medication

How To Decide Whether To Have Surgery/Radiation/Take the Medication…

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I’m a member of lots of Facebook support groups for people with pituitary tumours and other chronic or long-term illnesses. One of the most common types of post is people saying they’re not sure whether or not to go through with whatever treatment has been recommended by their doctor. It’s a big decision, and not something that strangers on the internet can really answer for you! But that doesn’t mean there isn’t any process or technique you can use to make healthcare and treatment decisions… That’s why I’m writing this blog.

I want to share a process I learned doing National Childbirth Trust classes when I was pregnant, which I think is a great technique to follow to help you make these kinds of decisions. It doesn’t have to be restricted to use in healthcare settings, either.

The process is called “BRAIN” and it’s an acronym to help you to remember the questions you should ask about your recommended treatment. You should consider:

  • Benefits – what are the possible benefits of this treatment?
  • Risks – what are the risks of doing this?
  • Alternatives – what alternative options are there? Why are they not the recommended option?
  • Intuition – what does your gut feeling tell you?
  • Nothing – what would happen if you don’t do anything?

I think this provides a really great format to have a constructive conversation with your healthcare provider, and to ensure that you’re fully informed about your treatment. It can be helpful to take this list to your appointments so you can work through each question when you see your doctors (if you’re anything like me, you forget what you want to ask if it’s not written down!), to inform your treatment decisions.

I’ve also written previously about my experience of pituitary tumor surgery and making the decision to go ahead with surgery (twice) – you can read about that here.

birth · health · post-partum · pregnancy · thyroid

Could You Have Post-Partum Thyroiditis? I Do!

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Any regular readers of this blog will know that for a few months now I’ve had some mysterious medical issues that my doctors have been somewhat baffled by. I’ve had blood tests, an MRI of my pituitary, and a scan of my thyroid with radioactive technetium. Despite being told at the hospital that the results of my scans would be available within a couple of days, it took a month before anyone actually got back to me with the results. I tried to take that as a sign that it wasn’t anything incredibly serious, but anyone who’s had extensive dealings with my hospital’s admin systems would know that you wouldn’t want to stake anything particularly important on their effective functioning (like, say, your long term health…)

Anyway, I finally heard from a doctor, and he confirmed that they believe I have a condition called post-partum thyroiditis. Even though I already have a pre-existing thyroid condition, I’d never heard of this quite common post-pregnancy thyroid illness. So what is post-partum thyroiditis?

Post-partum Thyroiditis

What is post-partum thyroiditis?

Long story short, this is caused by your thyroid gland going a bit haywire due to a rebounding immune system after pregnancy. It typically starts with having thyroid hormones that are too high (hyperthyroidism) for a few months. Then it either just returns to normal, or the thyroid hormones dip too low (hypothyroidism) for a few months – or even permanently.

How would I know if I have it?

Post-partum thyroiditis is actually quite a common condition with around 5 – 10% of women experiencing it, although a lot of the time the symptoms are just ascribed to normal post-pregnancy recovery. Most women initially experience hyperthyroidism – symptoms can include a racing heartrate, anxiety, tiredness, difficulty sleeping, achey muscles, twitching or shaking, feeling hot or sweating a lot, and weight loss. Obviously most of those could easily be ascribed to the post-birth recovery period and/or sleep loss thanks to your new baby.

The only way to know for sure if you have post-partum thyroiditis is to have blood tests to check your thyroid hormone levels. So if you’re concerned that you may have this condition, please make sure you speak to your doctor about it.

How is post-partum thyroiditis treated?

Hyperthyroidism as a result of post-partum thyroiditis (let’s just call it PPT) is not usually treated beyond beta blockers to reduce the impact of the symptoms of fast heartrate, anxiety, etc. Conveniently, I’m already taking beta blockers as my doctors tend to prescribe them at the first sign of hyperthyroidism, as my heart loves to go too fast and will take literally any excuse to do so.

