Raynauds syndrome in the nipple - help!

[itsnotterrysitsmine]

Ok so I’m 99% confident I have Raynauds syndrome in my nipples I’m currently still bf dc3 who is 11 months old. The problem started about 4 - 5 months ago but has got progressively worse to the point of the pain reducing me to tears & needing paracetamol & ibuprofen to manage the pain when an attack is particularly bad.
There are no issues with latch but the problem seemed to coincide with a milk bleb / blister that has now healed & an increase in her nosiness during feedings DD feeds & when she comes off the nipple is a normal shape & colour, within 30 seconds the end of the nipple is completely white & the pain that goes through my breast is a really sharp, almost burning type pain. This can happen on both side but is much worse on DD’s favourite side.
I have seen the GP who said she’d never heard of this, & am now at the breast clinic having just seen a breast consultant who has never seen this either. He has recommended evening primrose oil for the next 3 - 6 months & the possibly a medication but one of the side effects is that it surpress’s lactation.
Does anyone have any knowledge or experience of this?

Yes it's vasospasm.

Any ideas how to effectively treat it? The pain that I’m getting is horrific & I say that as someone who has bf 2 other babies, had this with dc2 but not to this extent & I’ve had mastitis with each of the older dc. This is getting unbearable.

How had they never seen it?
I have it. It gets worse when dd goes through a patch of pulling back with nipple in her mouth.

I find I need to make sure nothing presses on nipple (so often don’t wear a bra, might stick pads inside a loose vest top if leaky) and that they stay warm (so wear loose top, feed in bed and ‘tent’duvet over boobs.
) Dd is 3 months and I’ve had it for about 2 months, manageable now though.

A friend also has it. Her dd has poor and painful latch. Does seem to be caused by damage to nipple.

I have this too. Kept me awake for an hour last night after a night feed. We went camping recently and it was bloody awful! It always seems worse during the night and appears worse In my right nipple, but I get it in both. As soon as she’s finished feeding I am under the covers keeping my boob warm. I spoke to the health visitors the other day who were lecturing me on ensuring the latch is correct, but like you the nipple comes out fine and it’s only after the feed that it turns white.

I have no advice I’m afraid, but you’re not alone.