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A study undertaken over several years has indicated that the most extensive form of Endometriosis may be predicted by the severity of menstrual periods in teenage girls.
The extensive form of Endometriosis is know as “Deep Infiltrating Endometriosis” (DIE). There are three distinct forms of Endometriosis (not to be confused with different stages/levels): Superficial Endometriosis, Ovarian Endometriosis and Deep Infiltrating Endometriosis. DEep Infiltrating Endometriosis is the most extensive, women with this condition will usually have extensive deposits of Endometriosis leading to adhesions in multiple parts of the body, including the vagina, bladder and ligaments that attach the uterus to the pelvis.
It is not unusual for several years (or longer) to go before a woman is diagnosed with Endometriosis due to the difficulty in diagnosis (the only reliable way is still a laproscopy and direct examination of the endometrium cells) and the number of diseases that can be similar to Endometriosis or may present at a similar time due to complications. However the study, undertaken by Dr Charles Chapron and colleagues included nearly 230 women who had surgery at a medical center between 2004 and 2009, of these 43% had DIE and the rest had the less extensive forms (Ovarian and Superficial).
During the study symptoms and histories were taken, this has led to a general conclusion (however more studies are needed from multiple sources to confirm or to enable more firm conclusions) that women who suffered from more painful periods and were prescribed birth control pills to treat this pain were more likely to suffer from DIE. Such evidence could lead to faster diagnosis of this severe type of Endometriosis.
However the study also concluded that any advance in diagnosis would not prevent the eventual progression to this invasive form of Endometriosis.
Original article source content (for the purposes of brevity this has been interpreted and re-written)
SOURCE: http://link.reuters.com/xam46q Fertility and Sterility, online November 11, 2010.
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We found this online the other day , it’s well written advice and it deserves to be spread – as a result here it is, credit is linked below.
What can I do to prevent endometriosis? Although endometriosis is rarely life-threatening, it affects life on two very critical levels—well-being and fertility. Women are often surprised by the differences they can make in ending the misery of endometriosis.
Taking charge of the disease involves change. There is no getting away from it. it requires a real willingness to invest in yourself and alter some daily routines and ways of thinking about the disease, as follows.
• Build a support system. This begins with finding a doctor who understands endometriosis and how it has affected you in particular. There is no use in convincing skeptical practitioners that you are suffering from a real condition if they persist in believing that your symptoms are psychosomatic.
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Discuss your condition with family members and friends in a calm and tactual manner. Explain what you have learned about the disease and why you are feeling the way you do. Severe menstrual camping attributed to prostaglandin levels, painful intercourse, and mood swings due to hormone fluctuations are real factors ha die disease. Now that your loved ones know it’s not “in your head,” ask for their help in getting you through any especially difficult time. If you feel you need pyschological counseling either alone or in ramify therapy to help sort out your feelings shout the impact of the condition on you and on others, seek help now.
The “career woman’s disease” touches the lives of millions of women who must deal with their condition and continue to work efficiently. This can be a problem. Many employers are not interested in hearing that employees suffer from chronic disorders such as endometriosis. As with sufferers of PMS, women with endometriosis may be assumed to be overly self-indulgent during menstruation. It has been estimated that 140 million work hours are lost each year to the symptoms of endometriosis, a fact that the business world cannot ignore.
Yet, they do. Now it is up to you. Your wisest strategy is to be consistently reasonable at work and prudent about whom you inform of your condition. Although your impulse may be to educate your employers and coworkers, many of whom may have the disease or know others who might, not everyone may be sympathetic to you. They are two schools of thought about discussing this disease and its effect on women, and doing so on the job. Some avoid public disclosure, feeling it is best to be discreet. They are concerned that knowledge of their condition may he used against them, that is, used as a reason to bold them hack from greater responsibility and promotions.
Other women fed that having endometriosis is not a stigmatizing factor and that a calm, honest, and educational approach will not hinder their career advancement. These women are bolder about their approach to the disease. They may disseminate information about endometriosis, or post notices of discussion groups to alert women to what they can do for themselves and for others, too. Knowing they do not have to keep silent about their condition and finding even one other woman at work who shares their problem gives them a psychological boost and an important sense of supportiveness. The action you do or do not take at work will depend entirely on the kind of job you have and the general tone of your workplace. You will know best what to do in this case.
