Asherman’s Syndrome – could it be why you’re struggling to have a baby?

What is Asherman’s Syndrome?

Basically, Asherman’s syndrome is scarring (adhesions) of the uterus. This scarring causes lighter periods or no periods at all and, in almost all women who are affected, infertility.

What causes Asherman’s Syndrome?

It most often develops after a common minor operation called a D&C (dilation and curettage) in which the lining of the womb is gently scraped with a spoon-like instrument called a curette.

There are a variety of reasons why you might have a D&C, but it’s often done following a missed miscarriage – when you miscarry but the embryo stays inside your body. In this case it’s called an ERPC (evacuation of retained products of conception). You may also have a D&C if you have a retained placenta after birth or in the course of a termination.

Asherman’s can also develop after a caesarean section or a myomectomy (an operation to remove uterine fibroids) or a pelvic infection, such as chlamydia.

How many women are affected? Why don't we hear about it?

Add together the number of women who have ever had any of the procedures outlined above, or who have had a pelvic infection, and you begin to see how many of us could potentially be affected.

Adrian Lower is a consultant gynaecologist at Princess Grace Hospital in London and one of the few specialists in Asherman’s in the UK. He estimates that around 60,000-100,000 D&Cs are carried out each year in the UK. He believes that thousands of UK women develop Asherman’s as a result and that many go undiagnosed.

“Asherman’s has not reached the consciousness of many people,” Adrian says. “Even the professionals seem hugely unaware.”

One reason why Asherman’s has stayed below the radar as far as the medical profession is concerned, according to Adrian, is that they fail to recognise the signs of the condition or they don’t look for it. “I see more of the condition because I specialise in it, but also because I look for it. I had a patient recently who had had an operation to remove fibroids. Her periods came back but they were lighter than before so I performed a hysteroscopy (where the inside of the uterus is inspected with a small telescope). There were quite extensive adhesions as a result of the operation,” he says.

“Many doctors wouldn’t have bothered to look,” Adrian continues, “partly because her husband had had a vasectomy so there was a serious male factor there. But it’s important to investigate both sides thoroughly and to be aware of the possibility of Asherman’s. About 5% to 10% of women presenting at fertility clinics have something wrong with the lining of their uterus.”

One of the main reasons us lay people aren’t generally aware of Asherman’s is that we aren’t told about it. Health professionals, even if they are aware of the risk of Asherman’s developing after certain surgical procedures, don’t usually mention it because the risk is only perceived to be about 1%.

However, as gynaecologist Adrian points out, “That figure is for pure Asherman’s, where there is a complete absence of periods. The number of women who have clinically significant adhesions and have lighter periods is much higher. As a guestimate I would say it’s about 5%.”

The general assumption among medical professionals that Asherman’s only affects about 1% of women following a D&C or ERPC also explains why you won’t see Asherman’s mentioned on the consent form you’re required to sign before these procedures.

“Doctors generally take the view that, if a risk is 1% or less, then it’s not necessary to tell patients when taking consent,” explains Adrian. “Because the incidence quoted for Asherman’s is generally 1%, doctors don’t bring it to your attention. But if the risk of adhesions is actually higher, perhaps we ought to be drawing women’s attention to it.”

Why do you need to know about Asherman’s Syndrome?

One of the reasons we need to know about Asherman’s is that it can have serious consequences for our fertility.

In rare cases, the scarring can be so extensive that, not only are women unable to conceive naturally, they can’t have fertility treatments, such as IVF or IUI, because the lining of their uterus is too damaged. The options then would be surrogacy or adoption.

Getting diagnosed with Asherman’s Syndrome

Rebecca McAra, from Northamptonshire, had an ERPC following a missed miscarriage in 2005. This was followed by another missed miscarriage and ERPC several months later. “There was nothing on the consent forms about Asherman’s,” Rebecca she says.

Following her miscarriages, Rebecca was referred to a recurrent miscarriage clinic where her consultant performed a hysteroscopy, as part of his investigations, and diagnosed Asherman’s. “I was quite relieved that they had found something to be honest. But at the same time I felt sad that I hadn’t had the knowledge about Asherman’s that I needed to make an informed choice,” explains Rebecca.

Can Asherman’s Syndrome be treated?

There are only a few doctors in the UK who are skilled and experienced at treating Asherman’s. The scarring needs to be removed using a tiny pair of scissors, called microscissors, rather than using a laser, which could cause heat damage and further scarring. And a hysteroscopy must be carried out using very fine instruments rather than standard-sized ones.

After two rounds of treatment, Rebecca fell pregnant only to miscarry for a third time. Then a failed round of intrauterine insemination (IUI) left her ready to throw in the towel. “It was awful,” says Rebecca. “Everyone was popping out children around us while we were just in limbo. You want to share in your friends’ joy but you just can’t.”

Finally, Rebecca sought a second opinion from Geoffrey Trew, a consultant gynaecologist and Asherman’s specialist, who performed further surgery to remove remaining scar tissue. Shortly after, Rebecca and her husband decided to try IVF. Rebecca fell pregnant and their son was born in July 2009.

Rebecca has since had another baby and is expecting their third in eight weeks. Both were conceived naturally.

“I’m grateful every day,” Rebecca says. “The good news is that, if you do have a pregnancy following Asherman’s, the hope is that your body is then back to normal,” she says.

What can be done to help women avoid or get treatment for Asherman’s?

The answer is not as simple as stopping D&Cs and other surgical procedures on the uterus. These are often carried out to avoid other risks, including the risk of infection, which can itself lead to Asherman’s.

First of all, we and our doctors need to be more aware of the signs of Asherman’s. These include:

• Menstrual changes – lighter periods than usual or none at all
• Pain or cramping around the time of your period but little or no blood
• Endometriosis, caused by a backflow of blood from the uterus
• Unexplained infertility
• Recurrent miscarriage

We also need to know that Asherman’s is often fixable – provided you receive the correct treatment and it is carried out by a specialist in Asherman’s. See your GP if you have any of the symptoms above and you have had:

• A retained placenta
• An ERPC
• A D&C
• An operation to remove fibroids
• A termination
• A pelvic infection

You should be referred for something called a hysterosalpingogram (HSG) initially. This involves flushing dye through your uterus and fallopian tubes to see if there are any blockages and it’s the safest way to detect adhesions. If adhesions are found, you will need a hysteroscopy carried out by a specialist in Asherman’s using the correct equipment – the International Asherman’s Association can put you in touch with someone.

But, more than anything else, women need to be made aware of the risk of Asherman’s by health journalists (like me) and by our health professionals. We may not currently be able to prevent it, but at least we can have the chance to make informed choices and be aware of the symptoms and treatment.

• What is secondary infertility?
• What is IVF?
• "It's hard to conceive" - your stories about trying for a baby