asherman’s syndrome. with over 75 percent of the endometrial lining of her womb filled with scars,...

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52 Créons des familles • FALL / AUTOMNE 2010 It’s impossible to hear any hint of bit- terness in Aimée’s voice. The 32-year- old public relations specialist sounds positively upbeat. Her cheerfulness makes it hard to believe that, for the past two years, her life has been con- sumed by a fertility struggle caused by a condition called Asherman’s Syndrome. Aimée’s desire to start a family has taken her on an emotional, and physically painful, journey across the continent, searching for answers and surgical treatments from some of North America’s top fertility specialists. She’s accumulated a lot of air miles, but the exhaustion is taking its toll. “It’s been really hard, and I have a few new gray hairs to prove it,” she says with a tinge of anguish as she talks to me on the phone. Aimée didn’t always have trouble conceiving. Young and healthy, she became pregnant naturally. In June 2008, she and her husband Steven were “over the moon with joy” to discover that they were expecting their first baby. Unfortunately, their elation ended in sorrow with a miscarriage at eleven weeks. Although common, a first-trimester miscarriage feels like a tragedy. But the “real nightmare”, as Aimée calls it, began with a minor surgery called a dilation and curettage (D&C) to remove contents of the miscarriage from her womb. After her D&C, every- thing appeared to be normal. Then, a month after surgery, the troubles start- ed. Little did she know that the D&C would unleash a series of health com- plications leading to Asherman’s Syndrome, a condition caused by intrauterine adhesions, bands of scar tissue called synechiae in the uterus. Untreated, Asherman’s can have severe consequences. Aside from scarring the uterine cavity, it can cause intense pelvic pain, cramping, endometriosis and infertility. Caught early, the situation is more hopeful. Many women who undergo treatment for mild to moderate scarring will go on to deliver a healthy baby. But Aimée knows about the severe ASHERMAN’S SYNDROME What the patient has to say by Deborah Ostrovsky Osmond

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Page 1: ASHERMAN’S SYNDROME. With over 75 percent of the endometrial lining of her womb filled with scars, she may never be able to have a much longed-for child. Asherman’s Syndrome is

52 Créons des familles • FALL /AUTOMNE 2010

It’s impossible to hear any hint of bit-terness in Aimée’s voice. The 32-year-old public relations specialist soundspositively upbeat. Her cheerfulnessmakes it hard to believe that, for thepast two years, her life has been con-sumed by a fertility struggle causedby a condition called Asherman’sSyndrome.

Aimée’s desire to start a family hastaken her on an emotional, andphysically painful, journey acrossthe continent, searching for answersand surgical treatments from someof North America’s top fertilityspecialists.

She’s accumulated a lot of air miles,but the exhaustion is taking its toll.

“It’s been really hard, and I have a fewnew gray hairs to prove it,” she sayswith a tinge of anguish as she talks tome on the phone.

Aimée didn’t always have troubleconceiving. Young and healthy, shebecame pregnant naturally. In June2008, she and her husband Stevenwere “over the moon with joy” todiscover that they were expecting theirfirst baby. Unfortunately, their elationended in sorrow with a miscarriage ateleven weeks.

Although common, a first-trimestermiscarriage feels like a tragedy. Butthe “real nightmare”, as Aimée calls it,began with a minor surgery called adilation and curettage (D&C) toremove contents of the miscarriage

from her womb. After her D&C, every-thing appeared to be normal. Then, amonth after surgery, the troubles start-ed. Little did she know that the D&Cwould unleash a series of health com-plications leading to Asherman’sSyndrome, a condition caused byintrauterine adhesions, bands of scartissue called synechiae in the uterus.

Untreated, Asherman’s can havesevere consequences. Aside fromscarring the uterine cavity, it cancause intense pelvic pain, cramping,endometriosis and infertility. Caughtearly, the situation is more hopeful.Many women who undergo treatmentfor mild to moderate scarring will goon to deliver a healthy baby.But Aimée knows about the severe

ASHERMAN’SSYNDROMEWhat the patienthas to sayby Deborah Ostrovsky Osmond

Page 2: ASHERMAN’S SYNDROME. With over 75 percent of the endometrial lining of her womb filled with scars, she may never be able to have a much longed-for child. Asherman’s Syndrome is

consequences. With over 75 percentof the endometrial lining of her wombfilled with scars, she may never beable to have a much longed-for child.

