How Can Asherman’s Syndrome Impact Fertility?
“In a couple of weeks, I’m heading to Boston to get my 10th hysteroscopy with the only A-lister who’s left in the U.S. for Asherman’s syndrome.”
I’m on a Zoom call with Suzanne, a 39-year old from Chicago. She’s giving me background on her fertility journey, and it’s a pretty grim play-by-play.
In 2016, a year before she got married, Suzanne had an open myomectomy to remove two tumors in her uterus. The fibroids, along with adenomyosis (a condition where the endometrial lining grows into the wall of the uterus), were causing extremely heavy and painful periods.
One way of treating both uterine fibroids and adenomyosis is a hysterectomy. But for women that want to get pregnant in the future, a myomectomy is the best option. Suzanne’s fibroids were too large for a laparoscopic myomectomy.
Taking them out — two the size of oranges, one the size of a plum — left her with a large scar across her stomach but much less pain.
Unfortunately, the surgery had another, less welcome, result.
Trying to get pregnant
Suzanne tried to convince her husband to start trying before the wedding. At 37, she felt anxious to begin building her family. He wanted to wait until after they were married, and Suzanne conceded. But six months after the wedding, they still hadn’t gotten pregnant.
Suzanne and her husband got work-ups with a reproductive endocrinologist, and everything looked good. But the doctor wanted to check one thing — was it possible she had some scarring as a result of the myomectomy?
A hysteroscopy revealed significant scarring inside the uterus and scarring that completely blocked one of her fallopian tubes.
The doctor removed what he could, and Suzanne started with a plan for IVF with PGS (preimplantation genetic screening) tests. Because of Suzanne’s age and the scarring, they needed to reduce the risk of a non-viable pregnancy. A miscarriage might require a D&C (dilation and curettage), which could lead to more scarring.
And then a miracle happened.
One month before they were supposed to start IVF, Suzanne discovered she was pregnant.
She was overjoyed. “I was so naive — like positive pregnancy test, yay!” she says.
They saw the heartbeat, made it past the critical twelve week mark. And then at their first OB appointment, the doctor identified several indicators of chromosomal abnormalities. They suspected Suzanne wouldn’t carry to term, and even if she did, the baby wouldn’t survive for more than a week or two.
Suzanne terminated the pregnancy at 14 weeks.
“So that was what?” she says, calculating in her head. “Two and a half years ago? I’ve now been with four different IVF clinics. I’ve had eight more hysteroscopies, and the scarring keeps coming back. Three failed transfers, three cancelled transfers because of lining issues or fluid in the lining issues.”
Since then, I know from Suzanne’s Instagram page, the number of cancelled transfers has increased to four.
Asherman’s syndrome, also known as intrauterine adhesions, is a disease where scar tissue lines the walls of the uterus. More than 90% of Asherman’s cases are caused by scar tissue that forms as a result of a uterine surgery — like a D&C or like the myomectomy Suzanne had.
The most common symptom of Asherman’s is the lack of menstruation. Because the health of the uterine lining is critical to a healthy pregnancy, Asherman’s can also impact the ability to get and stay pregnant.
Doctors use a number of imaging tests to identify the scarring. The most effective is hysteroscopy. During a hysteroscopy, the doctor inserts a telescope and camera into the uterus to view the lining throughout the uterine cavity. At that time, they can also remove scar tissue by cutting the adhesions with scissors or lasers. In more complicated cases, they may need to do a laparoscopic surgery.
Removing the adhesions can lead to success for some women seeking to get pregnant, but scar tissue can reappear. Some women need multiple surgeries, and in some instances, the scarring is too severe for successful long-term removal.
Going outside the box
“I’m almost ready to move forward with a gestational carrier,” says Suzanne. She told herself that if she wasn’t pregnant by the time she turned 40, she’d begin working with a surrogate. And several doctors have said her best route to parenthood is with a gestational carrier.
But Suzanne’s current doctor is more willing to try different methods so she can carry on her own.
“She’s very curious. She’s like, ‘No, we’re going to get to the bottom of this. You’re healthy. I’ve seen way worse uteruses than yours be successful and carry full term.” Suzanne explains several of the outside-the-box methods they’ve tried — platelet rich plasma infusions and growth colony stimulating factor uterine washes, antihistamine immune protocols. They’re all aimed at increasing her uterus’s receptivity to an embryo.
Her reproductive endocrinologist also suggested that she see a reproductive immunologist to look into her chronic endometritis, inflammation in the uterine lining. So Suzanne is now on immunosuppressants because they found elevated natural killer cells and elevated cytokines that could impact an embryo’s ability to implant.
The immunologist recommended an expensive treatment called IVG, intravenous immunoglobulin. “It’s basically like you get an IV and sit there for four hours while it drips into you. And it’s supposed to calm down the natural killer cells and cytokines. It’s $3,000 a pop.”
She’s fortunate that Illinois mandates some fertility coverage by insurance companies. At her current company, Suzanne’s insurance covers four retrievals a year and unlimited transfers. They don’t cover PGS testing or embryo freezing (or $3,000 IVG treatments), but her hysteroscopies and all the immune testing have been covered.