As research into Endometriosis is gathering pace, it’s maybe worth having a look at some of the suggested reasons for endometriosis. At the moment there is still no definitive answer, indeed there may be more than one cause – or a combination of causes.
One of the most promising theories is genetic.
There is extensive evidence that families where one person has endometriosis have a propensity for other female members to have this. The biggest problem with this theory is that the actual cause is not explained. Some families appear to have a high percentage of Endometriosis sufferer’s, whereas other families can have only one member over several generations.
This is complicated by the fact that only women with actual painful symptons tend to be available to base studies on, or ones who are having surgery which may lead to the discovery of endometriosis, without several comprehensive blind studies the genetic traits theory cannot be confirmed.
There is an increasing belief that exposure to pollutants and chemicals may be an underlying cause. This has been backed up by several studies which indicate that exposure to dioxins may increase the chance of the endometriosis occuring. How this occurs has not been explained consistently in these studies, however they have indicated that in areas where exposure to dioxins (pesticides and modern cleansing methods such as use of industrial scale bleaching products) endometriosis is higher. This is also quoted as a reason why Endometriosis was effectively unknown until modern times, despite extensive anatomy records that date back further.
Blamed for many things – a hormonal imbalance has been suggested to be one of the causes, allowing the cells to grow and propagate more extensively – and therefore cause more problems – in women with a hormone imbalance.
There are ongoing studies in this matter and pharmacautical companies are continuing developing therapies to correct balances which they hope will be of use in treating endometriosis – or even those at risk from it.
Immune System problems
Often people with Endometriosis have indications of other Immune System problems, such as IBS, Chronic Fatigue, or just general bad health. Some of this is attributed to dealing with the pain from Endometriosis which can run down the body.
However the theory is that in those where endometrosis is causing the most pain – as the amount of endometriosis is known not to directly influence the pain a woman can feel. It is thought that a fully functioning immune system may well eliminate the endometrial cells which occur (possibly due to retrograde menstuation) – therefore it may be that endometriosis occurs more frequently than believed, but the body eliminates the cells before they implant.
When the immune system is damaged – or for some reason does not recognise the endometrial cells , then the endometriosis causes symptons etc.. This is also cited as a possible reason for some people being able to fight cancer cells more effectively than others, as some people’s body may recognise the rogue cells more readily and combat the spread.
As time passes progress is being made on endometriosis and hopefully, in the near future some of these theories will be put to the test and may be eliminated or expanded upon – and ultimately universal agreement of a cause, which may allow full and complete treatment of this disease.
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.
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.
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.
Uncommon Manifestations: Sciatic and Thoracic Endometriosis
As we enter a turning point in healthcare, more physicians are beginning to recognize Endometriosis for the significant issue that it is. Better still, more teens and women with the disease are beginning to advocate for themselves – armed with education and knowledge about Endometriosis, they are becoming partners in their own healthcare and taking an active role in their disease management.
But we still have a long way to go. There are many who still maintain that Endometriosis “can be cured by pregnancy or hysterectomy,” and who believe that the disease only occurs in and on the reproductive organs. Though referred to as “uncommon,” two specific manifestations of the disease are becoming more prevelant. This recognition may be due in part to the practitioner’s increased understanding and awareness of the disease, and/or to the patient’s active role in her own care; speaking up and making herself heard about new or
different symptoms she may be experiencing.
Pelvic Endometriosis is a common gynecological problem. The most common sites are the ovaries, cul-de-sac, uterine tubes, the pelvic peritoneum, the recto-vaginal septum, the cervix and the bowel. Sciatic nerve Endometriosis is less common, but should be included in the diagnosis of pain in the sciatic nerve
The first case of sciatic Endometriosis was described by Denton and Sherill in 1955. Symptoms that may lead to the suspicion of Sciatic Endometriosis include: pain which begins just before menstruation and lasts several days after the end of the flow, motor defecit, low back discomfort radiating to the left leg, left foot drop and weakness, cramping in the left leg when walking for long distances, and tenderness of the sciatic notch. There is generally a previous history of pelvic Endometriosis. If left untreated, the symptoms can lose their cyclical nature with time, due to scarring; resulting in a progressively shorter pain-free interval until constant pain prevails. Early recognition is necessary to prevent permanent damage to the sciatic nerve. The disease may be seen on diagnostic imaging tests in select cases; other cases require visual diagnosis.