Hypothyroidism might need to be treated with replacement thyroid hormone if it becomes severe enough. I’m hoping we don’t have to go there.

How long does postpartum thyroiditis last?

How long is a piece of string? Unfortunately, it seems that postpartum thyroiditis is a very variable condition and each woman has a different experience, so there’s no way of saying how long my postpartum thyroiditis will last. It could be a few months, a year, or even longer – sometimes the side effects are permanent.

What are the risk factors for postpartum thyroiditis?

The big question for me was whether my existing pituitary condition (which affects my thyroid) creates a risk factor for postpartum thyroiditis. A quick Google indicates that I’m not the only person with a TSHoma to go on to develop post-partum thyroiditis. But because my pituitary tumour is so rare, when anything out of the ordinary happens the doctors don’t really know what to expect. However, previous history of thyroid issues is a known risk factor for post-partum thyroiditis, as is a history of auto-immune illness.

What are the implications for me personally?

It’s just a case of wait and see, and hope I don’t end up with low thyroid levels, as that could make things complicated in terms of treating it and my pituitary tumour. So please keep your fingers crossed for me!

In the meantime, I’m back to monthly blood tests to monitor my thyroid level and regularly checking in with the hospital.

Are you a postpartum thyroiditis patient in the UK? I’d love to hear about your experience! Let me know in the comments.

asthma · birth · health · pituitary · pregnancy

My Experience of Asthma in Pregnancy and Birth

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Well, I’ve written about my experiences with hypermobility in pregnancy and birth, and again about how my pituitary tumour impacted my pregnancy and birth. So it seems logical to write about how my asthma impacted me as well, and complete the trilogy… How did pregnancy affect my asthma?

My Experience of Asthma in Pregnancy

But I’ve been in two minds about writing this post, because actually my asthma barely affected me at all! In fact I noticed a massive improvement in my asthma symptoms while I was pregnant. Normally they’re worst around June; my asthma seems to be particularly triggered by hayfever and then made worse by humid weather. Last year when I was pregnant, I spent the end of May in Japan at a family wedding, and when I got back I realised my asthma seemed much better than usual. Seems strange, huh?

Does pregnancy make asthma better or worse?

I spoke to my asthma nurse about this recently when I went for a review (she’s the best! Shout out to all the awesome asthma nurses out there). She said that roughly a third of people with asthma notice an improvement of their symptoms in pregnancy, a third notice a deterioration, and for the rest there’s no change. So I guess I was one of the lucky 33%. I felt so crap being pregnant anyway, I’m so glad I didn’t have to deal with my asthma playing up too.

Why does pregnancy affect my asthma?

Looking online, there are plenty of asthma sites which also advise that asthma may improve or worsen in pregnancy. But none of them seem to explain why. I assume it’s the usual “pregnancy hormones” explanation, which is so vague as to be no explanation at all. So I’m awarding a gold star to any health professional who can let me know in the comments below why specifically it is that asthma is so variable in pregnancy!

Does asthma affect you when giving birth?

I also didn’t find that my asthma affected the birthing process, fortunately. As I have exercise-induced asthma, I did wonder whether labour could trigger my asthma at all. I took my inhalers to the hospital with me (make sure you have spares in your hospital bag just in case!). But luckily, I didn’t need them during the birth.

In fact, apparently asthma attacks during labour are very rare, which is believed to be because of the natural steroids that your body produces during labour. The Asthma UK website has more information about asthma and birth, which may also reassure you.

What were your experiences of asthma during pregnancy and birth? Let me know in the comments!

birth · health · medication · pituitary · pregnancy

My Experience of Pituitary Tumour and Pregnancy

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I’ve already written about my experience of hypermobility and pregnancy (and birth!), so it feels like time to write about my experience with my pituitary tumour (pituitary adenoma).