Asherman’s Syndrome is frequentlycalled a “rare” condition. Yet medicalresearchers are finding that theincidence of scarring after one D&Ccan be as high as 16%.1 Others areconcerned that the syndrome isunderdiagnosed, and may even beon the rise.

“Unless it is recognized by gynecolo-gists as a not uncommon entity,”wrote British husband and wifemedical team Kenneth and RoxanaChapman two decades ago in theJournal of the Royal Society of Medicine,“it will continue to be missed.”2

These days, everyone agrees thatearly diagnosis and treatment forAsherman’s are key to preventinginfertility. But the syndrome is stillconsidered rare enough that manywomen, including Aimée until herdiagnosis, have never heard of it.With Asherman’s so far off the radarfor doctors and patients, treatmentis often delayed, and prevention isdifficult when the prevalence ofrisk factors are underestimated.This is why Aimée is sharing herstory, urging women to learn moreabout Asherman’s symptoms as wellas speak to their doctor if theysuspect something is wrong.

The first observations aboutintrauterine adhesions (IUA)were made in Germany in 1894.Dr. Heinrich Fritsch treated a womanwhose periods suddenly stopped afterhe removed bits of retained placentafrom her womb following childbirth.Over 50 years later, Israeli gynecolo-gist Joseph G. Asherman publisheda series of groundbreaking articlesabout uterine scarring. He showed

that trauma to the lining of theuterus, the endometrium, could becaused by curettage. This procedureuses a small instrument, a curette,to scrape retained products ofconception (RPOC) from the wombfollowing a pregnancy or miscarriage.The syndrome has been named after

Dr. Asherman ever since. Hallmarksigns of Asherman’s are the suddenonset of menstrual irregularities aftersurgery. Women may notice that theflow of their period becomes lighter,or that it stops altogether (calledamenorrhea). Despite missing periods,many women continue having painfulmenstrual cramps.

Nowadays, there is a growing list ofrisk factors for scarring, includingpostpartum infection and pelvicinflammatory disease (PID).Radiation treatment of the pelvis,as well as uterine surgery for theremoval of fibroids (myomectomy)or hysteroscopy can also pose a risk.Although rarely, some women mayeven develop scarring without aspecific cause.

But the greatest number of reportedcases are from using the curette toscrape or suction the contents of arecently pregnant uterus. This iswhen the womb is most vulnerable totrauma: in the days or weeks follow-ing birth, an elective abortion, or asin Aimée’s case, after a miscarriage.

Researchers are optimistic aboutpreventative measures for reducingthe risk of adhesions after a D&C.These include performing curettagesmore gently, using ultrasound toguide the surgery, and closer moni-toring for complications after birthto reduce uterine trauma.

Aimée’s Asherman’s journey startedwith a D&C. She knew that her mis-carriage was one of nature’s sadevents, something that could beneither prevented nor cured. Shefound herself in a waiting game,nervous about the unpredictabletiming of miscarrying naturally.So she made a quick decision.

It was six o’clock at night when shewas wheeled into the operating roomat a hospital in downtown Toronto.

The “real nightmare” began with a minor surgerycalled a dilation and curettage (D&C) to remove

contents of the miscarriage from her womb.

FALL /AUTOMNE 2010 • Creating Families 53

Shelley Gibbs BSc (HON), ND

Doctor of Naturopathic Medicine

Duke Street Centre for Change and Wellness111 Duke Street East, Suite AKitchener ON, N2H 1A4Tel. 519-342-0034 Fax. [email protected]

Page 3: ASHERMAN’S SYNDROME. With over 75 percent of the endometrial lining of her womb filled with scars, she may never be able to have a much longed-for child. Asherman’s Syndrome is

“I didn’t think twice about having aD&C. So many women have them,”she recalls, adding that she had neverbeen warned about the severity of therisks of this routine procedure.Twenty minutes later, she was outof the operating room. She left thehospital the same night, prepared forthe moderate bleeding she had beentold by her doctor to expect over thenext few days.

