Guest guest Posted June 4, 2000 Report Share Posted June 4, 2000 Hi Allan Forgive me, this is the first list-serve I have been on. I get confused about when I am responding to the list, or a specific person. When I realized my voice was answering in public, as it were, I changed the reply to the list. Did I use bad internet manners? Perhaps so. I apologize. Again, I am new to this type of communication. Interesting about how personal it can get here, though, isn't it? Anyway. I am not at all planning on changing my treatment plan (now alternating estrace and testosterone cream nightly), just because I met a pharmacist who knows about vulvodynia. On the contrary, I am just consumed by the quest for knowledge, or ANY information which could help me or any of my sisters in pain in the future. If these creams DO NOT work, you better believe, I want plan B,C,D, and E all lined up to take the place of plan A. I cannot FATHOM the stability of mind, the courage or the simple will to continue in this manner for the rest of my life. (I am 38). To read the stories of women who have had and lived with this pain for years is simply unthinkable. I am not so strong. I must find something. My own emotions, my own pain could in fact be far more threatening to my well being than a drug or chemical not well tested. I will not live this way. I just won't. So yes there is an element of desperation. A person who is drowning will grasp at anything that seems to float. I do not go 20, no 10 seconds without the constant thought " it hurts " going through my mind. This can, and most likely will drive me nuts. Good thing I have kids. They will keep me fighting the good fight. So, my post was to open up to new thoughts and ideas. Many of us can't wait for the doctors and drug companies and the years they need to come up with solutions. Nearly all the women who speak here seem very intelligent and thoughtful. Those who might be most interested in new treatment ideas have probably researched hundreds of hours more on this subject than their own physicians. I assume they will take any comment or idea in context and not go rushing off that day to launch into a different treatment than what they are currently attempting. (Nor could they without a doctor's advice or prescription).I do not plan on announcing any miracle cure. Just the thoughts and ideas of another educated individual interested in this problem. This is how we get somewhere, isn't it? One thing I have learned, I can't wait or expect any doctor to " take care " of me. I have to be in charge myself. Its good you are here though. To temper those like me. I often do the opposite of what is expected, medically, socially. So I need more options than one might imagine! Thanks for responding. Candace -- allan gordon wrote: > Hi Candace > > I happened to read the vulvodynia digest and saw > this there > I think you must have accidentally posted it on that > list > Interesting about your paradoxical response to NT > Most have weight gain > These drugs, if they work do not do so in everyone > but they do in some and it may be only 40% compared > to a placebo control. I am going to look up the > actual study. > > Do you think the stuff you are going to try has had > the same rigorous attention? (mind you Neurontin has > not had it in theis condition although it does work > in other situations) > > What I am getting at is that people do not have the > same high expectations of testing for the kinds of > preps your pharm will give you > > I suppose it sounds innocuous, you are desparate and > the man seemed interested but that is what you are > going on > > Glad I did not scare you off > > Allan > > Message: 4 o Vulvodynia Digest > Date: Fri, 2 Jun 2000 18:55:19 -0700 (PDT) > > Subject: Nice to meet Allan/ & a natual pharmacist > too... > > Well, thank goodness that mystery is solved. Nice to > meet you Allan. > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2000 Report Share Posted June 4, 2000 I for one am very interested to see what your pharmacist will come up with. I don't suppose he will give you anything that requires a prescription unless you have a prescription. I do know that some pharmacists prepare things based on prescription meds but with alternate bases due to the many things the manufacturers put in creams, etc. Ora On Sat, 3 Jun 2000 17:27:39 -0700 (PDT), Candace Craw-Goldman wrote: > Hi Allan > Forgive me, this is the first list-serve I have been > on. I get confused about when I am responding to the > list, or a specific person. When I realized my voice > was answering in public, as it were, I changed the > reply to the list. Did I use bad internet manners? > Perhaps so. I apologize. Again, I am new to this type > of communication. Interesting about how personal it > can get here, though, isn't it? Quote Link to comment Share on other sites More sharing options...
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