PCOS and Breastfeeding – an Invisible Problem

Polycystic Ovary Syndrome (PCOS) affects¬† as many as 1 in 10 women in the UK. It causes hormonal imbalances, and can affect mood, mental health, periods, weight and infertility. We stopped using birth control in our first year of marriage, but it took 9 years to conceive. I wasn’t offered any help from my GP until we’d been trying to conceive for 8 of those, because there was always “plenty of time”. Information and care for PCOS seems to be an afterthought. It can have a huge affect on women, yet I was offered very little information, no support groups, no treatment, no discussion. I was told to come back if and when we’d had “extensive” problems conceiving to look at the options, and that was that.

Yet that’s not what I want to talk about. There are a lot of women talking about the lack of support for PCOS and it seems like awareness is rising. But here’s something I haven’t heard many people talking about.

PCOS and Breastfeeding

If you are one of the lucky women with PCOS who does get pregnant and gives birth, PCOS can affect your experience as a new mother.

I cried every day for 4 weeks over my inability to breastfeed.

Let’s face it, breastfeeding is hard, but hopefully there will be plenty of support there for you if you need it.

I saw midwives in the hospital, who manually massaged my sore-breasts to express. I saw the community midwife in the home, who gave me lots of tips to increase my volume. I saw a lactation expert who made sure that he was latching on and sucking properly (he was). I talked to my health visitor who said it was affecting my mental health and there was no shame in admitting I couldn’t breastfeed.

Not a single person, not one, ever mentioned my PCOS even though all of them were aware that I had it.

It was me, doing solo research on the internet, who first broached the question, “Could this be relating to my PCOS?” and I received a shrug – yes a shrug – in return. “Could be,” she answered. I started reading about how mothers with PCOS are at greater risk for insufficient milk supply, although some women are fine, and others suffer from oversupply. Women who have a history of insulin resistance (which I do) are most likely to then have insufficient milk supply. PCOS is a condition that has very variable affects on people – but why are none of these potential issues being discussed with women before or after they give birth?

For all the months with my midwife before I gave birth she was told I had PCOS. This is why pregnant women have such extensive medical histories taken. My GP knew I was pregnant and had PCOS. She also knew I’d suffered from depression in the past, especially relating to my infertility, and this made me at a higher risk of post natal depression. But all of these doctors, midwives, health visitors and experts never once supported or prepared me for the fact that I may be unable to breastfeed because of it.

A Norwegian study has recently concluded that “Women with PCOS appear to have a reduced breastfeeding rate in the early postpartum period” after testing at one month, three months and six months post partum. I was encouraged to stop expressing and attempting to breastfeed at 4 weeks, expressing only maybe 1-2 oz per day when my son was drinking 8oz every 4 hours. Had I been encouraged to continue to three months, would my supply have increased? Should that information have been available to me for me to make that best decision? Perhaps I still would have chosen to stop – but armed with that extra information, I might have felt more in control of that decision. Feeling out of control is a major contributor to anxiety.

Milk production in those with insulin resistance can be boosted by metformin, a drug often given to women with PCOS to aide with infertility. This was never even discussed as a remote possibility for me, and I only found this out by doing my own research – after I had stopped breastfeeding and my supply had stopped completely.

Breastfeeding is a big part of an identity as a mother and in the midst of postpartum hormones, being unable to breastfeed successful can bring on severe feelings of failure which can contribute towards post partum depression. This is most likely when a woman planned to breastfeed and is unable to do so for whatever reason. Knowing that there is this potential link, wouldn’t it be better to ensure that those who plan to breastfeed are aware of the potential issues? Preparing women for the fact that they may be unable to breastfeed and supporting them through it is essential and yet it seems largely ignored in the case of PCOS.

I believe that with preparation and support, my post natal mental health would have been improved.

PCOS after birth can change, fertility levels can change, hormonal levels can change, periods can be drastically different and breastfeeding can be affected – our bodies are changing and no one is talking about it. I wasn’t offered any advice about any of these things, even when discussing periods and post partum birth control.

PCOS is an invisible illness that affects women every day, but those who are diagnosed with it should be given information and support, and this includes frank discussions and breastfeeding.

I don’t know if my PCOS ultimately contributed to my insufficient milk supply. I don’t know if it affected my post partum anxiety and depression. The only thing I know is that these facts are out there, this research is being done, but in the UK, doctors, midwives and health visitors are not having these discussions with women who suffer from PCOS. Once again, this illness is invisible.

Please start talking to pregnant women and new mums with PCOS about how it could affect them.

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