First hand stories

Two women who struggled to get pregnant discovered they were suffering from a condition their GPs had never heard of.

“The hardest part for me was the point when nobody believed there was anything wrong with me,” said Liz Medd, 37, a radiographer, from Sunderland.

“I’d seen every GP in the surgery; I’d seen the specialist at the local hospital. I felt like I’d gone down every avenue.

“In my medical notes it states how many times I told my GP I thought I had Asherman’s syndrome, and after every time they wrote ‘long chat, patient reassured’.

“The issue is that it isn’t a condition doctors come across very often. It’s very low down on the list of things that could be stopping a woman having periods.”

Asherman’s Syndrome is the name given to scar tissue in the uterus (sometimes called uterus adhesions), which can prevent women getting pregnant or make them suffer recurrent miscarriages.

The most common cause of Asherman’s Syndrome is injury to the uterus sustained during surgery, such as dilatation and curettage (D&C) following a miscarriage or birth.

It can also be caused by injury during an abortion, caesarean section or from an infection of the uterus called Endometritis.

Dr George Ndkwe, medical director of the Zita West fertility clinic, explained to HuffPost UK Parents how uterus scarring can cause problems for women who want to have a baby.

“Inside the uterus is like a pocket, with a front and back wall flat against each other,” he explained. “This pocket is lined with tissue called the endometrium.

“During menstruation this endometrium is shed and women bleed. When a woman becomes pregnant the embryo implants in this endometrium the lining.

“An injury or infection of the endometrium may damage the lining and cause adhesions and scar tissue between the inner walls of the uterus.

“This scarring can be mild in thin bands of scar tissue or it can be more severe and form very thick bands making it difficult for an embryo to implant. In very severe cases an obstruction of the uterus can occur.”

Medd developed Asherman’s syndrome after she underwent surgery following a miscarriage.

“I discovered I had miscarried at the 12 week scan,” she said. “The baby had probably died at around eight weeks.

“I was told I could wait it out and see if I would miscarry naturally, but I didn’t go for that because I was already a few weeks down the line of losing the baby and my body hadn’t clicked.

“Instead I went for medical management of the miscarriage, but two weeks later a pregnancy test showed I was still pregnant, which meant that although I had miscarried there was some placental tissue and possibly some fetal tissue left.

“So the doctor said they had to operate to remove the ‘retained products of conception’.

“I had what they call an ‘evacuation of retained products of conception’. They opened my cervix and vacuumed what was left in the womb.

“So I had that and I was discharged and told my periods should come back in four to six weeks.

“But my periods didn’t come back.”

Lack of periods following a surgical procedure involving the uterus is a common symptom of Asherman’s.

“One of the tell-tale signs is if somebody who has a regular cycle, has an operation in the uterus and all of a sudden they don’t have any periods or their periods become infrequent,” said Ndkwe.

But not everyone with Asherman’s will experience a change in their menstrual cycle.

“A lot of women who have Asherman’s syndrome have no real problems at all,” said Ndkwe.

“It only becomes a problem if it causes them to struggle to conceive or recurrent miscarriages.”

 

Another woman who struggled to concieve because of uterus adhesions is 29-year-old Amanda McConnell, an assistant engineer from Glasgow.

Her problems began after the birth of her son Euan in August 2012.

“I had a great pregnancy, no problems at all,” said McConnell.

“But I needed to have an emergency caesarean section and there were a few complications, which meant I lost a lot of blood. So two weeks after Euan was born I was back in hospital and I had to have a D&C.

“After that my periods didn’t return. The doctors kept saying, ‘it’s fine, your body’s just taking time to get back to normal.’

“Euan was about 6 months old when I was on the internet searching, as you do, and I eventually stumbled across the International Asherman’s Association.

“I read all the descriptions and I ticked all the boxes. I went back to my GP and told her about Asherman’s. She hadn’t heard of it either, but she agreed to refer me to a gynecologist, who finally diagnosed me about eight months after I’d given birth.”

Medd also struggled to get a diagnosis.

“Five months after I’d had the surgical management I was referred to a gynaecologist,” she said.

