Managing Long-Term Illness(es) Whilst Pregnant

Trigger warning: mention of pregnancy.

As I am close to entering my third trimester, my husband and I have found that being pregnant whilst living with and trying to manage other health conditions something that has been a definite challenge, but also provided us with some positives – the main one being just how well I am being looked after.

When you have other illnesses, the simple act of becoming pregnant isn’t always straight forward. For me with my Endometriosis, Adenomyosis and PCOS (yep, a triple whammy!) we were prepared for the long and hard journey to conceive, but it also meant having to experience other things that we weren’t always prepared for.

For example, before we even started trying for a baby we had to book in with my GP and consultant to discuss all of the medication I was taking, which ones I had to stop, and which ones were considered safe to conception, early pregnancy and the rest of pregnancy. And even then we didn’t get straight answers and even heard conflicting opinions when we started seeing the midwives.

And then there was having to deal with all the healthcare professionals who repeatedly told us that “Endometriosis would be cured” by falling pregnant, how the symptoms I was still feeling were “no longer due to Endometriosis, as that was gone now I had a baby in me” and those who simply took one look at my medication list and already formed an opinion that I was clearly a hypochondriac who just couldn’t be happy that she had managed to fall pregnant.

There was also the challenge of managing common pregnancy symptoms on top of my existing ones. At around 5/6 weeks I came down with Hyperemesis Gravidarum (severe vomiting and nausea that leads to dehydration and weight loss, often requiring urgent medical attention) which meant that my medication was rendered useless or I couldn’t stomach it. At a similar time, I was rushed into hospital with a suspected ectopic pregnancy – not a symptom of pregnancy as such, but a major risk to me with my Endometriosis and Adenomyosis – the fact it mimicked my Endometriosis symptoms meant there was a small delay in seeking help (thankfully, all was fine). Lastly, the fatigue experienced by many woman in early pregnancy was magnified a great amount due to the Hyperemesis, constant pain and the stomach bug I managed to pick up around 7/8 weeks pregnant (no idea where from, mind).

But things started to look more positive when we attended my first midwife appointment when I was almost 12 weeks pregnant. In the UK, patients who become pregnant have to often organise or initiate their midwifery care, usually by registering online, and then having a first appointment booked. And as we were first-time parents, we had no idea what the appointment would be like, especially as I’d already been admitted to hospital and received a few early scans. It was actually brilliant – they spent about an hour with us talking through everything, including my past medical history, all the details of my Endometriosis and other conditions (Adenomyosis, Interstitial Cystitis and Pernicious Anaemia) as well as how these might impact on any birth plans I had. We learnt I was not a candidate for a Midwife-Led Unit (MLU) and that I was immediately being referred to a specialist obstetrician to help manage my antenatal and postnatal care better.

Throughout the first and start of the second trimester, my GP practice were on hand to answer any questions we had about medication, and often saw me at the drop of a hat because I wasn’t a straight forward case. My ultrasound scans were done with more care just in case anything related to Endometriosis, such as scars or cysts, were playing havoc. And when I first met my specialist obstetrician, I was amazed at how my care was – they spent ages with me, consulting me on various options of pain medication, birthing options and what to do if things got out of hand. They spoke about work adjustments, what they thought was causing my severe pain and even got another specialist for a second opinion. They’d even requested further operation note details from my gynaecologists as well as requesting a senior surgeon be available if I had an elective or emergency c-section due to my scar tissue.

I’ve also been admitted to the maternity hospital 3 further times since I reached 16/17 weeks – once for bleeding and pain, and twice for severe pain – and each time it was my complex history that made them be that bit more attentive (apart from the bleeding occasion, the male junior doctor I ended up seeing on the ward was useless). Even when we’ve had simple questions about medication or something baby-related, they midwives and consultants have been available at the end of the phone.

But probably the most challenging part has been relating to medication. Because they do not perform trials or studies on pregnant women, there is only a handful of medication that is deemed safe for mother and baby. For example, paracetamol is so widely used (and so weak, for want of a better word), it can be taken regularly throughout pregnancy with no worries to the unborn baby. But anything stronger such as the opioid group of medication (which includes codeine, dihydrocodeine, tramadol, morphine) is avoided. Why? Because there is a risk that the baby can become dependent on the opioid and thus experience withdrawal when born, but also the side effects from these medications like drowsiness can be experienced by the baby too.

Taking medication during pregnancy is a truly personal choice. Some medication for some health conditions is required to prevent adverse outcomes, whereas others can be stopped for the 9 month period with no harm to the mother. I guess I’m kind of in the middle – without my pain relief (and I can assure you that I am not taking opioids unless it is absolutely necessary) my life is very much affected, not to mention the stress that being in pain puts on the baby. Basically, it’s something that should be the decision of the mother and they should face no judgement.

So, here are some tips for managing any long-term illness(es) whilst pregnant;

  1. If you’re trying or planning to get pregnant, and have a long-term illness which affects fertility (such as Endometriosis or PCOS), make sure you inform your GP as soon as you start trying. Why? Because here in the UK, you have to have been trying naturally for between 1-2 years (dependent on postcode, Clinical Commissioning Group (CCG) and health condition), and this time is taken from the time your GP is aware you have been trying.
  2. If you’re planning a pregnancy, it’s worth having a GP appointment to check if any medication needs to be stopped or adjusted. If it’s a surprise pregnancy, just make an appointment sooner rather than later.
  3. Make sure you have plenty of home comforts and any medication you might require in the first weeks of pregnancy, just in case you suffer with really bad morning sickness, fatigue or any other pregnancy problems – there is nothing worse than having to venture outside of your house when you’re trying not to be sick!
  4. Keep loved ones/close ones informed of how any illness(es) may affect pregnancy, or even how pregnancy may affect your illness(es).
  5. Just because you are pregnant doesn’t mean you can’t see your regular consultant or specialist, especially if its urgent! I’d personally keep any appointments you had coming up, as not only is it good to let them know you’re expecting, but they might have some helpful advice
  6. If you were due any operation or surgery before you fell pregnant, make sure you inform the waiting list coordinators or department, clearly stating you are pregnant. If you’re wondering why this is important, then it’s because for NHS patients, if a surgery date is turned down between 1-3 times (yet again it’s postcode and CCG dependent) you will be taken off the list. I was due the main operation to have my sacral nerve stimulator fitted and then I became pregnant, and by talking to the waiting list boss, all I need to do is call them when I’ve given birth and I’ll go back on the list at the same place I was (it basically avoids any additional waiting )
  7. If you find your symptoms change or you develop new ones at any stage in pregnancy, make sure you keep your GP informed
  8. Make sure you provide your midwifery team with as much detail as possible regarding your health at your first appointments. Sometimes you can do this beforehand when completing the forms to book on with a midwife.
  9. Let your employer know you may require additional maternity appointments. In the UK, employees are entitled to paid time off for maternity and maternity-related appointments.
  10. Finally, look after yourself just that little bit more – it’s exhausting enough growing a tiny human, but even more so when you may not be in the best health. There is no shame in needing extra help, taking time off work or simply having a nap!

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