Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 i just got diagnosed 3 weeks ago with VV and it is only on contact or penetration and after 5 years of hoping for some help with creams, meds, injections, etc. the doctor i just found gave me the diagnosis and said i should have the greatest help or result with surgery. they say surgery is a last resort probably because they dont want to get sued if something goes wrong but if you have pain only on contact and the surgery is said to have the highest success rate, my doctor suggested it and i am right on it. why try so many other things that do not have such a high success rate if you have been struggling for years? i want this pain and mental anguish over with as soon as possible and if surgery may be the answer, i am on it! sorry if i feel so strong about it but i have been desperate for so long and my doctor is very confident that this can help me. Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery???Date: Wed, 26 Apr 2006 00:16:53 -0000--- For you all that have the option of surgery and have only contact pain, it may be a good thing. I DID have the sugery but wasnt advised properly, as I did NOT have just contact, I had generalized. therefore I dont have too much pain at the surgery site itself, but externally.....it still feels horrible. HORRIBLE....In VulvarDisorders , Anne Mcgee wrote:>> I have been through the same thing, I WANT this stupid thing cut off, but > the docs just are like, no, surgery BAD, pills GOOD, don't work, but > surgery BAD!..4 years and I am having my worst pain ever, Anne MI> > --On Tuesday, April 25, 2006 5:47 PM +0000 "VXronique ..." > wrote:> > > Hi,> >> > I am new to the support group, but I have been diagnosed with VVS two> > years ago. It took me taking a psychology class at my University with a> > leading psychologist in the field of VVS to get me a referal to a good> > gyno who could give me the proper help I need. I have been doing> > physiotherapy and psychotherapy, but haven't attained the results I> > wanted. I therefore asked my doctor for the vestibulectomy, which he> > greatly hesitates doing for me. I am therefore so surprised that your> > doctor recommends it. I do not hesitate to do the surgery.... I have> > been through so much pain that one last hopeful shot of it to get rid of> > the pain might be worth it. I wish you luck in your treatment options.> >> > Véronique> >> >> > > > > > Reply-To: VulvarDisorders > > > To: VulvarDisorders > > > Subject: Vulvar Pain Center in land, also New York and D.C.> > > Date: Tue, 25 Apr 2006 17:07:20 -0000> > >> > > I joined the NVA (National Vulvodynia Association) for $40.00 a year> > > donation. They gave me a list of doctors in MD, VA, DC who specialize> > > in vulvar pain problems. They will give listings for anywhere in U.S.> > > I believe. They also gave me the name of basically a case worker in> > > my area who I can call or email for support or doctor info in this> > > area. That is where I found doctor Goldstein. He has done 280> > > vestibulectomies. He is a surgeon and OBGYN. He of course recommends> > > surgery, but I am afraid to do that right away.> > >> > > I aint lettin' just anyone go cuttin' on my poor little stressed out> > > suzy, as I call it, you know? It's been through enough. I will post> > > the lichen type after I go to lunch, when I grab the sheet he gave> > > me. I knew about Lichen Sclerosis before I went there, and he said> > > something other than that, I believe.> > >> > > Here is who I saw:> > >> > > Dr. Goldstein is in polis, MD, D.C. and New York,> > > His info is on www.thesexualwellnesscenter.com> > >> > > The Vulvar Pain Center in land is in Lutherville, and can be> > > viewed at www.dvpcenter.com., Doctor Kamal Hamod heads their unit. I> > > will go there because they do accept insurance, to see what they have> > > to say as well. I am told people fly in from all over to have Dr.> > > Goldstein do their surgeries, when they opt for surgery though. He is> > > very comfortable to work with, especially with my husband present.> > >> > >> > >> > >> >> >> >> >> > **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 April 26, 2006 Report Share Posted April 26, 2006 Hi I totally understand your point. I have been diagnosed with the same thing, and have been resorting to different treatments for two years now. I actually studied VVS in a psychology class at my University. One thing that I think is important to acknowledge is that although surgery is effective, if you only do that, you might not totally get rid of the pain because of the physiological reactions to the pain that your brain has gotten used to. Since you're used to being in pain, everytime someone or something touches you, it stimulates your body to get into a defensive position, and you become tense - which makes your pain worst. I'm actually on the waiting list at my hospital for the surgery, but i might suggest you try psychotherapy for VVS and physiotherapy... I have found them to be greatly helpful while waiting. Best of luck, Véronique > >Reply-To: VulvarDisorders >To: VulvarDisorders >Subject: Re: surgery??? >Date: Tue, 25 Apr 2006 20:37:43 -0400 >i just got diagnosed 3 weeks ago with VV and it is only on contact or >penetration and after 5 years of hoping for some help with creams, meds, >injections, etc. the doctor i just found gave me the diagnosis and said i >should have the greatest help or result with surgery. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 You should read the information at: http://www.vulvalpainsociety.org/html/surgery.htm and http://www.vulvalpainsociety.org/html/vulvoplasty.htm which deal with results from the surgery. Ora i just got diagnosed 3 weeks ago with VV and it is only on contact or penetration and after 5 years of hoping for some help with creams, meds, injections, etc. the doctor i just found gave me the diagnosis and said i should have the greatest help or result with surgery. they say surgery is a last resort probably because they dont want to get sued if something goes wrong but if you have pain only on contact and the surgery is said to have the highest success rate, my doctor suggested it and i am right on it. why try so many other things that do not have such a high success rate if you have been struggling for years? i want this pain and mental anguish over with as soon as possible and if surgery may be the answer, i am on it! sorry if i feel so strong about it but i have been desperate for so long and my doctor is very confident that this can help me. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 , You may hear a lot of negativity on the surgery issue, but your doctor is right in that contact sensitivity only or primary vvs has the highest success rate. A good surgeon would not preform a vestibulectomy on a patient with deasthetic vulvodynia as well. Just make sure you read up on the procedure so you can ask your doctor all the right questions:) Bunny Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery??? Date: Tue, 25 Apr 2006 20:37:43 -0400 i just got diagnosed 3 weeks ago with VV and it is only on contact or penetration and after 5 years of hoping for some help with creams, meds, injections, etc. the doctor i just found gave me the diagnosis and said i should have the greatest help or result with surgery. they say surgery is a last resort probably because they dont want to get sued if something goes wrong but if you have pain only on contact and the surgery is said to have the highest success rate, my doctor suggested it and i am right on it. why try so many other things that do not have such a high success rate if you have been struggling for years? i want this pain and mental anguish over with as soon as possible and if surgery may be the answer, i am on it! sorry if i feel so strong about it but i have been desperate for so long and my doctor is very confident that this can help me. Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery??? Date: Wed, 26 Apr 2006 00:16:53 -0000 --- For you all that have the option of surgery and have only contact pain, it may be a good thing. I DID have the sugery but wasnt advised properly, as I did NOT have just contact, I had generalized. therefore I dont have too much pain at the surgery site itself, but externally.....it still feels horrible. HORRIBLE.... In VulvarDisorders , Anne Mcgee wrote: > > I have been through the same thing, I WANT this stupid thing cut off, but > the docs just are like, no, surgery BAD, pills GOOD, don't work, but > surgery BAD!..4 years and I am having my worst pain ever, Anne MI > > --On Tuesday, April 25, 2006 5:47 PM +0000 " VXronique ... " > wrote: > > > Hi, > > > > I am new to the support group, but I have been diagnosed with VVS two > > years ago. It took me taking a psychology class at my University with a > > leading psychologist in the field of VVS to get me a referal to a good > > gyno who could give me the proper help I need. I have been doing > > physiotherapy and psychotherapy, but haven't attained the results I > > wanted. I therefore asked my doctor for the vestibulectomy, which he > > greatly hesitates doing for me. I am therefore so surprised that your > > doctor recommends it. I do not hesitate to do the surgery.... I have > > been through so much pain that one last hopeful shot of it to get rid of > > the pain might be worth it. I wish you luck in your treatment options. > > > > Véronique > > > > > > > > > > Reply-To: VulvarDisorders > > > To: VulvarDisorders > > > Subject: Vulvar Pain Center in land, also New York and D.C. > > > Date: Tue, 25 Apr 2006 17:07:20 -0000 > > > > > > I joined the NVA (National Vulvodynia Association) for $40.00 a year > > > donation. They gave me a list of doctors in MD, VA, DC who specialize > > > in vulvar pain problems. They will give listings for anywhere in U.S. > > > I believe. They also gave me the name of basically a case worker in > > > my area who I can call or email for support or doctor info in this > > > area. That is where I found doctor Goldstein. He has done 280 > > > vestibulectomies. He is a surgeon and OBGYN. He of course recommends > > > surgery, but I am afraid to do that right away. > > > > > > I aint lettin' just anyone go cuttin' on my poor little stressed out > > > suzy, as I call it, you know? It's been through enough. I will post > > > the lichen type after I go to lunch, when I grab the sheet he gave > > > me. I knew about Lichen Sclerosis before I went there, and he said > > > something other than that, I believe. > > > > > > Here is who I saw: > > > > > > Dr. Goldstein is in polis, MD, D.C. and New York, > > > His info is on www.thesexualwellnesscenter.com > > > > > > The Vulvar Pain Center in land is in