Medical Webinar Series
This information package is not a substitute for a medical opinion. It is designed as an educational reference to allow you to make more informed decisions in consultation with your doctor. Much of what is conveyed during a consultation can be forgotten, this package is here to help remind you of various points that may have been discussed in your consultation and the suggestion of your tailor-made care plan.
What is endometriosis?
Endometriosis is present when the tissue that is similar to the lining of the uterus (womb) occurs
outside this layer and causes pain and/or infertility. The lining layer is called the endometrium and this is the
layer of tissue that is shed each month with menstruation (period) or where a pregnancy settles and grows.
This layer consists of two sublayers:
1. A base layer that is always present, this is where the new tissue regenerates following a period;
2. A surface layer that is shed with each period.
What problems does endometriosis cause?
Two types of problems can occur when endometriosis is present. These are:
2. Infertility (trouble becoming pregnant)
It is possible that you can have endometriosis and not have either of these problems. If endometriosis is
present and it is not causing pain or problems with fertility, it does not need to be treated, though your
doctor may recommend monitoring with clinical examinations (such as a pelvic examination when you have your routine Pap smear) or occasionally ultrasound and other tests if they are thought to be appropriate.
How is the diagnosis made?
The only way that the diagnosis of endometriosis can be made is to undergo a laparoscopy and have a biopsy (tissue sample) taken. A laparoscopy is a surgical procedure, performed under a general anaesthetic where a thin telescope is placed into the umbilicus (belly button). This allows your doctor to see inside your abdomen and assess the organs of the pelvis and abdomen. A laparoscopy can magnify the tissues and even small amounts of disease can be seen. Tissue that is thought to contain endometriosis is removed at the time of the laparoscopy and sent to the pathologist to be viewed under a microscope to confirm the diagnosis.
Sometimes the diagnosis is suggested without having a laparoscopy. This may be due to the fact that your
doctor can feel tissues in your pelvis that are affected by endometriosis, can see an endometriosis cyst
affecting your ovary or other pelvic organ or very occasionally see the endometriosis if it has grown through
the vagina. Remember that the only way to be 100% certain of the diagnosis is to have a laparoscopy
Is diagnosis essential?
No. Sometimes your doctor may suggest that you have endometriosis because of your symptoms and/or
the clinical signs that they can feel on examination. The decision to have a diagnosis made by laparoscopy
should be discussed with your doctor since this involves an invasive test. You should be aware of the risks
involved with a laparoscopy before you decide to have this procedure performed. If you and your doctor
decide to treat your symptoms with medications, then you do not have to have a surgical procedure.
The decision to have a laparoscopy will depend on your clinical symptoms and your wishes for pregnancy
in the immediate future.
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What is the treatment for endometriosis?
There are three kinds of treatments for endometriosis:
1. Medical treatments (medications)
2. Surgical treatments (involving an operation)
3. Complementary treatments (physiotherapy, psychology, alternate medicine, etc)
You should discuss the differences in the treatments with your doctor before starting a treatment. There are advantages and disadvantages to all the types of treatments and you may need to have several treatments of different types before finding the right combination for you.
Medical Treatments: These can be divided into hormonal and non-hormonal treatments. Hormonal treatments include the oral contraceptive pill and progestogens (one of the two main female hormones) in a variety of forms. Progestogens can be taken as a tablet, given by an injection for three months, given continuously in a rod inserted under the skin, or released from an intrauterine system (like an IUD). These are the only two forms of hormonal therapy that can be taken long term.
There are a number of other hormonal treatments that can be used for short periods only because of their side effects if used long term. These are powerful medications and can have significant side effects.
Non-hormonal medications include pain relieving medications such as paracetamol, non-steroidal anti-inflammatories and strong pain relievers. These medications are designed to relieve the pain that can be associated with endometriosis, though they are not intended to reduce the amount of endometriosis present. They may be used as a sole treatment or in combination with other treatments.
Surgical treatments: These include laparoscopy or laparotomy. A laparotomy is where the abdomen is opened through a large incision either through a bikini line cut, or occasionally through a lengthwise cut from the umbilicus (navel or belly button) down to the pubic area.
