What is endometriosis?
Endometriosis is a very common condition where cells of the lining of the womb (the endometrium)
are found elsewhere, usually in the pelvis and around the womb, ovaries and fallopian tubes. It
mainly affects women during their reproductive years. It can affect women from every social group
and ethnicity. Endometriosis is not an infection and it is not contagious. Endometriosis is not
What could endometriosis mean for me?
The main symptoms of endometriosis are pelvic pain, pain during or after sex, painful, sometimes
heavy periods and, for some women, problems with getting pregnant.
Endometriosis can affect many aspects of a woman’s life including her general physical health,
Endometriosis is common and many women may have no symptoms. An estimated two million
Endometriosis is a long-term condition which affects women of all ages during their reproductive
years (from the onset of menstrual periods to the menopause). It affects women from all social and
Women who do experience symptoms may have one or more conditions:
Painful periods (dysmenorrhoea) which do not respond to over-the-counter pain relief.
pain during or after sexual intercourse (dyspareunia) lower abdominal pain pelvic pain which can be long-term difficulty in getting pregnant or infertility pain related to the bowels and bladder (with or without abnormal bleeding) Long-term fatigue.
Some women do not have any symptoms at all.
Pain is a common symptom of endometriosis. The pain can be a dull ache in the lower abdomen,
pelvis or lower back. Pain affects each woman differently: where it hurts, when it hurts and how
much it hurts. The pain, and the effects of endometriosis, can make you feel depressed.
Most women with endometriosis get pain in the area between their hips (known as the pelvis) and
the tops of their legs. Some women get pain only at certain times, such as during their periods,
when they have sex or when they open their bowels. Other women have pain all the time.
Some women with endometriosis become pregnant easily while others have difficulty getting
pregnant. The pain may get better during pregnancy and then recur after the birth of the baby. Some
women find that their pain resolves without any treatment.
What causes endometriosis?
During the menstrual cycle, under the influence of the female hormones oestrogen and
progesterone, the lining (endometrium) of the womb thickens in readiness for a fertilised egg. If
pregnancy does not occur, the lining is shed as a period.
Endometriosis occurs when the cells of the lining of the womb are found in other parts of the body,
usually the pelvis. Each month this tissue outside the womb thickens and breaks down and bleeds in
the same way as the lining of the womb. This internal bleeding into the pelvis, unlike a period, has
no way of leaving the body. This causes inflammation, pain and damage to the reproductive organs.
Reproductive areas where endometriosis can be found
Endometriosis commonly occurs in the pelvis. It can be found:
on the ovaries where it can form cysts (often referred to as ‘chocolate cysts’) in or on the fallopian tubes almost anywhere on, behind or around the womb In the peritoneum (the tissue that lines the abdominal wall and covers most of the organs in
Less commonly, endometriosis may occur on the bowel and bladder, or deep within the muscle wall
of the uterus (adenomyosis). It can also rarely be found in other parts of the body.
Why does endometriosis occur?
It is not yet known why endometriosis occurs. A number of theories have been suggested but none has been proved. The most commonly accepted theory is that, during a period, light ‘backward’
bleeding carries tissue from the womb to the pelvic area via the fallopian tubes. This is called ‘retrograde menstruation’.
How soon can I expect to get a diagnosis?
For many women, it can take years to get a diagnosis. Doctors say that this is because:
no one symptom or set of symptoms can definitely confirm a diagnosis of endometriosis the symptoms of endometriosis are common and could be caused by a number of other
conditions such as irritable bowel syndrome (IBS) and pelvic inflammatory disease (PID)
different women have different symptoms Some women have no symptoms at all.
There is no simple test for endometriosis. The only way to make a definite diagnosis is by a small
surgical operation known as laparoscopy (see Laparoscopy patient information leaflet). This is not
If you have painful periods and no other symptoms, your GP may suggest that you try pain relief
before having further surgical investigation or treatments.
What types of tests might I be offered?
You should be given full information about the tests that are available. These may include:
you may be offered a scan. This can identify whether there is an endometriosis cyst in the ovaries.
A normal scan does not rule out endometriosis.
For most women, having a laparoscopy is the only way to get a definite diagnosis; because of this, it
is often referred to as the ‘gold standard’ test (see Laparoscopy patient information leaflet).
Making a decision about treatment
You should be given full information about your options for treatment. This should also include
information about the risks and benefits of each option.
Several factors may influence your decision about treatment. These include:
how you feel about your situation your age whether your main symptom is pain or problems getting pregnant whether you want to become pregnant – some hormonal treatments which help to reduce
the pain will stop you from becoming pregnant
how you feel about surgery what treatment you have had before How effective certain treatments are.
You may decide that no treatment is the best way forward. This could be because your symptoms
are mild, you have not had problems getting pregnant or you are nearing the menopause, when
What treatment can I get?
Pain-relieving drugs reduce inflammation and help to ease the pain.
There is a range of hormone treatments to stop or reduce ovulation (the release of an egg) to allow
the endometriosis to shrink or disappear.
The hormonal methods below are contraceptives and will prevent you from becoming pregnant:
The combined oral contraceptive (COC) pill or patch
these contain the hormones oestrogen and progestogen and work by preventing ovulation
and can make your periods lighter, shorter and less painful.
The intrauterine system (IUS): this is a small T-shaped device which releases the hormone
progestogen. This helps to reduce the pain and makes periods lighter. Some women get no
The hormonal methods below are non-contraceptive, so contraception will be needed if you do not
Use of hormonal progestogens or testosterone derivatives
GnRH agonists – these drugs prevent oestrogen being produced by the ovaries and cause
Surgery can be used to remove areas of endometriosis. Surgery including hysterectomy does not
always successfully remove the endometriosis. There are different types of surgery, depending on
where the endometriosis is and how extensive it is. How successful the surgery is can vary and you
may need further surgery. Your gynaecologist will discuss this with you before any surgery.
Laparoscopic surgery (keyhole surgery).
The gynaecologist removes patches of endometriosis by destroying them or cutting them
Laparotomy (open surgery).
If the endometriosis is severe and extensive, you may be offered a Laparotomy. This is
major surgery which involves a cut in the abdomen, usually in the bikini line.
some women have surgery to remove their ovaries or womb (a hysterectomy). Having this
surgery means that you will no longer be able to have children after the operation.
Depending upon your own situation, your doctor should discuss hormone replacement
therapy (HRT) with you if you have your ovaries removed.
What if I am having difficulty getting pregnant?
Getting pregnant can be a problem for some women with endometriosis. Your doctor should
provide you with full information about your options such surgery or assisted conception.
Living with endometriosis
Not all cases of endometriosis can be cured and for some women there is no long-term treatment
that helps. With support many women find ways to live with and manage this condition.
Endometriosis SHE Trust (UK)
[Also provides specific information for teenagers with endometriosis]
Infertility Network UK
Pelvic Pain Support Network
This information has been taken from the Royal College of Obstetricians & Gynaecologists webpage. For further information go to:
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