictions?
Will I have bowel or bladder problems afterwards?
Who will be in the operating theater to assist? What specific capabilities will they bring to the surgery?
When can I expect to return to work?
When can I expect to engage in intercourse?
When can I expect to return to my exercise regimen?
Are there post-op food or liquid restrictions?
Will you be provided with a prescription for painkillers prior to surgery, so you don’t have to fill it on your way home from the hospital?
How can I help to prepare my body and myself for the surgery?
Remember, you will get basic answers to all of these questions and the others you think of…no two patients are alike and so the answers cannot be assumed to be the standard for everyone.
Medical Therapy Questions
What is the reason for placing me on this drug?
What exactly will this drug therapy accomplish? For instance; is it for pain relief, or will it actually work to shrink the lesions?
What side affects am I at risk for? i.e. fatigue, weight gain/loss, loss of libido, mood swings, physical changes, etc.
Are there any food, liquid or other drug interactions? Any other contraindications?
How long is the course of therapy? Can I stop anytime?
Will this therapy be followed up by therapeutic surgery or other method of disease maintenance?
Remember, you will get basic answers to all of these questions and the others you think of…no two patients are alike and so the answers cannot be assumed to be the standard for everyone. Please remember that Endometriosis is currently incurable, and no drug therapy is a guarantee to be symptom-free for any specific amount of time.
Keeping a Pain Journal
This might be helpful in documenting your pain and being able to relay your situation to your doctor.
Some words to describe pain:
Think about how much pain affects your daily activities.
How much pain do you have on an average day?
How often do you have the pain?
Is there any time of day that the pain is worse?
Do any activities set your pain off?
Does the pain come and go?
What helps alleviate the pain?
How upsetting and disrupting is the pain to you?
What do you believe causes the pain? ie. cysts, Endometriosis implants, adhesions, scar tissue, etc.
Does pain interfere with your personal routine? ie. brushing your hair, eating, getting dressed
In your pain journal, try keeping track of when you experienced the pain and the level of pain experienced. For instance:
Use the following ratings to gauge your pain: 1-mild, 2-moderate, 3-distressing, 4-horrible, 5-unbearable
TIME OF DAY PAIN OCCURRED: 4 p.m.
PAIN RATING: 3
WHERE WAS THE PAIN: lower right quadrant
WHAT WERE YOU DOING? reaching for something
DID YOU TAKE PAIN MEDS? HOW MUCH: none
WHAT WAS THE PAIN RATING AN HOUR LATER? 2
COMMENTS? seems to be happening more and more frequently; could be adhesions?
I have found that most doctors are in the business of helping people because they truly want to. There are, as with any profession, a few bad apples out there…but don’t let them spoil the bunch. If you are not happy with your doctor, find another.
Some noteworthy specialists with excellent reputations in the Endometriosis community include:
Drs. Deborah Metzger
Helena Women’s Health Specialty Center
780 Welch Road
Palo Alto, CA 94304
Andrew S. Cook, MD, FACOG, is the Founder and Medical Director of:
Drs. Robert Albee & Tom Lyons
The Center for Endometriosis Care
1140 Hammond Road
Bldg F Suite 6230
Atlanta, GA 30328
Dr. Herbert Goldfarb
Montclair Reproductive Center
29 The Crescent
Montclair, New Jersey 07042
Dr. Jose M. Colon
The Center for Reproductive Medicine
Department of Obstetrics, Gynecology and Women’s Health
214 Terrace Avenue
Hasbrouck Heights, NJ 07604
Dr. David Redwine
St. Charles Medical Center Endometriosis Treatment Program
2500 NE Neff Road
Bend, Oregon 97701
Dr. Nabil Husami
Center for Endometriosis Research & Treatment
Columbia University Medical Center
622 W. 168th Street – PH 16
NYC, NY 10032
Drs. Charles Koh and Grace Janik
Reproductive Specialty Center
2315 North Lake Drive, Suite 501
Milwaukee, Wisconsin 53211
Dr. Daniel C. Martin
University of Tennessee at Memphis
1717 Kirby St. Suite 100
Memphis, TN 38120
Dr. Mark Perloe
Atlanta Reproductive Health Centre
285 Boulevard NE, Suite 320
Atlanta, GA 30312
Dr. Paul Dmowski
The Institute for the Study and Treatment of Endometriosis
2425 West 22nd Street
Oak Brook, IL 60523
Drs. Harry Reich and CY Liu
Advanced Laparoscopic Surgeons of New York, LLC
872 5th Avenue
New York NY 10021 USA
Dr. C. Paul Perry
C Paul Perry Chronic Pelvic Pain Clinic
Brookwood Medical Center
Dr. Mark Wayne Surrey
Reproductive Medicine and Surgery Associates
9675 Brighton Way, #402
Beverly Hills, CA
Hopefully, some of the above guidelines and examples will assist you in finding a great doctor who will partner with you to successfully treat your Endo!
