Secondary infertility and Asherman’s Syndrome – A personal story opening up the conversation

Currently, we’re feeling more isolated as a society than ever before. Being socially distant makes it hard for us to connect, and when we’re going through something hard like trying to conceive, connection is what we need most. There are things to do with fertility, which make some people feel even more isolated, for example, if they aren’t able to talk about their struggles for a second baby because they feel they should be thankful enough for having one.

What is secondary infertility?

Infertility can happen in the primary instance – being unable to conceive after trying for one year— and in the secondary instance — being unable to conceive after becoming successfully pregnant and giving birth, at least once before. It’s possible for your fertility to change after the birth of a child, and time may change yours and your partners’ fertile health too. For many people, the term “secondary infertility” is completely unknown, and of those who have heard of it, many still won’t even understand it. You may think that if you have one child, you can surely have another one, right? Not necessarily. This misconception results in a lack of information, fertility advice and support for all those suffering the consequences of secondary infertility.

The inability to conceive a sibling for your existing child often brings with it feelings of sadness and detracts from your current role and enjoyment as a parent. You may feel distant from friends as people who are a great source of support whilst you parent your first child may also initiate feelings of pain and jealousy. It’s really tough.

Whilst you can access more information on physical fertility help to increase your chances of conception, what’s lacking? The support for mothers and fathers experiencing secondary infertility, feeling uncomfortable and unable to speak about it. Sadly, those trying to conceive a sibling or who have suffered baby loss may be less inclined to seek help as quickly.

So, why is it so hard to talk about? To understand a little better from someone experiencing this struggle first-hand, here is one of our reader’s personal experiences of secondary infertility. Read on as she bravely shares her painful experience of trying to conceive a sibling for her son.

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 / similar situations that I have been going through to feel they can also open up about their experiences too and seek help.

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 all pretty straight forward. 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 and got my period. The bleeding was very erratic and it just didn’t feel like a normal period, so when I got back home I took a pregnancy test and to my amazement it was positive. The joy however was immediately overshadowed with fear about what was causing the bleeding.

Four torturous weeks and two scans later, whilst sitting in the hospital pregnancy unit surrounded by women with a healthy happy bump, we were told we had lost the baby. We were explained our options:

1. Wait for a natural miscarriage

2. Surgical management (D&C)

3. Medical management (drugs)

Amidst the shock and grief, we opted for option 2, surgery, and 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 have never returned to ‘normal’ – each period only lasts about a day with very little bleeding.  Naturally I was concerned, especially as I had heard about the ‘rare’ risk from a D&C of an acquired condition called ‘Asherman’s  Syndrome’. Asherman’s occurs when trauma to the endometrial lining (such as from a D&C) causes adhesions / scarring in the uterus and the adhesions fuse together. 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.

We conceived again in March 2019 but at about 6 weeks I started bleeding again. This time the EPU scan showed the embryo had a heartbeat but the rush of relief was immediately squashed by the news that the heartbeat was very faint and irregular. Two long weeks later they confirmed we had lost another baby.

Losing hope

Due to my fears about scarring, this time we opted for a medically managed miscarriage. However, I woke up on Mother’s Day after 48 hours of intense pain and heavy bleeding to the news that the procedure hadn’t fully worked. I needed another D&C. Exhausted, broken and grief ridden I was wheeled off back down to theatre.

A few weeks later I was sitting in an appointment with a private fertility specialist. During the appointment she scanned me and to our shock broke the news that the previous D&C procedure had been unsuccessful and there was still some pregnancy remaining inside me. I was at risk of infection and needed intervention urgently.

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

In July 2019, a hysteroscopy and laproscopy confirmed my fears, that 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 from the first D&C. The level of scarring meant that there was no chance I could have carried a successful pregnancy if I hadn’t had the hysteroscopy. Asherman’s Syndrome is very hard to detect on an ultrasound scan and, as a result, it is largely under-diagnosed. The gold standard for diagnosis and treatment is a hysteroscopy but these surgeries are rare on the NHS. Even if scarring is removed successfully there is no guarantee that the endometrial lining will fully recover. Asherman’s Syndrome also increases your risk of complications during pregnancy.

In November 2019 we fell pregnant again; with renewed hope we felt confident – surely third time lucky, right?! Alas at around 6 weeks, the bleeding started 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 that we were going to go down the IVF route and sought 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 in March 2020 I was three quarters through the preparations for a frozen embryo transfer when Covid-19 hit.

Miraculously, the transfer was able to go ahead just before lock-down completely shut down our fertility clinic. BUT despite the progesterone doing a great job of leading me to believe 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 got. Although I know this is well intended advice, the implication that because I want a second child means I do not appreciate what I have is very hurtful and it is simply 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 have a child already. 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!