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Endometriosis

Diana Wallis MEP is a patron and supporter of the National Endometriosis Society (www.endo.org.uk), which is the largest UK charity devoted exclusively to working with people affected by endometriosis. She will post details of her campaigns on this site.

Diana Wallis MEP, along with fellow MEPs Jean Lambert, Catherine Stihler, John Bowis and Charles Tannock, introduced a Written Declaration on Endometriosis to the European Parliament to raise the profile of this disease.

Opened on 9 March 2005 it narrowly failed to obtain the required number of MEPs' signatures before the cut-off date of 9 June 2005 so that it would have been adopted and sent to the Council and the Commission. Nevertheless the European Commision has subsequently agreed to include endometriosis in its future work programme, and Diana continues to lobby the Commission on this issue.

NEWS: The first ever worldwide study of the societal impact of endometriosis has found a significant loss of work productivity among women who suffer from the condition - Endometriosis accounts for a significant loss of productivity of 11 hours per woman per week according to a paper published in July 2011 in Fertility and Sterility - read more here.

What is Endometriosis?

Endometrium is the tissue that lines the uterus (the womb). During the menstrual cycle the thickness of the endometrium increases in readiness for the fertilised egg. If pregnancy does not occur the lining is shed as a 'period'.

Endometriosis (pronounced end-oh-mee- tree-oh-sis) is a condition where the cells that are normally found lining the uterus are also found in other areas of the body but usually within the pelvis. Each month this tissue outside of the uterus, under normal hormonal control, is built up and then breaks down and bleeds in the same way as the lining of the uterus. This internal bleeding into the pelvis, unlike a period, has no way of leaving the body. This leads to inflammation, pain and the formation of scar tissue. Endometrial tissue can also be found in the ovary where it can form cysts, called 'chocolate' cysts.

You can also have endometrial tissue that grows in the muscle layer of the wall of the uterus. This is called adenomyosis. Each month this tissue within the muscle wall bleeds in the same way as the endometrial tissue in the pelvis bleeds. Adenomyosis can also be found in the muscle layer of the perineum - in the pouch of Douglas or cul de sac.

Endometrial deposits can also be found in more remote sites than the pelvis. Endometriosis can be found in or on the bowel, in or on the bladder, in operation scars and in the lungs. The only site that endometriosis has not been found is the spleen.

  • Endometriosis is not an infection.
  • Endometriosis is not contagious.
  • Endometriosis is not cancer.

Why does it occur?

The cause is unknown but several theories have been put forward.

  • Retrograde menstruation.
  • Lymphatic or circulatory spread
  • Genetic predisposition to the condition
  • Immune dysfunction
  • Environmental causes - such as dioxin exposure

Of the theories, the most widely accepted is retrograde menstruation. According to this theory some of the menstrual blood flows backwards down the fallopian tubes and into the pelvis. Some of the endometrial cells, contained in the menstrual fluid, implant on the reproductive organs or other areas in the pelvis. These implanted cells cause endometriosis. What is not known is why these endometrial cells implant in some women and not in others.

Symptoms of endometriosis

The classic symptoms of endometriosis are:

  • Painful periods
  • Painful sex
  • Infertility

Women with the condition also report many other symptoms:

Pain

  • Painful periods
  • Pain starting before periods
  • Pain during or after sexual intercourse
  • Ovulation pain
  • Pain on internal examination

Bleeding

  • Heavy periods with/without clots
  • Prolonged bleeding
  • Pre-menstrual spotting
  • Irregular periods
  • Loss of dark or old blood before a period or at the end of a period

Bowel and Bladder symptoms

  • Painful bowel movement
  • Pain before or after opening bowels
  • Bleeding from the bowel
  • Pain when passing urine
  • Pain before or after passing urine
  • Symptoms of an irritable bowel - diarrhoea, constipation, colic

Other symptoms

  • Lethargy
  • Extreme tiredness

The majority of women with the condition will experience some of these symptoms. Some women with endometriosis will have no symptoms at all.

The amount of endometriosis does not always correspond to the amount of pain and discomfort. Chocolate cysts on the ovary can be painfree and only discovered as part of fertility investigations. A small amount of endometriosis can be more painful than severe disease. It depends, largely, on the site of the endometrial deposits.

All of the symptoms above may have other causes. It is important to seek medical advice to clarify the cause of any symptoms. If symptoms change, after diagnosis, it is important to discuss these changes with a medical practitioner. It is easier to put all problems down to endometriosis and it may not always be the reason.