Copyright (c) by Heather C. Guidone. All Rights Reserved. Do not Reproduce Without Express Permission From Author.
Updated information in regards to Dr Andrew Cook and Dr. Deborah Metzger – many thanks to Valeria at the Vital Health Center for pointing out our mistake and giving us correct information.
Endometriosis is a relatively common condition that can cause significant pain and suffering. At the other end of the scale, it can exist without any sign of its presence. Overall, between 3-10% of women aged between 15-45 years have endometriosis. In women who have difficulties conceiving, this rises to about 25-35%.
It used to be believed that the disease is more common in goal-orientated, professional women over the age of 30, but this misconception is now well disproven. It does not usually occur before puberty (though it has been reported), and it can be present for the first time in women who have already had children.
Further information will be found in the sections below:
What is it? What exactly is endometriosis and what problems can it cause?
How do I find out if I’ve got endometriosis?
An overview of treatment options available.
A detailed description of the various drugs used to treat endometriosis.
Surgical Treatment Laparoscopy and open surgery options, treatment results and recurrence risks…
What is it? What exactly is endometriosis?
Endometriosis is small deposits of the womb lining that are located outside of the womb cavity. The most common place to find it is on the ovary, the back of the uterus and the ligamentous supports that hold the uterus in its normal position (uterosacral ligaments). It can also be found on the thin lining of the pelvic organs (the peritoneum), on the tubes, between the vagina and rectum (rectovaginal septum), in or on the bladder, in abdominal scars from previous surgery and even as far away from the pelvis as the lung!
Each time that you have a normal period, so this endometriosis does also, and this leads to cyclical swelling, stretching of tissues, inflammation and scarring. Eventually all the scarring and inflammation can lead to symptoms even when you’re not having a period.
It is more common in women whose relatives have endometriosis, in women who have cycles shorter than 28 days and those who typically have a period lasting longer than a week. Many cases occur in women without these associations, of course, and not all women who fit into the above categories necessarily get endometriosis.
What causes endometriosis?
There are several theories behind this, one possible cause is called retrograde menstruation. Normally during a period the menstrual blood comes out of the cervix and into the vagina. In around 75% of women, a small amount of blood flows backwards down the fallopian tubes and into the pelvic cavity. This blood contains tiny seedlings of the lining of the womb – endometrium. It is not known why in some women this might implant and lead to endometriosis, but not in others – it may have something to do with a particular woman’s immune response and ability to fight off & remove these seedlings.
The metaplasia theory suggests that because the uterus, tubes, peritoneum and part of the ovary are all developed from the same area in the fetus, endometriosis might be caused by some cells taking the wrong turn during development.
The vascular theory rests on the fact that endometrial tissue from the lining of the womb can be found in the blood stream. It might be that these small deposits end up in other areas far from the womb and grow from there. This would explain the rare finding of endometriosis in sites such as the lung.
Most likely there is no one simple answer to explain it, and the true cause is a composite of all these.
What problems can it cause?