My Experience of Pituitary Tumour And Pregnancy

Before trying for a baby

My husband and I went to talk to my endocrinologists about the possibility of trying for a baby over a year before we actually wanted to start trying (we had a wedding in between!). And it was just as well we did, because there was a lot of planning involved…

At the time, I was taking a medication called Somatuline Autogel (lanreotide) for my pituitary adenoma. There’s no data on its safeness (or otherwise) in pregnancy, and in fact it isn’t even technically licensed for my condition. I have a pituitary tumour which produces thyroid stimulating hormone (TSHoma), and they’re so rare that there actually isn’t any medication licensed for the condition. However, I’ve taken lanreotide on-and-off for nearly ten years, and fortunately it always worked well to control my symptoms.

But because it’s not known how safe lanreotide is in pregnancy, my doctors were keen to see whether I could manage without the medication during a pregnancy – or whether my thyroid levels would start going up again. So I agreed to do a trial period off the medication. All went well for a couple of months, and then I could feel my symptoms coming back, and blood tests confirmed that my thyroid levels had risen again. So, a new plan was needed.

My doctors then suggested trying cabergoline, a drug that’s used for a different kind of pituitary adenoma called a prolactinoma. They estimated to me that, based on their previous experience, there was about a one in five chance of it working for my tumour as well. And although cabergoline is not licensed for use in pregnancy, there have been more case studies etc. of women using it in pregnancy, so my endocrinologists thought it would be a better bet than lanreotide… If it worked for me.

So I have it a go… And it worked! To my surprise, it was just as good as lanreotide, if not better because it’s much more convenient. With cabergoline, I take two tablets per week (weird schedule, I know), whereas with the Somatuline Autogel it was an injection once a month which my husband had to do, and we had to keep the injections refrigerated beforehand. Plus, with Somatuline, because it messes with the function of your gallbladder, I had to eat an extremely low fat diet for 5 days out of each month, which could be a real pain when we were out and about. So not having to do that was a real bonus!

During Pregnancy

During the course of my pregnancy, I had to have blood tests once a month to check on my thyroid levels. Fortunately, they were well controlled throughout the whole time. I also had some bonus hospital visits so my endocrinologists could check up on other symptoms. Because the pituitary naturally enlarges during pregnancy, they like to check up on your visual fields to ensure that between that and the tumour, it’s not putting pressure on your optic nerve.

Planning for Breastfeeding

I really wanted to try breastfeeding, but being on cabergoline meant that could be tricky. Cabergoline inhibits the production of prolactin – the hormone that stimulates the production of breastmilk. My doctors recommended that I stop taking cabergoline six weeks before my due date, to give myself the best chance of breastfeeding, as the drug takes about four weeks to leave your system. Hopefully I would then be able to breastfeed for a couple of months before my symptoms returned and I had to go back on the medication.

So, I duly stopped taking cabergoline at 34 weeks… And then Little Man showed up at 37 weeks, rather earlier than expected! Breastfeeding didn’t work out for us. Although I made colostrum, my milk never came in, and it’s not clear whether it’s because the cabergoline wasn’t out of my system yet, or the stress and separation when Little Man ended up in intensive care for several days.

Planning for the Birth with a Pituitary Tumour

With regards to the birth, my endocrinologists were confident I could have a normal birth. Because the pituitary is involved in producing the hormones that kickstart childbirth, I did ask whether there was any reason to think that I might be less likely to go into labour naturally. But the doctors said that there was no evidence that women with pituitary tumours are more likely to need inductions.

The doctors did specifically write in my notes that I was allowed to have an epidural, as they said sometimes people can mistakenly think it’s not allowed after having transsphenoidal pituitary surgery. They also advised that there should be steroids on hand, to be administered if I experienced any unexplained low blood pressure, in which case an adrenal crisis should be suspected. Fortunately it wasn’t needed.

What advice do I have for other women with a pituitary tumour who are trying for children?

After two transsphenoidal pituitary surgeries, there was always a risk that the function of my pituitary gland had been damaged by the surgery and I might find it difficult to conceive. Fortunately we were very lucky and I was able to get pregnant. Because we knew it might take a while, we planned a long time ahead, and I’d definitely recommend talking to your endocrine team to work out a plan of action well in advance of when you want to start trying to conceive.