Sciatic Endometriosis is generally treated the same way as pelvic disease; surgical eradication and/or a course of medical therapy.
Extensive empirical data discussing this condition exists in peer-reviewed literature. In a 1999 Review of Neurology case report authors Calzada-Sierra, Fermin-Hernandez, Vasallo-Prieto, Gomez-Fernandez and Santana de la Fe discussed a patient with cyclical sciatica due to implantation of endometrial tissue in the sciatic nerve in the region of the sciatic notch. Authors noted, “if it is not treated, a sensomotor mononeuropathy of the sciatic nerve develops.” Their patient had complained of right-sided sciatic pain from the age of 36 years, and over the years a motor deficit had slowly and progressively appeared causing foot drop. The painful crises were related to her menstrual periods. At the age of 44 years, a pyramidal muscle syndrome was diagnosed and treated surgically. This was followed by increase in the crises of sciatic pain. A year later, she
started to have sciatic pain on the left side, which was similar to that of the right side. At the time of publication, the patient was still being treated with depot medroxyprogesterone (Depo Provera), and her pain has disappeared. Authors concluded that “cyclical sciatica due to endometriosis is little known and may lead to permanent disability. Computerized axial tomography of the pelvis using contrast material is very useful for diagnosis. The use of depot medroxyprogesterone seems to be a satisfactory treatment in some patients.”
In a 1999 Fertility & Sterility article, authors Fedele, Bianchi, Raffaelli, Zanconato and Zanette published a study in which they attempted to assess the efficacy and diagnostic value of GnRH agonist (GnRH-a) therapy in cases of hidden sciatic nerve endometriosis. In this case report, authors reviewed the treatment of three patients with cyclic, catamenial (“upon menstruation”) sciatica associated with pelvic endometriosis, who had electromyographic evidence of sciatic nerve damage but negative computed tomography (CT Scan) and
magnetic resonance imaging (MRI) findings. Their patients were given a monthly administration of Lupron plus 25 mcg. of addback. As a result, all three patients had clear decreases in pain and partial amelioration of claudication. Authors concluded that “Endometriosis of the sciatic nerve may be hard to diagnose with the use of current imaging techniques, but may be proved by clinical response to GnRH analogue treatment and may be more frequent than previously thought.”
Another report in a 1996 edition of the journal Spine presented by authors Dhote, Tudoret, Bachmeyer, Legmann and Christoforov outlined a review of a case of cyclic sciatica secondary to ovarian cyst endometriosis. Authors noted that “Endometriosis of the sciatic nerve is rare, but must be included in the differential diagnosis of sciatic mononeuropathies.” The authors reported a case of a patient whose cyclic sciatica was caused by an ovarian cystic endometriosis lesion. Magnetic resonance imaging permitted a specific diagnosis of this unusual cause of sciatica by showing a hemorrhagic mass in the region of the sciatic
nerve. Authors further concluded that “early recognition is necessary to prevent permanent damage to the sciatic nerve.”
In “Endometriosis of the Sciatic Nerve: Case Report Demonstrating the Value of MR Imaging,” authors Descamps et al. stated that “Endometriosis…should be considered in menstruating women in view of the diagnostic strategy and ensuing therapeutic implications.” Authors related a case of sciatic nerve involvement with Endometriosis in contact with the nerve in the left sciatic notch which was discovered by MRI. Authors concluded that “MRI was invaluable for the diagnosis, revealing a signal on the stem of the nerve suggestive of a lesion with haemorrhagic content.”
Hysterectomies may also be indicated as treatment for patients who have completed their families. One such case where a hysterectomy was effective treatment for the patient is presented in “Adenomyosis–an Unusual Cause of Sciatic Pain” by al-Khodairy AT; Gerber BE and Praz G. Authors report the case of “a female patient who presented with a 5-month history of sciatic pain who had been referred for investigation and surgical treatment of a suspected herniated lumbar intervertebral disc. Because of an ill-defined clinical picture at admission, she was treated conservatively. After 2 weeks without any improvement, imaging of the spine by MR (magnetic resonance) was performed. No signs of a herniated disc or intraspinal, space-occupying lesion were apparent, but a right paramedian pelvic mass was seen. Ultrasonography confirmed an enlarged, irregular uterus. Hysterectomy abolished the symptoms.”