Lutherville, and can be > > > viewed at www.dvpcenter.com., Doctor Kamal Hamod heads their unit. I > > > will go there because they do accept insurance, to see what they have > > > to say as well. I am told people fly in from all over to have Dr. > > > Goldstein do their surgeries, when they opt for surgery though. He is > > > very comfortable to work with, especially with my husband present. > > > > > > > > > > > > > > > > > > > > > > **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 April 26, 2006 Report Share Posted April 26, 2006 Many doctors actually recomend PT or at least dialator thearapy after surgery to help you reaclimate after the procedure. I found it really helpful. Bunny Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery??? Date: Wed, 26 Apr 2006 02:03:18 +0000 Hi I totally understand your point. I have been diagnosed with the same thing, and have been resorting to different treatments for two years now. I actually studied VVS in a psychology class at my University. One thing that I think is important to acknowledge is that although surgery is effective, if you only do that, you might not totally get rid of the pain because of the physiological reactions to the pain that your brain has gotten used to. Since you're used to being in pain, everytime someone or something touches you, it stimulates your body to get into a defensive position, and you become tense - which makes your pain worst. I'm actually on the waiting list at my hospital for the surgery, but i might suggest you try psychotherapy for VVS and physiotherapy... I have found them to be greatly helpful while waiting. Best of luck, Véronique > >Reply-To: VulvarDisorders >To: VulvarDisorders >Subject: Re: surgery??? >Date: Tue, 25 Apr 2006 20:37:43 -0400 >i just got diagnosed 3 weeks ago with VV and it is only on contact or >penetration and after 5 years of hoping for some help with creams, meds, >injections, etc. the doctor i just found gave me the diagnosis and said i >should have the greatest help or result with surgery. **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 April 26, 2006 Report Share Posted April 26, 2006 Thanks, for your support and info. On an everyday basis, I am perfectly fine but on contact it is horrible. I have no swelling or itching, etc just very red and raw looking and the qtip test was very painful. I also have tightening of the muscle as soon as a painful area is hit before reaching the muscle and the doctor feels that after the surgery is done and I am able to have intercourse with out pain or contact without pain, i can retrain my muscle not to tense up. Is there anyone that has had the surgery who pre surgery lost ALL of their sex drive (libido) and it has come back post surgery? I am very nervous that I will still not have ANY desire at all after I am better since it has been so long having my mind messed up. Did anyone have to go to therapy or were you so happy to be well that you were able to get excited again?? Thanks, Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery???Date: Wed, 26 Apr 2006 10:38:13 -0500,You may hear a lot of negativity on the surgery issue, but your doctor isright in that contact sensitivity only or primary vvs has the highestsuccess rate. A good surgeon would not preform a vestibulectomy on apatient with deasthetic vulvodynia as well. Just make sure you read up onthe procedure so you can ask your doctor all the right questions:) BunnyReply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery???Date: Tue, 25 Apr 2006 20:37:43 -0400i just got diagnosed 3 weeks ago with VV and it is only on contact orpenetration and after 5 years of hoping for some help with creams, meds,injections, etc. the doctor i just found gave me the diagnosis and said ishould have the greatest help or result with surgery. they say surgery is alast resort probably because they dont want to get sued if something goeswrong but if you have pain only on contact and the surgery is said to havethe highest success rate, my doctor suggested it and i am right on it. whytry so many other things that do not have such a high success rate if youhave been struggling for years? i want this pain and mental anguish overwith as soon as possible and if surgery may be the answer, i am on it! sorry if i feel so strong about it but i have been desperate for so long andmy doctor is very confidentthat this can help me. Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery???Date: Wed, 26 Apr 2006 00:16:53 -0000---For you all that have the option of surgery and have only contactpain, it may be a good thing. I DID have the sugery but wasntadvised properly, as I did NOT have just contact, I had generalized. therefore I dont have too much pain at the surgery site itself, butexternally.....it still feels horrible. HORRIBLE....In VulvarDisorders , Anne Mcgee wrote:>> I have been through the same thing, I WANT this stupid thing cutoff, but> the docs just are like, no, surgery BAD, pills GOOD, don't work,but> surgeryBAD!..4 years and I am having my worst pain ever, Anne MI>> --On Tuesday, April 25, 2006 5:47 PM +0000 "VXronique ..."