Trying me on/ off various treatments took over a year from when we first discussed it, due to delays from the hospital’s administration and us deciding to go back on my regular medication for the three month period of our wedding and honeymoon, to make sure I felt well for it. If we had been actively wanting to start trying for a baby, that would have felt incredibly frustrating and slow. It was frustrating enough even when we knew we didn’t want to start trying until after the wedding!

Do you have any experience of pregnancy and birth with a pituitary tumour which you can share? Let me know in the comments!

Uncategorised

Post-Partum Body Bullshit

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After having a baby, you expect to have a tummy and some weight to lose. That much is expected! But there’s so much weird body stuff that lingers after pregnancy that I didn’t really know about. I suppose that other than the weight, possible stretch marks, and any scars from c-sections or episiotomy etc., I assumed everything else would go back to normal. Oh, how wrong I was!

And even though some of it is minor in the grand scheme of things, I think it’s still okay to find it difficult that your body has changed in ways you weren’t expecting. So, I thought I’d write about it…

Post-Partum Body Bullshit: Weird Stuff Your Body Does After Pregnancy

Post-Partum Hairloss

This one is the worst! I have had issues with hair loss for over ten years, thanks to my pituitary issues. For the last four years or so, since my symptoms have mostly been under control with medication, my hair has been growing back slowly, although it’s still a bit patchy in places. But when I was pregnant, my hair improved so much! It got thick and shiny and generally great. In fact it was pretty much the only good thing about being pregnant (other than getting the baby at the end, obviously!)

Hair tends to get thicker during pregnancy, but not because you’re growing more hair – actually, it’s because it’s falling out less. Strange but true. Of course, what that means is that sooner or later, your scalp needs to catch up on all the hair it would normally have lost during those nine months of pregnancy. Enter post-partum hair loss, which normally kicks in about three months after giving birth.

Even though I know it’s totally normal, I’m still finding it a bit stressful to be pulling handfuls of hair out of my hairbrush on a regular basis. It just takes me back to when my own hair loss was really really bad before my tumor was diagnosed, which was a horrible, stressful time.

Annoyingly, my amazing pregnancy lips, which to be fair also looked great and incredibly plump during pregnancy, vanished almost as soon as Little Man was out! Now I’m back to relying on lipstick again…

Moles and Skin Tags

I’ve always had a lot of moles and freckles, but when I got pregnant they went into overdrive! New moles and skin tags appeared everywhere, often seemingly overnight, and they’re still here four months after having had the baby. They particularly seem to have arisen on my chest, back, and belly. Existing moles have also grown, and in some cases turned kind of scaly (ew, sorry).

The development of moles and skin tags in pregnancy is associated with all the oestrogen sloshing around your body. I’ve had my moles checked over by a doctor and she’s said that the changes appear normal and nothing to worry about. But I can’t help but be unimpressed with this new weird bobbly skin.

Weird Tan Lines

So there’s a thing that happens in pregnancy called the linea nigra, a dark line of hyperpigmented skin that runs down your belly. Typically it shows up around the second trimester, caused by pregnancy hormones oestrogen and progesterone, which stimulate the production of melanin in your skin. You may also notice skin darkening on your face and elsewhere as a result of the same process.

When you read about linea nigra online, most sites say it should disappear a few months after delivery. Well, I’m four months out and mine hasn’t faded a bit despite not getting any sunshine. And there doesn’t seem to be much consensus on what to expect, because some other sites say that the line may take a year to fade – or never go away at all.


As well as my linea nigra, I seem to have developed a patch of unpigmented skin on the right hand side of my belly. I’m quite pale so it’s not super noticeable, but it’s big enough that you can see it if you look for it. I haven’t found anything online that suggests that this is a thing which happens with pregnancy, but it definitely wasn’t there before!