An excellent review by Mazin Ellias, M.D., F.R.C.A., Director, Associate Professor, Pain Management Program, Medical College of Wisconsin, entitled “Endometriosis of the Sciatic Nerve” outlines the importance of early diagnosis and detection to prevent permanent sciatic nerve damage. Dr. Ellias states that “physical examination findings may reveal various neurological deficits involving the sciatic nerve rootlets. There may be localized tenderness over the sciatic notch, but this is not classical finding. Pelvic examination may be normal. Hormonal suppression of the endometrial tissue may also cause pain relief and aids in proper diagnosis. CT and MRI findings of endometriosis can be variable as they can appear as solid or complex cystic lesions, and involvement of the sciatic nerve at the sciatic notch has been a constant feature.” Dr. Ellias further
states that “electromyography has been useful in diagnosis as well as differentiating between peripheral and root nerve involvement. However, normal findings on electromyography have been reported. An unequivocal diagnosis can be made by direct visualization during operative surgery/laparoscopy and confirmed by histopathology. The ‘pocket sign’ visualization under laparoscopy or surgery of a peritoneal evagination containing ectopic endometrial tissue has been described by Head et al. In patients with cyclic sciatic pain, this finding may be the only clue to the presence of endometriosis, however this sign may be overlooked by the surgeon.”
Extensive literature exists on findings of thoracic (lung) Endometriosis in patients worldwide, the first of which date back as far as 1912. According to Dr. Andrew Cook, thoracic Endometriosis is divided into two parts: pleural, which is the lining of the lung, and parenchymal, which is the lung itself. The majority of cases occur in the pleura, rather than the lung itself.
Deep chest pain
Pneumothorax (collapsed lung)
Pleural effusion (“water on the lung”)
Bloody sputum occuring with menses
In a recent report, “Catamenial Pneumothorax with Diaphragmatic Endometriosis,” authors Yoshida, Izumi, Hasegawa and Kubota noted the experiences of a 30 year-old patient who had twice presented with pneumothorax that was related to the onset of menstruation. Upon thoracoscopy, the presence of blueberry spots and pinholes in the lateral part of the central tendon in the diaphragm were seen. Histological findings showed Endometriosis of the diaphragm. She was followed without hormonal therapy, but recurrent right
pneumothorax occurred. She was then placed on Lupron for 5 months and remained asymptomatic 7 months after surgery.
In “Catamenial Pneumothorax–Endometriosis as a Multidisciplinary Challenge” by S. Leodolter and W. Marhold, authors noted, “…since the condition is poorly understood, patients with ‘catamenial pneumothorax’ tend to be subjected to often quite stressful surgical procedures. These do not provide a permanent cure, as shown by the presented case. Traditional hormonal regimens are also associated with high relapse rates. Consequently, abdominal hysterectomy with bilateral removal of the adnexa has been the treatment of choice if fertility was no longer desired. The battery of conservative treatment modalities has, however, recently been expanded by the use of GnRH analogues and antigestagens. As embryogenesis and the factors underlying the development of endometriosis are better understood and as the complex symptoms of the condition as well as the state-of-the-art therapeutic approaches are more widely appreciated, women
afflicted with the condition should be able to benefit from a more rational and possibly even causal treatment concept.”
In his 1991 book, “Endometriosis: Contemporary Concepts in Clinical Management,” Dr. Bob Schenkin wrote that “Endometriosis of the lung accounted for all reported cases of Endometriosis which occured outside of the
abdomen. Approximately 100 confirmed cases, and many more suspected cases, have been reported over the years.”
As with Endometriosis in general, it is not definitively known why or how this manifestation of the disease occurs. It is thought, however, that circulating peritoneal fluid encourages endometriotic tissue to implant on the diaphragm. This in turn causes structural damage, such as minute holes, which then allow passage of the tissue into the lining of the lung.
Most patients with thoracic Endometriosis also have pelvic Endometriosis. Thoracic Endometriosis may be suspected based on diagnostic testing and patient symptoms, but surgery is still the gold standard for confirmation of diagnosis. Treatments include medical therapy and surgery.