“It was getting close to what would have been my baby’s due date and I still hadn’t got a diagnosis.

“It was a very difficult time emotionally. I felt a bit like I was still miscarrying because I couldn’t even have a period, so I couldn’t try for another baby.

“The gynaecologist sent me for an ultrasound scan which they said showed I had a bit of a thin womb lining, but didn’t show any abnormalities.

“And then I continued to go back and forth to my GP, who tried different things to restart my periods, such as putting me on a contraceptive pill and giving me progesterone, but nothing worked.

“I was beginning to feel like I was being fobbed off, so 14 months after my medical management of a miscarriage I asked to be referred to a fertility specialist.

“The specialist looked at my hysterology and told me that during the surgery to remove the retained products of conception they’d actually gone too deep and they’d managed not only to remove some of my endometrium, but they’d also removed some of the muscle beneath it.

“It was there in my notes, but until that point nobody had picked this up.

“It was then the specialist told me he thought I had Asherman’s.”

The reason many GPs, like Medd and McConnell’s, haven’t come across Asherman’s is because it is quite a rare condition.

“It’s not very common,” says Dr Anabel Salazar from IVI fertility clinic.

“It affects less than 5% of people who come to infertility clinics, which means among the general population it is even less common.”

Asherman’s is diagnosed through a procedure known as a hysteroscopy, in which a small tube with a telescope or a camera at the end (a hysteroscope) is inserted through the cervix into the womb.

For both McConnell and Medd a hysteroscopy confirmed they had Asherman’s, and in Medd’s case it was very severe.

“When the fertility doctor put the camera into my womb he actually found that I had quite a dense wall of adhesions,”she said.

“He explained to me that I had scarring about 2cm into my womb.

“The endometrium is what usually stops the walls of your womb from sticking together and because mine was so damaged the two walls of my womb were stuck together from about 2cm in, so when he put the camera in it looked like there was a wall blocking my womb.”

Getting a diagnosis came as a relief to both women, as they finally knew what was causing their problems, but it came with the knowledge that without treatment it was highly unlikely they’d be able to get pregnant.

“I felt lucky because I had Euan, but I’d always wanted more than one child, so it was quite consuming,” said McConnell.

“I tried to stay positive, but it’s difficult when you think there’s a chance you might never be pregnant again.”

As well as being used to diagnose Asherman’s syndrome, hysteroscopys are also the most common method used to treat the scarring.

The hysteroscope is inserted into the uterus along with microscissors to remove the adhesions.

Following the operation the patient will be given a course of hormone treatment and fitted with a uterine balloon or a coil (like the ones used for contraception) to keep the two walls of the uterus apart while they heal and prevent new adhesions forming.

In many cases women have to undergo the operation twice before all their adhesions are removed.

Hysteroscopy for Asherman’s is a difficult operation that should only be carried out by a surgeon who specialisies in the procedure, as there is a risk of making the scarring worse.

If successful the operation can restore fertility, but sadly this is not always the case.

“If there were mild to moderate adhesions usually, with surgery, 70 to 80% of women will have a return to normal menstrual function and the chance of having a successful pregnancy,” explained Ndkwe.

“But if there are severe adhesions, with extensive destruction of the uterus lining , then the chance of a successful pregnancy will only be between 20 to 40% after treatment.”

According to Dr Salazar a new treatment option could be on the horizon.

“Recently there have been trials of techniques involving stem cell treatment,” she said.

“It seems that bone marrow stem cells can reach the damage in the endometrium and try to help in the restoration – but this is something that is still in the experimental stage.”

McConnell conceived her second child just 10 months after surgery, and now has a nine-month-old daughter called Eilidh.

“There are risks with post Ashermans pregnancies,” said McConnell “The most common is placenta accreta [where your placenta grows in the lining of your womb and into or through the womb muscle]. I had this with my daughter.

“It resulted in a large blood loss but it was easily managed as the doctors were prepared for it, and other than that I had another healthy pregnancy and gave birth to my daughter in April 2015.

“I’m very grateful to be where I am today, that’s for sure.”

Medd had to have a second operation because of the extent of her scarring, and her doctors were concerned she may have a further problem – it looked like her fallopian tubes might be blocked.

