Ashermans Online Community : FAQ

Frequently Asked Questions

A "Primer" on Asherman's Syndrome

Welcome to the Asherman's Syndrome Online Community! As the size of our community of Asherman's sufferers has grown, we have discovered that women who have recently been diagnosed with this Syndrome often have the same questions that we had when we first started our own "Asherman's Journeys". We have created this listing of "Frequently Asked Questions" ("FAQ's") in the hope that it will help provide our new members and visitors with at least a basic understanding of this Syndrome and some suggestions for the "first steps" that might be appropriate in investigating treatments for Asherman's.

What causes Asherman's Syndrome?

The short answer is, there is no single cause but rather a number of them that seem to contribute to the development of Asherman's. Asherman's appears most frequently in women who have had a "D&C" (dilation and curettage) for the removal of retained placenta after birth of a child, to clear the uterus after miscarriage of a child, or for purposes of aborting a pregnancy. Performing a D&C on a "recently pregnant" uterus often result in the development of Asherman's Syndrome, but not always. The prevalent theory is that a D&C on a recently pregnant uterus will cause Asherman's only in cases in which the D&C is "overly aggressive" which is any case in which the doctor performing the procedure scrapes the uterine walls with too much force. Because a post partum uterus is very soft and fragile, D&C's should be performed as gently and carefully as possible which unfortunately doesn’t always happen. The risk of Asherman’s also seems to be increased by the use of a sharp instrument to perform a D&C unless the D&C is performed by a doctor that specializes in the treatment of Asherman’s.
I've never had a D&C - could I still have Asherman's?

Yes. Asherman's can also be caused by other sources of "trauma" to the interior of the uterus including cesarean-section, uterine infection including certain sexually transmitted diseases and other types of uterine surgery such as myomectomy.
I still have a period each month, does that mean I don't have Asherman's?

Not necessarily. Some women with moderate to severe cases of Asherman's may experience amenorrhea, (the cessation of menstrual cycles) but others with milder cases may still have a period but will often notice their cycles are much shorter and/or lighter than they were previously. This does, however, mean your cervix is open and you could still become pregnant which is inadvisable while you still have scar tissue in your uterus. Please see FAQ #13.
How can I be sure that I actually have Asherman's Syndrome?

The best way to diagnose Asherman's Syndrome is by visualizing the interior of the uterus. This can be accomplished using a diagnostic hysteroscopy or through the performance of a hysterosalpingogram ("HSG"). A diagnostic hysteroscopy involves the dilation of the cervix and the insertion of a tiny scope that enables the doctor to see inside the uterus directly. An HSG is a more “indirect” method of diagnosis and is performed by inserting a small catheter about the width of a ballpoint pen into the cervix and then injecting radioactive dye through the catheter and up into the uterine cavity while performing an x-ray. Using this procedure, the doctor can get a very detailed picture of the interior of your uterus and can note any areas of scarring. In some cases, however, the scarring is so severe that the dye simply will not flow into the uterus at all because it is blocked with scar tissue. It is also not uncommon for a woman with Asherman's Syndrome to have a cervix that is so scarred that the catheter is not able to be inserted at all in which case a diagnostic hysteroscopy is recommended. Some doctors have suggested the use of sonohystograms (an ultrasound that is performed after sterile saline has been flushed up into the uterus similar to an HSG) but the general consensus seems to be that although this method can certainly reveal the presence of scar tissue in a general manner, it lacks the clarity and specificity provided by an HSG.
Does having a hysterosalpingogram hurt? What do I need to know about it?

Having an HSG can be quite uncomfortable, especially for those women with significant amounts of scarring present in their uterine interiors. It does seem to be less painful for those women with milder cases of Asherman's. It is advisable to take an anti-inflammatory a few hours before your procedure (such as ibuprofen) and you may also want to ask your doctor about pain medication if you have a low pain threshold. You will experience some uterine cramping and discomfort for anywhere from a few minutes to a few hours after an HSG.
I’ve had my hysterosalpingogram and have “officially” been diagnosed with Asherman’s. What questions should I be asking my doctor now?

Even once you have an official diagnosis of Asherman’s, there is still a lot of information you will need to know in order to make some informed decisions about your treatment. You should ask your doctor:
Who should I see for treatment of my Asherman's? Should I continue to see my current OB or Reproductive Endocrinologist?