The most common problems are:
Pain during intercourse
The pelvic pain caused by endometriosis can be very variable. It may be like a dull ache located generally over the lower abdomen, or may be more severe. It can be more localised into the rectum (back passage) or cause urinary symptoms. Sometimes the degree of pain felt by a woman is not related to the extent of disease found when the endometriosis is diagnosed. Some women have very extensive endometriosis, but their pain & discomfort is minimal. Others have only a few spots noted and the pain is very disabling. In general, however, the more endometriosis that is present, the more likely you are to have symptoms.
Painful periods are often the first sign a woman might have that endometriosis is present. The pain usually begins a few days before the period is due and continues throughout the period. It is typically located in the centre of the pelvis, but can be one-sided. It may go into the back or down the legs.
Pain on intercourse is often worse with a particular position and especially with deep penetration. Many women experience an aching in the pelvis after intercourse.
The link between endometriosis and infertility is sometimes difficult to explain. When the disease is so bad that there is much scarring around the tubes, or there are ovarian cysts, it is not surprising that this might interfere with normal fertility. It is less clear how a few small spots of endometriosis might have a detrimental effect on attempts at pregnancy. Nevertheless, studies have found that endometriosis is more common in women who have difficulty conceiving, supporting the link. Also, another major study looking at treatment of mild to moderate endometriosis did find an improved fertility rate in women who received treatment.
Although the above problems are most common, some women experience other symptoms related to where endometriosis might have implanted:
painful bowel movements
painful pelvic exams
painful and frequent urination, or bleeding when passing water during the time of the period
Diagnosis of endometriosis Examination findings
A pelvic examination can sometimes suggest the presence of endometriosis. Typical findings depend on the severity of the disease and where it is located. A normal uterus is quite mobile, but the scarring of endometriosis can make it tender and fixed in the pelvis. There may be a swelling felt on one of the ovaries because of an endometriosis cyst. The uterosacral ligaments are one of the supports of the uterus where endometriosis can occur and these can be felt just above the cervix. Tender nodules in this area can suggest its presence. Diagnostic laparoscopy
To confirm endometriosis requires a diagnostic laparoscopy. This is where a small telescope is passed through the umbilicus to gain access to the pelvis. A picture of the pelvis is viewed on a TV screen and the presence of endometriosis and its stage assessed. There is an information sheet on the website containing more information on diagnostic laparoscopy. Ultrasound is useful to help diagnose endometriosis cysts of the ovary.
At laparoscopy the appearance of endometriosis is quite variable. It can take one of the following appearances:
blue or black powder-burn lesions
red, blue, white or non-pigmented lesions
scarring and peritoneal defects
In more advanced cases of endometriosis there might be web-like scar tissue, adhesions, sticking the ovary to the side of the pelvis or the tube to the uterus, distorting the normal position of the pelvic organs. Even if the endometriosis is silent, adhesions can cause pain, particularly if they affect the bowel or the ovary. Stretching of the ovary and surrounding adhesions when an egg is developing toward midcycle will cause pain & make it sensitive during intercourse. Similarly the normal movement of the bowel as food passes through can lead to pressure symptoms if it is stuck down in adhesions.
Endometriosis can affect the ovary with the development of benign ovarian cysts called endometriomas. These can be as small as a grape or as large as grapefruit. Bleeding into the cysts leads to collection of old, dark-brown coloured blood and this is why they are sometimes called ‘chocolate cysts’. A woman may suddenly feel pain if there is bleeding into an endometrioma with stretching of the capsule. Similarly if an endometrioma bursts, the blood spilled will cause irritation and can lead to the development of adhesions. Laparoscopic photographs of endometriosis
The small black spots are endometriosis on the peritoneum
An experienced surgeon should be able to identify this disease in all its various forms and undertake treatment at the time of diagnosis, where appropriate. This is the most effective form of treatment for mild to moderate endometriosis and should be considered the first-line approach. More advanced endometriosis will normally need a separately planned operation where more time is available to sort things out fully.
Laparoscopic view of an endometrioma of the left ovary.