But at a follow up appointment with her NHS doctor she was able to tell the medical team some very good news.

“I had a test to see if my fallopian tubes were blocked, and when I went to see the doctor to discuss the results of that test, I was actually pregnant by that point,” she said.

“There are some risks to pregnancy after Asherman’s and I bled in the first two weeks of this pregnancy,” adds Medd.

“But the medical teams were very good and they sent me along to the early pregnancy unit, and although it was a stressful time because I was very worried I would have another miscarriage, they’ve been monitoring me very closely and now I’m eight months pregnant, with a baby girl.

“She’s due in February. Potentially a leap day baby. We’ll see, she’ll come when she wants to come.”

Both Medd and McConnell found an invaluable support network through the International Asherman’s Association, which as well as being a source of information on the condition also runs support groups on Facebook and Yahoo.

“Having ladies who you can talk to who have been there, is a major help,” said Medd.

“It’s great to be able to talk to women at every stage of the process: From those who just suspect they have Asherman’s but haven’t been diagnosed yet, to those who have had multiple surgeries.

“They are very supportive and everybody’s willing to offer advice.”

McConnell adds: “The online groups are an absolute lifesaver, because it can feel quite lonely, especially as most people have never heard of Asherman’s, – none of my friends or family had ever heard of it.

“And when the GP hadn’t heard of it that made me very anxious, so having people to talk about it, who knew what I was going through from start to finish, really helped to keep me positive. I can’t thank the girls enough for giving me hope.”

 

Letter for doctor and his reply

Unfortunately all the specialists I see have different suggestions and theories and I am at a loss as to what to think and do. I have a 4 year old daughter who was conceived naturally and was born (in Feb 2010) at 40 weeks in water after a 3 hour labour and an uncomplicated pregnancy. Since June 2011 I have had 6 miscarriages. With regards to getting pregnant this has always been natural and straight forward; however the difficulties lie with maintaining the pregnancy. In brief: June 2011 – Miscarriage 1 – 6.5 weeks (this was a missed miscarriage and discovered at a 12 week scan and required an ERPC.) Jan 2012 – Miscarriage 2 – 6.5 weeks (missed miscarriage and discovered at 12 weeks although I had a 6 week scan where everything was normal. I had an ERPC.) March 2012 – Miscarriage 3 – 5.5 weeks – I bled naturally. Jan 2013 – Miscarriage 4 – 6.5 weeks (discovered at 8 weeks, I had an ERPC. In this miscarriage I was taking cyclogest 400 x1 per day, baby aspirin, prednisolone 25mg a day). PoC was done and it was 46XY June 2013 – I discovered I had Asherman’s Syndrome, I had a hysteroscopy, during the procedure my womb was perforated. Oct 2013 – I had another hysteroscopy as the Asherman’s hadnt been cleared up and a coil was put in for 2 months. April 2014 – Miscarriage 5 – 6.3 weeks (discovered at 8 weeks – ERPC). During this pregnancy I took no medication. PoC was done – 46XX June 2014 – Asherman’s returned so another hysteroscopy and a coil for 2 months. Dec 2014 – Miscarriage 6 – 9 weeks. (In this pregnancy I took: baby aspirin daily metformim – I have polycystic ovaries cyclogest 400 3x per day gestone 100mg 1xper day dexamethasone 1mg per day claxane 20 2x per day. ERPC carried out – 45X – Turner Syndrome.) Some results: In my most recent monitoring cycle the month before I was last pregnant: Day 4 – FSH 5.5 and LH 5.5 Day 25 LH 31 (my cycles are around 32 days) AMH from June 2013 – 69.5 I have had thyroid tested, blood clotting test, thrombo elastogram, NK cells tests – all of which have been normal. With all that in mind I have a few questions: 1) Do you think low progesterone could account for the miscarriages (apart from miscarriage no 6)? 2) Do you think the Asherman’s could account for the miscarriages (apart from miscarriage no 6)? 3) It has recently been suggested to me that the reason I get Asherman’s so easily could account for miscarriages so have been advised to have a PAI1 test – do you think this could be a possible explanation? 4) I turn 40 next month so with that in mind would you advise IVF with embryo screening? 5) My gut feeling is that the treatment I was taking in my 6th pregnancy was possibly working as I got to 9 weeks and miscarried for chromosome reasons so would you recommend taking the same treatment but to also do IVF with embryo screening? Sorry for such a long email and for so many questions and thank you so much for the time you have taken to read this and for your patience. CS

