Health

‘It was like I was being stabbed in the boobs’

When Caroline Goldstein started to breastfeed her first baby, she didn’t expect her Raynaud’s condition to leave her in excruciating pain or turn her nipples blue. As part of World Breastfeeding Week, Caroline tells her story about breastfeeding with Raynaud’s disease

If you were to ask some mothers what it feels like to breastfeed, many would probably find it hard to put in to words. Some may describe it as the most precious time, where they can experience comfort and closeness with their beautiful newborn baby, while others may describe it as relieving, relaxing or even satisfying.

But for Caroline Goldstein, a former hospital doctor, breastfeeding caused nothing but excruciating pain and discomfort.

Caroline and her family, breastfeeding with raynaud's, by healthista
Caroline lives at home with her husband and two children Credit: The Photo People

Caroline, 35, who lives in Bristol with her husband and two children, knew something wasn’t right when she began to breastfeed her first child. Instead of being able to fully embrace motherhood, she was left in unbearable pain with her nipples turning, white, then blue leaving her horrified, confused and in excruciating pain.

‘It was like being stabbed in the boobs,’ she says, ‘Your boobs are not normally painful – everyone knows what it’s like to smash your finger in a door but most people don’t know what it’s like to have painful nipples. It’s unbearable.’

It was like being stabbed in the boobs

When breastfeeding, Caroline was overcome with intense and sudden spasmodic pain and was shocked by the unusual colour change in her nipples. So like any mother, she headed straight to the GP to try and understand why feeding her child left her in agony.

‘I went to the doctors and said ‘this is really hurting and my nipples are going white.’

woman holding boob in pain, breastfeeding with raynauds, by healthista.
Caroline had painful breasts and her nipples changed colour

At 20 years old, Caroline found out that she had been suffering with Raynaud’s disease- a condition that is as common as hayfever and arthritis. Raynaud’s affects one in six Brits, yet just four per cent of people can confidently identify the symptoms.  The condition affects the blood supply in the body’s extremities when exposed to changes in temperature or stress, causing skin colour to change to red, white or blue and hands and feet to feel cold, painful and numb.

However, as the most common symptoms of Raynaud’s include colour change, tingling or numb sensations and stinging or throbbing pain in toes and fingers, Caroline did not think to relate her pain from breastfeeding to her Raynaud’s condition.

‘Even then I didn’t realise. When you’ve first had a baby you’re so brainless, you’re so tired and you’re not thinking straight. it took a little while to twig what was going on, and the health visitors didn’t know, so that didn’t help.’

When you’ve first had a baby you’re so brainless, you’re so tired and you’re not thinking straight.

After her visit to the doctor’s, Caroline was told that she had thrush in her nipples, leaving her bewildered and confused.

‘It’s really common that people go to the GP with Raynaud’s, the GP says it’s nipple thrush and treats them for thrush,’ she explains.

Caroline – who is a former doctor herself – explains that the nipple thrush and Raynaud’s confusion can often be a common mistake.

‘Nipple thrush causes stabbing pain in the breast and sore nipples, especially when a baby latches on, so I guess that’s why people think it’s thrush.’

Many women who breastfeed are prone to nipple thrush, as the yeast that causes it feeds off of warm, moist environments. When breastfeeding, the nipples are constantly damp from the baby’s mouth and the breast pads that prevent leaking and keep the area moist.

Caroline explains that because nipple thrush is so common and more recognised amongst health professionals, it’s the first thing people think of.

However, she also explains that unlike Raynaud’s, nipple thrush doesn’t cause colour changes, which should make it easier to tell the difference.

‘People think if the treatment hasn’t worked once, try it again, rather than if the treatment hasn’t worked once, maybe you’re treating the wrong thing.

‘That should be a warning sign that it’s Raynaud’s but GPs don’t think about it. So the next time I went back to the GP I insisted I saw somebody more experienced.’

The doctor explained to Caroline that he had seen a similar case in just one other person. He told her to look up her symptoms on Google and to come back for the treatment.

‘I went away and looked it up and five minutes later I was thinking, ‘I can’t believe I didn’t think of this myself,’ remembers Caroline.

baby-and-mum-tired-and-asleep-breastfeeding-with-raynauds-by-healthista
Most women are too tired to realise that they may have Raynaud’s

Raynaud’s is usually triggered by cold temperatures, stress and anxiety and the condition occurs as the blood vessels go in to temporary spasm and block blood flow. As a result, the affected area changes colour to white, blue or red. Numbness, pain and pins and needles can also be a symptom.

Although Raynaud’s is most common in hands and feet, it can also affect the ears, nose, lips and nipples. Women who have Raynaud’s in their fingers and toes can later go on to develop it in their nipples when they become pregnant or breastfeed.

Breastfeeding can be a challenging trigger for Raynaud’s as having constant cold, wet nipples, trying to get a baby to latch on as well as the use of cold, wet breast pads can all be a recipe for disaster.

‘I think one of the reasons nipple Raynaud’s isn’t diagnosed more is because people just say ‘you know what I’ve had enough, I can’t do this anymore’ and stop feeding and switch to a bottle. It’s really sad, a lot of people really want to breastfeed and it’s so easy to treat, so it’s really sad when stuff like that happens.’

It’s really sad, a lot of people really want to breastfeed and it’s so easy to treat

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Although Raynaud’s is common, only a small number of patients go on to develop a more serious connective tissue disease called scleroderma, which can cause disability and can be life-threatening, which is why it is important to be diagnosed early on, so that any complications of the condition can be properly treated.

