What is Endometriosis

Endometriosis is a poorly understood disease where the lining of the uterus (endometrium) grows in areas outside the uterus. Nobody knows why this happens although there are a number of different theories, including retrograde menstruation (bleeding back through the tubes), stromal metaplasia (abnormalities in the way tissue is placed during early foetal life) and vascular anomalies (problems with blood vessels).

It may be that all women have endometriosis at some stage during their life but most women are able to suppress its development. In most cases the areas containing endometriosis are reasonably superficial but they can at times be deeply invasive and cause significant scarring and fibrosis not unlike a malignant process.

The disease can be very aggressive involving the pelvis, ovaries, bowel and bladder and even structures such as the diaphragm (breathing muscle). The symptoms can range from none to severe and include infertility, pelvic pain, irregular menstrual bleeding (particularly bleeding before the periods are due) and abdominal bloating. Pain can be very severe and be aggravated by sexual intercourse and bowel or bladder movements. Laparoscopy is the best way to diagnose the disease. Unfortunately it is not possible to diagnose with blood tests or scanning such as ultrasound or CT.

Treatment involves either drugs or surgery. Drugs serve to suppress the symptoms of the disease, but do not remove the problem and most have significant side effects. No drug has yet been shown to eradicate endometriosis or effect a long-term cure. Surgery varies depending on the extent of the disease. Traditional surgical interventions have involved either ablation or total hysterectomy and bilateral salpingoophorectomy. Ablative techniques appear to assist with mild to moderate disease but are no help in severe settings and have the potential for significant damage.

Since the depth of involvement may be particularly difficult to assess, these techniques often result in treatment to the “tip of the iceberg” with the residual disease remaining underneath the zone of treatment and ultimately “disease recurrence” (and more operations). The use of hysterectomy, which has been championed often, unfortunately has no theoretical basis and may make the situation worse by allowing invasive endometriosis to erode into both bladder and bowel. Removing the ovaries may be of value by reducing the hormonal impetus for disease progression, but does not remove the disease and substantially increases the risk of menopausal problems such as osteoporosis and ischaemic heart disease.

Excisional techniques for deeply invasive disease, whereby attempts are made to remove all the disease, have recently been demonstrated to be highly effective at relieving symptoms, with substantially less risk of recurrence than traditional therapy. If completely excised, endometriosis rarely recurs. Unfortunately the surgery is difficult and time consuming with the potential for substantial complications.

Please click on the images below for larger images and descriptions.


Late 17th and 18th century European descriptions of the disease. Knapp VJ. Fertility & Sterility 1999; 72:10-14

This recent article comes from the History Department at the State University of New York and notes that endometriosis was described in European history at least 300 years ago. The author notes that despite increasing recognition of the problem, even today the disease receives inadequate press. By way of example the “Encyclopedia of Medical History” published in 1985 fails to mention it nor do more recent publications as late as 1997.

The first detailed description of wide ranging peritoneal endometriosis was put forward by Daniel Shroen in 1690.

Despite the many symptoms, it is striking over the years that recurrent practitioners recognised the wide ranging extent of the problem and the capacity for endometriosis to have a significant effect on the general well being of the affected individual. It has been described in 1776 “..in its worst stages, this disease affects the well-being of the female patient totally and adversely, her whole spirit is broken, and yet she lives in fear of still more symptoms such as further pain, the loss of consciousness and convulsions.”

The significant pain, resembling labour, associated with the disease has long been noted and at its worst was described by various 18th century investigators as “overwhelming”,  “oppressive”, “convulsive”, “atrocious” and “tortuous”.

Countering the thought that the problem was simply “hysteria” (the derivation incidentally coming  “from the womb”), in 1776 it was asserted that “hysteria is not an idiosyncrasy that we can attribute to the female portion of the population, it is obviously a major symptom of this deeply rooted disease.” In 1797 another physician questioned who would not be nervous and hysterical , “…what with the sad state and anguish of this disease. Women are tortured by the pain associated with this disorder, followed thereafter by a struggle with all of its other myriad symptoms.”

Reading through these descriptions, and with the knowledge that perhaps 10 to 15% of the population have endometriosis, it seems almost unbelievable that in the year 2000 the disease still remains so poorly described and understood.


Historical excision – sampson

  • General progressive disease
  • Iceberg philosophy
  • Relative failure of traditional therapy

Sampson described endometriosis in the early 1920s and initially advised excision although noted that surgery for extensive bowel involvement was an unsettled question. During last century most surgeons then moved to a conservative ablative approach and some are now moving back to a more extensive excisional approach.