Reply

I think it is most likely the whole of your problem is most likely to be due to adhesions in your uterine cavity. These adhesions (so-called Asherman’s syndrome) are really quite common and most frequently occur after a miscarriage treated by a curettage to remove bits of the conceptus or membranes, or after delivery when the obstetrician has to do difficult manoeuvres to remove the placenta from the uterine cavity. Such adhesions are also much more likely if there has been some infection associated with the pregnancy, particularly after a miscarriage and very occasionally after a birth or a Caesarean section. Sometimes such infection is completely silent and does not cause symptoms. There are a number of other causes including some tropical infections, tuberculosis, malformation of the womb, or some operations to remove fibroids or a uterine perforation. But the commonest cause is following miscarriage.

Though very distressing, I doubt if the Turner syndrome pregnancy is very meaningful – this is tricky to decide but Turner syndrome is such an extremely common cause of miscarriage and it does not cause recurrent problems except in rather rare cases. I am willing to bet that Asherman’s is still quite likely to be your problem and I would suggest, that if you haven’t had one, then an hysterosalpingogram is the best investigation. It is a simple, very safe, cost effective, sensitive, and a relatively uninvasive procedure. Sometimes you will be able to tell if you are likely to have Ashermans because your periods may have changed. Classically, though not always, people with uterine adhesions have reduced menstrual flow. Less commonly they may have more colicky pains during menstruation. I should add that, often, successful treatment of Asherman’s tends to be quite specialised.

Of course, I hope your Asherman’s has indeed gone as you suggest but I would be a bit dubious. You have been offered all kinds of fancy treatments, aspirin, prednisolone, NK cells etc. To be honest I think all this is most likely to be completely irrelevant. I am not too sure what you mean by the PAl1 test you mention – I am unaware of this but would be happy if you could let me know what you have been told. There is such a test for some allergic reactions but I can’t believe that’s likely in your case. There is also a gene called Pal1 but I have no knowledge of any association with infertility. Let me know if you have information.

But frankly, I haven’t got good news. I think at the age of 40 with recurrent Asherman’s the prognosis is not good and I would hesitate to suggest going through many more complex and expensive treatments – seeing as you have a daughter whom I am sure you treasure. Of course, if you do have the HSG, I would be very happy to review scanned copies of these x-rays to try to give some assessment of the likelihood of successful treatment.

My apologies if this is depressing but I think realism is important if you are to come through all this extremely unpleasant and worrying experience unscathed.

Just a thought

I had a hysteroscopy last week and minor scar tissue/ adhesions were reported. I saw the video and they looked like white fluffy clouds. I have already had a chemical pregnancy after IVF and 1 failed FET & 2 years unexplained infertility. I have no history of prior pregnancy/ miscarriage/ surgery/ other trauma to the uterus prior to this hysteroscopy. The only risk factor I have was a prior chlamydia infection. The doctor said he cleared everything but that he does not think it was such a significant cause for my unexplained infertility”/ failed embryo transfers. He has always informed me that I have had a perfect triple lining during ultrasound and my period are largely regular and medium flow. I am currently taking antibiotics post hysteroscopy for 1 week but no other treatment. I have been advised that I can continue with embryo transfer after 2 cycles as I have more frozen embryos. I am feeling very confused. How can I know if the scar tissue will recur or even if it is completely removed? Even before the hysteroscopy nothing was visible on ultrasound/ HSG. What further treatments/ investigations are indicated in such a case? Do you think it is the likely cause of my infertility/ 2 failed transfers? My doctor says it’s unlikely as it was minimal. My doctor previously advised he does not think it is necessary as IVF is more efficient than laparoscopy.