At first, her recovery was uneventful.But a month and half later, her periodhadn’t returned. Then it finallystarted. This time, it didn’t stop.Thebleeding alternated with intensecramping. Worried, Aimée went toher family doctor, who reassured

her that menstrual irregularitiesfollowing a miscarriage are normal.After a few more months of bleedingand discomfort, Aimée wantedanswers. “I started to panic,” she recalls.On yet another sleepless Novembernight, doubled over with cramps,she turned to her husband sleepingbeside her.

“I can’t take this anymore,” she saidto Steven. “We’re going to emergency.”

A gamut of tests at the hospitalrevealed that Aimée probably had anarteriovenous malformation (AVM)in her uterus. The ob-gyn on call toldher that there was nothing they coulddo except continue monitoring the

small, tangled ball of vessels makingher bleed. Aimée went home,amazed that the only option doctorsgave her was to endure the chronichemorrhaging endangering herhealth.

So she looked for answers. InFebruary 2009, she found herselflying on an examination table in anew specialist’s office, waiting for theresults of her first sonohysterogram(SHG), a test using ultrasound whilesaline solution is injected into theuterus to detect abnormalities.

The doctor’s news shocked her.“My specialist took one look at myultrasound and told me that the

The womb is most vulnerable to trauma in the days or weeks following birth,an elective abortion, or as in Aimée’s case, after a miscarriage.

54 Créons des familles • FALL /AUTOMNE 2010

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bleeding was probably caused bycontents of the pregnancy left overfrom my miscarriage—six monthsearlier,” Aimée says.

She underwent a hysteroscopy toremove the remainder of her miscar-riage.

With a sigh of relief, Aimée thoughther troubles were finally over. Amonth later, she felt the mild crampsthat usually preceded her period.But there was no blood. So she wasprescribed medication to inducemenstruation. Then, still no bleeding.Two months later, her worries startedagain.

“I was getting bloated. I felt like I wasgetting my period, but nothing washappening,” she says, recalling thepanic she felt.

During the weeks waiting for a follow-up appointment with her specialist,she looked up her symptoms online.Her research led her to an Asherman’sSyndrome international supportgroup (www.ashermans.org) foundedby Poly Spyrou from Cyprus, who alsolives with this condition.

One by one, Aimée matched her ownsymptoms with the description ofAsherman’s online. Pain around thetime of menstruation, but no blood.Previous uterine surgery. A D&C formissed miscarriage, followed by hem-orrhaging. Surgery for retained con-tents of pregnancy. Infertility.

“I think I have this,” she said aloud,nervously scrolling through reams ofmedical information on her computerscreen.

The women she corresponded withon the site encouraged her to mention

Asherman’s to her doctor. She did.And in May—almost a year after firstbecoming pregnant—she was officiallydiagnosed with Asherman’s Syndrome.

Despite her sadness, Aimée jumpedinto action. After almost a year ofdiscomfort, she took an unpaid leavefrom work. Now her full-time job wasto take care of herself.

On the Asherman’s website, shefound out about a highly regardedspecialist in Los Angeles, California,who specializes in treating complexcases of intrauterine adhesions,including those of other Canadianwomen. Faced with a four-month waitfor surgery in Canada, she hoppedon a plane to the US, where shecould be treated almost immediately.

The US doctor’s news was not good.Her Asherman’s was severe. But shehas undergone two successful hys-teroscopy surgeries using microscis-sors to gently cut away the scars. Afterhysteroscopy, she was given treatmentwith hormone therapy to encourageher endometrial lining to grow. Asmall balloon catheter was placed inher uterus following hysteroscopy sothat the scars couldn’t grow back, orfuse the walls of her womb together.

At home in Toronto, she is followedby a fertility specialist who collabo-rates with her doctor in the US. Herperiods have returned, but her repro-ductive future is uncertain because ofthe damage from scarring.

