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What is endometriosis?

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A very basic facts and FAQ!

What is endometriosis?

Endometriosis is a condition in which tissue similar to the womb lining (endometrium) is found outside the uterus. This tissue responds to the hormonal changes in a woman's body, growing and shedding blood. However, the blood has nowhere to go, so it causes internal bleeding, inflammation, and adhesions - a "gluey" type of tissue that bonds organs together. It is a chronic, extremely painful illness. It is often "staged" by the gynaecologist, I - IV, with the stages measuring, minimal, mild, moderate and severe endometriosis

Who can get it?

It is estimated that 10% of women have endometriosis, irrespective of age or race. Since the symptoms can be misleading, or may corrolate to various other disorders such as IBS or PID, there may be a delay in diagnosis. A survey performed by the National Endometriosis Society showed an average delay of seven years between first complaint and eventual diagnosis. There is no link between endometriosis and cancer.

How is it caused?

Recent announcements at the Endo Congress have shown that there is a definite genetic link, however still nobody knows why some women are affected so badly whiule others aren't. Among other theories, it is suspected that menstrual blood flows backward along the fallopian tubes - retrograde menstruation, which happens in most women - to become stuck in the abdominal cavity. In most women, the immune system deals with this "foreign body", but in women with endometriosis this doesn't happen. There is also a genetic theory, currently under investigation in Oxford, an environmental toxin theory, and various other ideas. As yet, though, it is still unknown.

What are the symptoms?

Pelvic pain * Painful periods * Heavy, clots, or irregular periods * Painful sex (dyspareunia) * Lower back pain * Ovulation pain * Fatigue & lethargy * Bowel or bladder pain * IBS symptoms * Infertility in some cases

The pain felt bears no relation to the stage of the disease. Stage I can be far more painful than stage IV, and vice versa. Endometriosis affects women in many different ways, some women do not even know they have it, or it may be discovered during unrelated surgery. For others, their daily life is a battle against the pain and fatigue. Most women will have symptoms varying between the two.

How is it diagnosed?

Although a gynaecologist may be able to suspect endometriosis from a patient's symptoms and history, endometriosis can only be diagnosed by surgery. Normally, a laparoscopy (lap) will be performed, which is when a small incision will be made in the navel, the abdomen inflated with gas to allow the organs to move freely, and then a laparoscope - a tiny camera - is inserted to enable the surgeon to examine all the pelvic and abdominal organs.
The new Metrio Test (see the news page) should one day overcome this invasive procedure!

What is the cure?

There is no cure for endometriosis. It is thought that pregnancy, breast-feeding, menopause or hysterectomy may relieve the symptoms and send the endometriosis into remission, but there is no guarantee that this will work, and many women find that their endometriosis is not helped at all. Drugs and surgery may also help keep the disease under control.

Will I be infertile?

The answer to this is that no-one will know for certain until you try. The majority of women with endometriosis have unaffected fertility - figures quoted in most literature range from 60 - 70%. Of the other 30 - 40%, many will go on to have a family with assisted fertility. No figures exist to show how many women who suffer fertility problems never have children. This is one of the reasons that early diagnosis and efforts made to control the disease are so important, to preserve fertility.

What surgical techniques are there?

Many people now think that removing all the endometriosis from the organs by laser or excision is the best way to control symptoms. This can be done via laparoscopy, sometimes during the diagnostic surgery, or via laparotomy - open abdominal surgery. There tend to be four levels of surgery;
* Diagnostic: a lap to determine if endometriosis is present.
* Conservative: removing obvious endo and/or adhesions from pelvic cavity.
* Aggressive: removing every trace of endometriosis and adhesions, regardless of location.
* Radical: hysterectomy with or without removal of disease.
There are also several techniques to remove the endometriosis, all with their positives and negatives. Manual excision, laser excision, laser vaporisation, electro coagulation and helica (helium) coagulation are among the choices. It is necessary to find out both which surgical technique and which level of surgery your surgeon favours.

What about drug therapy?

Hormonal drug treatments fall into four main categories.
The Pill: which tends to have least side-effects and is often the first option to try.
Progesterone-type Drugs: such as depo-provera, which mainly have manageable side-effects.
Androgenic Drugs: Such as danazol, which have a wide range of side effects, some permanent.
GnRH analogues: Such as prostap (lupron) which have menopausal side-effects.
All of these drug therapies aim at preventing ovulation, since it is thought that oestrogen aggravates endometriosis. However, some of the side effects can be horrific - so much so, that GnRH drugs should only be used for a maximum of six months in a lifetime. It is important to research the drugs as much as possible. Informed choice should be the only choice. None of the drug therapies will have any effect on adhesions, endometriomas (ovarian cysts) or endometrial nodules (deep, flat, white endometriosis often found in the peritoneal wall).

What else can I try?

Some women have had success with alternative therapies, such as acupuncture or Chinese medicine. Diet and exercise also play a part in dealing with endometriosis. Western herbs or homeopathy are thought useful by some. If you wish to follow a naturopathic route, then choose a method that you are comfortable with, do your research and choose a therapist by recommmendation, ensuring that they are a registered, licensed member of their council.
There are also several surgical procedures that may help. LUNA - laparoscopic uterine nerve ablation interrupts nerve messages, as the nerves are cauterized or cut as they leave the cervix. PSN - presacral neurectomy is a similar process with the interruption being at the lowest vertabrae. LUNA helps reduce pain levels for 50-70% of women, PSN for about 85%. Both can be performed lapaoscopically. A new method, pudendal nerve infiltration, is being researched and used, especially in Nantes to help those with nerve damage.
Uterine ablation helps with excessive bleeding. It can be quickly performed under local anasthetic, and involves a "balloon" cauterizing the inside of the womb. It is not recommended for women who would like to have children.

The information and links provided here and elsewhere through this site are not intended as medical advice. If you have or think you have endometriosis please seek medical treatment.