 

A 28-year-old first-time mother

A 28-year-old first-time mother received shared care from an obstetrician, a midwife and a GP. With regard to her antenatal care, she complained that the obstetrician failed to detect that her waters had broken. The obstetrician advised that a small amount of fluid had been lost, but this was not persistent, and he had reviewed her history, conducted an ultrasound scan to identify amniotic fluid volume and ordered a midstream urine test. This was appropriate management.

When the woman first went into labour she was unable to contact the obstetrician or the midwife. The Commissioner suggested that the obstetrician and midwife review the explanations they give women about arrangements for cover in their absence (including names and contact details).

Following delivery, the woman complained that she was in constant pain and that the obstetrician did not detect an infection in her uterus. The obstetrician was aware that the woman was in pain and considered the source to be her episiotomy repair, haemorrhoids and a rash. Consideration was also given to the possibility of an intrauterine infection, but the lochia remained clear and non-offensive and her temperature was normal. It was accepted that conservative management was appropriate.

The obstetrician made a provisional diagnosis of retained placental products due to the heavy bleeding, and performed a dilatation and curettage. The woman complained that her clinical records stated that no retained products had been found and that IV antibiotics may have been sufficient treatment. As secondary postpartum haemorrhage is most commonly due to retained products, the obstetrician’s assumption was considered reasonable. However, once the histology results had been received the obstetrician should have explained their significance to the woman.

The woman also complained that the obstetrician and midwife did not investigate the causes of her pain over the following months in hospital. However, clinical records indicate that the midwife frequently checked the woman’s perineum and uterus and provided various local treatments for her perineal pain and severe haemorrhoids. The obstetrician also provided treatments and arranged a referral to a dermatologist. This was considered appropriate follow-up care. The woman was subsequently diagnosed with Asherman’s syndrome and infertility, a rare complication of evacuation of the uterus, but the midwife and obstetrician were not considered to have breached the Code.

 

Asherman’s Syndrome: Case Study

By Alan B. Copperman, MD

History:

A 32-year-old woman presents six months following the birth of her daughter. The pregnancy was uncomplicated, but following delivery a piece of placenta was apparently retained in the uterus.

When she continued to bleed eight weeks after delivery, her obstetrician performed an ultrasound and identified remaining tissue from the pregnancy. She took the patient to the operating room for a D&C.

She stopped bleeding, but now presents six months later with no menstrual bleeding. She is no longer breast feeding and is concerned. Her obstetrician gave her estrogen and then progesterone, and the patient still did not bleed.

She was then referred to our office for evaluation of potential Asherman’s syndrome. After taking a thorough history and performing a physical examination, we performed a transvaginal three-dimensional ultrasound. This showed a fairly normal uterine cavity and a good endometrial thickness of 8 mm, but it appeared there was a narrowing, if not complete scarring, of the lower portion of the uterus

Diagnosis:

We had a lengthy conversation with the patient and her husband and discussed a variety of options, but ultimately we made the diagnosis of Asherman’s syndrome. Given that the scar tissue appeared largely confined to the lower segment, I was able to give the couple a good prognosis for recovery.

Treatment:

We took her to the operating room the following week and very gently were able to open the lower segment of the uterus using dilators and a narrow fiberoptic scope.

Once entry into the uterine cavity was successful, the anatomy appeared excellent and no cautery or resection was required.  I left a balloon catheter in the uterus and sent her home on estrogen to thicken the lining and antibiotics to prevent an infection from bacteria coming up from the vagina.  This catheter was removed in a postoperative check a week later and four weeks later the patient resumed normal menses.  Three months later she fortunately was able to conceive and at present has a healthy ongoing pregnancy.

Discussion:

Our take home messages were that complications from delivery and retained placenta are not uncommon.  Her obstetrician managed the complication and diagnosed the scar tissue.  Her obstetrician approximately referred the patient to a reproductive endocrinologist experienced in Asherman’s syndrome.  Fortunately, we were able to use a three-dimensional ultrasound to diagnose the area of the uterus that was affected, and delicately surgically managed the problem.