Aimée is not alone on her journey.She’s in touch with other womenwho have Asherman’s. Their storiesmay all be unique—some have hadD&Cs after a miscarriage, and othersto remove retained placenta aftergiving birth. But they all possess one

common feature: a long, unwieldysearch for diagnosis after noticingmenstrual changes.

Is enough being done to ensure thatAsherman’s can be prevented, orcaught early enough so women whodevelop scarring can have optimaltreatment? For Aimée, this questionmight come a little late, althoughwith treatment, there is still hope forher future.

About the authorDeborah Ostrovsky Osmond is afreelance writer and editor livingin Montreal with an interest inwomen's reproductive health.

FALL /AUTOMNE 2010 • Creating Families 55

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Infertility affects many couples inCanada, with estimates of up to 15%of the reproductive-aged population.While infertility has many etiologies(causes), anatomical or structural fac-tors account for approximately 15-20%of cases. Asherman’s Syndrome, alsoknown as intrauterine adhesions (IUA),is recognized as an uncommon butcausative factor in recurrent early pre-gnancy loss and infertility.

by Sony Sierra, MD, MSc, FRCSC

ASHERMAN’SSYNDROMEThe Doctor’s Report

56 Créons des familles • FALL /AUTOMNE 2010

by Sony Sierra, MD, MSc, FRCSC

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Asherman’s Syndrome was first reportedin 1894 and the term is used to describepartial or complete obliteration of theuterine cavity by adhesions, leading tomenstrual abnormalities, infertility orrecurrent pregnancy loss. It has beenreported in about 1.5% of all womensuffering from infertility, and in up to39% of women with recurrentpregnancy loss.

What is it?The adhesions or scar tissue character-istic of Asherman’s Syndrome lead tothe loss of normal endometrial tissue(or uterine lining). The extent of thissyndrome can vary from very minimalscar tissue to complete obliteration orloss of the normal uterine cavity.

How does it happen?The major cause of IUA formationis trauma to the uterine lining. Thiscan occur as a side effect of surgery orcurettage of the uterus, for examplefrom a dilation and curettage (D&C)procedure for management of a miscar-riage or retained products after delivery.In fact, the uterus is at highest risk ofscar formation in the first four weeksafter delivery.

Asherman’s Syndrome can also resultfrom a severe pelvic infection contractedduring surgery or post-operatively. Veryrare causes of Asherman’s Syndromeinclude tuberculosis or schistosomiasis;these are unlikely to occur in NorthAmerica, however.

How would I know if I had IUA?Typical symptoms of this syndromeinclude:• Fewer, infrequent, irregular periods• Loss of periods• Cyclical pelvic pain• Infertility• Recurrent early pregnancy loss• History of sharp D&C for miscarriage

or for retained placenta after delivery

How is the diagnosis confirmed?A standard investigation of infertilityand recurrent miscarriage includesa structural assessment of the uterus.A pelvic ultrasound provides usefulinformation about the exterior structure,

size, and overall shape of the uterus.It detects the presence of fibroids in themuscle wall or on the exterior (serosal)surface of the uterus. Ultrasound is alsoan excellent way to evaluate the size ofthe ovaries and the presence of impor-tant follicles and/or cysts. Informationabout the uterine lining or endometriumrequires more specialized imaging.

The best way, or “gold standard”, ofinvestigating the endometrium is to lookdirectly at the lining with a hysteroscope

(Soures et al, 2000). This is a surgicalprocedure known as diagnostic hystero-scopy and it can usually be performed asan office procedure without medication.A physiologically balanced fluid is injec-ted into the uterus while a small scopeattached to a camera is inserted through

the cervix into the uterine cavity.This allows the surgeon to obtain adirect view of the lining and determinethe nature and extent of the scarring,or IUA.

Sonohysterography, or obtaining asonohysterogram, is also used to diagnoseIUA or Asherman’s Syndrome. Thisis an ultrasound-based procedure thatinvolves taking images of the uterinelining while saline is slowly injected intothe uterine cavity. When this is combi-

Although uncommon, Asherman’sSyndrome has been reported in up to 39%of women with recurrent pregnancy loss.

