Endometriosis Part 1

Some of you may have seen the episode of “Insight” last week about Endometriosis. I thought it was a good time to start writing about it. This topic will be discussed in a number of parts due to the magnitude of information.

This is a huge topic not just in terms of information, but also disease burden for women. It is gaining so much attention that the Federal Government has set aside $3.5 million for research in Endometriosis.

1 in 10 women suffer from Endometriosis. The degree to which women suffer is extremely varied from painful and heavy periods that stop them from going to work 1-2 days a month to chronic, daily pelvic pain where they are unable to function on a normal daily basis. This more extreme version is a lot more complex and while endometriosis was the start of their problem, the issue is one more of pain and requires treatment from multiple areas of the health profession. We will discuss this later.

So what causes it?
We know that endometriosis is caused by the lining of the uterus that is shed at the time of your period growing outside the uterus (endometrium). This in itself also varies as to how significant it can be. The question is how does it get there?.

This is still something we are trying to work out and why it happens to some women and not others. There are multiple theories as to how it happens:
1. Retrograde menstruation- where during periods some of that blood goes through the fallopian tubes and into the pelvis. The problem with this is that it most likely happens to all women, but not every woman ends up with endometriosis.
2. Other theories include as the lining of the cells in the pelvis turn over the message that is given to them is confused and it ends up making endometrial cells instead of what they were supposed to.
3. Some of the cells from the uterus migrate through the uterus and deposit into the pelvis (transcoeloemic spread) and
4. There is a reasonable genetic component.

There are 4 stages of endometriosis:
Stage 1- Minimal: Deposits of endometrium superficially on the lining of the inside of the pelvis (peritoneum).
Stage 2- Mild: Where there are superficial implants on the ovaries as well as the lining of the pelvis
Stage 3- Moderate: Endometriomas or cysts on the ovaries- also known as chocolate cysts with possibly deposits elsewhere
Stage 4- Severe: There are nodules in the bowel and the uterus and bowel are often stuck to each other.

The stage of disease does not necessarily correlate to how bad a woman’s symptoms are because of endometriosis. Nor does it necessarily correlate with fertility. We also don’t know why some women have stage 1 disease or stage 4 or if in fact there is a progression with respect to disease. Does everyone start at stage 1 and progress to stage 4? Or is it more unpredictable?

What we do know is that the pain that women suffer is due to the endometrial cells outside the uterus also respond to the hormones in the body and also bleed when you get your period. In some women the inflammation and the bleeding from cysts on the ovaries and for others it causes distortion of the fallopian tubes and formation of bowel nodules where all the pelvic organs stick together. For some women those cells just bleed without any of the above complications and they can often be in the most pain.

The driving force behind endometriosis is oestrogen. During your menstrual cycle oestrogen levels go up and are at their lowest when a period starts. This is why gynaecologists like to try hormones, because if you can keep oestrogen at one level you won’t get a period. This is also why a hysterectomy is not always the answer. A hysterectomy is the removal of the uterus and cervix +/- the fallopian tubes. The ovaries remain. A hysterectomy may stop the heavy periods with respect to bleeding but does not stop the main cause of endometriosis which is the oestrogen your hormones produce. Removing the ovaries before menopause, causes menopause and has serious consequences for women including: osteoporosis, loss of heart protection, gall bladder problems and issues with mood and thinking. A gynaecologist will suggest hormone therapy up to the age of 50.

What are the signs and symptoms I have endometriosis?
The symptoms that a gynaecologist looks for when seeing if someone has endometriosis is:
– Heavy and painful periods
– Pain a few days before the onset of a period
– Sometimes breakthrough bleeding with brown blood
– Pain with sex
– Pain when opening bowels during periods
– Pain when voiding and/or frequency without infection
– Infertility in some women

You can have all or you may have none.

So how do I know if I actually have it?
The “gold standard” known by us medics is a biopsy of tissue at a laparoscopy. But there are some ways that a gynaecologist may predict if you have endometriosis before going to the operating theatre.
The first step is a referral and consultation with your gynaecologist. From there they will take a history from you. They should also examine you with an internal vaginal exam feeling for overactive tight muscles of the pelvic floor and any endometriosis nodules that may be felt a the top of the vaginal and bowel.

This is where things get a bit tricky. Most gynaecologists will send you for a pelvic ultrasound to look at the structures of the uterus and ovaries. But there is a real time ultrasound that may pick up deep infiltrating endometriosis. This is known as sonovaginography (SVG) or a deep endometriosis (DE) ultrasound. This ultrasound is only done in very few units in Australia and publicly in one unit in NSW with no charge.

I think this is enough information for today. Next week I will start by explaining DE ultrasound and the role it plays in the investigation and diagnosis of endometriosis.