Asherman’s Syndrome is an extremely common and occasionally complicated disease entity.  It takes many forms and can follow a routine D&C, a hysteroscopy, a delivery or even a surgical procedure such as a myomectomy or polypectomy. There continues to be a need for awareness among the obstetrical and gynecological community to be on the look out for this disease.  Support groups exist on the internet and the patient advocacy organizations have come a long way in improving awareness of this disease.

There are different levels of expertise and surgeons who manage this disease, but ultimately optimal imaging ranging from saline hysterograms to formal hysterosalpingograms to comprehensive three-dimensional ultrasounds can all be informative. Optimal results can often be achieved with minimal intervention, and good outcomes are common.

Secondary Infertility & Asherman’s Syndrome. My Story.

Disclaimer: 1. This post includes miscarriage and period talk. If you consider these things triggers or gross, I suggest you move on and 2. I’m not a medical professional. I wrote this post based on my experience and don’t use many technical terms. Please keep that in mind when reading.

I always knew I wanted more than one child. When Emmett was almost a year old, Robert and I agreed that it was time to start trying for Baby Reese 2.0. I figured it wouldn’t be that hard and we’d be pregnant in no time. After all, we got pregnant with Emmett on the first shot. But month after month, I took a test and month after month, it came back negative. We finally got that positive sign on the fourth try and I was ecstatic. Scared, but excited.

Fast forward to our first ultrasound at 8 weeks. The technician was quiet. Her face a blank stare at the screen. I knew the news wasn’t good and tried to stay calm, smiling at Robert with hope but feeling dread.  A blighted ovum. Pregnant with no baby to be found is a weird feeling. I went home and googled, googled, googled. I found every story I could that gave me hope, stories of women with diagnosed blighted ovums that turned out to just be fetuses hidden in a tilted uterus. My uterus is tilted! My fetus could just be hiding, right?!? I refused to get a D&C until we could be sure and held onto that pregnancy until 12 weeks when another ultrasound confirmed the original diagnosis. I cried, I grieved, I had a D&C and we resolved to move forward. The good news was that I could get pregnant and that I could carry a child to term, things we knew to be true.

And so we resolved to be positive and to try again. I waited for my period, knowing that the month after a miscarriage or D&C could be the most fertile. But my period never came. My doctor told me to be patient, that my body would take care of itself and once my hormones stabilized, I’d get my period again. Four months after that D&C, I thought it was finally coming. I was actually scheduled to run a 4 mile race that morning but when I got out of bed, I could barely stand. I spent the morning laying on the bathroom floor, vomiting and shaking. But my period never came. Two days later, the cramps stopped but Aunt Flo was missing. A month later, the same. Cramps, no period. My stomach was constantly bloated. I’d do speed work at the track and it felt like there was liquid gushing around in my belly but I knew my stomach was empty. I called my doctor, insisted on tests. Blood work, ultrasounds, more blood work, etc… I was diagnosed with polycystic ovarian syndrome based on one little number in my blood work, even though no cysts were seen on my ovaries.

Throughout all of this, I was pretty open with some of my closest friends. Hiding these most important things in my life would have felt like lying so I didn’t hide them. My friends knew about the pregnancy, the miscarriage, the cramps, and missing periods. One friend in particular had been through her own ordeal with infertility and miscarriages and when she heard my story, she told me about Asherman’s Syndrome (AS). AS is a condition in which the uterus forms adhesions, or scar tissue, resulting from uterine trauma. In other words, you know how when you cut yourself you can get a scar? The same goes for your uterus. Suddenly it all clicked. In just over two years, between Emmett’s birth and resulting surgeries, miscarriage and D&C, I’d had five surgeries on my uterus. I called my doctor and asked her about AS but she brushed it off, sticking with her original diagnosis. So I switched doctors.

It turns out that there are very few AS specialists in the country but one happened to practice an hour away from me. I called, made an appointment, and a month later I had an official diagnosis. I had AS. The doctor could see some scar tissue on an ultrasound, along with fluid that was likely trapped period blood. My uterus was sealed closed with scarring. Nothing could go in, nothing could come out. I was scared but so relieved to finally have an answer.

