ENDOMETRIOSIS Information Leaflet

ENDOMETRIOSIS
Information Leaflet

Your Health. Our Priority.

www.stockport.nhs.uk         Gynaecology | Stepping Hill Hospital

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What is Endometriosis
Endometriosis is a very common condition affecting about 1 in 10 women of childbearing age. It
may affect as many as 2 million women in the UK, and does not discriminate between age, race
or colour. It occurs when cells similar to those normally lining the womb (endometrium) begin to
grow in the wrong place, outside the womb, in other parts of the body. It mainly develops within
the pelvis. It can affect all of the pelvic organs including the ovaries, Fallopian tubes, supports
of the womb (ligaments), bowel, bladder and the lining of the pelvic cavity (peritoneum). If it
involves the ovary then it often causes cysts (endometrioma). Rarely is it found in other areas
such as the nose or lungs, and it has even been found in men. It can also occur in the muscle
layer of the womb, deep to the womb lining - a condition called Adenomyosis.

During the normal menstrual cycle special chemicals called hormones circulate throughout the
body. They cause the release of an egg from the ovary and make the endometrium thick, ready
to accept the fertilised egg. If pregnancy does not occur then the endometrium is shed as a
‘period’. With endometriosis, the endometrial like cells outside of the womb may also respond
to the hormones of the menstrual cycle, similar to the cells lining the womb. They can then
produce chemicals which may cause pain, other symptoms and may interfere with fertility.

What causes Endometriosis?
No one knows what causes endometriosis, but there does appear to be a genetic link. Dr
Sampson in the early 1920’s suggested that endometriosis resulted from “retrograde
menstruation”. In up to 90% of women during a period, blood flows backwards down the
Fallopian tubes and into the pelvic area. This blood contains cells from the lining of the womb,
which may then stick to surfaces outside the womb to cause endometriosis. This does not
explain many things about endometriosis – like how it can be found in noses or men. Other
people believe that as the womb develops, cells can be put down in the wrong place to later
develop into endometriosis. It could spread through the blood stream or lymphatic system from
the womb, or could be a reaction by the cells in the peritoneum to some form of injury. It could
also be because the body does not adequately clear cells from the peritoneum or attacks itself –
an “autoimmune” process. It is likely that it is a combination of these things.

What we need to find out is why does this not happen to all women and how can we treat the
endometriosis without affecting the endometrium lining the womb.

www.stockport.nhs.uk                                         Gynaecology | Stepping Hill Hospital

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What are the symptoms of Endometriosis?
The symptoms of the condition vary from person to person, and often begin as teenagers. In
some girls their periods are so bad they need time off school. The symptoms can vary in site,
type and severity. Up to three quarters of sufferers may require time off work. However, not all
women with the disease have symptoms. Some women show no symptoms at all despite
having severe disease. Others experience severe symptoms despite only having mild disease.

The most common symptoms include:
 Pelvic pain
 Pain during sexual intercourse
 Pain with or before periods
 Infertility

In addition, some women with endometriosis suffer from:
 Heavy periods
 Discomfort when urinating
 Painful bowel movement (with possible bleeding from the anus)
 Symptoms similar to irritable bowel - nausea, vomiting and constipation
 Pain with ovulation
 Pain down the inside of the thigh
 Fatigue and Depression
 Rarely – rectal bleeding, coughing up blood, shoulder pains, nose bleeds

Pain with intercourse and infertility are the commonest reasons why GP’s refer women to
gynaecologists. Other symptoms are often ignored or result in referral to other health care
professionals, resulting in delayed diagnosis.

How is endometriosis diagnosed?
Diagnosis of the disease may take time, often several years (on average 8 years). It cannot be
confirmed by symptoms alone, because the symptoms can be confused with those of other
medical conditions. At present endometriosis cannot be reliably diagnosed by blood tests or
ultrasound scans. Blood tests are currently being evaluated, but at present none are reliable
enough to use routinely. Ultrasound and other scans can show ovarian cysts full of
endometriosis (endometrioma) but do not identify other areas that can be affected with
endometriosis.

