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Oct 3 / Caro

Why I Believe Fertility Support for Women With Diabetes Needs a Rethink

Like a lot of women with diabetes, I spend a lot of time ensuring that people see that it doesn’t have to interfere with life and that there aren’t very many things that I can’t do. We don’t want or need special treatment in most ordinary circumstances in life. That said, it certainly complicates life at times, and many things need a little more thought and planning. Pregnancy is an obvious example. Women with diabetes can, and frequently do, have happy healthy pregnancies with happy healthy babies at the end. But it does take a lot more planning and effort to achieve than for many women without diabetes.

Pregnancy prep, for a diabetic, begins many months before “trying to conceive”. Current available evidence suggests that the risk complications is reduced if blood glucose control is at optimal pregnancy levels for some months prior to conception. Most experts seem to recommend a minimum of three months of good control. And this has benefits for the mother-to-be too, as very rapidly tightening control after learning about an (unplanned) pregnancy is associated with a greater risk of worsening any pre-existing eye complications, or bringing new ones on, as well as a much greater risk of hypoglycaemic unawareness and severe low blood sugars – potentially dangerous for both mum and baby.

Pregnancy standard of control achieved for the requisite time, you get the green light to start “trying” in the normal way in the hope that a positive pregnancy test will soon follow. Except, obviously, sometimes it doesn’t. In the presence of good control and regular cycles, there is nothing to suggest that this might be related to diabetes. But all the while that tight control needs to be maintained.

Unless you live with it, it’s impossible to truly understand what that means, but here is a small flavour: Testing blood sugars frequently (up to ten times per day) day-in, day-out. Counting every carb that passes your lips and calculating the corresponding insulin dose. Restricting dietary choices in pursuits of better post-meal blood glucose levels. Aggressively correcting high blood sugars whilst trying to avoid too many lows. Dealing as best as possible with the hormonal ups and downs of each cycle and their effects on your carefully calculated control. And doing that over and over as each month your period arrives and your pregnancy hopes fade.

Vibe CGM Graph

Trying to conceive can be trying for everyone, but trying to conceive with diabetes is a double whammy of struggle.

If you’re under 35, like other women in the UK, women with diabetes are expected to endure 12 months of this roller coaster of trying and waiting until basic fertility investigations are carried out on the NHS. By this stage the obsession over blood sugars has already been going for at least 15 solid months. You then spend month 13 of “trying to conceive” getting blood tests done on appropriate days. And possibly month 14 having these repeated in the hope of a different result. Then you might wait anything between six and eighteen weeks to be seen by a fertility specialist (unless you opt to pay privately, of course). All of which adds up to over 18 months of super tight diabetes control. Two pregnancies worth, before you’re even pregnant.

It’s easy for outsiders to dismiss, to tell you to take a break and that it won’t hurt. Even my GP suggested to me that I stop trying quite so hard to keep my control so good, and if I did happen to fall pregnant I could quickly “sort things out” then. It’s easy to say if you won’t be the one unable to move on should that pregnancy end in miscarriage, forever wondering if those weeks of slacking were the cause. It’s also easy to say when you don’t understand that “sorting it out” isn’t always as easy as it sounds. Because where blood sugars are concerned, stability breeds stability and chaos breeds, well, chaos. Keeping on the level is hard work, but comparatively easier than creating good control out of a mess.

I’m well aware, as someone who wants to minimise the impact of diabetes on my life and health, that we should all be striving for tight control for our own sakes, not just our unborn children. But there is a difference in the level of control required long term to reduce the risks of complications and the extra level required to really minimise the risks to a growing baby. The difference is that just two weeks of terrible control in a forty week pregnancy is a relatively long term. Two weeks in the three decades of diabetes behind me and the many, many years still stretching ahead of me is comparatively tiny. I can slip up for a few weeks, slack off and only test a few times each day. I can take a break between CGM sensors if I so choose and I can be lazy and let my pump infusion site run on for four days because I don’t feel like changing it. In the grand scheme of things it won’t make much difference, unless you throw a potential pregnancy in to the mix. A baby is the biggest motivation for good control ever. But it’s also the biggest fear factor.

I can’t say it often enough that people with diabetes on the whole don’t want to be treated any differently than those without. For the most part there is no need. But sometimes it’s essential. Our pregnancies aren’t managed in the same way as pregnancies which aren’t complicated by diabetes, and I don’t believe that the assessment of our fertility should be either.

I wouldn’t for a moment suggest that women with diabetes should somehow jump the queue for fertility treatment and I fully understand and support the general need to wait a while before testing fertility, as most often all that is required is time. But for some people all that time will turn out to be a waste, because pregnancy could never have been achieved without some form of intervention. That is sad, and hard enough to bear for any couple. But for a woman with diabetes who has driven herself to burnout in all the months of obsessive control, it’s even harder.

The basic fertility tests offered to women who’ve been trying for a year are relatively inexpensive in health service terms and I believe that they should be offered sooner to women in this position. Even if it’s just reassurance that all the effort is worth while because there is nothing obvious going on and pregnancy is as likely as for every other couple. If the news is less good, then at least it’s possible to make informed decisions about diabetes management moving forwards. Because what is the comparative cost to the health service of managing pregnancies in women who have tired of all the hard of work of diabetes and burned out long before the successful conclusion of a pregnancy? These women are at increased risk of miscarriage, need even closer monitoring in pregnancy, have increased risk of needing a caesarean delivery, and increased risk of birth defects or still birth.

Obviously this is something about which I’m very biased, impatient as I am to have another child and as burned out as I am by controlling diabetes right now. I know that every women who is trying and failing to conceive is desperate for answers and wants them as soon as possible. What I’m trying to illustrate is how dealing with an all-consuming chronic medical condition makes this process harder. I’m constantly baffled by how we are left to struggle yet the moment the second line appears on a pregnancy test, there couldn’t be more help on offer.

I could certainly have done with a bit more support on this journey. It’s amazing how much better I’m beginning to feel now that we’re finally getting it.

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3 Comments

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  1. Chloe / Oct 5 2013

    My gosh, I had no idea just how strictly you need to keep things under control whilst trying to conceive, but reading your post it explains it all very well. As you said, two weeks of poor management might not seem a lot, but it is in terms of the gestation of a baby. I got the basic fertility tests before 1 year because of recurrent miscarriage, but it’s absolutely crazy that they wouldn’t give them earlier when there are other health issues present already – there should definitely be more support for diabetics trying to conceive, even just a health professional you can talk to should you have any questions, without the need to pay money to go private. It’s a horrible feeling to know that help is there, but you just don’t qualify for it yet.

    • Caro / Oct 6 2013

      Diabetes is a funny thing because we spend a lot of time wanting to make it look easy and like it’s not a big deal, but underneath that there is usually a lot of hard work going on. I realised afterwards that this was a pretty long post, but I struggled to edit it down because I think it does explain exactly how I feel – and writing how I feel usually helps! I do go to a diabetes pre-conception clinic, but that is entirely focused on the numbers, there is no actual support for people struggling to conceive or even really any emotional support available.

      To be honest, probably most women struggling to conceive could do with better emotional support as it can be really draining anyway!

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