What weird post-partum side effects have you had? Let me know in the comments!

birth · health · hypermobility · pain · pregnancy

My Experience of Joint Hypermobility Spectrum Disorder and Pregnancy

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I thought it might be useful to write a post about my experience of Hypermobility Spectrum Disorder (formerly known as Joint Hypermobility Syndrome, apparently rheumatologists like renaming stuff) during pregnancy, as I would have found it helpful to read something like this when I was pregnant!

What is hypermobility spectrum disorder?

Basically it’s an overarching term for a group of conditions relating to joint hypermobility – i.e. in simplest terms, your joints extend more than they’re supposed to. I was diagnosed with it when I was 17, although at that point they called it joint hypermobility syndrome.

I actually meet the diagnostic criteria for a condition called hypermobile Ehlers-Danlos Syndrome (hEDS) although I’ve never been formally diagnosed with it. I did once see a dermatologist about something totally unrelated, and as it turns out he specialised in the dermatology of hEDS and was very excited to run a bunch of tests on my skin.

Hypermobility Spectrum Disorder and Pregnancy

How can hypermobility affect pregnancy and birth?

I was referred to an obstetrician once I was pregnant, thanks to all my stupid medical conditions, and she discussed the key potential issues from my hypermobility spectrum disorder and pregnancy, which basically are:

  • Risk of the birth progressing quite quickly once you reach 4cm dilated.
  • Risk of poor or slow wound healing.
  • Risk of resistance to local anaesthetic.
  • Risk of waters breaking early.
  • Risk of additional pain during pregnancy due to the extra weight and hormone changes placing stress on the joints.

So which of these issues did I actually encounter? I’ll go over them in order…

Increased joint pain during pregnancy

Oh boy did I get this one. It actually started very early too, around week 12 or 13 – well before any significant weight gain, so I assume the issue was caused by the hormone relaxin, which your body produces during pregnancy and causes joints to loosen. If you already have loose, hypermobile joints, that’s not great.

You’re recommended to sleep on your side during pregnancy, but I found that when I slept on one side, the hip on the bottom would gradually partially dislocate during the night and it would eventually wake me up with the pain. Then I’d swap sides, and it would repeat on the other side. By the end of the night I would only be getting maybe half an hour on each side before the pain woke me up, and my joints were so sore and stiff in the mornings. It was not fun, and it got worse as my baby bump got bigger.

I did, however, find that physiotherapy really helped. I saw a great NHS physio who have me exercises to strengthen the muscles around my hips and it made a massive difference to my pain levels, although it didn’t cure it completely.

I’m now four months out from the birth and I would say that although the sleeping pain resolved basically as soon as I have birth, I can feel that the pregnancy has had a lasting effect on my left hip joint, which feels noticeably less stable and more often painful than previously.

Premature rupture of membranes

My waters broke at 36 weeks and 5 days, which is technically premature, but only just (37 weeks is technically full term). Premature rupture of membranes (waters breaking early, if you’re not a doctor) is a risk of hypermobility, so it’s possible that it was related.

Hypermobility and rapid labour

I didn’t go into labor naturally but was induced due to my waters breaking. I was put on the syntocinon drip and told to expect to progress by dilating about half a centimetre per hour. The midwife said she would check on my dilation at about the four hour mark, and that she expected me to progress about half a centimetre dilation per hour.

Two hours later I was in massive amounts of pain, they weren’t letting me have gas and air (because they said you had to be 4cm dilated first) and I felt that I definitely couldn’t cope with another 12 hours or more of it, so I asked for an epidural. The midwife put in the request, but the anaesthetists were in theatre so it wasn’t going to happen any time soon. Shortly afterwards, I got the very distinct feeling that my body was starting to push. I told the midwife but she didn’t seem that bothered. Fortunately, my husband then insisted that she check how dilated I was. She had a look, realised I was fully dilated and that I was indeed pushing.

Then it was panic stations! The midwife apparently had to write loads of stuff on the computer at this point, and thus had to call in a second midwife to take over with me.

Although the dilation stage had happened really quickly, the pushing stage did not. Fortunately they did let me have gas and air at last, which helped a lot with the pain.