Endometriosis is normally diagnosed by a gynaecologist. An internal examination may help to
try and detect small swellings or areas of inflammation that may indicate that you have
endometriosis; and that can be associated with pain.

Unfortunately, the only way to confirm endometriosis is by an operation called a laparoscopy
where a fine telescope is inserted through a tiny cut in the tummy button. Through the
telescope the surgeon can examine the pelvic organs to confirm if your symptoms are from
endometriosis. The procedure is usually done under general anaesthetic as a day case.

www.stockport.nhs.uk                                        Gynaecology | Stepping Hill Hospital

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What does it look like?
There are lots of different appearances of endometriosis. The typical appearance is little black
spots that look like burnt matchstick heads. These are often seen in older women. In younger
women there may be little white spots, red spots and signs that new blood vessels are growing
to support the endometriosis. There can be lumps of white scar tissue that are felt rather than
seen. There can be cysts in the ovary and adhesions (scar tissue) that tie organs together
causing further problems. Sadly, these other appearances of endometriosis can be missed,
even at operation, particularly if your surgeon is not experienced at looking for the different
types of disease.

Classification of the disease
As mentioned above endometriosis has many different appearances, it also can vary in amount
from a few spots to a disease that invades through the bowel or bladder. The amount of
endometriosis that you have does not always predict the amount of pain that you may suffer
with. Some women with horrendous endometriosis only have small amounts of pain, and some
women with small amounts of endometriosis have huge amounts of pain. Doctors like to try and
classify the amount of endometriosis, but no good classification system exists at the current
time. The commonest used one is called the rAFS (revised American Fertility Society) scoring
system. This is good for predicting the chances of pregnancy with the amount of endometriosis
about, but is not so good for scoring pain. Other doctors like to classify the disease as mild,
moderate or severe depending on how it looks.

What treatment is available?
Although there is currently no cure for endometriosis, a number of different treatments exist.
Treatment is generally focussed on easing your symptoms to allow you to lead a normal life and
will depend on several factors such as your age and your desire for having children.

Do nothing
If endometriosis is left untreated, it becomes worse in about 4-5 in 10 cases. It gets better
without treatment in about 2-3 in 10 cases. For the rest it stays about the same. Endometriosis
is not a cancerous condition, nor does it reduce life expectancy. However, it does affect the
quality of peoples’ lives.

Medical treatment
If your condition is mild then your doctor may recommend that you just have regular check-ups
to keep an eye on things to see if the problem gets worse. The symptoms from endometriosis
can get better by themselves. If you are experiencing pain then this can be controlled by the
use of simple anti-inflammatory drugs like asprin and brufen and/or pain killing drugs like
paracetamol and codeine.

It has long been thought (although it is not proved) that endometriosis is cured by reaching the
menopause or becoming pregnant, and some doctors advise pregnancy as a treatment. This
can be quite difficult especially if sex hurts and infertility is a symptom. It is true that many

www.stockport.nhs.uk                                         Gynaecology | Stepping Hill Hospital

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women feel better when they are not having periods, so most drug treatments aim to mimic
pregnancy or the menopause.

The drugs commonly used to mimic pregnancy are the oral contraceptive pills (the pill) taken
continuously and progestogenic contraceptives (Mirena coil, Implanon, Depo-Provera,
Cerazette and the mini-pill).

Drugs to mimic the menopause are called GnRH analogues. They act by switching off the
hormones that control the ovaries. The ovaries then do not grow any eggs but more
importantly, release the hormones that are thought to stimulate the endometriosis. Because
these drugs cause menopausal side effects they are usually given in combination with HRT.
Another drug called Danazol used to be recommended. This has male hormonal side effects
and has been linked with a slightly higher chance of developing ovarian cancer. Now, because
of this it is not recommended as the first drug to try for endometriosis.

All the drugs are equally effective, no one drug works better than another. If you are
trying to get pregnant none of these hormonal drugs are of any benefit and they should
be avoided. If you have large ovarian cysts or adhesions then drug treatments are
unlikely to work.

