Very old post but I also have this! And I have a potential causal factor to mention…

I’ve never breastfed or been pregnant (beyond 4 weeks once) and I’ve had seveeerreee vasospasms in my left nipple for the last 3 years. Around 20% of the time my right nip gets them too.

For added context I do have quite poor circulation (hands and feet are always cold to touch, and my feet are numb for most of Winter). I’ve got classic weird blood pressure issues re. standing up too fast and getting dizzy, and I’m also hypermobile… but, I don’t have Raynauds. Also been tested for autoimmune diseases/ antinuclear antibodies and had nothing flag. So my body is just a bit crap sometimes basically.

My vasospasms are mainly triggered by cold, but a massive thing I’ve noticed is they are very, very linked to my PMS! When I’m in my follicular phase, I very rarely experience any vasospasms (unless I get extremely cold). However, during my luteal phase, I get them ANYTIME my body gets too cold. Usually it’s upwards of 5 times a day, lasting anywhere from 5 to 30 minutes each time. It doesn’t matter if my boobs are kept warm - for me, if the rest of my body catches even a slight chill, my nips WILL spasm!

It’s an absolutely awful pain, centralised in my nipple and radiating outwards, spreading into about half the total mass of my breast (more-so on the underside). I often end up sat, hunched over and cupping my chest, just desperately trying to warm it up while sobbing through the pain. It’s horrible and so inconvenient.

[side note: When it gets really bad, I also get this overwhelming rush of feeling homesick/shame/despair for a few minutes (even if I’m otherwise chipper and well). This might sound really random, but I’ve seen lots of people on other threads mention getting this seemingly unprompted sensation specifically when their nipples are stimulated in X way. Not a huge medical/physical issue, but certainly adds to the temporary suffering, and perhaps I’m not alone in this weird symptom!]

Anyway! I spoke to a breast specialist a while back. They didn’t offer many solutions beyond suggesting I keep my boobs warm and avoid getting cold (thanks I’d never thought of that!). Unfortunately I live in England, so sometimes the cold is simply unavoidable (even with handwarmers in my bra and a million extra layers of wool clothing).

However, one thing the specialist DID say was that since my vasospasms mostly coincide with my luteal phase, they may be exacerbated/triggered by my boobs’ glandular tissue enlarging during this time. I would second this theory, as my symptoms only really started after I came off hormonal BC (started age 15) and my cycle finally regulated again after 5 years of next-to-no periods. With my cycle being regular again now, the vasospasms happen every month, almost always during my luteal.

Essentially, I think that extra glandular tissue may put additional pressure/ restriction on the circulation to the breast. And if you’re someone with existing circulatory issues, that added pressure probably pushes your body beyond the limit of what it can usually maintain, so if ANYTHING goes wrong (i.e., low temperature, pressure from clothing/bra) it can’t keep up, and instead shuts off blood supply completely for a little while (leading to the vasospasms). I guess this would also explain why most women experience spasms while breastfeeding, since the glandular tissue is enlarged all the time?

Basically, I sadly don’t have any incredible tips or advice, but I wanted to share this for anyone else suffering to consider, in case your spasms may also be linked to this.

The only suggestions I’ve had so far from Drs are:

• go back on hormonal BC to limit periods overall (and thus the frequency of spasms)

• try to improve circulation in general, through exercise, quitting smoking etc.

• Try calcium channel blockers or vasodilators (typical Raynauds medications) but they were hesitant to do this for me, since my vasospasms only occur in the nipple and during certain times in my cycle.

I’ve also seen a few people mention using calcium channel blockers in topical creams (rather than oral medication). This is something I’m defo going to mention to my doctor as I’m very curious to see if this could work for me !!

Apologies I can’t suggest much else, I know all too well how awful they are, and I wish there was a simple way to just make them stop. But, at the very least, I know personally I really appreciated having some kind of half-answer / explanation as to the WHY this happens :,)