They wanted the baby out within two hours of starting pushing (not sure if this is standard or due to the fact my waters had broken a long time before and they were worried about infection). At some point, a doctor appeared and said that if I didn’t make good progress in the next two pushes, they were going to do an emergency caesarian. Seemingly I did make enough progress, because she went away again. Then, some time later, a couple of other doctors appeared and said I had two pushes before they would do a ventouse (suction cup) delivery.

Resistance to anaesthetic

In order to get the baby out, they had to do an episiotsomy, which then needed stitches. They gave me local anaesthetic before the stitches, but it really didn’t work, I kept telling the doctor doing the stitching that I could feel it. So I guess I did have the resistance to local anaesthetic issue.

They didn’t seem to be clued up on my hypermobility and the plan to manage it during the birth, because they also used the normal dissolvable thread for the stitches, instead of the silk sutures I was supposed to have, to assist in case of poor wound healing. The dissolvable stitches were okay for me in the end fortunately. One stitch broke, but that could have been because I did so much walking to and from the neonatal intensive care unit in the week after Little Man was born (he developed a very serious case of jaundice and had to go into NICU). I didn’t notice any issues with healing, thankfully.

To be fair, the mess up with the stitches and the insufficient local anaesthetic may have been due to the fact that after Little Man arrived, I had a big post-partum haemorrhage. The alarms went off and lots of doctors and nurses suddenly appeared in the room, luckily I didn’t need a blood transfusion but was put on a drip and super woozy. So it was all a bit crazy in the delivery room, and I can see how things were missed. But I did think it was disappointing that, despite having flagged a lot of these potential issues well before the birth, we were still left with them not being managed very well – especially the rapid labour. Looking back I am annoyed that I was in so much pain with no pain relief and they didn’t even think to check my dilation to see whether things had progressed further than they were expecting.

What advice do I have for other hypermobile mamas-to-be?

If you’re pregnant and have hypermobility or hEDS, I recommend flagging it early to the hospital, but being prepared to advocate for yourself in the delivery room. It’s hard to do when you’re actually in labour yourself, so make sure your birth partner knows about your hypermobility and how it can affect pregancy and birth, and that they’re confident to advocate for you. I dread to think how long I would have been pushing before they thought to check my dilation, if it hadn’t been for my husband advocating for me.

I also highly recommend physiotherapy, as early in the pregnancy as possible. A lot of hospitals have long waiting lists for physio, so try to get on the list as early as possible.

Are you a mum who’s hypermobile? Let me know about your experiences with pregnancy and birth in the comments!

coronavirus · health · pain · pituitary · top tips · Uncategorized

Coping With Pain When You Can’t Use Painkillers

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Firstly, I want to make it totally clear that I’m not advocating that people shouldn’t use painkillers to manage pain. But thanks to the current coronavirus lockdown, I’ve had a couple of situations where I couldn’t use my normal painkillers, and it got me thinking about coping with pain when you can’t use painkillers.

I have chronic pain from my hypermobility spectrum disorder that flares up now and then, especially when the temperature changes rapidly from hot to cold or vice versa. Usually if it gets particularly bad, I take ibuprofen (Advil, for any Americans). However, since France issued a warning about using non-steroidal inflammatory painkillers during the covid 19 pandemic, I’ve tried to avoid taking it even though the evidence is not really clear either way.

Then I also have an issue with very bad sinus headaches, which is a hangover from two lots of brain surgery done via my nose (transsphenoidal surgery). They get so bad that they also have the fun side effect of making me very nauseous, to the point that I have actually thrown up from them several times. They are aggravated by pollen/hayfever, so tend to get worse at this time of year. Normally, I would take paracetamol because ibuprofen doesn’t work for them… But we don’t have much paracetamol in the house, and it’s been hard to get hold of lately with the coronavirus panic buying. So again, I’ve been trying to avoid taking painkillers.