The drugs may reduce or eradicate the symptoms of endometriosis in many women (80-90%)
whilst they are taking them, in others drugs make little difference to their symptoms. Drugs are
often recommended for 6 months and after stopping them many women will experience a rapid
return of their symptoms. They all have side effects and the one that is best for you is the one
with the least number of side effects. You can always ask for more details of the possible side-
effects of your recommended treatment. If you are taking a drug and it is not helping with your
symptoms, or you are getting awful side-effects stop taking it.

Several of the drugs mentioned above have been studied scientifically and have been shown to
reduce symptoms and the amount of endometriosis present whilst they are being taken.
Several other drugs have been tried, but have not been exhaustively tested. This perhaps
illustrates that the perfect drug treatment is not available at the present time. These include
Pycnogenol (pine bark) which in a small study reduced symptoms from endometriosis from
severe to moderate and allowed women still to get pregnant.

Aromatase Inhibitors
New drugs are being developed that are aimed at stopping the endometriosis from growing or
preventing it from releasing its harmful chemicals.

Surgical treatment
Surgery can be used to remove or destroy the endometrial growths and relieve the symptoms
they cause. The type of surgery carried out will depend on where and how extensive the
growths are, and the capabilities of your surgical team. It is in the area of surgical treatment
that advances are occurring.

Where fertility is concerned surgery seems to increase the chances of getting pregnant.

www.stockport.nhs.uk                                         Gynaecology | Stepping Hill Hospital

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Conservative surgery
The aim of surgery is to remove or destroy the endometriosis, whilst leaving the womb behind.
Most operations can be performed with Keyhole surgery during a laparoscopy and involve
cutting the growths away or destroying them with either laser treatment or cauterisation (heat
treatment). Laser and cautery treatment may not always go deep enough to destroy the
endometriosis, often resulting in further surgery. Reports suggest that 60-70% of women
treated with laser will get some improvement in their symptoms. Cutting the endometriosis
away (excision) seems to be the best way forward at present, especially if ovarian cysts are
present (see later section).

Sometimes it is necessary to perform a more extensive operation where your abdomen is
opened with a larger incision (laparotomy). This is often done if you require bowel surgery to
remove the endometriosis. With this type of operation a much longer recovery period will be
needed. Hormone therapy may be used in conjunction with conservative surgery.

Radical surgery
If you have no success with other treatments or if there is a possibility of adenomyosis then a
hysterectomy may be suggested. This may involve the removal of your womb and is done with
or without the removal of your ovaries. If your ovaries are removed you will need to discuss
Hormone Replacement Therapy (HRT) with your doctor.

A hysterectomy is generally considered as a last resort when all other treatment options have
been explored. It does not cure endometriosis by itself. Preferably the hysterectomy should be
done with keyhole surgery and any endometriosis should be removed or destroyed at the same
time. This type of procedure is often called ‘radical surgery’ as the impact on your body can be
significant. It involves a major surgical procedure and requires a hospital stay of about a week.
It may take as long as 3 months to recover fully from the operation.

Ovarian Endometriosis
Endometriosis found in the ovary is commonly referred to as endometriomas. We do not know
how they form, but think that it may be due to growth of endometriosis into the ovary from the
side of the pelvis. This may be why most ovaries that contain endometriosis are stuck to the
wall of the pelvis. This is the area where the tube from the kidney to the bladder runs (ureter)
and where a nerve that supplies the thigh is found. This is the reason why many women with
endometriotic cysts get pain down the inside of their leg. It also means that when surgery is
performed to remove the cyst and the endometriosis beneath, the ureter can be damaged.

We know that if there is an endometrioma present then drug treatments will not work. We also
know that 1 in 3 women who have endometriomas will also have more severe endometriosis.

