Ashermans syndrome in the news: The secret syndrome leaving women infertile

A recent article on Asherman’s syndrome (AS) appeared in the UK Daily mirror. It was about Sophie Blake, a TV presenter in the UK, who acquired Asherman’s syndrome as a result of two D&Cs to remove retained placenta after giving birth. It is unfortunate that her situation was not handled differently, as postpartum D&C has been reported to result in Asherman’s syndrome in 25% of cases (1). There are usually alternatives, and in some countries such as Israel, post partum D&C is no longer performed because of AS risks (2).

Toaff and Ballas, 1978
“Puerperal curettage….was discontinued in Israel after publication of Asherman’s observations*”.
*1948!!

Publicity about Asherman’s syndrome is important, and it always helps to have a public figure bring awareness to an overlooked condition. However, according to the article, the moral of the story is to seek early treatment when there is actually no evidence that fertility is more likely to be restored if treatment is sought early. Studies have shown that fertility outcomes are correlated with severity of adhesions (3), however there have been no studies on the effect of length of the condition on fertility. Sometimes damage is too great to be corrected and the uterus will rescar at every attempt to surgically remove adhesions and hormonally stimulate endometrial growth, even when early treatment was commenced. Other times, adhesions are not so severe and treatment after years will result in a live birth. Although treatment by an experienced AS specialist should always be sought, fertility outcome will be dependent most of all on the severity of initial injury (ie. D&C, intrauterine surgery with or without endometritis) which led to the scarring. When too many endometrial cells are removed to allow the endometrium to regenerate, this leads to recurrent adhesions and/or widespread fibrosis. In many cases even some of the underlying myometrium is removed. It is simple, without further progress in treatment strategies, there is nothing that can be done to replenish regenerative tissue that has been removed during curettage or other uterine surgery.

Early treatment does not guarantee success-just as late treatment does not guarantee failure

“Ideally corrective surgery should be performed within six months of the adhesions forming before they get too large”
This suggests that intrauterine adhesions continue to get worse over time, which is not true. Injury results in scarring anywhere in the body, and scarring is not progressive after a certain time point. Adhesions occur when scarring occurs internally and tissues are in direct contact with each other during the healing process. IUA formation is a normal physiological response to trauma-albeit trauma that is usually iatrogenic and should not have occurred in the first place. The consequences of this normal response are pathological because adhesions can lead to infertility, miscarriage and/or obstetric complications when they occur in the uterus. In actuality, IUA formation begins immediately after injury or corrective surgery and is complete by around 6-8 weeks according to Asherman’s syndrome specialists (unfortunately I am unable to find a reference for this, however studies where hysteroscopic followups are performed after D&C mention waiting 6-8 weeks at least). This is even supported in the article:

“I was devastated the scarring had come back so quickly,”

After 8 weeks, IUA do not continue to form/progress. Therefore, someone with stage I AS diagnosed 3 months after surgery will not go on to have stage IV 3 years later, because their adhesions have already fully formed by 8 weeks. There is one study which asserts that women who had early followup compared to late follow up hysteroscopy following adhesiolysis had less severe adhesions, and that early treatment would give a better outcome (4). However, early followup was 2-4 weeks after the initial surgery while late followup was 8-16 months. Thus adhesions may appear to be less ‘severe’ in the early followup group simply because they had not fully formed. The main advantage of early treatment (ie. before 6-8 weeks) is that it makes it easier for the doctor to dissect adhesions and not cause new ones inadvertently. However, in practical terms, it is highly unlikely that women will be diagnosed with AS within 6-8 weeks after a surgery (let alone treated), therefore it is usually applied as a treatment strategy after adhesiolysis instead of a uterine stent (5).

“It makes me seethe because if Asherman’s is caught early it’s totally treatable.”
“It’s treatable in the early stages, but it took two years for me to get a diagnosis.”


It is suggested that had she had surgery sooner, she would have possibly reversed the damage and regained her fertility. This is unlikely. Very severe adhesions tend to recur (3) inspite of surgery or hormone therapy. Early intervention will not make much of a difference because the extent of the initial damage is such that too many regenerative endometrial cells have been removed during the initial trauma.