And so, I thought I’d write a post about some of the ways that I find helpful for coping with pain (especially joint pain, because that’s my most common issue). They probably won’t work for everyone, or every type of pain, but I hope you might find it useful anyway.

Coping With Pain When You Can’t Use Painkillers

1. Heat

I find that heat is so great for managing my joint pain. Pre-baby, I would often try to have a bath or at least a hot shower if they were playing up, as it helps the pain so effectively that I often wouldn’t need to take painkillers at all. Now I have a three-month old baby, I can’t just run off for a bath at the drop of a hat (sadly). So I use a hot water bottle or (preferably) a microwaveable wheat bag. Extra layers also works, but while it’s easy to put extra pairs of thick socks on if my ankles or feet are hurting, it’s not so easy to layer up and warm up a hip joint.

Conversely, ice can also help certain types of pain, especially sports injuries.

2. Breathing Exercises

When I was pregnant, I did an online hypnobirthing course with The Positive Birth Company. Well, actually I did about 60% of the course, because I was totally caught out by Little Man arriving three weeks early. One of the big aspects of hypnobirthing is using breathing exercises to manage pain. I found this really useful when giving birth; I think it’s particularly good for pain which is severe but comes and goes – like, say, having a baby…

3. Distract, Distract, Distract

I always find my joint pain is worst at night, when I’m in bed and trying to sleep. But actually, chances are that it’s not any worse then than it is any other time; it’s just that there aren’t any distractions to take my mind off my poor sad joints. Even something as simple as listening to music or reading a book can help take your mind off ongoing low-level pain. For worse pain, something interactive and requiring concentration is better as it forces your attention away from what’s hurting – like playing a game or reading aloud.

4. Movement and Massage

Probably depends on what’s causing your pain, but for my joint pain, gentle movement is really helpful to take the pressure off my joints. The other day, I was holding Little Man, who was finally sleeping after a very grumpy day (he didn’t poop for three days! Enough to make anyone grumpy I’m sure), and my hips were playing up so badly but I didn’t want to move him! When he eventually woke up, I went to do some chores in the kitchen and the pain in my joints improved significantly just from the movement.

Linked to this, massage can be really great for pain – although obviously some pain locations are more accessible than others.

5. Physiotherapy

Following on from the above, in the longer term, physio can help with some forms of chronic pain. I always assumed physiotherapy wasn’t really very effective, because I’d known a lot of people complain that it didn’t work for them. But when I was pregnant with Little Man, I actually tried physiotherapy for the first time, and I found it incredibly effective.

My hip pain got a lot worse very early on, from the pregnancy hormones (which make your joints looser) and extra weight. It was so bad that I was waking up constantly throughout the night in huge amounts of pain from my hip partially dislocating in my sleep. Then I would swap sides and sleep on the other side for a bit, until that one started hurting and woke me up to swap sides again. It wasn’t fun, although I guess it was great practice for waking up constantly at night with the baby once he arrived! In fact, even on bad nights when he was teeny tiny, Little Man woke me up significantly less frequently than my hips had done throughout my pregnancy.

It took a number of weeks to get an appointment with a physio, but I got there, did a full assessment and got several exercises aimed at strengthening the muscles around my hips, to hold the joint in place better. It was about six weeks of religiously doing the exercises before I noticed results, but the improvement was really noticeable and made such a huge difference to the rest of my pregnancy. So, if you haven’t already – I recommend giving physio a try.

6. Check Skeletal Alignment and Muscle Tension

If this one sounds super hippy-dippy, bear with me. A few years ago, I realised that my headaches (normal headaches, as opposed to sinus headaches where the pain is in the front of my face around the nose and eyes) are often either caused or at least aggravated by tension in my neck and shoulders. It could be from sleeping funny, being crouched over a laptop, or just being stressed and tensing up. Making a conscious effort to relax my neck and shoulders (maybe coupled with a gentle massage) can really help relieve those headaches.