Surgery for endometriosis is usually performed by laparoscopy, because it causes less scarring, less pain, less time in hospital, better visualises the areas where endometriosis can grow and small bleeding points can be more easily seen. Sometimes the disease is so severe that a laparotomy is required. Usually your doctor will inform you of the chances of this prior to your surgery. Very occasionally, a laparotomy is required to complete surgery started by laparoscopy or to deal with a complication that can arise during surgery. You should discuss the possible complications and the likelihood of them occurring if you decide to have surgery. Your doctor will explain specific risks for you based on your symptoms and signs and will ask you to complete a consent form for your surgery.
Complementary treatments: Using other health professionals such as physiotherapists, acupuncturists, herbalists, nutritionists, homeopaths and psychologists can be very helpful for women with endometriosis. You should discuss these treatments with your doctor before commencing them, or if you are on any of these treatments and are having surgery, then it is also important to tell your doctor as some treatments can interfere with surgery.
If your doctor asks you to see a physiotherapist, then they may think that there are muscle problems contributing to your symptoms, or that you have problems with your bladder and bowel. The physiotherapist can help you to deal with these specific problems. The physiotherapists that deal with this area are highly specialised in this area and are used to dealing with these problems.
Ask your doctor if they know a physiotherapist such as this in your local area.
A clinical psychologist is a very useful person to consult if you have chronic pain. If you are referred to the psychologist, it is not because your doctor thinks “it is all in your head’, but rather that the traditional methods of dealing with your symptoms have been of limited help.
It is very important to realise that there are two aspects to pain:
1. The stimulus (or cause) of the pain - such as endometriosis.
2. The perception (or processing) of the pain, this occurs in the brain.
Removing the endometriosis (stimulus) by surgery or trying to shrink it with medication may completely remove the symptoms. However, if the pain is still present it does not always mean that the endometriosis has returned. There can be a problem with the perception (processing) of the information leading to pain, where the endometriosis may no longer be present though the symptoms may still persist.
While there are medical and pharmacological treatments which may provide some relief, it is often only temporary, so it is useful for the individual with a chronic pain condition to learn some strategies that help them to help themselves. A Clinical Psychologist who specialises in pain management can help by teaching specific strategies that have been found to be helpful in coping with chronic pain, as well as teaching strategies to manage associated problems such as impact on relationships, stress, anxiety, depression and mood swings.
What is the best treatment for endometriosis? There is no ‘best treatment’, since treatments will work differently for individual women with endometriosis. You should be aware of the different kinds of treatments, and their possible effects and side effects or complications. A combination of treatments can be used to assist relieve the symptoms associated with endometriosis.
What can I expect from treatment? Most treatments for endometriosis will not eradicate pain. This is because even without endometriosis being present, some women will experience pain with their periods, in between periods or at other times. It should also be remembered that the presence of endometriosis is not always the cause for pain or infertility and there may be other causes present. Treatments are likely to reduce symptoms by 50-70% for most women. Some women will have no relief from any treatment. Symptom control and other investigations may then be necessary. If you have surgery for your endometriosis, there is the possibility of recurrence of approximately 35%. The time interval may be short or very long. There is no way of predicting who will respond to treatment or in whom it will return. For patients with very severe endometriosis (stage 4), the chance of recurrence is higher at about 70%, though many patients are able to have good quality of life and become pregnant following treatment.
What are the risks of treatment?
Medical treatments can be associated with side effects such as spot bleeding, break-through bleeding, bloating, nausea, weight gain and depression. Skin changes (oily or spotty skin) may occur as can elevation in blood pressure. For surgery, there are risks associated with the area being operated in, like damage to other organs such as the bladder, bowel, ureters (the tubes that lead from the kidneys to the bladder) or the large blood vessels. Damage to other organs would require repair usually by further surgery that may be done by laparoscopy or may require a laparotomy (large cut in the abdomen) to complete. There are no known complications from seeing a psychologist or a physiotherapist. There can be side effects and complications from acupuncture, herbalism and other alternate medicines. You should ask your health care professional for risks associated with a treatment or procedure prior to commencing that treatment or having a procedure.