Even as she tries new methods and travels to see the best specialists, Suzanne says she doesn’t know how many more failed transfers and wasted embryos she can deal with before she’s just ready to move on.
Being her own advocate
Keeping detailed notes about everything going on inside her body helps Suzanne stay sane through it all.
“I’m super into knowing everything, doing all the research,” she says. “I’ve got spreadsheets about all my IVF cycles. Like what my lining was each check, what my follicle count was, the sizes, exactly what my estrogen was when we triggered, how many eggs.”
She takes home pregnancy tests regularly too. While a lot of people recommend not testing before the beta blood test, Suzanne starts testing early. “I want to know if the embryo tries to implant and doesn’t,” she says.
After her first transfer with her new doctor, she had a faint line on the fifth and sixth days after the transfer. Then it went away. “To me, that was super interesting. I thought maybe there are immune issues because my lining looked great,” she says.
She shared the information with her doctor, who confirmed it was an indication they were on the right track.
“To me,” says Suzanne, “it’s just like the more information, the better. You know, my first cycle, I was kind of going into it like la la la, and then it didn’t work. And I was like, Oh, I need to figure this shit out now.”
Over the last three years, she’s learned to be her own advocate and stop relying on doctors and nurses to push for new plans. For Suzanne, testing is just another way to gather information. Besides, she says, “I’m already going to drive myself crazy in the two-week-wait. Testing is going to make me feel better instead of worse.”
Of course it’s not all cerebral. “I mean, it’s still obviously excruciating waiting for the tests, thinking you see that line,” says Suzanne. “I’m using the app to do the contrast pictures, sending it to friends, getting my hopes up and then it goes away. It’s exhausting and frustrating.”
Even so, she says she’d rather go through that process than sit there not knowing.
The Instagram community
And when it’s all too much, she turns to the infertility community. Suzanne started her fertility Instagram right before her third retrieval cycle as a way to track her journey.
In the last year, it’s become something more. She’s met other women from Chicago going through the same thing. She’s met others with Asherman’s.
“Sometimes it is a little overwhelming and exhausting,” she admits, “but I’ve definitely connected with people that I wouldn’t have otherwise. I’ve learned quite a bit, and it’s been rewarding to be able to help people and answer questions and share things.”
She’s encouraged others to see an immunologist or an Asherman’s doctor.
Suzanne even met a few other Chicagoans in person — socially distanced, of course.
“We started a group of us who’ve all gone through multiple failed transfers and are going through primary infertility. We call it the shit boat,” she says, laughing.
Suzanne knows that secondary infertility is also challenging, but she explains,“it’s hard not knowing if you’re ever gonna have anybody call you mom. It’s a different thing.”
Sometimes it feels to Suzanne like being a mom will never be her reality. But then when she sees a someone’s success story after they’ve gone through five or ten years of infertility, she knows it’s possible — that becoming a parent isn’t just something for other people.
“I can’t imagine being on the other side, like being myself again,” she says. “It’s exciting to look forward to. I used to be the most happy, positive, fun person. I was such a great friend and daughter and niece and aunt. And I just don’t have the energy to care about any of it right now.”
She gives a sad laugh, “I’m thinking I want to write apology letters to everybody. Sorry I haven’t been there. It’s not you, it’s me.”
What comes next
Since I spoke to Suzanne in March, she’s continued along this rocky path. Her planned April transfer was cancelled because of thin, fluid-filled lining.
After that, some potentially good news came — as it often does for those dealing with infertility — in the form of a medical diagnosis.
Suzanne’s doctor suspected the constant fluid in her lining could be the result of a hydrosalpinx — a fallopian tube that’s blocked with fluid. The doctor suggested a hysterosalpingogram (HSG) to check. The suspicion made sense to Suzanne, given the blocked tube in her 2016 myectomy. She pushed to go straight to a laparoscopy, where the surgeon could see any fluid and remove the tube if necessary.
Suzanne had a laparoscopy in late April, and the surgeon confirmed the presence of a hydrosalpinx. They removed the affected tube and confirmed that she does not also have endometriosis, something that had been a question in the past.
Now Suzanne is giving her body a few months to heal. She’s hopeful that this latest procedure was the last missing piece to a complicated puzzle. She’s ready for her next cycle to bring a “nice fluffy lining with no fluid.”
With her birthday just two weeks away, Suzanne isn’t feeling excited to celebrate. Childless and not pregnant isn’t how she hoped to ring in her 40th year. But she does have a plan and, because of all her self-advocacy, a cautious hope that carrying a baby is still in the cards for her.
MEET THE AUTHOR
Katie Taylor is a writer and content strategist. She lives in Richmond, Vermont with her wife, two kids (one she birthed, one she did not), and a dog. You can read more about her infertility journey here. Katie induced lactation so that she could breastfeed the son her wife gave birth to, and she encourages anyone interested in learning more to reach out. katie (at) katietaylorwriting.com.