Similarly, with my joints, I’ve realised that when I’m experiencing joint pain the first thing to do is check the alignment of the joint, i.e. are the bones lined up straight or am I sitting, moving or tensing in a way that sends pressure though my joints in an unnatural way. Because I have hypermobility, it’s easy for my joints to partially dislocate or just misalign without me actually noticing, and that can unsurprisingly cause pain.

7. Keep Active

When I was first diagnosed with hypermobility spectrum disorder (as it’s now known), the rheumatologist told me that the most important thing to keep pain at bay was to keep active and build up muscle to support my joints. At the moment, on lockdown, I’m doing yoga pretty much every day with my husband and it’s great exercise that’s very low-impact and thus kind on your joints. I definitely recommend it, and you can find specific yoga flows online that are tailored to particular issues, such as lower back pain or crappy hips (technical term).

Your top tips for coping with pain when you can’t use painkillers:

Do you have any tips or techniques for pain management/coping with pain without medication that work for you? Let me know in the comments below!

Uncategorized

Why No Woman Should Have To Give Birth Alone – Please Sign The Petition

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Today’s blog post was going to be about a totally different subject, but I’ve just seen this petition and I think it’s so important that I want to share and write about it now.

Due to Covid 19, many hospitals (not just in the UK) are restricting the presence of birth partners on wards before and after births, only allowing their presence for women in active labor. However, there is now concern that some hospitals may be considering stopping birth partners from attending at all, and requiring women to labor in hospital alone.

This is a serious cause for concern. Continuous support from a birth partner is associated with improved outcomes for women and babies, including a reduction in the requirement for interventions. Unsurprisingly, it can be difficult for women to advocate for themselves while they are in the middle of giving birth, and they need to have a supportive, trusted person on hand who can do that for them.

One of the reasons I feel strongly about this is my personal experience. When I gave birth, I was induced and I dilated extremely quickly, much faster than the midwife expected. I had been told they would check on my dilation after four hours, and they were expecting progress of about half a centimetre per hour. Until I reached 4cm dilated I was not going to be allowed gas and air, all I could have was paracetamol or an epidural. After 2 hours I was in so much pain that I asked for an epidural as I couldn’t see how I could cope with twelve hours or more of it, but no anaesthetist was available. Shortly after that, I felt my body starting to push, and told the midwife, but she didn’t believe I could be that far along. It was only because my husband was there and was insistent that they check what was going on, that the midwife looked, at which point she realised that I was fully dilated and in the process of pushing the baby out! Cue a massive panic because she was not ready for that stage of labor (and for some reason this seemed to require a lot of online paperwork) but at least I finally got the gas and air. If my husband hadn’t been there to advocate for me, god knows at what point they would have realised the baby was on its way, because I was in no position to have a debate and in the absence of any real pain relief could barely talk.

For some women, the presence of a birth partner and advocate is even more important. Black women are five times more likely to die from complications of pregnancy and childbirth when compared to white women in the UK. Mixed race and Asian women also suffer a higher risk of death. These women are being let down by our health system and the professionals who attend them. They need to have the support of a trusted partner when giving birth, and are likely to be disproportionately badly affected by any ban on attending birth partners.

In America, where some hospitals had already enacted a ban on birth partners, they have been forced to back down after a public outcry. Let’s make sure that a ban of this nature can’t happen in the UK.

The irony is that in the US, the bans were enacted after asymptomatic pregnant women, who were carrying the virus without knowing, infected hospital workers during labour. But restricting the presence of birth partners obviously does nothing to reduce the risk of labouring mothers transmitting the virus – they still have to be in hospital. Instead, we would protect both women, babies and health workers far better by ensuring that UK midwives, doctors and nurses are provided with adequate Personal Protective Equipment (PPE) to protect them from the risk of transmission from women or birth partners during labour. So far the government and Public Health England have been absolutely woeful at ensuring staff are protected with sufficient PPE in line with WHO guidelines. We’ve heard a lot about companies being drafted in to supply more ventilators – but PPE is just as important.

Please sign the petition here: change.orgMe and Little Man