Note the ‘chocolate’ blood coming from where it has burst.
Staging of endometriosis
Endometriosis is staged depending upon the amount present, the areas it involves and the presence of secondary scarring. Staging is graded by the revised American Fertility Society score. Mild disease (rAFS stage I and II) is generally limited to small to medium-sized lesions with variable degrees of penetration. More severe disease (rAFS stage III and IV) suggests the presence of adhesions around the ovaries, tubal disruption and ovarian endometriomas.
There are several options for treating endometriosis, and each has its place for different women’s disease. The options are as follows:
No treatment at all
Management of symptoms
If endometriosis is found, for example, at the time of laparoscopic sterilisation and it is only mild, causing no symptoms at all, then it is quite reasonable to leave well alone and avoid any treatment at all. Some surgeons might burn it away at the time of diagnosis even if it isn’t causing symptoms at that time.
Management of the symptoms means using painkillers to make the painful periods more tolerable or for cyclical pain if it is not too bad. Some of the pain is caused by hormones called ‘prostaglandins’ which make the uterus contract. Ibuprofen and mefanamic acid (Ponstan) are anti-inflammatory drugs that reduce levels of prostaglandins and often help with the pain. If there is not prompt response to analgesics, it is sensible to move onto some hormonal treatment, that will actually shrink the endometriosis itself, or to consider one of the surgical approaches.
If endometriosis is associated with infertility, another way of ‘managing the symptoms’ is to use assisted conception (in-vitro fertilisation or IVF, sometimes called ‘test-tube baby’). This won’t deal with the endometriosis, but the approach might be suitable for a woman with minimal other symptoms, who is older & doesn’t have as much time to undergo prolonged treatments or sit around on a waiting list for surgery. Also, if other treatments have failed and infertility persists, assisted conception is usually the only remaining option.
Medical and surgical treatments
These will be discussed more fully in the next section.
Treatment of endometriosis with drugs can result in great improvement of symptoms such as painful periods, pain on intercourse and pelvic pain. Three important facts must be understood before choosing a medical treatment:
Medical treatment does not improve the chances for pregnancy and, as it is a hormonally contraceptive treatment, just delays it further.
Medical treatment suppresses endometriosis, rather than removing it and is effective only for short term management of symptoms, the active endometriosis returning gradually over 12-24 months after stopping.
The various medical treatment options are of equal effectiveness in treating endometriosis, but the cost and side effects vary.
The aim of medical treatment is to break the cycle of stimulation and bleeding. By stopping the ovary’s usual hormonal cycle and reducing oestrogen levels, the endometriosis deposits shrink down and become inactive. The endometriosis is still there, and will gradually become reactivated when the normal menstrual cycle starts again. Ovarian endometriomas of greater than 3cm diameter are unlikely to respond to medical treatment, and similarly if there is a significant amount of adhesions – these will respond best to laparoscopic breakdown (called adhesiolysis).
It was initially thought that use of the more ‘powerful’ treatments, such as GnRH agonists, was more likely to cure the endometriosis or result in a greater improvement in symptoms. Studies have compared the various options and it is now clear that they are all pretty much the same in terms of improvement of symptoms.
Each drug will be discussed in turn, but continuous use of the combined contraceptive pill or progestogens are usually the best options with the lowest chance of side effects. Medical treatments are typically used for 6-12 months, except for the contraceptive pill, which can be used as long as needed.
The Pill is one of the most commonly used treatments for endometriosis, and is a good choice for young women with mild disease who also require effective contraception. Despite its long-established use, there has been only one study on the use of the Pill for endometriosis. It compared the Pill with GnRH agonists and found an equal improvement with both drugs with regards to pelvic pain, painful periods and painful sex. There was a trend towards the Pill being better at controlling painful periods and GnRH agonists being best for improving painful intercourse.
In the above study the Pill was used cyclically, but many gynaecologists suggest that it is better taken continuously, with no withdrawal bleed in between each packet. This doesn’t do your body any harm and there is no ‘build-up’ of blood as might be expected, since one of the hormones it contains keeps the lining of the womb quite thin.