It has been hypothesized (but not been proven) that the adhesive process can be progressive because adhesions limit uterine muscular activity thereby reducing perfusion of sex steroids to the endometrium which atrophy as the consequence (6). However, endometrial atrophy, which would lead to thin endometrium or fibrosis, is different to IUA. Most current classification systems only take adhesion type and extent into consideration, not fibrosis.

On the other hand, it is possible that someone with moderately severe adhesions which are treatable may develop fibrosis if treatment is not sought for years. Fibrosis would impact on fertility, not by causing IUA, but by limiting blood flow to an area of the uterus.

As one never knows whether their case is severe or not, by all means seek treatment with an AS specialist, but the best prognosis is severity.

Prevalence versus incidence“While the exact number of Asherman’s sufferers is not known, it’s estimated that 5% of D&Cs cause the condition – that’s about 3,000 new cases a year.”

The article confuses the estimated prevalence rate of Asherman’s syndrome (5%) with incidence rate after D&C. The prevalence of AS is 5%, meaning that roughly 1 in 20 women in the general population have AS. This does not however mean that the incidence rate of AS after a D&C is 5%. Incidence is the percentage of women who develop AS from a particular procedure, such as D&C. Studies have reported rates varying between 7.7 and 30% after D&C for miscarriage (7,8,9,10,11), and 25% from D&C for post partum retained placenta 2-4 weeks after delivery (2). The reason the incidence is higher than the prevalence is that not all women will have a miscarriage, and not all women who miscarry will have a missed or incomplete miscarriage or will be treated by D&C. Furthermore, there will be undiagnosed cases of AS (either because the woman does not desire more children or her infertility remains ‘unexplained’), and obviously not every woman in the population will undergo diagnosis for IUA. One should also remember that there are other causes of AS including other intrauterine surgery and genital tuberculosis (12) and these carry different incidence rates too.

It is important to report the correct incidence rate after a procedure such as D&C because this gives women a better idea of risks and helps her to make an informed decision before consenting to the procedure. There are almost always equally effective alternatives to D&C such as drugs or minimally invasive surgery like hysteroscopy which incur no or less damage.

Prevention: more information and accuracy needed

“Doctors are increasingly opting for less-invasive methods including suction or the use of tablets”

It’s unfortunate that the focus of the story was on preventing infertility through early treatment-which is misleading-rather than on promoting alternatives to D&C.
There is one sentence about prevention, and sadly it contains an inaccuracy as well as an omission. Suction D&C has never been proven to prevent AS, let alone reduce the incidence rates of AS:

Chapman and Chapman, 1990: (13)
“It is noteworthy that, of the 11 patients with isthmus stenosis, six of them were attributable to termination of pregnancy, of which all but one had been performed by suction curettage”

Dalton et al, 2006 (14)
“Intrauterine adhesions are a possible complication of office MVA (manual vacuum aspiration), even in the absence of sharp curettage, and should be considered when discussing treatment options for EPF (early pregnancy failure) with patients."

“After 262 office MVAs for first trimester pregnancy losses, we have identified 5 cases of IUAs…”


There is also no guarantee that your doctor will use only suction D&C, as many will use blunt or sharp instruments as well during the same procedure.

The mysterious ‘tablets’ mentioned allude to misoprostol, a prostaglandin E1 analogue which can evacuate the uterus after miscarriage, delivery or during termination, by causing uterine contractions. Referred to as medical management of miscarriage or retained placenta, or medical abortion depending on the situation where it is used, misoprostol is a non-invasive method which has been shown to prevent IUA compared to suction D&C in a clinical trial (7).

Here you can find out more about how misoprostol can prevent AS if you have a miscarriage. It can also prevent recurrence of AS in women who have a miscarriage after having had the condition.
REFERENCES

1. Toaff R, Ballas S (1978). "Traumatic hypomenorrhea-amenorrhea (Asherman's syndrome)". Fertil. Steril. 30 (4): 379–87.

2. Jensen, P.A. and W.B. Stromme, Amenorrhea secondary to puerperal curettage (Asherman's syndrome). Am J Obstet Gynecol, 1972. 113(2): p. 150-7.