How common is Endometriosis?

Endometriosis is the second most common gynaecological condition. We estimate that 2 million women have endometriosis in the UK.

Who gets Endometriosis?

The stereotypical woman with endometriosis has been described as in her thirties, a career woman who has delayed childbearing. Whilst we know that this picture is far from true the myth persists.

Endometriosis can occur at any time from the onset of menstrual periods until the menopause. It is extremely rare for it to be first diagnosed after the menopause, but not unknown. For the majority of women the condition ceases at the menopause.

How is endometriosis diagnosed?

The only way to diagnose endometriosis is by a laparoscopy. This is a minor operation in which a telescope (a laprascope) is inserted into the pelvis via a small cut near the navel. This allows the surgeon to see the pelvic organs and any endometrial implants and cysts.

Occasionally diagnosis is made during a laparotomy. A laparotomy is a major operation, which involves a cut into the abdomen.

Scans, blood tests and internal examinations are not a conclusive way to diagnose endometriosis.

In 1994 the Society carried out a survey among its members which revealed that the average time between first reporting symptoms and receiving a diagnosis was 7 years.

Treatments

There is a range of treatments available to women with endometriosis. Unfortunately, none of the treatments offer a cure for the condition. The treatments on offer can help:

  • Relieving pain symptoms
  • Shrinking or slowing endometrial growth
  • Preserving or restoring fertility
  • Prevent/delay recurrence of the disease

The treatment that a woman is offered should be decided in partnership between her and her medical advisors. The considerations about what type of treatment should be used depend on several factors:

  • Age
  • The severity of the symptoms
  • The desire to have children
  • The severity of the disease

Many women are told that if they get pregnant it will cure their endometriosis. This is not the case. Women can have long periods without symptoms following pregnancy and breast-feeding. For many women their endometriosis does eventually recur.

Hormonal Treatments

Hormonal treatment aims to stop ovulation and allow the endometrial deposits to regress and die. They either put the woman into a pseudo-pregnancy or pseudo-menopause.

Drugs used include:

Testosterone derivatives

  • Danazol
  • Gestrinone (Dimetriose)

Progestogens

  • Medroxyprogesterone (Provera)
  • Norethisterone (Primolut)
  • Dydrogesterone (Duphaston)

GnRH analogues

  • Leuprorelin (Prostap)
  • Goserelin (Zoladex)
  • Nafarelin (Synarel)
  • Buserelin (Suprecur)
  • Triptorelin (Decapeptyl)
  • Combined Oral Contraceptive Pill
  • Mirena Coil
  • Depo-Provera

All the hormonal treatments have side effects. These vary from woman to woman.

All of the drugs above, except the oral contraceptive pill and the Mirena coil, have been shown in clinical trials to be equally effective as treatments for endometriosis.

With the exception of the Mirena Coil and the oral contraceptive pill the drugs used to treat endometriosis are not contraceptives and barrier methods of contraception should be used during treatment.

Surgery

Conservative surgery seeks to remove and destroy the endometrial growths. This is either done by laparoscopy or by a larger open operation - a laparotomy.

Radical surgery may be necessary in women with severe endometriosis. Hysterectomy can be done with or without removing the ovaries. If the ovaries are left in place then the chance of persistent disease is increased with some women needing a further operation to remove the ovaries at a later date. For radical surgery to offer hope of a cure for endometriosis then hysterectomy, the removal of the ovaries and removal of any endometrial growths should be done. Radical surgery should be the 'last resort' treatment and not contemplated until all other treatments have been tried or ruled out.

Complementary Therapies

Options include acupuncture, aromatherapy, Chinese herbs, Western Herbs, homeopathy, nutrition, reflexology, naturopathy, Reiki and osteopathy.

There are no clinical trials based on the efficacy of complementary therapies as treatments for endometriosis. However, many women do have improvement of their symptoms whilst using such therapies. It is probably wise to seek help from a qualified practitioner and not self medicate.

The National Endometriosis Society can be contacted via www.endo.org.uk

The World Endometriosis Foundation can be contacted via http://endometriosisfoundation.org/

Raising funds for endometriosis research

In 2009, Diana ran the London Marathon in order to raise funds for endometriosis research. Her training blog is no longer online, though you read an interview with her prior to the race below

http://endometriosis.org/news/general/vice-president-of-the-european-parliament-to-run-london-marathon-for-endometriosis-research/