Research Paper
I'm posting this as public because I am trying to spread awareness of this. There's no reason for most women to be unaware of this risk.
Asherman’s Syndrome: The Unknown Danger
S. Sill
When a younger woman misses her period, she will probably immediately think she could be pregnant. An older woman might assume she’s going through the change or menopause. Even after those two possibilities are ruled out, their gynecologist would believe the problem was a hormone imbalance. Some unlucky women have to go through months, or even years, of appointments, failed treatments, second and third opinions before finally getting a proper diagnosis for what’s wrong with them: Asherman’s Syndrome. The reality is that very few doctors, and even less women, know about this syndrome. Asherman’s Syndrome (or AS) is considered uncommon, but caused by things that are fairly common to women. It is a frightening possibility that most women are never warned about.
The National Organization of Rare Disorders, Inc. classifies Asherman’s Syndrome as "an uncommon, acquired, gynecological disorder characterized by changes in the menstrual cycle" (NORD). AS is not genetic, or hereditary. It cannot be contracted by contact with a woman who has it. AS develops "by the formation of adhesions (scar tissue) in the uterus" which may then cause "the front and back walls of the uterus to stick to one another" (Asherman’s Syndrome). These intrauterine adhesions can be caused by any kind of procedure or surgery involving a pregnant or recently pregnant uterus, as well as procedures to remove fibroids (Endo-Gynaecology 1). Other causes are infection in or shock to the uterus, though an "overly aggressive" dilation and curettage (D and C) for abortion, miscarriage or post-partum complications is the most likely culprit (Asherman’s Syndrome).
Women who develop AS normally notice a "reduction in volume, or absence of the menstrual flow" (Endo-Gynaecology 1). The extent of the change in their menstrual flow depends on how much scarring there is and where it’s located in the uterus. Some women with AS have abdominal pain that seems to occur when they should be menstruating. This could mean that their body is still trying to menstruate, but the adhesions within the uterus are preventing the flow from exiting (Asherman’s Syndrome). "The build up of menstrual fluid inside the uterus causes pressure and needs to be relieved" in the form of a "haematometra" which is "like a large bruise inside the uterus" (Endo-Gynaecology 1). This blockage can also compound the problem of AS by causing endometriosis, as the flow has no where else to go except out into the woman's abdominal cavity through the fallopian tubes. This can cause more scar tissue to form on the outsides of other abdominal organs (Asherman’s Syndrome). Women who suffer from milder cases of AS, only seeing a lighter menstrual flow, may have no idea there is something wrong until they have troubles with "recurrent miscarriages and infertility" due to the scar tissue affecting their endometrium and its ability to support an embryo (Asherman’s Syndrome).
Once a woman or her doctor suspect that Asherman’s Syndrome is a possibility, there are two different diagnostic tests that are commonly used: sonohysterography (SHG) and hysterosalpingogram (HSG). These tests are fundamentally the same for the woman. The doctor inserts "a small catheter about the width of a ballpoint pen into the cervix" of the woman (Asherman’s Syndrome). In an SHG, the doctor will try to squeeze a saline solution into the woman’s uterus while performing an ultrasound at the same time or just after. The objective is to see where the uterus doesn’t fill up, which would indicate where the adhesions are. The only difference with an HSG is that the fluid is radioactive dye and the doctor uses an X-ray to "get a very detailed picture of the interior of (the) uterus and can note any areas of scarring" (Asherman’s Syndrome). It is common, in either test, that fluid won’t be able to enter at all, particularly in cases with a blocked cervix. The doctor would then suggest performing a diagnostic hysteroscopy (a version of the procedure used to treat AS) (Asherman’s Syndrome).