There are certainly some general practice obstetricians and some reproductive endocrinologist who may be qualified to handle mild cases of Asherman's. For those with moderate to severe scarring, however, it is recommended that they see a surgeon that specializes in Asherman's Syndrome. Asherman's surgery is a VERY delicate and difficult surgery and even surgeons who have experience in other types of uterine surgery may not have the requisite skill or experience level to treat Asherman's successfully. Many of us in the group have made the mistake of being "loyal" to our original doctors who assured us they could help and in the end have actually ended-up making things worse. A poor Asherman's surgery has the terrible potential of actually making your condition worse (see question #11 for more information on this) which is why it is SO VITALLY important. The first restorative surgery is the best chance to restore the uterus and should be done by the most experienced doctor possible.
What is the "usual" treatment to repair Asherman's Syndrome?

Treatment methods do vary from doctor to doctor, but the most common course of treatment is an operative hysteroscopy using microscissors to remove the adhesions, followed by a uterine balloon which is traditionally left in-place for 7-10 days after surgery. Another well-respected method is to skip using the balloon and instead have frequent office hysteroscopies in which any tiny adhesions that reform are snipped with the microscissors in the doctor's office. Surgery is normally followed by a course of antibiotics, (especially when a uterine balloon is used which carries with it a slight chance of infection), as well as a course of estrogen followed by progesterone.
My doctor has suggested that we perform a D&C to try and repair my Asherman's but isn't that was caused this in the first place?

Unfortunately, there are still some poorly trained doctors that believe that the proper treatment for Asherman's is another D&C. We now know that this is the WORST possible treatment for Asherman's and will only worsen your condition, possibly irreparably! If a doctor suggests this to you, it is a good sign that he or she is not properly qualified to treat your condition. Please see question #11 for more information about the damage that can be caused by such overly aggressive treatment of Asherman’s.
My doctor says he wants to use a laser to remove my adhesions? Is this a good idea?

Although a few exceptionally experienced doctors have used lasers successfully, the general consensus seems to be that anything that introduces heat into the uterus like a laser should be avoided due to the potential for actually incurring new damage to the endometrial lining. Destruction of any areas of the lining can be permanent and will make it difficult if not impossible for an embryo to ever implant in the uterus.
I've been diagnosed with Asherman's Syndrome and have been told to forget about ever having a baby. Is this true?

No one can tell you that for sure as it depends on so many factors. We do know that many members of our online community have gone on to have children after surgery to repair Asherman's Syndrome but there are also many who have not. It depends on factors such as the severity of your scarring, the skill of the surgeon who performs the corrective surgery, the amount of healthy endometrium still remaining in your uterus and many other factors. The most important factor does seem to be the skill and experience level of the surgeon that performs your surgeries which is why we urge you to seek out a doctor on the main Ashermans page "A" list. Even with the best doctor - while there is hope for a child after Asherman's there are no guarantees. It is true that in some cases, there truly is no hope for a biological child after Asherman’s. This occurs when the endometrial lining that remains after the removal of all scar tissue is either extremely thin and/or is in islets instead of being continuous. This condition is most often the aftermath of a D&C or adhesion surgery that was so aggressive that the basal level of the endometrium (the level of cells that are responsible for the regrowth of the endometrium each month) has been cut away or damaged beyond repair. To date, there are no treatments that have been proven to repair such damaged basal endometrial cells but research into this area does continue. This once again is why it is so important to find a doctor with extensive Asherman’s experience. Even the most well-intentioned doctor can unintentionally and irrevocably damage your endometrium if they lack the proper skill and experience level to treat this very complicated condition.
How do I know how if I have “enough” endometrium left to carry a child?

The optimal measurement for endometrial thickness is 8mm or more at mid-cycle which is Cycle Day 12-14 in a 28-day menstrual cycle. This can most accurately be measured using an ultrasound, often an intravaginal ultrasound which uses a small wand inserted in the vaginal canal to perform the ultrasound. The exact thickness of your lining may not be that crucial. There have been pregnancies carried to term by members of this group with linings as thin as 4-5mm. In fact, many doctors feel that once your uterus is free from scar tissue, the exact measurement of your lining is not as important as your having a normal period. The other important factor is whether the endometrium is continuous or is in “patchy” islets which can hinder the ability of an embryo to implant. Islets of endometrium can sometimes be visualized during an ultrasound, but the only reliable way to tell if your endometrium is continuous is through a hysteroscopy.
I’ve been diagnosed with only MILD Asherman's Syndrome, can I get pregnant without having surgery to remove the minor adhesions I have?