It is worth noting that even today the traditional approach involves laparoscopic ablation, medical therapy & then resort to hysterectomy & bilateral salpingoophorectomy even if deeper disease is left behind. Despite the unknown aetiology, the most promising data appears to suggest we should probably be attempting to remove all the endometriosis, not unlike our approach to malignancy.

This strategy increases fertility and decreases pain with success rates above that of simple observation, medical therapy or surface ablation. No medical therapy has yet been shown to eradicate endometriosis. Progressive disease but not in terms of different areas.

  • No drugs known to eradicate disease or result in long term cure.  Garry ‘97 Br J Obstet Gynaecol
  • Medical therapy does not improve fertility for mild, moderate or severe disease. Based on RCTs (Cochrane) Lok 2000. (Many of the major classes of drugs have significant side effects , eg osteoporosis. Discontinuation of drugs usually results in pain recurrence within 12 months.
  • Danazol v GnRH No difference in subjective pain relief or objective disease at 6 months. 40% recurrence at 12 months. Prentice ‘2000 Cochrane review.  Meta-analysis of 15 RCTs involving 1299 patients revealed no difference between Danazol & Gn RH at 6 months & 40% recurrence rates at 12 months. Other studies suggest the side effects of the drugs are a critical factor in compliance.
  • Ablation/excision mild to moderate disease increases fertility & gives long term symptom improvement. Marcoux ‘97 NEJM – Sutton ‘94 Fertil & Steril
  • Excellent long term results with excision without hysterectomy. Reich, Redwine, Wood, Garry.  Ablation is not suitable for deeply invasive disease or when adjacent to vital structures. Redwine remarkable paper. 359 consecutive patients between 1980 & 1990. Criterion for inclusion was that all visible endometriosis could be excised at laparoscopy. Low rate of persistent or recurrent disease refutes the traditional thinking that endometriosis is a highly progressive disease despite treatment & that hysterectomy & oophorectomy are warranted.
  • Excision – Recurrent or persistent disease 19% @ 5 years. Redwine ‘91 Fertil & Steril Significant & sustained pain relief up to 4 years following excision. Redwine ‘95.  Redwine ‘95. Study of >500 cases. Significant reduction in pelvic pain scores, dyspareunia & painful bowel movements after extensive excision.The laparoscope, a surgical instrument similar to a telescope, is inserted through a small cut in the belly button. The abdomen is distended with a gas called carbon dioxide. The scope allows the doctor to see the pelvic organs and allows other instruments to be used under direct vision. Small second, third and fourth cuts are occasionally made at the pubic hairline for scissors, coagulator, or laser to perform major closed surgery at laparoscopy.
  • Medical therapy rarely results in disease regression.
  • Ablation of disease effective in mild setting
  • “Iceberg” phenomenon & depth of disease
  • Excision suitable for all cases
  • Difficult, time consuming surgery
  • Potential complications
  • Medical therapy may have a role as a maintenance strategy, particularly when involving the OCP & progestogens.


We use electricity to create heat and therefore cut out the tissue. The effect is very similar to laser and when using the energy as we do there is minimal scarring as distinct from simple “cautery” which can result in scar tissue. Any surgery will result in some scar tissue but there is no reason this should be removed later.

Our results and those of similar units around the world suggest that if we can completely eradicate the disease it does not come back. The difficulty is that it can be extremely difficult to recognise and may only be microscopic and therefore the potential arises for it to recur or regrow. Despite this all the current studies are suggesting this is the way to go.

This is OK. It is probably preferable not to operate at the time of menses but even this is generally not a major problem.

  • The surgery tends to relieve the pain and we have been impressed by some extremely good results where patients wake up straight after with no pain although this is unusual. Many patients comment on increasing energy levels but I am unable to generalise as to how effective this is.

Yes. Especially in the 12 months straight after surgery. You do not have to wait for the tissues to heal before attempting to conceive.

Endometriosis is tissue that responds to the influence of hormones produced by the ovaries. Under normal circumstances ovulation is accompanied by the release of a large concentration of these hormones within the pelvis which act locally on the nearby endometriosis. If you stop ovulating, either by going through the menopause or taking the oral contraceptive pill, the high concentration of hormones active within the pelvis is substantially reduced to much lower levels.

These lower levels have less effect on the endometriosis and hence many people notice some relief from their symptoms. There is some evidence to suggest that women who use the pill for extended periods have less chance of developing endometriosis. Following from this it is reasonable to use the pill after surgery to help decrease the risk of any recurrence.

Unfortunately the pill does not remove or get rid of existing disease. The pill is therefore of no help in getting pregnant if fertility is an issue.