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Affecting 10% of women, endometriosis may cause pain and/or troubles with fertility. Medical, surgical, physiotherapy and complementary health services are all used to improve the lives of women with this disease. Making sure you receive individualised treatment at all stages of your gynaecological life, our aim is to listen, advise and provide you with a total service in endometriosis care.

What is endometriosis?

Endometriosis is diagnosed when tissue that is similar to the endometrium (normally present in the lining of the uterus) occurs elsewhere in the pelvis or other areas of the body 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 pain and infertility (trouble becoming pregnant).

It is possible that you may 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 Alana 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.

See more in Endometriosis Australia’s Medical Webinar One – Awareness, featuring two of our doctors, Professor Jason Abbott and Dr Erin Nesbitt-Hawes.

How is the diagnosis made?

The only way that the diagnosis of endometriosis may be definitely 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 Alana 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 may 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. For further information on laparoscopy please see the Laparoscopy download available at this website.

Sometimes the diagnosis is suggested without having a laparoscopy. This may be due to the fact that your Alana doctor is able to feel tissues in your pelvis that are affected by endometriosis, sees an endometriosis cyst affecting your ovary or other pelvic organs by an ultrasound or other type of scan 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 and/or biopsy.

Is diagnosis essential?

No. Sometimes your Alana doctor may suggest that you have endometriosis because of your symptoms and/or the clinical signs that are felt on examination. The decision to have a diagnosis made by laparoscopy should be discussed with your Alana 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 Alana 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 regarding pregnancy in the immediate future.

See more in Endometriosis Australia’s Medical Webinar Two – Diagnosis, featuring two of our doctors Professor Jason Abbott and Dr Erin Nesbitt-Hawes.

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. Allied treatments (physiotherapy, psychology, alternate medicine, etc)

You should discuss the differences in the treatments with your Alana doctor before starting a treatment. There are advantages and disadvantages to all the types of treatments and you may need to have several different types of treatment before finding the right combination for you.

Medical treatments: These may be divided into hormonal and non-hormonal treatments. Hormonal treatments include the oral contraceptive pill and progestogens (one of the two main female hormones). Progestogens may 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 (such as Danazol or Zoladex) that may be used for short periods only because of their side effects if used long term. These are powerful medications and have significant potential side effects. Only in rare circumstances would your Alana doctor prescribe these medications since the effect on the endometriosis may be short lived and the side-effects may be substantial.

Non-hormonal medications include pain-relieving medications such as paracetamol, non-steroidal anti-inflammatories (such as neurofen) 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; allows better visualisation of the endometriosis and any bleeding points. Sometimes the disease is so severe that a laparotomy is required. Usually your Alana 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 may arise during surgery. You should discuss the possible complications and the likelihood of them occurring if you decide to have surgery.  Your Alana 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.

Allied treatments: Using allied health professionals such as physiotherapists, acupuncturists, herbalists and psychologists may be very helpful for women with endometriosis. You should discuss these treatments with your Alana 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 may interfere with surgery.

If your Alana doctor asks you to see a physiotherapist, they may think that there are muscle problems contributing to your symptoms, or that you have problems with your bladder and bowel. The Alana physiotherapist is able to help you to deal with these specific problems. The Alana physiotherapist is highly specialised in this area and used to dealing with these problems, and you can download our physiotherapy guide to managing pelvic pain below.

Guide to managing pelvic pain

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 may 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 drug treatments that may provide some relief, it is often only temporary, so it is useful for the woman with a chronic pain condition to learn some strategies that help them to manage their pain more effectively on a day-to-day basis. A Clinical Psychologist who specialises in pain management is able to 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 and what can I expect from treatment?

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 may be used to relieve the symptoms associated with endometriosis.

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%, although many women are able to have good quality of life and become pregnant following treatment.  Studies by the team at Alana have shown that even with very severe disease, the chances of a pregnancy are about 75% with 2/3 of these pregnancies occurring naturally and 1/3 requiring assistance such as with IVF.

What are the risks of treatment?

Medical treatments may have side effects such as spot bleeding, breakthrough 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 such as damage to other organs such as the bladder, bowel, ureters 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 may be side effects and complications from acupuncture, herbalism and other alternate medicines. You should ask your Alana practitioner for risks associated with a treatment or procedure prior to commencing that treatment or having a procedure.

See more in Endometriosis Australia’s Medical Webinar Three – Treatment, featuring two of our doctors Professor Jason Abbott and Dr Erin Nesbitt-Hawes.

Frequently Asked Questions

What causes endometriosis?
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.
Can it be cured?
Talking about a ‘cure’ requires knowledge of what causes the disease and ensuring that these causes do not return. This is not possible currently and the aim of treatment should be to maximise fertility and improve quality of life through reduced pain symptoms. Eradication of all areas of disease can only be confirmed by laparoscopy and is not essential. It is best to talk about a symptom free interval when considering outcomes for endometriosis treatments.
Will a hysterectomy (removal of uterus) cure endometriosis?
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. Having a hysterectomy does not guarantee reduction or eradication of pain and your Alana doctor will likely try alternate surgery (such as removal of the endometriosis alone) before considering a hysterectomy.
Does the amount of disease impact on the symptoms?
No. There is no connection between the amount of disease and the severity (or even presence) of symptoms. 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.
Can I become pregnant if I have endometriosis?
Yes. If you have trouble becoming pregnant and have known or suspected endometriosis then your Alana doctor will often suggest either conservative management (i.e. continue trying without intervention) or surgery. Research suggests that removing endometriosis surgically improves the chances of becoming pregnant without any additional treatments (such as IVF). 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. Your doctor may suggest that you see a fertility specialist to discuss IVF or other treatments to become pregnant.
If I have surgery once does this mean that I cannot have surgery again?
No. There is no ‘maximum’ number of surgeries, though repeat surgery may have a greater risk of complication due to scar tissue formation. When considering further surgery, your Alana doctor will assess your responsiveness to your first surgery, alternatives to surgery and the risk of surgery if it is repeated.
What if one treatment does not work?
If a treatment or procedure does not work or stops working then other treatments may be commenced. You need to discuss with your doctor your symptoms and your plans for current or future pregnancy. An individual plan will be made for your particular case.
How can I monitor progress?
Following treatment or a procedure, your Alana doctor may advise a specific follow-up regime e.g. 6 monthly for 1-2 years and then annually or biannually. This may be done by your GP when an examination of your pelvis may be done at the same time as your pap smear.
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