The real question here isn’t "can" you, but SHOULD you. It is certainly possible for an Asherman's sufferer with an open cervix to get pregnant but it is a risky thing to do. There are numerous risks to both you and the baby should you get pregnant with significant scar tissue present in your uterus. You would be at a higher risk of miscarriage, placenta previa, placenta increta, bleeding during pregnancy and stillbirth. It is recommended that women with Asherman's NOT attempt pregnancy until they have had their scar tissue removed. This is why it is advisable to use birth control until you and your doctor are confident you are scar-free.
Do I need to have my Asherman's "repaired" if I don’t plan on having any more children? Is there a risk in leaving it untreated?

The primary reason that women have surgery to remove the scar tissue that results from Asherman's Syndrome is to prepare their uterus for possible pregnancy. If no pregnancy is planned for the future, there may be no need to undergo reparative surgery and the scar tissue can usually be left alone. This is true for all those women who do not have "cyclic pain" i.e. monthly pain and cramps that normally accompany a menstrual cycle. For women that do have such monthly pain (whether or not they have actual periods) it may be advisable to have corrective surgery, despite not having the wish for a child, due to the risk of endometriosis.
How is endometriosis linked to Asherman's Syndrome?

If there is sufficient scar tissue in the cervix to “seal” it closed, this leaves no channel for any shedding endometrium to take in leaving the uterus. This means that the only way “out” for that endometrium is to flow backwards or to be reabsorbed. If endometrium flushes backwards through the fallopian tubes and empties into the abdominal cavity it can lead to endometriosis which can cause damage to surrounding organs like the ovaries, bladder and intestines and which is reportedly very painful as well. This is why even those who don’t wish to have more children may want to have their Asherman's repaired to help reduce the risk of developing endometriosis.
What does it mean if I have had an operative hysteroscopy but my periods still have not resumed?

It is possible that you have some reformation of scarring in your cervix or uterus that is blocking your menstrual flow. The presence of any “new” scarring can be confirmed using an HSG or a sonohystogram. An additional hysteroscopy will usually remove these “fresh” adhesions without difficulty. The common school of thought is that these reformations are not, in actuality, “new” scarring but rather the regrowth of scarring that wasn’t completely removed during the first surgery. The removal of scar tissue from the interior of the uterus is a very difficult task. The surgeon must go “deep enough” to remove the base or “source” of the scarring, but not so deep as to damage the endometrium. An experienced Asherman’s surgeon will err on the side of caution and not cut too deeply into the uterus. This means that is it quite common for some minor regrowth to occur from the few adhesions that were cut at a point “above” their base level. Such regrowth is not difficult to remove and can usually be accomplished quite easily.
Is it possible to have Asherman’s Syndrome symptoms and yet not have the condition?

If you are suffering from light or absent menstrual periods following a D&C or other uterine surgery, then it is definitely possible that you have developed Asherman’s Syndrome. However, it is also possible that something else might be the source of your amenorrhea or hypomenorrhea. Oligomenorrhea (periods which occur at prolonged intervals) may also occur simultaneously with or separately from hypomenorrhea. Individually or jointly, they may indicate an endocrine disorder. For some women following a pregnancy or miscarriage, the body takes longer than we would normally expect to get back to a normal state. This is especially true in women who have a history of irregular menstrual cycles or endocrine disorders. People with these conditions are likely to have them throughout life. While hormone levels can be altered through the use of medications, these conditions are considered managed, not cured. If hormone levels do not return to a normal state following uterine surgery, especially if it was pregnancy related, then women may think they have Asherman’s when they truly do not. Some things that you might want to ask your doctor to check while he/she is also attempting to rule out Asherman’s are serum levels for prolactin, thyroid stimulating hormone (TSH), thyroxine (T4), follicle stimulating hormone (FSH), and estradiol (E2). If these levels are outside the normal range, then your amenorrhea, hypomenorrhea, or oligomenorrhea may be explained by a condition other than Asherman’s. Please be sure to discuss your concerns regarding Asherman’s with your physician so that it, along with any other condition, can be appropriately diagnosed or ruled out.

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