At the current time we think that the best way of treating the cyst is to remove it (a cystectomy).
This is associated with a lower rate of recurrence and a higher pregnancy rate than draining it
and destroying the cells that line it. If you have an endometrioma and are considering IVF then
it is recommended by NICE that they are removed first, because this is associated with a higher
pregnancy rate, even if you are not experiencing any pain from it. Some IVF doctors are
concerned that this could damage the ovary, but science at the moment recommends removal
as the best form of treatment.

www.stockport.nhs.uk                                         Gynaecology | Stepping Hill Hospital

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What are the risks
Every operation carries an element of risk. Most surgical treatments for endometriosis (including
diagnostic laparoscopies) are carried out under general anaesthetic which itself carries a small
risk. Making an incision into the abdomen, no matter how small, may lead to infection, bleeding
and other problems but your surgical team will try to ensure that the chances of complications
are minimised.

During the procedures, surgical instruments are moved around inside your abdomen and
despite special care by the surgeon there is a small chance that the instruments may damage
some of the surrounding tissue or organs. If the instruments puncture or tear tissue the surgeon
is usually able to repair the damage but in very rare cases a repair may not be possible and it
may be necessary to remove the damaged organ completely.

Rarely there can be damage to major blood vessels that causes significant bleeding and a
blood transfusion is required. Also if your bowels need surgery on them there is a chance that
the bowels can be damaged and a hole could form making you seriously ill afterwards. Taking
cysts out of the ovary can rarely cause bleeding that can only be stopped by removing the entire
ovary.

In some cases the damage is very minor (much like an abrasion) and your body will heal itself
over the course of 4-5 days following your operation. However, during this healing process
there is a chance that adhesions may form. Adhesions are band-like growths that can form
between tissues and organs at and around the site of surgery. The vast majority of adhesions
do not cause problems but in some patients they have been seen to bind, block and otherwise
impair tissue and organs leading to complications in later life. Adhesions are associated with
fertility related problems, pain, bowel obstruction and may complicate future surgery. Adept is
used to try and reduce the formation of adhesions. This is a sugary fluid that stays inside your
tummy for about 4 days. Your body than adsorbs it. The idea is that the organs float in the
solution while things are healing. Sometime the ovaries are lifted temporarily by stitches
through your tummy.

Other treatments
Acupuncture, homeopathy, nutritional therapy etc. Alternative medical treatments often have a
role to play and can help women tremendously with many of their symptoms. Details of these
types of treatment are beyond the scope of this leaflet.

Making the right choice – giving consent
Your doctor should discuss all of the available treatment options and how suitable they are for
you. Ultimately, though, it is your decision. Your doctor will not proceed with treatment until
he/she knows you are comfortable and gets your agreement. It is therefore very important that
you understand the benefit of treatment and the possible risks before you consent. The
following questions may help you get the information you need to make your mind up as to what
is best for you.

www.stockport.nhs.uk                                        Gynaecology | Stepping Hill Hospital

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If your doctor is recommending drug treatment
 What are the benefits of the medicine you are suggesting?
 What are the possible side-effects of this medicine?
 How long do I need to take the medicine?

If your doctor is recommending surgery
 Are you a doctor with a special interest in endometriosis?
 What operation are you recommending?
 Why do I need the operation?
 Is surgery absolutely necessary?
 What are the alternatives?
 What are the benefits of having the operation?
 Do you work in conjunction with other surgeons?
 What will happen if I do not have the operation?
 What kind of anaesthesia will I need?
 How do I need to prepare for the operation?
 How long will it take me to recover after the operation?
 Can you explain the measures you will take to minimise the complications both during and
    after surgery?

Excisional Surgery
Excision means to cut away. The aim of this surgery is to remove the endometriosis whilst
preserving the womb, tubes and ovaries. It is currently thought to be the gold standard of
treatment for the disease. The surgery can be performed laparoscopically (key-hole) in
experienced hands. There are advantages of key-hole surgery as you get smaller cuts, require
less time in hospital, less pain killers and are back to normal activities in a shorter period of
time. With a magnified view of the pelvis, it is easier to see the endometriosis and therefore
remove it. There may be less blood loss and possibly the formation of less scar tissue
(adhesions).

Prior to surgery you will require bowel prep. This is medicine that clears out the bowels. It
makes it slightly easier to perform the surgery, but more importantly if your bowel is cut whilst
removing the endometriosis it is thought to be safer to stitch it back up with an empty bowel.