FALL /AUTOMNE 2010 • Creating Families 57

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58 Créons des familles • FALL /AUTOMNE 2010

ned with three-dimensional sonohystero-graphy, it can very accurately diagnoseIUA, as well as measure the size of theentire uterine cavity.

Is there a way to treat IUA?Operative hysteroscopy is the treatmentof choice for IUA. The technique issimilar to a diagnostic hysteroscopy.

While images are being taken, a skilledreproductive surgeon uses hysteroscopicscissors, cautery or laser to sharply cut ordissect the adhesions.

In the hands of a skilled surgeon, all ofthese techniques result in similar out-comes (Zikopoulos et al, 2004). Theanatomy of a normal uterine cavity isusually achieved after one hysteroscopicprocedure; however, this doesn’t alwaysguarantee that the lining will heal nor-mally, nor does it guarantee a pregnancyor live birth.

Once the adhesions are cut, the nextstep in treatment involves prevention offuture adhesions, or the reformation ofIUA. This is a particular risk if the adhe-sions were extensive and there is verylittle normal endometrial lining to rege-nerate and line the newly formed cavity.

Post-operative adhesion formationoccurs in almost 50% of severe cases and22% of moderate cases (Valle & Sciarra,1988). The science behind preventingthese adhesions is not clear on which isthe better method, but your doctor canchoose between hormonal therapies,mechanical methods or both in anattempt to prevent future scarring.

If hormonal therapy is used, the objectiveis to stimulate endometrial developmentand healing after adhesions are cut.There are several options for treatment,but a standard approach often involvestwice-daily doses of oral estrogens foranywhere from 2 weeks to 30 days, withor without the addition of progesteroneor a synthetic progestin during the last10-14 days of estrogen therapy.

The major cause ofintrauterine adhesionsformation is trauma tothe uterine lining. Thiscan occur as a side effectof surgery or curettage ofthe uterus.

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Mechanical methods include theinsertion of an IUD for about 30 days(Zikopoulous et al, 2004) or the inser-tion of a Foley catheter (or intrauterineballoon) for 1-2 weeks (Orhue et al,2003).

What are the success ratesafter treatment?The overall pregnancy rate after lysis(removal) of adhesions is approximately60%, with a live birth rate of 40%. Thesefigures come from a comprehensivereview of 800 women with Asherman’sSyndrome who were treated with hystero-scopic surgery (Sieglar & Valle, 1988).In women with recurrent pregnancyloss, after surgery the rates of early lossdecrease from 86% to 43% (Goldenberget al, 1995).

When presented with infertility, it isalways important to evaluate all possiblecauses, even in the case of known intra-uterine adhesions. While most womenconceive after surgery for IUA, there aresome that continue to face infertility. Inone study, almost 60% of women in agroup who did not conceive after treat-ment of IUA actually had other causesfor infertility (Roge et al, 1996).

Intrauterine adhesions can be a reasonfor infertility, especially in women whohave undergone multiple uterine sur-geries or uterine procedures in the post-partum period. Proper diagnosis andmanagement in the hands of skilledreproductive surgeons can result in thereturn of normal menstrual and repro-ductive function.

For more information, or for supportand other resources, visit:www.ashermans.org

FALL /AUTOMNE 2010 • Creating Families 59

About the author

Dr. Sierra practices Gynecologic Reproductive Endocrinology & Infertility inToronto, where she is co-founder of First Steps Fertility Inc. She graduated fromMedicine and a residency in Obstetrics & Gynecology at the University ofToronto. She then specialized in Infertility and Recurrent Miscarriage throughfurther training in a Royal College of Canada accredited fellowship programat the University of British Columbia and the University of Chicago. Aftercompletion, she was appointed Assistant Professor, Clinician Investigator in theDepartment of Obstetrics & Gynecology at the University of Toronto. She is cur-rently enrolling patients with a history of recurrent pregnancy loss and recurrentimplantation failure after IVF in a study to document the expression of genes inthe endometrial lining.