With either an official diagnosis or a failed SHG or HSG, the next step would be a procedure called a hysteroscopy. This may require a referral to a Reproductive Endocrinologist (RE or fertility specialist) since most gynecologists have little experience with the procedure. A diagnostic hysteroscopy is intended to get a good view of the uterus and the extent of the scarring using a tiny camera "inserted through the uterus" (Endo-Gynaecology 2). If the doctor feels comfortable and confident enough, s/he may decide to perform an operative hysteroscopy right then (Asherman’s Syndrome). "The timing of the procedure is important since it is best to do (it) when the endometrium is growing most rapidly and will repair quickly. The procedure itself is performed either under general or under local anaesthesia" (Endo-Gynaecology 2). With the camera to guide the doctor, tiny scissors (most common) are inserted and used to cut the scar tissue away. "Energy-generating instruments such as resectoscopes or lasers" are not considered a good choice for getting rid of the adhesions because they may cause "new damage to the endometrial lining" (Asherman’s Syndrome). An in-office operative hysteroscopy is the "most common course of treatment" for AS, though occasionally a laparoscopy (incisions in the abdomen) is necessary in severe cases (Asherman’s Syndrome).
Once the scar tissue is removed, most doctors will choose to place something inside the uterus to hold the walls apart (Asherman’s Syndrome). In 2003 a study was done on 297 women with AS which showed that an intrauterine balloon was used for 72% of them and the rest had an IUD (intrauterine device like a splint) inserted (Palter and Spyrou). These are normally left in for about a week to try to prevent more adhesions from forming during the healing process (Asherman’s Syndrome). In the last few years, gels have been introduced and used as an alternative way "to keep the walls from sticking together again after the surgery" (Endo-Gynaecology 2). Other doctors will opt for the woman to return for repeat hysteroscopic procedures instead, so that they can "get rid of any new adhesions" as they form (Asherman’s Syndrome). Antibiotics are prescribed after hysteroscopic procedures due to the high risk of infection. Most doctors will also put women on a hormone treatment for one or two months "to try and increase the repair of the endometrium and reduce the likelihood of scar formation" (Endo-Gynaecology 2).
Despite all of these precautionary measures, most women will need to have more than one surgery performed. The average is two procedures, but it could be as high as six, or even eight (Endo-Gynaecology 2). In Dr. Palter’s study in 2003, over a third of the women "had residual scarring" even after "aggressive surgical treatment" (Palter and Spyrou). There was a reduction in the percentage of women with absent periods (or amenorrhea) from over two-thirds before treatment to less than ten percent afterwards. Only 29% of the women were able to conceive after treatment, but 11% of those pregnancies ended in miscarriages. "The remainder of women were infertile" (Palter and Spyrou). The high number of infertile women is caused by irreparable damage to the basal level of their endometrium (the part that controls the replacement of the lining), which leaves the lining "extremely thin and/or is in islets instead of being continuous" (Asherman’s Syndrome). There is research going on currently to see if the damage could eventually be fixed, but no treatments are available yet (Asherman’s Syndrome).
As of right now, there is no better way to treat Asherman’s Syndrome than prevention. Each year doctors, who are considered experts in treating AS, speak at conferences to try to spread the word to their colleagues. Doctors need to be aware of the consequences of "overly-aggressive" D and Cs (Asherman’s Syndrome). Women also need to be informed of the risk that they take when undergoing any kind of uterine surgery. Women who have to have a post-partum D and C should be told about the benefits of taking estrogen afterwards so their lining will build up and possibly prevent adhesions in the first place. Breast-feeding mothers are especially at risk of adhesions because their estrogen levels are so low, so they should seriously consider estrogen treatments even if it means they can’t nurse anymore (Asherman’s Syndrome).
Asherman’s Syndrome is considered uncommon by most in the medical field, but in reality it’s more than likely under-diagnosed. Unless a woman has a moderate to severe case of AS, her diagnosis will probably be problems with fertility. For those women who have gone months and years without an explanation for their symptoms, the words: Asherman’s Syndrome, will bring relief at finally having an answer, anger over how long it took, and extreme sadness at the thought of possibly being infertile. There’s really no reason for it to be that way. With more knowledge for doctors and women, Asherman’s Syndrome could easily become as uncommon as it’s believed to be.