3. Valle RF, and Sciarra JJ (1988). "Intrauterine adhesions: Hystreoscopic diagnosis, classification, treatment and reproductive outcome". . Am J Obstet 158 (6Pt1): 1459–1470.

4. Shokeir, T.A., M. Fawzy, and M. Tatongy, The nature of intrauterine adhesions following reproductive hysteroscopic surgery as determined by early and late follow-up hysteroscopy: clinical implications. Arch Gynecol Obstet, 2008. 277(5): p. 423-7.

5. Robinson JK, Colimon LM, Isaacson KB. Postoperative adhesiolysis therapy for intrauterine adhesions (Asherman's syndrome). Fertil Steril. 2008;90(2):409-14.

6. March CM. (1995). "Intrauterine adhesions". Obstet Gynecol Clin N Am 22: 98–103.

7. Tam WH, Lau WC, Cheung LP, Yuen PM, Chung TK. (2002). "Intrauterine adhesions after conservative and surgical management of spontaneous abortion". J Am Assoc Gynecol Laparosc. 9 (2): 182–185.

8. Adoni A, Palti Z, Milwidsky A, Dolberg M. (1982). "The incidence of intrauterine adhesions following spontaneous abortion". Int J Fertil. 27 (2): 117–118.

9. Golan, A., et al., Hysteroscopic findings after missed abortion. Fertil Steril, 1992. 58(3): p. 508-10.

10. Romer, T European Journal of Obstetrics & Gynecology and Reproductive Biology
Volume 57, Issue 3, December 1994, Pages 171-173

11. Friedler S, Margalioth EJ, Kafka I, Yaffe H. (1993). "Incidence of postabortion intra-uterine adhesions evaluated by hysteroscopy: a prospective study". Hum Reprod 8 (3): 442–444.

12. Kodaman PH, Arici AA. (2007). "Intra-uterine adhesions and fertility outcome: how to optimize success?". Curr Opin Obstet Gynecol 19 (3): 207–214.

13. K Chapman and R Chapman. Asherman's syndrome: a review of the literature, and a husband and wife's 20-year world-wide experience. J R Soc Med. 1990 September; 83(9): 576–580.

14. Dalton VK, Saunders NA, Harris LH, Williams JA, Lebovic DI (2006). "Intrauterine adhesions after manual vacuum aspiration for early pregnancy failure". Fertil. Steril. 85 (6): 1823.e1–3

The cycle of Asherman's syndrome needs to be broken with prevention

In my next blog I will explain why it is that current treatment (surgery and hormone therapy) can never be a cure for all women who have been diagnosed with Asherman’s syndrome (AS). However I also want to explain why my position on prevention as the best approach is unwavering. I’ve always maintained that I would continue to spread my word about prevention even if I was lucky enough to have a baby after AS treatment. This is because I realize that I would be one of the lucky minority if I did. Just because I may be fortunate enough to have a child after my diagnosis and treatment doesn’t mean I should forget about all of the others who didn’t. It’s not about how ‘hard’ you try or how ‘deserving’ you are- one has to understand that the body has its limits according to the damage that was incurred and other factors. I would realize that my case may not have necessary been as severe or my situation not as dire as others who were inflicted with this condition. It would be unfair to the women who have done all they possibly could to achieve a live birth but didn’t succeed to not acknowledge that each case is different not only in severity but also the circumstances in which it happens. As a PhD scientist (molecular microbiology) I know there are no hidden Asherman’s experts out there: all of the ones who are truly experts have peer reviewed published papers on outcomes in their patients following treatment. That is the nature of these careers. One is judged and recognized according to their publication record. And I have read those papers and know what the outcomes are. I would feel daft to go around telling other women not to worry about getting Asherman's syndrome because it can be treated when a) according to statistics from the best doctors, the majority of women will not have a live birth after AS, and b) it doesn't have to happen in the first place. I know also that personally, I could never forget what happened to me for no justifiable reason. Imagine if someone almost accidentally killed you through a preventable and routine careless act but you were saved by a treatment which has a 50% failure rate at best- would you think it was better to promote the treatment , or would you want to do something to prevent another person from possibly losing their life? If I will ever be fortunate to have a child after Asherman’ s syndrome it doesn’t mean that it is still acceptable to damage women through the systematic use of D&C when alternatives exist. I cannot forget the years of suffering, of fearing I will never have a child, the sleepless nights, the tears, the time lost waiting for treatment as I now had to race against my biological clock, the negative pregnancy tests month after month, the failed IVF, the worries that even if I were to become pregnant post AS pregnancies are high risk, none of that will ever be ‘worth it’. For me, to say something is ‘worth it’, it has to be something challenging that I chose for myself, not what someone (ie a treating Dr) did to me. For example, my PhD- those were some of the most difficult and challenging years of my life, performing experiments until late at night and on weekends, reading hundreds of papers, spending months writing my thesis. But I wanted to do, and it was worth it! Without all that hard work I wouldn't have achieved it. On the other hand, it should not be a struggle to have a child when nothing is wrong with you in the first place. Isn't there enough infertility and heartache in the world without doctors causing Asherman's syndrome?