If used continuously, it should be for 6-12 months, but breakthrough spotting is not uncommon after a few months and you can either have a seven day break at the end of the next packet or your doctor might prescribe some additional oestrogen for a week, which helps to refresh the lining of the womb.
Progestogens are the most commonly used medical treatment and are effective in about 80% of cases. Examples include the drugs medroxyprogesterone acetate (Provera), dydrogesterone and norethisterone. They work by thinning out and shrinking down the endometriosis and also by suppressing the normal cycle of the ovary. They can be used either continuously or in a cyclical way (eg. taken for 3 weeks, with one week off). Depot Provera, the injection form of the drug commonly used 3-monthly for contraception also works, but its use is limited in women wishing pregnancy as it can delay ovulation some time after the last injection (up to 12 months).
Side effects of progestogens can include: irregular bleeding or breakthrough spotting – which affects around one third of users, weight gain, breast tenderness, water retention and rarely depression. This list of side effects is just what is possible, many people don’t have any ill-effects at all and it would be unlikely that all would be experienced at once! Once again, breakthrough bleeding can be managed with a short course of oestrogen tablets.
It has long been known that progestogens can alter the blood lipids (fats) in an unfavourable way, which might theoretically lead to an increased risk of blood clots (thrombosis). Two recent studies have provided more evidence that this could be the case. Although they looked at progestogens used for period problems, the doses used are similar as would be for endometriosis, and the risk of thrombosis was around 5-fold higher than expected. Whilst this is an acceptable risk for women not already at risk for thrombosis, if you have other risk factors (eg. a previous clot or a strong family history) then an alternative treatment might be preferable.
GnRH stands for Gonadotrophin Releasing Hormone and an agonist is a drug that acts the same way as the body’s own hormone. The body normally makes GnRH in a small gland in the brain (the pituitary) and it is this hormone that stimulates the ovary to develop eggs and produce oestrogen, leading to the normal menstrual cycle. If you give GnRH agonists, this floods the system and confuses the delicately controlled balance, leading to a complete block of egg development, oestrogen production and menstrual cycle. It effectively makes you ‘menopausal’ for the short time that you use the treatment and without the oestrogen stimulation, endometriosis shrinks down and becomes inactive.
Examples of GnRH agonists include: goserelin (Zoladex), nafarelin (Synarel), Buserelin (Suprecur) and leuprorelin (Prostap). They are all either given by injection or nasal spray – tablet forms are unfortunately not available.
GnRH agonists are effective in relieving symptoms in 80-90% of patients and the best affect is in small areas of endometriosis. Although ovarian endometriomas will shrink down by around 20%, surgery remains the optimum treatment for the more severe disease. Studies looking at the effectiveness of GnRH agonists have found that the benefit is comparable with the other forms of medical treatment.
GnRH agonists work by lowering oestrogen levels and the main side effects of the treatment are due to this: hot flushes, reduced sex drive, vaginal dryness, emotional symptoms, depression and headaches. It really is like going through the menopause for a short time. The other main problem limiting longer courses than 6 months is that bone thinning is a side effect, with around 5-6% reduction in bone density in the spine. This is completely reversed by 9 months after stopping treatment.
There is now good evidence that the use of add-back hormone replacement therapy (HRT) is effective in preventing the bone thinning and the unpleasant side effects of GnRH treatment. The HRT used can be a normal cyclical oestrogen/progestogen one, a continuous ‘no bleed’ preparation or a newer type such as tibolone (Livial). It can be started at the same time as the GnRH agonist and does not diminish the effect of the treatment. It might seem surprising that using oestrogen replacement doesn’t undo the effect of the GnRH, but there appears to be a threshold level of oestrogen where endometriosis will be stimulated, and HRT doesn’t reach that level, but is enough to prevent the side effects.
