Secondary infertility and Asherman’s Syndrome – a personal story

A silent struggle, faced by many

Currently, we’re feeling more isolated as a society than ever before. Being socially distant makes it harder than ever to connect, but when you’re going through something as emotionally challenging as trying to conceive, connection is exactly what you need most.

There are many aspects of fertility that can heighten this sense of isolation. For example, parents trying for a second baby often feel unable to speak openly about their struggles and how to deal with secondary infertility. They may feel they should be grateful enough for the child they already have and that expressing their pain could be seen as unthankful or insensitive.

What is secondary infertility?

Infertility can occur in two main forms:

• Primary infertility, where someone is unable to conceive after trying for one year.
• Secondary infertility, where someone is unable to conceive again after previously becoming pregnant and giving birth at least once.

It’s entirely possible for your fertility to change after the birth of a child. Time, age and your partner’s health can play a role in this.

For many people, the term secondary infertility is completely unfamiliar. And even for those who have heard it before, few understand what it truly means. It’s easy to assume that if you’ve had one child, you can have another relatively easily. But that’s not always the case.

This misconception contributes to a significant lack of awareness, advice and support for those navigating the emotional and physical challenges of secondary infertility.

The emotional impact

The inability to conceive a sibling for your existing child often brings complex emotions – sadness, frustration and guilt among them. It can even detract from the joy of parenting your current child, clouding what should be a happy chapter with quiet grief.

Many people describe feeling distant from friends or their community. Those who were once a strong source of support through early parenthood can, unintentionally, become reminders of what’s missing. Seeing pregnancy announcements, newborn photos or hearing others discuss growing families can trigger waves of pain and jealousy. It’s really tough.

What’s missing – support and understanding

While there’s a growing amount of information available on physical fertility treatments and ways to increase your chances of conception, there’s still a major gap when it comes to emotional support.

Mothers and fathers experiencing secondary infertility often feel uncomfortable talking about it, worrying that their grief won’t be understood or worse, that it will be dismissed. Those trying to conceive a sibling or who have experienced the loss of a baby may delay seeking help or keep their struggles hidden entirely.

So, why is it so hard to talk about?

To understand this from someone living it firsthand, one of our readers has bravely shared her personal story of secondary infertility and the guilt, isolation and hope that has come with it.

Feelings of guilt

“In the past, I shied away from discussing my situation in the TTC (trying to conceive) community – the reason being, I am already a mother to a three year old boy. I mistakenly felt that I didn’t ‘qualify’ and I worried about upsetting other TTC women by appearing callous, greedy or insensitive.

Unfortunately, these thoughts and feelings have, at times, exacerbated the isolation and loneliness that infertility can cause. I really hope that by writing my experience, it might help other women who are experiencing the same or similar situations that I have been going through, to feel they can also open up about their experiences and seek help. This is our story.”

Our personal story

For a bit of background, my husband and I conceived our son relatively easily and, apart from some bleeding in early pregnancy (due to a uterine haematoma), the pregnancy and birth were pretty straightforward. So when we started trying for a second child, never did we imagine the ordeal that was to follow.

Our grief

We started trying for a second child in 2018. I was away in Ireland on a work trip when I got my period. The bleeding was very erratic, and it just didn’t feel like a normal cycle, so when I got home I took a pregnancy test. To my amazement, it was positive.

The joy, however, was immediately overshadowed by fear about what was causing the bleeding.

Four torturous weeks and two scans later, while sitting in the hospital’s pregnancy unit surrounded by women with healthy, happy bumps, we were told we had lost the baby. We were given three options:

• Wait for a natural miscarriage
• Surgical management (D&C)
• Medical management (medication)

Amidst the shock and grief, we chose to have the surgery. Two days later, I was back home, and no longer pregnant.

The pain

After the surgery, it took a long time for my periods to return and, to this day, they’ve never gone back to ‘normal’. Each period now lasts only about a day, with very light bleeding. I was concerned, especially as I’d read about the rare but serious risk of developing Asherman’s Syndrome after a D&C.

Asherman’s occurs when trauma to the endometrial lining (for example, during a D&C) causes adhesions or scarring within the uterus. These adhesions can fuse together, sometimes preventing normal menstruation or pregnancy.

“I raised my fears with my GP but, due to the common yet incorrect perception that Asherman’s is a rare condition, he ruled it out over the phone – without even examining me.”

In March 2019, we conceived again. But at around six weeks, I started bleeding once more. This time, the early pregnancy unit scan showed that the embryo had a heartbeat, but the rush of relief was immediately crushed by the news that it was faint and irregular. Two long weeks later, they confirmed we had lost another baby.

Losing hope

Because of my fears about uterine scarring, we opted for a medically managed miscarriage this time. But on Mother’s Day, after 48 hours of intense pain and heavy bleeding, I woke to the devastating news that the procedure hadn’t fully worked. I needed another D&C.

“Exhausted, broken and grief-ridden, I was wheeled back down to theatre.”

A few weeks later, I sat in an appointment with a private fertility specialist. During the scan, she broke the news that the previous D&C had also been unsuccessful, and there was still pregnancy tissue remaining. I was at risk of infection and needed urgent intervention.

After another failed medically managed miscarriage, I had my third D&C.

In July 2019, a hysteroscopy and laparoscopy finally confirmed my fears: I did, indeed, have Asherman’s Syndrome.

“The doctor found (and cleared) a thick band of scarring all the way down the middle of my uterus, most likely caused by the first D&C.”

The level of scarring meant there was no chance I could have carried a successful pregnancy without that hysteroscopy.

Asherman’s Syndrome is notoriously difficult to detect on an ultrasound scan and, as a result, is largely underdiagnosed. The gold standard for both diagnosis and treatment is a hysteroscopy, but these surgeries are rare within the NHS. Even when scarring is successfully removed, there’s no guarantee that the endometrial lining will fully recover. The condition also increases your risk of complications in future pregnancies.

Another loss

In November 2019, we fell pregnant again. With renewed hope, we allowed ourselves to believe that this time would be different. Surely, third time lucky?

But at around six weeks, the bleeding began again. A few days later, I was having emergency surgery for an ectopic pregnancy.

“I lost a fallopian tube – and my third baby.”

Barriers in seeking fertility help

We were very happy to see the back of 2019, and in January 2020 we made the decision to go down the IVF route and seek fertility help. My lining could be monitored more closely, and being one tube down (and several grey hairs better off), we felt we needed the intervention.

My fresh transfer was unsuccessful, and by March 2020 I was three-quarters of the way through preparing for a frozen embryo transfer when Covid-19 hit.

Miraculously, the transfer was able to go ahead just before lockdown completely shut down our fertility clinic. But despite the progesterone doing a great job of convincing me that this time would be different, the pregnancy didn’t stick.

Staying positive

So here I am, waiting to start my third round of IVF.

During this ‘journey’ people have often told me how lucky I am to have my son and I agree 100%. I love him with all my heart, and the joy he brings me has pulled me out of some really dark moments.

Well-meaning friends and family have suggested that maybe I should give up and be grateful for what I have. Although I know this advice is offered with care, the implication that because I want a second child I do not appreciate what I already have is very hurtful and simply is not true.

The thing that people do not always understand with secondary infertility (and I certainly didn’t realise this before it happened to me) is that you cannot ‘switch off’ the all-consuming maternal desire to have another child just because you already have one.

“I have prayed and longed for this desire to leave me. Surely it would be so much easier, right?! I do not do that anymore though. I believe the desire for me to have a second child is quite simply part of my biological make-up. I was born with it. This is meant to happen, I just wish I knew when.”