Luckily, Raynaud’s has a straightforward treatment and can be temporarily cured with a drug called nifedipine which relaxes the muscles of your heart and blood vessels and lowers blood pressure.

‘It treats it virtually overnight,’ says Caroline, ‘you take this one drug for two weeks and it cures you for that season. It tends to only last that season, it’s not like you take the drug and that’s it for the rest of your life.’

holding-medication-in-hand-breastfeeding-with-Raynauds-by-healthista.
Caroline experienced some side effects from Raynaud’s medication

However, Caroline did experience some side effects from the medication the second and third time she used it.

‘I naturally have low blood pressure, so being on a drug that causes low blood pressure was a problem. I was light-headed and felt a bit faint a few times,’ remembers Caroline. Luckily, she only needed to take it for a fortnight to get her through a cold season. ‘But with my second baby I took it once, felt awful and stopped using it. Instead I just made sure I avoided sudden temperature changes or prolonged exposure to cold and that was okay.’

Before experiencing Raynaud’s in her nipples, Caroline spent years battling Raynaud’s in her hands and feet without knowing that they could be cured.

As a result, in order to avoid an attack, Caroline would go out of her way to try and avoid being cold altogether.

‘I have really good snow boots and I wear ski socks when other people wear normal socks,’ she explains, ‘I wear knitted gloves underneath and then I put on fleece mittens on top with the flip top – that means that I can use my fingers.

‘You just have to be careful, you know what sets you off so you just avoid it or you’re sensible. It can be silly things, like getting stuff out the freezer, I get my husband to do that for me.

‘You just have to be careful, you know what sets you off so you just avoid it or you’re sensible. It can be silly things, like getting stuff out the freezer, I get my husband to do that for me.

Raynauds attack, breastfeeding with raynaud's, by healthista
Raynaud’s in the hands
Credit: The Photo People

 

 

 

 

‘The reason it happens in your hands and feet is because your hands and feet are what gets cut off when the body tries to preserve its temperature’, she explains.

 

 

 

 

 

 

 

‘You just incorporate little tactics in to your life so you don’t even think about it anymore.

‘You can’t let it get too big of a deal otherwise you constantly focus on it.’

So, how has living with Raynaud’s changed Caroline’s life?

‘It’s definitely more lifestyle changing than life-changing,’ she said, ‘but once you’ve got used to it, once you’ve done it, you just do what you do. It’s just literally anything you can think of, you just pick up ideas along the way.’

warming up hands in gloves and hot mug, breastfeeding with raynaud's, by healthista.
Caroline would normally wrap her hands around a hot mug after an attack

From insulating the back of her house to wrapping her hands round hot mugs to always sleeping with socks on, Caroline has truly learned the ways to adjust her lifestyle accordingly.

‘I’ve just stopped feeding my second child and second time round wasn’t nearly as bad because I had all of the tactics in place and I’d barely used the drugs, because I got used to the lifestyle changes’, she said.

‘With breastfeeding, the worst time is when the baby comes off the breast. Suddenly I’ve gone from body temperature to whatever the room temperature is, so I’ll have this sudden thing when the baby comes off, of absolute screaming agony,’ she says. ‘I just have to make sure that doesn’t happen. I do my best to keep covered up and keep a blanket over me and the baby.’

You’ll have this sudden thing when they come off of absolute screaming agony, so you just have to make sure that doesn’t happen.

Caroline is now working alongside Scleroderma and Raynaud’s UK (SRUK) campaigning and raising awareness of Raynaud’s to ensure that medical practitioners are able to spot the signs, so that people – especially women, don’t have to suffer in silence.

‘Talking about my boobs in public is not something I do very much,’ she explains, ‘but actually since having Raynaud’s in my breasts, I have been making a point of telling everyone I can think of. It really should be something that certainly midwives, health visitors, GP’s, obstetricians, know about.

‘It’s the frontline staff that need to know. When you have a baby and you’re having trouble breastfeeding, who do you go to? It’s those people that need to be able to spot it and do something about it.’

And we agree, if you’re breastfeeding and you are in pain, then something isn’t right and you should seek help from a professional.

‘It’s just trying to raise awareness and get people to understand that it’s not recurrent thrush, it’s something very specific.’

Caroline and her children, breastfeeding with Raynaud's, by healthista
Caroline and her children Credit: The Photo People

 

 

RAYNAUD’S DISEASE: WHAT IS IT

Raynaud’s disease causes some areas of your body, including fingers, toes, nipples, ears, lips and nose, to feel numb and cold when exposed to cold temperatures or stress. In Raynaud’s disease, smaller arteries that supply blood to your skin narrow, limiting blood circulation to affected areas.

It happens when the blood vessels go in to a spasm and block the blood flow.

A Raynaud’s attack can be very uncomfortable and painful and make everyday tasks, like buttoning a jacket or unzipping a purse difficult.

 

 

 

 

WHAT ARE THE SYMPTOMS?

  • Cold fingers or toes
  • Colour changes in your skin in response to cold or stress – white, red and blue
  • Numb, prickly feeling or stinging pain upon warming or stress relief

WHAT CAN BE DONE?

In many cases, it is possible to control Raynaud’s yourself by avoiding cold temperatures. Stopping smoking can also improve symptoms, as smoking can affect your circulation.

If you’re unable to control your symptoms yourself, then a medication called nifedipine is available to take for a fortnight during the winter season, however it doesn’t cure Raynaud’s permanently.

 

For more information about Raynaud’s, visit sruk.co.uk

For more information about World Breastfeeding Week, visit worldbreastfeedingweek.org

 

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