The 'Routine' Question That Held New Meaning After My Hysterectomy

In the past six weeks I’ve been asked by four different doctors and nurses whether I might be pregnant. This question is pretty standard for women of child bearing age to be asked, and to be honest in the past I’ve answered and not given it a second thought. However, six weeks ago at the age of 39, I had a hysterectomy and it’s really opened my eyes to questions people ask and the often unintentional impact these questions have on women.

• What is Ehlers-Danlos Syndrome?
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Personally, I was very happy to go ahead and have my operation. It wasn’t a difficult decision for me to make and I had the full support of my husband and consultant. I have a chronic condition called Ehlers-Danlos syndrome (EDS), a very complex condition which means that my joints, skin and internal organs are all affected by weak connective tissue throughout my body. Collagen is like the glue that holds ligaments in place, the super stretchy faulty collagen causes hypermobility in joints (there are now 13 types of EDS, not all of them have hypermobility, or being “double-jointed,” in their diagnostic criteria). EDS is a genetic condition so it often runs in families, although everyone who has EDS tends to be affected in a slightly different way (even within the same family and many people are either undiagnosed or misdiagnosed).

I’m very fortunate to have been blessed with two amazing children, our family was well and truly complete. Prior to my surgery, we had no intention of having more babies. We had decided several years ago that as my disability from EDS and other related conditions were progressing, there was no way my body could cope with another pregnancy. My reproductive organs were redundant and giving me rapidly increasing gynaecological problems, so I really was looking forward to what I decided was “eviction day” for my uterus and no more periods!

In the first couple of weeks after my surgery I had a few low days, which I understood were to be expected after major surgery that messes with your hormones. The thing that surprised me though was my feelings of loss…the fact that I could never get pregnant again. It’s finite. That decision whether to have another baby or not can never be reversed. How crazy to have all these feelings now, when I was so sure beforehand and not remotely contemplating pregnancy. So I had a few duvet days, felt a bit sorry for myself and blamed erratic post-op hormones.

Over the next few weeks I had numerous medical appointments after developing a post-op infection. At every single appointment after being asked, “Is there a chance you might be pregnant?” I would pause and reply, “Have you read my notes? I had a hysterectomy less than a month ago.” Soon to follow was an embarrassed, apologetic doctor who realized their mistake. Each time it’s happened I’ve brushed it off, laughed nervously and quickly asked a different question to change the subject. But deep down those sad feelings return as I’m reminded once again that no, there’s absolutely no way I’ll ever be pregnant again.

I’m 100% sure none of these doctors or nurses intend to cause upset; it’s just a standard question they routinely ask as a part of their job. I’m quite sure they have no idea how upsetting it can be for some women. At the moment I’m optimistic that once my hormones have settled down I won’t be quite so sensitive to questions like this; and the rational part of my brain will quickly remind me exactly why having another baby was a ridiculous idea for my increasingly wonky EDS body.

I do feel very sad though for all the pre-menopausal women, young enough to get pregnant, who for various reasons such as infertility, cancer, endometriosis, fibroids, prolapse or other medical conditions have had no option but to have a hysterectomy — and as a result had their dreams of pregnancy devastatingly crushed.

I joined an online support group for women having a hysterectomy. There are many women in the group sharing heartbreaking stories of when they’ve been put in similar situations, and it’s their experiences that really spurred me to write this blog. Sadly for these women, it isn’t just doctors asking insensitive questions about periods or being pregnant, but colleagues, family and friends too. Just imagine that crushing feeling of emptiness, loss, almost grief…triggered anytime and often when you least expect it. When you’re reminded of the reality. But instead of bursting into tears on the spot, or getting angry, many women will laugh, brush it off and say, “Don’t worry, it’s fine,” to save the other person’s embarrassment.

Something else I only discovered after my hysterectomy is what women refer to as “swelly belly.” Swelly belly is a somewhat cruel thing that a lot of women experience after their surgery. It’s the bodies way of protecting itself while it heals internally, a bit like the swelling from a sprained ankle. It can last anything from months to a year or more post-op. Generally, swelly belly in the weeks and months after surgery is a sign you’ve done too much physically and you need to rest a bit more. For some women swelly belly appears and doesn’t disappear for a long time. Often, women find swelly belly increases gradually throughout the day and is worse in the evening. The hardest thing about it, is that it makes a lot of women look several months pregnant. Once again this is an added and cruel thing which triggers questions about pregnancy from well-meaning family and friends and of course strangers too.

I know of a young lady in her late 20s, who had to have a hysterectomy due to cancer. It was late stage and there wasn’t much time after the shock of being diagnosed to having her surgery. She had been married for a few months and she and her husband were about to start trying for a baby when she found she had cancer. All of her dreams of having her own family naturally were shattered instantly. A few weeks after her hysterectomy she traveled back to the hospital by taxi to see her oncologist. The taxi driver dropped her at the hospital entrance and wished her well for the forthcoming birth of her baby. She was absolutely heartbroken by this innocent comment by a well-meaning stranger. I’m pretty certain the taxi driver probably had no idea post-op swelly belly was what he noticed, and he just assumed she was several months pregnant. Once again this sad story shows how innocent comments about something so sensitive for some women have long lasting emotional consequences. This particular lady began to stay indoors and withdrew from socializing because it was the only way she felt she could protect herself from upsetting comments and questions. Now, two years later, she’s trying to rebuild her life. But she knows the inevitable questions about pregnancy will continue to pop up when she least expects it.

As I said at the beginning of this blog, this isn’t something I gave much thought about until a few months ago. These stories from other women, together with my own experiences, have had quite a profound affect on me. Hence my desire to spread some understanding and awareness among the public. If this blog can make people think twice before assuming a lady is pregnant, or assuming every woman old of child-bearing age is going to get pregnant, then hopefully it will save many women added heartache.