Asherman’s Syndrome

Asherman’s Syndrome, or AS, is not very nice if you want to have a family. It is a condition where adhesions form between the interior walls of the uterus, which lead to infertility that can be permanent.

Asherman’s Syndrome is almost entirely caused by doctors. You may remember a British TV series a few years ago called Cold Feet, in which one of the main characters, Rachel, had what they called “partial Asherman’s Syndrome” after an abortion, and subsequently had difficulty conceiving. I think at one point she was told she couldn’t have children, but got pregnant as soon as they started the adoption process (always happens on TV, that) and delivered a healthy baby 7 or so months later. The premature delivery was caused by a placental abruption and subsequent emergency C-section, which is one of the complications of an AS pregnancy.

AS is decidedly more common than doctors admit, and far more common than it should be. The figures vary according to which paper you read, but here I will quote the figures used on the Asherman’s Syndrome website (www.ashermans.org).

The risk of developing AS from a D&C (dilatation and curettage) performed 2-4 weeks after delivery is 25%. D&Cs also lead to AS in 30.9% of procedures for missed miscarriages and 6.4% of procedures for incomplete miscarriages. The risk of developing AS increases the more D&Cs you have. Most hospitals now use suction curettage to evacuate the “retained products of conception”. There have also been studies looking at the incidence of AS when suction curettage was compared to blunt curettage. Suction curettage caused more endometrial injury than blunt curettage, which contradicts the thought that this is a safer way. Whether you call it a D&C, or an ERPOC (evacuation of retained products of conception), it’s pretty much the same procedure. It’s also (though you may not want to think of this if you have just had a miscarriage) the same procedure they do for an abortion.

So why does it happen? There are two layers of the endometrium; the functional layer and the basal layer. The functional layer is the surface layer, which is shed during a period. The basal layer is deeper, partially embedded within the myometrium (uterine muscle), and is constant, and causes the regrowth of the functional layer each month. If the basal layer is damaged, irreversible damage can occur, i.e. AS. So if a D&C is overly aggressive (i.e. in my case) or if the placenta is too deeply attached, for example, the basal layer can be damaged and cause AS. D&C’s are done blind, so the surgeon can’t see what they’re doing, which doesn’t help.

AS can also be caused by uterine infections, and by endometrial ablation or myomectomy. It can also occur after a c-section.

The symptoms of AS are basically: light or no periods, especially after gynae surgery. Some women experience very severe cramps when their period is due. It is though that this is caused by the blood being unable to escape the uterus, so the uterus contracts harder in order to force it out. Despite what some gynaecologists say, it is very possible to have some sort of period and to have AS. The symptoms may also include recurrent miscarriage and infertility.

Getting AS diagnosed is a struggle. For some reason (if anyone could shed light on why this is, I’d be grateful!) gynaecologists often don’t mention it to you when they get you to sign the consent form for a D&C. I think this is appalling, considering not only the fact that it’s actually not that uncommon, but the fact that it has major consequences on a woman’s fertility. Not only that but you are faced with GPs not believing you, and saying that AS “doesn’t happen”. It’s often missed on ultrasounds, so the only way to diagnose it is through a HSG or similar, or at hysteroscopy.

AS is treatable. The earlier you treat it the better, so if you are worried, you have to push for investigation and referral. During hysteroscopy, the adhesions can be separated. It is ESSENTIAL that someone who knows what they’re doing does this, as it’s very easy to make the adhesions worse. Then, to try and prevent the adhesions sticking back together a coil may be used, or a balloon catheter, or a stent of some sort. After surgery, hormonal therapy is often used to try and encourage regrowth of the endometrium. Under no circumstances should a further D&C be suggested to treat the adhesions; they will only get worse.

Despite everyone’s best efforts, often the adhesions reform after the surgery, so repeated surgeries may be needed to clear the uterus.

Even if the adhesions are cleared there is no guarantee that future pregnancy will be possible. The chances of conceiving, and delivering a healthy baby are greater if the AS is mild. If you do manage to get pregnant, you are at higher risk of miscarriage (oh great, just what you want after this!), placenta accreta (9%, where the placenta grows into the wall of the uterus, which may lead to haemorrhage and hysterectomy if it cannot be removed), placenta increta (more firmly and deeply into the uterine wall),  placenta percreta (all the way through the wall of the uterus and sometimes into other organs. Very scary.) placenta praevia, placental abruption, incompetent cervix, and IUGR (intra-uterine growth restriction). Not pleasant, huh? The risks increase with the severity of the AS.

So there must be some hope, huh? The reality is that yes, there is hope. Plenty of AS women have had babies. In all cases that I know of, the pregnancy has been a struggle, but it is certainly possible to have a healthy baby at the end of it all. For me, I just hope that that is possible, and also that the gynae and GP community start to admit that it exists, that it happens, and start to make women aware of the risks.