Danazol is a drug that was once used as first-line medical treatment for endometriosis and it is effective in 80-90% of cases. Fortunately, there is now good evidence demonstrating other drugs as equally effective, as Danazol can have some quite unpleasant side effects. It works by preventing ovulation and reducing oestrogen levels as well as having a directly suppressive effect on the endometriosis itself.
It has some properties that are similar to the male hormone testosterone and possible side effects include: weight gain, water retention, tiredness, decreased breast size, hot flushes, acne, oily skin, growth of facial hair and emotional symptoms. Although some side effects are experienced by about 80% of users, they are only troublesome enough to make women stop treatment in 10% of cases. It can irreversibly deepen the voice. It is also important to use an effective contraceptive, as accidental use in early pregnancy can masculinise a female fetus.
Gestrinone is a treatment used more commonly in Europe. It works in much the same way as danazol with similar, but milder, side effects. It is taken twice weekly and around 85% of women do not have any periods at all when on treatment.
Reference list (hyperlinked on website)
Moore J, Kennedy S, Prentice A. Modern combined oral contraceptives for the treatment of painful symptoms associated with endometriosis (Cochrane Review). In The Cochrane Library 1999, Issue 3. Oxford:Update Software.
Vercellini P, Trespidi L, Colombo A, Vendola N, Marchini M, Crosignani PG. A gonadotropin-releasing hormone agonist versus a low-dose oral contraceptive for pelvic pain associated with endometriosis. Fertil.Steril. 1993; 60:75-79.
Vercellini P, Cortesi I, Crosignani PG. Progestins for symptomatic endometriosis: a critical analysis of the evidence. Fertil.Steril. 1997; 68:393-401.
Prentice A, Deary AJ, Goldbeck-Wood S, Farquhar C, Smith SK. Gonadotrophin-releasing hormone analogues for pain associated with endometriosis (Cochrane Review). In The Cochrane Library 1999 Issue 3. Oxford:Update Software.
Vercellini P, De Giorgi O, Pesole A et al. (1998) ‘Endometriosis drugs and adjuvant therapy’ in: A Templeton, ID Cooke, PMS O’Brian (Eds) Evidence based fertility treatment, p225-245. London: RCOG press
Poulter NR, Chang CL, Farley TMM et al. Risk of cardiovascular diseases associated with oral progestagen preparations with therapeutic indications. Lancet 1999; 354: 6 November. (link requires Lancet website registration, which is free)
Vasilakis C, Jick H & del Mar Melero-Montes M. Risk of idiopathic venous thromboembolism in users of progestagens alone. Lancet 1999; 354: 6 November. (link requires Lancet website registration, which is free)
British Medical Association & Royal Pharmaceutical Society of Great Britain. (1999) British National Formulary. Oxon: The Pharmaceutical Press
Surgical treatment for endometriosis is usually carried out in one of the following situations:
At the time of diagnosis for mild to moderate endometriosis
If medical treatment hasn’t worked
If subfertility is a problem
If there is moderate to severe endometriosis, particularly with endometriomas
When endometriosis recurs
Surgery can either be conservative or radical. The aim of conservative surgery is to return the appearance of the pelvis to as normal as possible. This means destroying any endometriotic deposits, removing ovarian cysts, dividing adhesions and removing as little healthy tissue as possible.
Radical surgery means doing a hysterectomy with removal of both ovaries and is reserved for women with very severe symptoms, who have not responded to medical treatment or conservative operations. Sometimes, if there are other reasons to carry out a hysterectomy it is done earlier than this. Treatment at the time of diagnosis
This approach is rapidly becoming standard practice in the management of endometriosis. It is typically carried out where the endometriosis discovered is mild to moderate and the extra time required to do the surgery will be able to be accommodated within the operating list planned. A further key-hole into the abdomen is often needed. Laparoscopic management of endometriosis
Mild to moderate disease
The endometriosis spots are destroyed by diathermy, where an electric current is passed down a fine probe burning the lesion. Some surgeons use laser to evaporate the endometriosis.