As women we are expected to be martyrs and put up with all kinds of assaults on our bodies without complaining. It’s supposed to be the very essence of being a caring, nurturing Madonna, to put ourselves last. I prefer to be proactive and warn women about the dangers of D&C, and let doctors know it is not OK to perform D&Cs at the drop of a hat. It’s not acceptable to pretend there are no alternatives and to keep silent when prolife activists prevent drug companies from seeking FDA approval for drugs which can prevent fertility loss and even mortality because they also happen to be used for abortion.

You see, it’s not just about me. Of course I’m angry that it happened to me, especially given the particular circumstances- I was 39 and it was my first pregnancy that ended in miscarriage. Given my age I was extremely concerned about future fertility. I had asked about the risks of D&C and in particular about AS only to be told it was rare, I had asked for alternatives like misoprostol only to be told it was ineffective and refused. I had put up a brave stand to avoid D&C by waiting to miscarry myself (which I did) and after all of that I was told that I had RPOC and had to have a D&C or risked getting AS from an infection (balogna!). The pathology report showed that I only had a blood clot and some tiny fragments and no infection. But it's not that I am a disgruntled, childless older woman: even if I were to have a child, it’s the principle that I find objectionable- that women are continuing to go through this needless suffering because doctors will not give up an archaic surgery even when other safer and cheaper medical options have been developed.

Once again, to be clear, I encourage all women who have been diagnosed with Asherman’s syndrome: please seek help from an expert for treatment if you want to have a chance of having a child. I won’t ever regret having treatment even if I don’t succeed in having a child because I know without it there would be no possibility of it. I gave myself the best odds that I could in a situation which never should have happened to me in the first place. But just because it happened to me it doesn’t mean it should continue happening to others! There is nothing I gain out of pain and suffering of other women. It makes me somewhat angry that other women who have had it before me have done nothing to prevent it from happening to me and others. It makes me somewhat resentful that the information I was after about D&C risks and alternatives for miscarriage management were not readily available to me at the time that I needed it. And I refuse to continue that cycle which is why I am doing everything possible to warn and educate women about the big coverup about Asherman’s syndrome and D&C risks and the existence of cheaper and safer alternatives. Not to mention the exaggeration of treatment success to patients as an excuse to hinder prevention. Of course, anything that promotes further dependence on doctors is encouraged and supported by the medical community while prevention is ignored. It’s time to break the cycle-now.

Some women speak of the spiritual journey AS has given them in a way where they almost sound thankful that it happened to them! All I can say it that I don' t understand people who are thankful for unnecessary damage to be inflicted upon themselves. Only someone who didn’t feel they were worthy or seriously deluded would think it was a blessing in disguise. Asherman’s syndrome was never ‘meant to be’. It only happens because many doctors are unwilling to offer alternatives to D&Cs and nothing is being done about it.

In my ‘journey’ I have learned a lot from having Asherman’s syndrome. I have learned that there is an urgent need for women to speak out against the routine use of D&C for miscarriage. I have learned that women should at the very least be given the right to choose which treatment option they prefer. I have learned that women must pressure doctors and the government to approve of all drugs which can help to safely evacuate the uterus and that these should be the first line of therapy for miscarriage and other indications instead of D&C. I have learned that not all doctors act in the best interest of their patients so patient activism is required for change.