An AS diagnosis is officially confirmed with a hysteroscopy, in which a small tube with a camera is inserted through the cervix into the womb. Since my doctor was pretty sure there was significant scarring based on my ultrasound, we decided to schedule my hysteroscopy at the same time as surgery to remove the scar tissue. Not only would this save me an extra procedure, but it would give my doctor great visibility to the scar tissue that needed to be removed during surgery.

After the surgery, a uterine balloon was placed inside me and blown up, with a small catheter coming out of me. The purpose of the balloon was to keep the uterine walls apart, preventing more adhesions from forming. After seven days, I returned to the doctor to have the balloon removed and had another hysteroscopy to make sure the scarring was totally gone. This time, since there wasn’t any surgery along with it, I was wide awake. The doctor had trouble getting the tube through my cervix and as he pushed through, I remember screaming in pain and tears streaming down my face. I was physically and emotionally drained. I wasn’t sure how much more pain I could take. But the news was good, my scarring had healed nicely and since the top of my uterus had been spared from scarring, there was a good chance I could get pregnant again. Just another week of hormone therapy to get my body ready and after my next period, we could start trying again!

So we started trying again. And again, month after month, the tests were negative or I’d get my period before I even had a chance to take a test. I wasn’t ready to give up. I began charting everything from my basal temperature to my cervical fluid. I logged it in two apps on my phone, just to be sure all my bases were covered. I confirmed we were “trying” during ovulation but after a few months, I realized that those days weren’t coordinating as they should with the quality of my cervical fluid. In fact, I had no cervical fluid on those days. Damn hormones. Hmm… google, google, google! I found that in these cases, women who had taken Mucinex the week leading up to ovulation, but not during ovulation (so as to not expose the fertilized egg, in case!) produced the appropriate cervical fluid and got pregnant pretty quickly. I tried it. It worked!!! I got pregnant the first month trying Mucinex! Today, I am 35 weeks pregnant with Emmett’s little brother or sister.

Writing this was hard. I’m sitting at a cafe trying to get it all out, to sound coherent, and I’m crying. It’s hard to remember it all to put it all out there. So excuse me if this is long and lacks sophisticated writing. I’m just trying to get it out.

I try to keep private matters to myself, especially making sure to respect Robert’s and Emmett’s privacy in the process. But if I hadn’t told my friend about my struggles, I may not have found out about AS in the first place, and I might still be struggling to get pregnant. Asherman’s Syndrome is extremely rare and many doctors don’t even know about it. I wonder how many women going through unexplained infertility might be suffering, might benefit from spreading the word and knowledge. Some of my friends who know my story have actually asked to share it with their friends, thinking they might be going through the same thing. Three women have received Asherman’s Syndrome diagnoses as a result. So this is my story. If you’ve been through miscarriage and/or infertility, I hope it helps you. If not, perhaps it’ll help someone you know and love.

My main reasons for this post are that I wished this information had been available to me before I elected to have a D&C or when I was looking for answers afterwards. I hope that by this post I can provide other women with the information to make an informed decision or to help someone find answers. In no way am I saying that women should never have a D&C – not only are there medical circumstances where it the best/only option but the emotional and psychological factors also contribute and every situation will be different.

It took me almost 5 months to get a diagnosis of severe AS (including cervical scarring, large sections of scarring in my uterus and blockage of one tube) after a MMC and D&C at 8 weeks.  I had to refuse to leave my GPs office (after the 4th visit) until I was given a referral to an AS specialist.

I was extremely fortunate that I had access to Prof V (one of the worlds leading specialist in Ashermans diagnosis and treatment) and that I only required one surgery before being given the all clear to TTC. We were even more blessed to get our BFP that month and our wonderful DD joined us almost exactly a year after my AS diagnosis.

One of the things I found hardest to deal with during the process was my anger at not being fully informed about the risks and options to having a D&C. Although I may have still made the same decision it would have been an informed decision. I also struggled with the medical worlds denial of AS – The lack of awareness and willingness of many doctors to even consider the possibility of Ashermans Syndrome is one of the major issues in diagnosis and treatment and one that I encountered. This is even though some research suggest up to 40% of women who have had a D&C due to retained products of conception may have some for of AS and it  is thought to be one of the causes of unexplained infertility.

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