Fine adhesions can be cut using small scissors. Bleeding is usually minimal and having avoided an open operation means that the risk of subsequent adhesion development is reduced. Laparoscopic managment also has the advantage of needing a minimal hospital stay, it is usually possible to go home the same or following day.
Improvement in pain symptoms following this type of surgery can be expected in 70% of cases, moreso if the location of adhesions divided corresponds to the area of maximum pain.
There has been only one good quality study of the effect of surgical treatment of mild to moderate endometriosis on subfertility. It found that laparoscopic destruction of lesions resulted in a 13% increase in pregnancy rate – equivalent to, on average, a benefit for one out of every eight women receiving treatment.
Moderate to severe disease
Where endometriosis is more than a few spots, and in particular where there is more severe scarring or an ovarian endometrioma, there is still the option of laparoscopic treatment in some hospitals. In the UK, it is usually only an option in the larger, central hosptials or where a local Gynaecologist has a special interest in laparoscopy. The aim of laparoscopy, as usual, is to restore things back to normal. For endometriomas this will mean shelling out and removing the cyst from the underlying normal ovary tissue. An alternative is to make a hole in the cyst wall, empty out the ‘chocolate’ collection of blood and diathermise the cyst base so all endometriotic deposits are destroyed.
Removal of endometriomas and division of scar tissue can be expected to improve the pain symptoms of endometriosis. The success of surgery in improving subfertility is related to the severity of endometriosis in the first place. It is difficult to give exact estimations, but women with moderate disease can expect pregnancy success rates of around 60%, whereas the comparable figure with more severe disease is around 35%. If a pregnancy does not occur within 2 years of surgery for endometriosis, the chances of success are poor, and referral for in-vitro fertilisation should be made. Open surgery
This is the usual method of approaching the more severe degrees of endometriosis, particularly where endometriomas are large and there is more extensive scarring involving the bowel and bladder.
Hysterectomy is an end-stage treatment for women who have completed their family and where endometriosis is severe. It is usual to suggest removal of the ovaries, particularly in a woman who is over the age of 40 or where the disease is particularly severe. Hormone replacement therapy will protect the bones and avoid the menopausal symptoms.
Using drugs with surgery
Overall the evidence to support drug treatment before surgery is not good. 3-6 months of drugs prior to surgery may make endometriomas smaller and therefore more accessible by laparoscopy, helping avoid the need for an open operation. There is nothing to suggest that it improves fertility rates or pain after the operation, however.
The use of drugs after conservative surgery in women wanting pregnancy does not improve pregnancy rates, but just adds delay. For women who have pain there is some evidence that pain is improved with a course of drug treatment following surgery, but it may just be limited to the period whilst the drugs are taken (as would be expected given the results of studies on long-term effect of medical treatment alone). This may be useful if it helps reduce pain whilst recovering from surgery – indeed it will take 2-3 months in any case for the true benefit from surgery to become apparent, as things gradually heal.
Recurrence of endometriosis after surgery
Recurrence rate for endometriosis has been estimated to be 10% per year by one author, another study found it to recur in 40% of women within 5 years after conservative surgery.
There is a 6 times higher risk of recurrence after hysterectomy if the ovaries are not removed. Even in women who have the ovaries removed, there is a small (0.01%) risk of further recurrence, usually involving the bowel. Risks of laparoscopy
Keyhole surgery is generally very safe, especially in experienced hands, but it is important to be understand that any laparoscopy carries with it some degree of risk, as do all operations. When placing the laparoscope into the abdomen, there is a small risk of accidental injury to bowel, the bladder or blood vessels leading to haemorrhage – this risk is inherent in the procedure. It is greater if the surgery is more advanced involving dividing of adhesions, diathermy of endometriosis, removal of cysts, etc.
