Reflections on persistent nipple pain and the times we can't help: letter to another breastfeeding medicine doctor
A presentation of persistent lactation-related nipple pain
Dear Dr Angela,
I've been thinking about the case you mentioned in our Live Network Hour last night - the breastfeeding woman with the nipple pain that has persisted on for weeks and months, despite the multiple treatments other health professionals and then finally yourself, as a very experienced breastfeeding medicine physician, have tried.
I've been thinking about my response, which I worry wasn't adequate!
In the context of a group of health professionals some of whom are still new to NDC, I was wanting to communicate - again - about the fundamental importance of fit and hold and repetitive microtrauma of nipple and breast tissue drag.
I remember multiple situations over many years where I ended up feeling rather silly - definitely operating outside current clinical norms - because I was continuing to raise fit and hold with a woman who was living with awful ongoing nipple pain from breastfeeding her little one. It's easiest to stop being so concerned about fit and hold after the first couple of consultations.
But here are the thoughts that have been running through my mind overnight.
The diagnoses of nociplastic pain or chronic neuropathic pain or neuralgia or central sensitisation in breastfeeding or lactating women conflict with internationally agreed diagnostic criteria for pain
Persistent nipple pain in breastfeeding and lactation is due to inflammation from the acute tissue damage, both epithelial and stromal, caused by high levels of repetitive mechanical forces, both stretching and deformational.
This statement is the hypothesis called 'the NDC mechanobiological model of lactation-related nipple pain and damage', and is shaped by both clinical experience and the interdisciplinary research literature, since there is so little relevant research to draw on in the field of clinical breastfeeding support. It has been peer-reviewed and published (2022).
I've written my analysis and critique of the pain diagnoses of neural sensitisation (nociplastic pain, central sensitisation, hyperalgesia, functional pain) applied to breastfeeding women here and here.
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The fundamental proof of my argument is that both a clinician and her lactating patient know, quite certainly, that once a woman weans her baby from the breast, and also stops mechanical milk removal, that her nipple pain will resolve. The pain may take a little time to settle down, usually a few days or occasionally even a couple of weeks to complete resolution, but we are all confident it will resolve once she stops removing milk. It's the repetitive mechanical forces applied in breastfeeding and pumping which initiate and perpetuate the inflammation.
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A second reason to believe this in the case in your patient is that the nipple pain was somewhat less, though still there, when she pumped. This again points to the effect of mechanical factors: whilst directly breastfeeding she is being subject to worsened or more focussed amounts of stretching mechanical pressure, but these mechanical forces which cause the pain still persist with pumping.
Why our colleagues commonly prescribe medications for persistent nipple pain
In our field of breastfeeding medicine and clinical breastfeeding and lactation support, our colleagues are much more likely to devote substantial time to discussing medications they prescribe for persistent nipple pain, than the techniques of a fit and hold intervention. Our colleagues debate which medications will be help chronic pain and neural sensitisation, extrapolating the important work that has been done in the field of chronic pain management to the persistent nipple pain experienced by too many lactating women.
But this extrapolation
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Lacks pathophysiological rationale in the tissues of the lactating breast and nipple-areolar complex
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Lacks any evidence of benefit - though anecdotally some women might describe some benefit, due to the blunting of emotions and sensations which often accompanies these medications. Professor Joanna Moncrieff, for example, suggests that this emotional blunting, comparable to the effect of alcohol, may be the main mechanism by which SSRIs appear to have an effect. There remains significant controversy about benefits of SSRIs over placebo, most recently analysed in the systematic review she and her team published. My point here is not to debate SSRI use more generally, but to show that there aren't credible reasons to think SSRIs will help with persistent lactation-related nipple pain. (You can read an example of Professor Moncrieff's work here.)
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Unnecessarily risks side-effects,including the withdrawal syndrome of SSRIs.
The dilemma for the patient with persistent nipple pain, of course, is that she has a very powerful desire to breastfeed. I sometimes imagine this as a power bigger than us that is transmitted down ancestral motherlines of Homo sapiens evolution - a hardwired biological drive to breastfeed. She is deeply committed to continue the physicality of nurturing her baby from her body - and she has a 21st century brain which makes the case for the health benefits of breast milk for her baby.
