Her 2 ladies can you offer any desperately needed advice?

Others have offered advice @Sam09 that I would have.  Glad you've managed to get into an immunologist.  Have you had a look at the sister site for this network for the US?  I only ask because years ago, a friend had such a rare condition that the doctors here had never seen it but the size of the population in the US meant that, while still rare, there were doctors working with it and a patient group.  Possibly, there may be some women who have experienced your reaction and found something that helps.