Guest guest Posted May 29, 2006 Report Share Posted May 29, 2006 I'm 59. I've had DV for 11 yrs. I had it under control for the last 5 yrs. No more pain 24/7...could wear what I wanted, but could not have penetrative sex .Elavil gave me my life back...almost. Then in Aug 0f '05...the symptoms came back horribly. The elavil stopped working. My family dr. put me on neurontin. That kicked in in about Nov. I've had some bad spells, but I could function. Now, in the last two weeks , all symptoms are back even taking 1600 mlg. of neurontin!! I am in agony again. I can hardly walk. I do manage to sleep if I knock myself out with both elavil and neurontin..My pain is mostly rectal...feels like I'm swollen and burning. Also, when that subsides, my vagina burns terribly. I know kbrbon has similiar symptoms. I cannot get into a new dr. that specilizes in severe vulvodynia cases until June 6th. That doesn't seems so long...if I weren't doubled over in agony. Here it is Memorial Day. Last yr. I could participate...this yr. I'm toast! Anyone else as severe as me? Thanks...Sara in Syracuse to > Welp, I got that Elavil Prescription...he started me at 25 mgs at> bedtime and to 50 mgs. if needed....Im hoping the lower dose will> help...Do you have a problem with the side effects??? How old are you> and your body type if you dont mind me asking....I am 30 about 5-6 and> 135 lbs.....> I am so happy you are pain free....I hope the same for myself...its> been a long year with no help so far.> I want to get back to work.......and LIFE for that matter ( :> >>>>>>> **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**>> Our HOME page is http://groups.yahoo.com/group/VulvarDisorders> to search our archives, files, articles, etc.>> *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Sara, I have DV also and had a terrible flare in Aug. 2005 after 5 yrs. of small flares. I went to a neurologist and he put me on neurontin, 800 mg three x's a day and I could take 4 if I could handle the side effects. Also, my elavil was increased to 100 mgs at nite. I also insert 1 cm of estrace creme twice a week. I was @ 60% better in 2 months and each day was tolerable.But I still had burning. I was given ultracet for my FMS, and my family Dr.said use that 3 x's a day until my flare was gone. Well, let me just say, that was the icing on the cake:) For 2 weeks I have had very little burning and my vagina is looking pinker every day.!!! My body has now accepted all the meds and I do get sleepy eyed at times, and that is when I get up an do something. I'm sure everyone is different, but right now that is what is working for me. My DV is definitely nerve related. I also have some VVS, but that seems to be under control right now. I am just waiting for a major flare up as this seems too good to be true. Take care, Joyce > > I'm 59. I've had DV for 11 yrs. I had it under control for the last 5 yrs. No more pain 24/7...could wear what I wanted, but could not have penetrative sex .Elavil gave me my life back...almost. Then in Aug 0f '05...the symptoms came back horribly. The elavil stopped working. My family dr. put me on neurontin. That kicked in in about Nov. I've had some bad spells, but I could function. Now, in the last two weeks , all symptoms are back even taking 1600 mlg. of neurontin!! I am in agony again. I can hardly walk. I do manage to sleep if I knock myself out with both elavil and neurontin..My pain is mostly rectal...feels like I'm swollen and burning. Also, when that subsides, my vagina burns terribly. I know kbrbon has similiar symptoms. I cannot get into a new dr. that specilizes in severe vulvodynia cases until June 6th. That doesn't seems so long...if I weren't doubled over in agony. Here it is Memorial Day. Last yr. I could participate...this yr. I'm toast! Anyone else as severe as me? > Thanks...Sara in Syracuse > to > > > > Welp, I got that Elavil Prescription...he started me at 25 mgs at > > bedtime and to 50 mgs. if needed....Im hoping the lower dose will > > help...Do you have a problem with the side effects??? How old are you > > and your body type if you dont mind me asking....I am 30 about 5-6 and > > 135 lbs..... > > I am so happy you are pain free....I hope the same for myself...its > > been a long year with no help so far. > > I want to get back to work.......and LIFE for that matter ( : > > > > > > > > > > > > > > > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS** > > > > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders > > to search our archives, files, articles, etc. > > > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2006 Report Share Posted May 30, 2006 Joyce, I remember you from last summer!!! So glad to hear that you are so much better!!. I can't believe that the neurontin has lost its little advantage it gave me . I had some OK days throughout the winter. I had to creep up to the 1600 mlgs. of neurontin....it has been a WILD ride. (I am not good w/ medicines) However, I had no choice..I spent most of my late summer months rolled into a ball and crying. Now, I'm in such pain again...I try to cry, but the neurontin seems to have jumbled my emotional receptors and I just can't cry. I am so discouraged!!! I will tell my new dr. about your protocol and see what he says. I feel my problem is nerve related also....but who knows? Thanks for the reply Joyce. Sincerely...Sara to > > > > Welp, I got that Elavil Prescription...he started me at 25 mgs at> > bedtime and to 50 mgs. if needed....Im hoping the lower dose will> > help...Do you have a problem with the side effects??? How oldare you> > and your body type if you dont mind me asking....I am 30 about5-6 and> > 135 lbs.....> > I am so happy you are pain free....I hope the same for myself...its> > been a long year with no help so far.> > I want to get back to work.......and LIFE for that matter ( :> > > >> >> >> >> >> >> > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**> >> > Our HOME page is http://groups.yahoo.com/group/VulvarDisorders> > to search our archives, files, articles, etc.> >> > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2006 Report Share Posted June 3, 2006 What are your symptoms? I have been taking it for about a month now...no releif but it is easy to tolerate.....adding elavil with it.....one side seems to do much better now.... the left side still pretty bad...I have DV and had surgery for local pain..... but I still have generalized pain pretty bad on the external genitalia. I take 75 mgs twice a day. It is way easier to take than neurontin. Quote Link to comment Share on other sites More sharing options...
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