For these reasons, she has been willing to endure terrible ongoing pain as she breastfeeds her baby.
As clinicians, we have a powerful desire to help a patient like this woman, because this is our calling and our professional commitment, and because we feel for her and with her (which is our strength as clinicians).
I wonder if the tendency amongst our breastfeeding medicine colleagues to commence pharmaceuticals in this situation is a way of avoiding the uncomfortable sense of failure that comes with not being able to help. Defining her pain as chronic neuropathic pain or central sensitisation and writing a script preserves our sense of control as a doctor, and shifts our relationship with the patient to a new focus, in which we maintain the capacity to do something which seems professional - monitoring the dose, the side-effects, monitoring for any apparent changes in her experience - all of this preserves our personal sense of empowerment. It doesn't feel foolish, for instance, to write a script and see how the medication goes. Instead, it feels as though we're still being effective.
I have felt rather silly sometimes continuing to offer fit and hold support
And persisting on with fit and hold can feel a bit silly. I've felt that in myself. And needless to say, I've also been subject to derisory public comments from high profile colleagues in our field about my clinical commitment to exploring fit and hold as something fundamentally important to breastfeeding medicine and clinical breastfeeding support. One written response to my contribution on this which has stayed in my mind stated something like in a closed but international forum of colleagues: doctors don't go to medical school and then train in our area of medicine and then in our area of special interest in breastfeeding medicine just to focus on latch and positioning.
Yet in my own mind (and this is what I was trying to communicate last night), I never give up on supporting that woman's skilful use of fit and hold strategies and the micromovements, for as long as she is comfortable with me continuing to review this. I think there will come a day when this kind of emphasis on fit and hold and elimination of breast tissue drag is mainstreamed as professionally competent, necessary and responsible, the only right thing to do (for as long as she is comfortable with it.) I don't believe there should be a role division which leaves fit and hold work to our non-medically trained colleagues, because fit and hold is fundamentally a part of any holistic intervention we make as breastfeeding medicine physicians and clinicians. It can't be split out of the whole mother-baby case and delegated to others (unless we are certain that our colleague intervening with fit and hold intervention is on the same page exactly, which in my mind means NDC Accredited, and very experienced in a gestalt intervention).
As we were saying last night, I also don't however want a breastfeeding woman to feel under any pressure from me, or to feel that she has to persevere with our fit and hold work together because I'm invested! So I am at pains to check in regularly, to be sensitive, and respectful of where she is at, to pull back the minute she suggests she's done with thinking about fit and hold. To completely and thoroughly let it go, and never raise it again, never even glance at how the baby might be feeding in consultations.
Yet it is the constant thinking about fit and hold as she breastfeeds, the paying attention to nipple sensation, and the constant experimentation with micromovements throughout the feed - that is her best chance of resolving the pain. It's the paying attention over and over to her own physical sensations.
I try to directly and carefully address this at the beginning, acknowledging to her that women in her situation (in their extraordinary devotion to their little one's needs) have typically managed to breastfeed this far by dissociating from their bodily sensations, by dissociating from the experience of pain. So it can be hard to pay attention to it.
I acknowledge that this is different to the emphasis she might receive elsewhere. I also explain up front that in a situation like this, I get the best results if I'm able to follow up with her a few times.
Fit and hold in breastfeeding remains a frontier
Mechanosensing and mechanobiology are new fields in biology and health, which address the way mechanical forces impact upon living cells and tissues. It should be - and is in NDC - fundamental to clinical breastfeeding and lactation support.
But the impact of mechanical forces in clinical breastfeeding and lactation support remains a frontier.
This woman clearly has persistent inflammation, either epithelial or in the nipple stroma, or probably both, that is causing nociceptive pain (dermal and stromal) and also possibly acute neuropathic pain (peripheral nerve irritation in the nipple stroma). It results from the effects of stretching or deformational mechanical forces on the cells and tissues of her breast - specifically, her nipples.
Clinical fit and hold intervention is not yet valorised as consummate clinical skill, as an art as well as a science, as genuinely holistic body work with the complex adaptive system of the mother and baby, as something we should all (as clinicians) be constantly proposing to work with in our consulting rooms when a woman has nipple pain. As something that we need to devote time to, often over and over, when we are working to help a breastfeeding woman.
