Just had to put it out there.....  Bad enough that sometimes my skin hurts when anyone touches me but this issue is even more difficult.  My poor husband has to put up with soooo much.   Don't want to get too personal but I'm thinking I can't be the only one?

SERIOUSLY ???
Girl; do you have any idea how many of us wanted to know- but were too chicken to ask ?! Im sure I speak for LOTS of us when I say ...
THANK YOU
lori

I had spoken about this on the old forum but forgot to say something here.  I originally spoke with Dr. Castells regarding this due to other patients having issues, but I do too.  I've fainted due to this, several times!

It's that same issue with excercise anaphylaxis, YOU MUST LISTEN TO YOUR BODY!  

Now some people might be foolish enough to say, "Well then I just won't have any more."  If you do this then you are allowing the disease to rob you of more than you should.  This is one situation where you do need to listen to your body, but then you also need to make it behave and even ignore it.  

When you are in a flare and things are triggering left and right, then this is a time when you need to plan carefully what you do and when and with the proper planning, then it's not a major issue.  Women have the added benefit of being able to enjoy it all without having to let themselves go and this way they can avoid getting sick.  

I understand the issues that can go on here and why some people would get so "turned off"  that they prefer not having any at all, but I honestly think that this is the biggest mistake we can do not only against our own selves but against our partners and those whom we love.  Our partners would equivilate this as being REJECTION.  They may understand that it makes us sick and therefore we may want to do it as little as possible, but  this is one event in life which honestly must be fought against for it will ruin any marriage and stress the very core of any relationship!  In this situation, it's not right to think of only one's self and one's needs!  It's very honestly a situation where there must be old fashioned self-sacrifice, as unpopular as that has become because without this, it's very easy to see that after a period of time, the partner will seek out other means for satisfying their needs for affection and warmth and acceptance.

So, what do we do when we are faced with pain, fainting, anaphylaxis or pain old feeling miserable if we have sex?    There is a certain amount of just having to put up with it and ignore it and not allowing it to "bother" us!  But then as I said, it requires planning and reflecting as to the situations surrounding this that might make it less difficult.  If your bedroom gets too hot and there's no way to cool it down, then invest in a  small AC just for your bedroom and these times and make sure it's cool enough to help keep you from reacting.  Take the antihistamines prior to the event.  Help your partner to understand what is going on and perhaps find ways which may help you to prevent reacting.  

As one of my doctors said to me, this is the most beautiful of events in our lives and you just have to ignore some things so as not to allow it to rob you!  

Pretty sound medical advice if you ask me!!


Lisa

It´s a shame that this is such a "touchy" subject because it´s one of the very most important as far as our quality of life is concerned!  This is serious stuff!!

I´ve had my husband feel so bad when he´s seen me faint afterwards and it wasn´t even as though I had allowed myself to let go either!  I´ve often held my envolvement back knowing I was "on the edge" so as not to have any trouble.  Thankfully we woman have this ability, but I wonder how it must be for the men, for it´s a very different matter!  Pre-medication is an essential for them I would think.

However, I´ve found that I have much less trouble now that my meds are up to the right levels.  I´m not only more stable in my day to day activities, but in this area of my life I also have gained more stability.  There are days when I tell my husband that I can´t be too active and he fully respects that.  I never allow myself to get upset or disappointed because I feel no matter how much involvement I get, it´s all good!  My husband never feels any pressure from me as to what I get out of it.  I had a wise friend once say to us when we were getting married, that the goal of marriage is that of out giving of one to the other.  That has stuck with me and I´ve tried to keep this idea throughout my marriage - we both do.  And it applies very well in this situation.   But it´s been very hard for my husband knowing that this activity has made me sick.  But it´s one area of my life where I absolutely refuse to allow it to steal away from me!!  Yet it has caused issues and I even had to undergo a vaginal biopsy looking for mast cells for we thought perhaps this was part of the problem.  We had found a MC hyperplasia in my cervix when I had my hysterectomy.  Having a concentration of MCs anywhere is trouble for us for they will trigger and friction is one of their triggers.   Thankfully there were normal numbers and all normal cells but even then, I´ve had real issues!  Even my gyno is hesitate for he also has triggered me big time when he had to do a vaginal scraping for some testing!   He not only made me immediately faint, but had me so very on the edge from that reaction that the physical process of getting dressed  tipped me back over the edge again that I had an attack right there in his office in front of him!!   I never saw a doctor run for water so fast in my life!    My poor doctor the things I´ve put him through!!!!

But you are wise Daowebe to not give up hope!!  If the one dose of meds doesn´t help, try a double dose, that of the H1 and H2 blocker together.  It seems that within the pelvic region the H2 blockers work better, but since this activity gets the blood racing throughout the body, I think that the H1 is more important.  At least this is what Dr. Castells suggested.  She told me Allegra, which is what I take anyway, so this would translate as to the H1 blocker probably being the more important.


Lisa