 “Endometriosis of the Sciatic Nerve” by Mazin Ellias, M.D., F.R.C.A., Director, Associate Professor, Pain Management Program, Medical College of
Wisconsin. Froedtert Memorial Lutheran Hospital/Grand Rounds April/June, 1999: Volume 6, Number 2
 &  “Cyclic sciatica. A manifestation of compression of the sciatic nerve by endometriosis: a case report;” Spine 1996 Oct 1;21(19):2277-9 (ISSN:
0362-2436). Dhote R; Tudoret L; Bachmeyer C; Legmann P; Christoforov B; Service de Medecine Interne, Hopital Cochin, Paris, France.
 “Bilateral Cyclic Sciatica Caused by Endometriosis,” Rev Neuro (Jul 1-15;29(1):34-6, ISSN: 0210-0010), Calzada-Sierra DJ; Fermin-Hernandez E;
Vasallo-Prieto R; Gomez-Fernandez L and Santana de la Fe from the Centro Internacional de Restauracion Neurologica, Ciren, La Habana, Cuba
 “Phantom Endometriosis of the Sciatic Nerve,” Fertil Sterol 1999 Oct;72(4):727-9 (ISSN: 0015-0282) by Feudal L; Blanch S; Raffaelli R;
Zanconato G; Zanette G; Department of Obstetrics and Gynecology, University of Verona, Italy
 “Endometriosis of the Sciatic Nerve: Case Report Demonstrating the Value of MR Imaging,” Eur J Obstet Gynecol Reprod Biol 1995 Feb;58(2):199-202 (ISSN:
0301-2115). Descamps P; Cottier JP; Barre I; Rosset P; Laffont J; Lansac J; Body G, Department of Obstetrics and Gynecology, University Hospital, Tours,
 “Adenomyosis-an Unusual Cause of Sciatic Pain” Eur Spine J 1995;4(5):317-9 (ISSN: 0940-6719). al-Khodairy AT; Gerber BE; Praz G,
Department of Orthopaedic Surgery, Hopital de Pourtales, Neuchatel, Switzerland
 “Ask Dr. Cook,” www.drcook.com  Kyobu Geka 1999 Nov;52(12):1040-2
 Gynakologisch-geburtshilfliche Abetilung, Krankenhaus Lainz, Wien
 “Endometriosis: Contemporary Concepts in Clinical Management,” Robert Schenkin, MD
Endometriosis is a condition that effects about 20% of women. It is a disease that causes chronic pain, emotional torment, and can also lead to infertility. There is no known cause or cure for endometriosis. Treatments are available that can temporarily provide relief, however, none are long term. With such limited resources, all that is left is coping.
When a woman is diagnosed with endo, she may find herself frustrated and angry. She begins to wonder what she did to cause this. The pain continues and she finds herself going through cycles of surgeries and medications. Meanwhile, she is becoming a mental and physical wreck- full of anger, frustration and chronic pain. This cycle keeps repeating and eventually leads to anxiety and depression. The body can only handle so much stress before it wears down the spirit causing depression. The cycle has to be stopped.
There are several ways women cope with endometriosis. You will find that some may work for you while others may not. Experiment and build a “get well” program for yourself.
– Stop feeling like a victim. Realize that you did nothing that caused you to acquire this disease and that you are not responsible for what it has done to your life. It is the endo, not you, causing it.
– Find an outlet to release all of your negative emotions and feelings. Write in a journal, talk to someone, create poetry or art. Find a way to turn bad energy into good.
– Surround yourself with inspirational thoughts. Hang up your favorite poem or quote and read it when you need encouragement.
– Search for support. Find others to talk to that have the same condition. This can be found in a support group, web-site, or official association.
– Learn to focus on you. Treat yourself to a massage, take a bubble bath, meditate- learn to try new things.
– Become an active participant in your health care. You will feel better emotionally when you realize that you are in charge of your health.
– Become an advocate. Educate others about endometriosis. The more awareness about the condition, the better.
– Be optimistic. Visualize good things and do not focus on the bad. Of course you should be realistic, but try reversing the focus of your thoughts.
– It is unhealthy to hold tension in. If you need a good cry, you need a good cry. It is better to let it all out than to allow it to build up.
There is no easy way or a prescription for coping. Each person is different and will deal with chronic pain and emotional distress in their own way. As with any condition, some days will be better than others will. If you start implementing some of the ideas above, you just may find that you are having more good days than bad.
Author’s name omitted by request
Title: Endometriosis symptoms
Description: Endometriosis symptoms:a disease that causes women chronic pain and sometimes infertility. With no cure, women must learn to cope.