Practice self-compassion strategies for ourselves when we are unable to help, and share self-compassion strategies with our patient
As a younger doctor, I could fret a lot when I 'failed', and was unable to help a patient. I still can today. Mostly, I used to worry that if I'd done something better, if I was a better doctor, she might have recovered.
The older I've got, the better I've become at accepting that so much in life and also in my professional work is outside my control. Obviously I continue to try to offer the best professional service I can, whenever I can.
But there are so many things in life that are so much bigger than me. And also, I too have my limitations and sometimes I might fail when someone else might have succeeded. I've got better at accepting my own limitations, too. I just do my best, and that's all I can ever do, actually.
This requires a profound self-compassion or self-kindness, which I'm better at these days. I actively cultivate self-kindness practices, and try to remember to practice them, day by day.
A recent experience of not being able to help resolve persistent nipple pain
My most recent experience of not being able to help a mother with persistent nipple pain occurred when I was assisting the daughter of a very dear friend. Very sadly, this friend passed away some years ago. I'd known her daughter K. from childhood. K. gave birth to a 'late premature' baby, and they came home from hospital having been advised to give what amounted to at least half of the baby's caloric intake as formula. K. had bilateral nipple pain from the very first days. Soon, her baby had developed a conditioned dialling up.
K. was determined to breastfeed. I was very committed to helping (to the extent that she requested or wanted it). I guess I specially wanted everything to go well for her with breastfeeding because a woman's grief for her own lost mother tends to surface so painfully after giving birth, and that would be enough to deal with. Also, I still miss K's mum a lot, myself. I knew my friend would be wanting me to help.
I worked with K. and her baby intensively over a couple of months. They moved in and out of direct breastfeeding, often exclusively pumping for periods of time (which still caused K. pain.) The little one always remained somewhat 'sensitive' at the breast, often fretting and pulling off unexpectedly. My friend's daughter had a long history of moderate eczema and K. felt that she had a particularly sensitive nipple-areolar complex skin. Needless to say, a course of steroid cream didn't help. Objectively, other than pink nipples, there wasn't anything else to see. Over those five months, I was required to face my own failure to help her resolve the nipple pain. After the first couple of months, K. wasn't interested in any more fit and hold work - she'd thoroughly internalised it all and knew what she was doing. Also, athough I opened this up as a possibility in a way that would make it easy for K. to agree, K. hadn't wanted to seek a second opinion anywhere else.
After five months of heroic perseverance, K. decided to wean completely, which of course I completely supported. She described great relief as she changed to formula, finding her life with the baby much more relaxed and enjoyable from then on. Needless to the say, the pain disappeared within days after weaning.
My friend, the one who'd died, who'd had no trouble at all breastfeeding K., had a great sense of humour. I could hear her saying deadpan to me, in my ear, as it became clear that K.'s tendency to nipple pain and discomfort with breastfeeding and pumping was never going to completely resolve: "... Oh and by the way, what was it that you specialised in again ....??"
What I have to say, though, is that I'm also very grateful to have had the satisfaction over the years of being able to empower women to resolve their persistent nipple pain more often than not, often after coming to see me 'at the end of the road' after weeks or months of trying multiple lactation consultants, health professionals, medications, and approaches.
I make sense of it this way. Sometimes a chronic inflammation (which results from ongoing mechanical tissue stress and which causes nociceptive or neuropathic pain, quite different to nociplastic or central sensitisation of pain or neuralgia) can't resolve in the context of repetitive exposure to mechanical pressures, regardless of how much better we're now able to distribute the mechanical elastic loads over the nipple and areola skin. It may become a form of 'allodynia', that is, peripheral sensitisation to repetitive microtrauma and inflammation, so that any repetitive mechanical stress perpetuates it. It's possible that women with pre-existing skin conditions such as hormonally induced skin sensitivity, psorhiasis, or moderate to severe atopic dermatitis, may be more vulnerable to this kind of exaggerated inflammatory response or peripheral sensitisation. Her pain will only go away when the repetitive mechanical stress ceases.
That's how I see it right now.
Kind regards
Pam
27 June 2024
Recommended resources
Are women more prone to persistent nipple pain during lactation if they have other skin conditions?
Persistent lactation-related nipple pain: aetiology and management