The average time of surgery is about 90 minutes, although with extensive endometriosis
operations can last for several hours. The surgery is normally performed by a gynaecologist
with the aid of surgeons and urologists if necessary. Most people are in hospital for 1-2 days
afterwards.

There is no guarantee that the surgery will result in future pregnancies. If you are trying to get
pregnant and have endometriosis the National Institute of Clinical Excellence (NICE)
recommends that you have surgery first. Studies suggest that once this type of surgery has
been performed, then of those women who try to get pregnant 50% will.

There is no guarantee that you will be pain free afterwards, or will not require further surgery.
The surgery often provides long term relief from symptoms but there is a chance that further
endometriosis could develop over time. It would appear that about 1 in 3 women will undergo
further surgery at some point, but often there is no further endometriosis seen. Again, from

www.stockport.nhs.uk                                          Gynaecology | Stepping Hill Hospital

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published studies about 80% of people will have a significant reduction in their pains. One of
the things the surgery may not help with is painful periods, but it is good for other pains (such as
those with intercourse). For 20% of people (1 in 5) this surgery will not work. It may not work
because the endometriosis is not actually causing the pain and there could be conditions within
the womb for instance, like adenomyosis that are untreated by the surgery.

As with any operation there are risks. These include ones associated with the anaesthetic,
insertion of the laparoscope and then the operation itself. When the camera is inserted into the
tummy it could end up in the wrong place, especially if there are extensive adhesions.
Surgeons think that the risks of this complication can be reduced by inserting the laparoscope
whilst directly looking (open laparoscopy) rather than the conventional blind insertion. As a
result of this, a stitch is inserted into your muscles underneath your tummy button at the end of
the operation. This can feel uncomfortable for weeks, and you are at a higher risk of developing
an infection in your wound.

As well as a cut in your tummy button measuring about a centimetre you will have 2-3 small half
centimetre cuts lower down. It is through these cuts that the scissors and graspers are put into
your tummy. Removing endometriosis involves both looking and feeling. The surgery aims to
remove all visible endometriosis and any scar tissue that is felt. Some may be left behind,
especially if it is too small to see. Whilst removing the endometriosis there is a chance of
damaging blood vessels and you may bleed and require a blood transfusion. There is a chance
that your bowel may be cut when removing endometriosis from its surface. The bowel can
normally be stitched, and the chances of a colostomy bag are tiny. However, once stitched,
there is a small chance of it breaking down and you becoming severely ill. If there is
endometriosis involving the bladder or the tubes from the kidney (ureter) these may be cut when
the endometriosis is removed. They can also be stitched.

Thankfully it is rare that major complications occur.

Contact us
Endometriosis UK
Tel: 0800 808 2227
www.endometriosis-org.uk

The Simple Holistic Endometriosis Trust (SHE)
Tel: 08707 743665/4
www.shetrust.org.uk

The Endometriosis Association
www.endometriosisassn.org

Fertility based

WellBeing
Tel: 0207 772 6400
www.wellbeing.org.uk

www.stockport.nhs.uk                                          Gynaecology | Stepping Hill Hospital

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Endometriosis

The Endozone
www.endozone.com

Dr David Redwine
www.scmc.org/endo.html

Diane Shepperton Mills (nutrition)

Others

www.endometriosis.org
www.endometriosisguide.com
www.killercramps.org

General information

FPA (formerly the Family Planning Association)
Tel: 0845 310 1334
www.fpa.org.uk

The Hysterectomy Association
www.hysterectomy-association.org.uk
Tel: 0871 781 1141

NHS Direct
www.nhsdirect.uk
Tel: 0845 4647

www.stockport.nhs.uk                             Gynaecology | Stepping Hill Hospital

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Leaflet number          MAT137
Publication date        December 2012
Review date             October 2014
Department              Gynaecology
Location                Stepping Hill Hospital

www.stockport.nhs.uk                                       Gynaecology | Stepping Hill Hospital