Large studies have found that complications might affect around 1/370 diagnostic laparoscopies and 1/50-100 where more prolonged and difficult operation is necessary. Not all of these complications will have serious implications, but it might mean an unexpected open operation and a longer hospital stay. Complications are more common where there has been multiple previous open surgeries. Reference list (hyperlinked on website)
Jensen FW, Kapiteyn K, Trimbos-Kemper T et al. Complications of laparoscopy: a prospective multicentre observational study. Br J Obstet Gynaecol 1997; 104: 595-600
Harkki-Siren P, Kurki T. A nationwide analysis of laparoscopic complications. Obstet Gynecol 1997; 89: 108-12
Sutton C (1990) Advances in the surgical management of endometriosis. In: Shaw RW (ed) Endometriosis. Parthenon, Camforth, pp209-226
Marcoux S, Maheux R, Berube S and the Canadian Collaborative Group on Endometriosis. Laparoscopic surgery in infertile women with minimal and mild endometriosis. New Engl J Med 1997; 97: 212-22
Olive DL & Lee KL. Analysis of sequential treatment protocols for endometriosis-associated infertility. Am J Obstet Gynecol. 1986; 154: 613
Wheeler JM & Malinak LR. Recurrent endometriosis: incidence, management and prognosis. Am J Obstet Gynecol. 1983; 146: 247
Human leukocyte antigen (HLA) systems may be involved in the etiology of endometriosis, indicates research conducted in Japan.
HLA genes have already been implicated in insulin-dependent diabetes mellitus, systemic lupus erythematosus, and pre-eclampsia, and women
with endometriosis have higher rates of autoimmune and other chronic diseases than do women in the general population.
To investigate the possibility of an autoimmune contribution to endometriosis, Keisuke Ishii (Niigata University School of Medicine, Japan) and co-workers genotyped 83 women with a laparoscopic diagnosis of the condition, looking specifically for the HLA-DQB1 and HLA-DBP1 alleles.
Ishii et al report that the prevalence of HLA-DQB1*0301 was 16.3 percent among patients versus 8.3 percent among 222 healthy male and female controls. This difference reached borderline statistical significance (odds ratio, 2.13).
In contrast, the prevalence of the HLA-DBP1 alleles was similar between patients and controls.
In 2002, Ishii’s group reported that HLA-DQB1*1403 was significantly more prevalent among patients with endometriosis than in controls, and this
is the first study to demonstrate a significant association between the two.
“Further investigations by increasing sample size and by replication in both Japanese and other populations are needed to fully understand the
association between HLA genes and this disease,” the team concludes.
Women who have endometriosis appear to have a higher risk of developing several different kinds of cancer, say researchers.. The BBC have posted the following story… URL BBC Story
Endometriosis is a condition in which the type of tissue that lines the inside of the womb is found elsewhere in the pelvis.
Since the natural menstrual cycle of a woman involves the swift growth, then shedding of the womb lining during her period, this is not beneficial.
Typical symptoms include pelvic pain, heavy menstrual bleeding, bloating and fatigue.
It has also been linked with difficulty conceiving.
Researchers from Huddinge University Hospital in Stockholm, Sweden, looked at whether there was a link between having endometriosis and cancer risk.
They found a woman’s risk of developing ovarian cancer increased by just under half, for endocrine tumours by a third, for non-Hodgkin’s lymphoma approximately a quarter and for brain tumours just over a fifth.
However, the risk of cervical cancer fell by roughly a third.
The author of the study, presented at the annual meeting of the European Society for Human Reproduction and Embryology in Madrid, said that as these were relatively uncommon cancers, even apparently large increases in lifetime risk were not necessarily anything to be concerned about.
Dr Anna-Sofia Berglund said: “It is very important to keep these findings in perspective.
“The overall risk of cancer does not increase after endometriosis, and where there are slightly increased risks, they are in some of the less common cancers.
“For instance, in Sweden just under 20 women in every 100,000 develop ovarian cancer each year.
“My study shows that for women with endometriosis, another eight women in 100,000 could develop it – and it may be even fewer than that.”
The study found that women who had a hysterectomy before or at the time that endometriosis was diagnosed did not show this increased risk of ovarian cancer – suggesting a preventive effect.
Dr Berglund said the study did not prove endometriosis caused cancer – but that it was possible that whatever led to endometriosis might increase the risk.