Pain that stops you on or around your period.
Pain on or around ovulation.
Pain during or after sex.
Pain with bowel movements.
Pain when you urinate.
Pain in your pelvic region, lower back or legs.
Having trouble holding on when you have a full bladder, or having to go frequently.
Heavy bleeding or irregular bleeding.
Frequently Asked Questions
1. What causes endometriosis?
a. The answer is not clear. It is likely that there is no one cause, but a number of factors that may include genetics (i.e. inherited from either mother or father), environmental effects (chemicals, toxins, or viruses), the type of endometrium that you have and the flow of blood and the endometrium during a period.
2. Can it be cured?
a. Talking about a ‘cure’ requires knowledge of what causes the disease and ensuring that these causes do not return.
b. This is not possible currently and the aim of treatment should be to maximise fertility and improve quality of life through reduced pain symptoms.
c. Eradication of all areas of disease can only be confirmed by laparoscopy and is not essential.
d. It is best to talk about a symptom free interval when considering outcomes for endometriosis treatments.
3. How can I monitor progress?
a. Following treatment or a procedure, your doctor may advise a specific follow-up regime e.g. 6 monthly for 1-2 years and then annually or biannually.
b. This may be done by your GP when an examination of your pelvis can be done at the same time as your pap smear.
4. What if one treatment does not work?
a. If a treatment or procedure does not work or stops working then other treatments can be commenced.
b. You need to discuss with your doctor your symptoms and your plans for current or future pregnancy.
c. An individual plan will be made for your particular case.
5. If I have surgery once does this mean that I cannot have surgery again?
a. No. There is no ‘maximum’ number of surgeries, though repeat surgery may have a greater risk of complication due to scar tissue formation.
b. When considering further surgery your doctor will assess your responsiveness to your first surgery, alternatives to surgery and the risk of surgery if it is repeated.
6. Can I become pregnant if I have endometriosis?
a. Yes. If you have trouble becoming pregnant and have known or suspected endometriosis then your doctor will often suggest either conservative management (i.e. continue trying without intervention) or surgery.
b. Research suggests that removing endometriosis surgically improves the chances of becoming pregnant without any additional treatments (such as IVF).
c. No medication used for the treatment of endometriosis will help you become pregnant, and these medical treatments should not be used as they may prevent you from becoming pregnant.
d. Your doctor may suggest that you see a fertility specialist to discuss IVF or other treatments to become pregnant.
7. Does the amount of disease impact on the symptoms?
a. No. There is no connection between the amount of disease and the severity (or even presence) of symptoms.
b. This means that you can have a small amount of disease and very significant symptoms or a very large amount of disease and no symptoms.
8. Will a hysterectomy (removal of uterus) cure endometriosis?
a. No. Significant surgery such as hysterectomy may be considered in women who have no desire for children in the future and as a symptom control measure.
b. Having a hysterectomy does not guarantee reduction or eradication of pain and your doctor may try alternate surgery (such as removal of the endometriosis alone) before considering a hysterectomy.
9. What is a retroverted uterus?
A retroverted uterus occurs in about 15% of women as a normal variation because there are no bony supports to keep the uterus in place.
This means that the uterus is mobile and its position has no impact on becoming pregnant or maintaining a pregnancy.
Delivery will be just the same as for an anteverted uterus.
Reference: Alana Healthcare for Women Pty Ltd
Medical information disclaimer
Endometriosis Australia’s information about the diseases, treatments and general matters has been written and edited by Endometriosis Australia’s volunteers. Endometriosis Australia makes every effort to ensure the information provided is as up-to-date and accurate as possible however does not accept liability for misinterpreted or incorrect information. It is also not the intension of Endometriosis Australia to recommend any particular form of treatment. At all times you need to discuss the information you find on this website, or any other source, with your doctors or health team, given your unique situation and status.