> wrote:>> > Hi,> >> > I am new to the support group, but I have been diagnosed with VVStwo> > years ago. It took me taking a psychology class at my Universitywith a> > leading psychologist in the field of VVS to get me a referal toa good> > gyno who could give me the proper help I need. I have been doing> > physiotherapy and psychotherapy, but haven't attained theresults I> > wanted. I therefore asked my doctor for the vestibulectomy,which he> > greatly hesitates doing for me. I am therefore so surprisedthat your> > doctor recommendsit. I do not hesitate to do the surgery.... Ihave> > been through so much pain that one last hopeful shot of it toget rid of> > the pain might be worth it. I wish you luck in your treatmentoptions.> >> > Véronique> >> >> > > > > > Reply-To: VulvarDisorders > > > To: VulvarDisorders > > > Subject: Vulvar Pain Center in land, also New Yorkand D.C.> > > Date: Tue, 25 Apr 2006 17:07:20 -0000> > >> > > I joined the NVA (National Vulvodynia Association) for $40.00 ayear> > > donation. They gave me a list of doctors in MD, VA, DC whospecialize> > > in vulvar pain problems.They will give listings for anywherein U.S.> > > I believe. They also gave me the name of basically a caseworker in> > > my area who I can call or email for support or doctor info inthis> > > area. That is where I found doctor Goldstein. He has done 280> > > vestibulectomies. He is a surgeon and OBGYN. He of courserecommends> > > surgery, but I am afraid to do that right away.> > >> > > I aint lettin' just anyone go cuttin' on my poor littlestressed out> > > suzy, as I call it, you know? It's been through enough. I willpost> > > the lichen type after I go to lunch, when I grab the sheet hegave> > > me. I knew about Lichen Sclerosis before I went there, and hesaid> > > something other than that, Ibelieve.> > >> > > Here is who I saw:> > >> > > Dr. Goldstein is in polis, MD, D.C. and New York,> > > His info is on www.thesexualwellnesscenter.com> > >> > > The Vulvar Pain Center in land is in Lutherville, and can be> > > viewed at www.dvpcenter.com., Doctor Kamal Hamod heads theirunit. I> > > will go there because they do accept insurance, to see whatthey have> > > to say as well. I am told people fly in from all over to haveDr.> > > Goldstein do their surgeries, when they opt for surgery though.He is> > > very comfortable to work with, especially with my husbandpresent.> > >> > >> > >> > >> >> >> >>>> > **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 April 26, 2006 Report Share Posted April 26, 2006 Hi , I have been to therapy, but pre-surgery. Cognitive-behavioural therapy might be a good idea for you, especially if you think that you have lost all desire and libido. What CBT does is that it identifies what kind of problems you are suffering - i.e. loss of desire, incapacity to get aroused, etc., and then helps you learn psychological and physical techniques to help ameliorate the problem. I think that a lot of people are reluctant to go through therapy because of the fact that the problem we experience is physical, but I think that it messes soooo much with the mind that going through surgery without going through therapy might take care of the physical scars produced by dyspareunia and vaginismus, but it does not take care of all the side effects - side effects that can stay long after surgery. I suggest you give it a try at least a few times and see if it helps. Véronique > >Reply-To: VulvarDisorders >To: VulvarDisorders >Subject: Re: surgery??? >Date: Wed, 26 Apr 2006 12:26:37 -0400 > > > > >Thanks, for your support and info. On an everyday basis, I am >perfectly fine but on contact it is horrible. I have no swelling or >itching, etc just very red and raw looking and the qtip test was very >painful. I also have tightening of the muscle as soon as a painful area is >hit before reaching the muscle and the doctor feels that after the surgery >is done and I am able to have intercourse with out pain or contact without >pain, i can retrain my muscle not to tense up. Is there anyone that has >had the surgery who pre surgery lost ALL of their sex drive (libido) and it >has come back post surgery? I am very nervous that I will still not have >ANY desire at all after I am better since it has been so long having my >mind messed up. Did anyone have to go to therapy or were you so happy to >be well that you were able to get excited again?? Thanks, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2006 Report Share Posted April 26, 2006 I am going to start going this week to talk to someone becasue I know that the physical problem causes stress but the mental problem that this disorder plays with your mind is worse. I dont feel like a woman, lover, sexual being or any of that. I feel just like I am going through my day to day routine with my kids and that is my life. My husband is hanging on so strong but we had a very bad day yesterday and he is losing his mind as well. He is not only frustrated of not having at least some intimacy but he is also frustrated because he can not stand me being so depressed, demotivated, overwhelmed, etc and he can't understand it. I may need to go back on medication to see if that helps. Since he can't do anything about it he feels helpless. We tried couples therapy for about 2-3 months maybe a year ago and it helped a little but not much so we stopped. I know that all I need is to feel like doing something, anything and he is all for it. he knows we wont have intercourse and he doesnt care but I can't seem to get the drive to want anything at all and it is causing such a strain! It actually makes me sick thinking of any intimacy. I used to be such a sex addict and we had an incredible relationship so you can imagine the difference in our lives. If any of you have relationships, how do you make it work and still feel amorous?? When I see the therapist this week maybe she will try or suggest some CBT and maybe she can help. Thanks for the advice Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery??? Date: Wed, 26 Apr 2006 17:05:36 +0000 Hi , I have been to therapy, but pre-surgery. Cognitive-behavioural therapy might be a good idea for you, especially if you think that you have lost all desire and libido. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Its also a muscle thing, the one visit my insurance paid for PT, the pt person said that the muscles get used to responding to pain, so they expect it, Anne in MI --On Wednesday, April 26, 2006 2:03 AM +0000 " VXronique ... " wrote: > Hi > > I totally understand your point. I have been diagnosed with the same > thing, and have been resorting to different treatments for two years > now. I actually studied VVS in a psychology class at my University. > One thing that I think is important to acknowledge is that although > surgery is effective, if you only do that, you might not totally get rid > of the pain because of the physiological reactions to the pain that your > brain has gotten used to. Since you're used to being in pain, everytime > someone or something touches you, it stimulates your body to get into a > defensive position, and you become tense - which makes your pain worst. > I'm actually on the waiting list at my hospital for the surgery, but i > might suggest you try psychotherapy for VVS and physiotherapy... I have > found them to be greatly helpful while waiting. > > Best of luck, > Véronique > > > > > > Reply-To: VulvarDisorders > > To: VulvarDisorders > > Subject: Re: surgery??? > > Date: Tue, 25 Apr 2006 20:37:43 -0400 > > > i just got diagnosed 3 weeks ago with VV and it is only on contact or > > penetration and after 5 years of hoping for some help with creams, > > meds, injections, etc. the doctor i just found gave me the diagnosis > > and said i should have the greatest help or result with surgery. > > > > > > **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 April 27, 2006 Report Share Posted April 27, 2006 If any of you have relationships, how do you make it work and still feel amorous?? Gosh, if I knew the answer to that question, maybe I would have been able to make my relationships last. I am unfortunate to be young and in the age group where men want to have sex first and a relationship second, which makes it difficult for me to live with. Most of all of my previous relationships have failed because the men I was with were unable to ''cope'' with my physical problems. I got treated like a cold dried-up bitch more than I can remember. I hope to find that one guy who will be able to understand and support me, and hope to find him sooner than later. good luck girls, I'm looking very much forward to surgery Véro Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Cognitive-behavioural therapy is not a bad idea, but I will tell you from experience that it may not have much affect before surgery or other productive treatment. The very first thing my doctors suggested before I was taken seriously about my vvs was to refer me to a psycologist for this sort of thing. Bunny _________________________________________________________________ Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Hey, Maybe look for an older man... mine is 21 yrs older and he's at that point where relationships come first and sex is less important to him now. He's thinking more about having someone for companionship and to care for him in his old age. : ) Re: surgery??? > > If any of you have relationships, how do you make it work and still feel > amorous?? > > Gosh, if I knew the answer to that question, maybe I would have been able > to > make my relationships last. I am unfortunate to be young and in the age > group where men want to have sex first and a relationship second, which > makes it difficult for me to live with. Most of all of my previous > relationships have failed because the men I was with were unable to > ''cope'' > with my physical problems. I got treated like a cold dried-up bitch more > than I can remember. > > I hope to find that one guy who will be able to understand and support me, > and hope to find him sooner than later. > > good luck girls, I'm looking very much forward to surgery > > Véro > > > > > > > > **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 April 28, 2006 Report Share Posted April 28, 2006 Dusty, thanks for your response! Always good to know there is hope in this situation. As far as orgasm, I have no problem with it once I get involved with hubby doind oral since there is no intercourse in our relationship due to pain. It is just very hard to even get started doing anything because i have no desire at all. Once we get going, I have to focus very hard to enjoy it instead of being disgusted of what I have had to deal with and then I am fine. It is just the initial desire. I have tried the testoterone cream, Testim, and put it on my inner thighs for 3 months with no changes at all in libido. What kind of testosterone are you using and what dose? i think mine was 2%?? I would need to check on that. It has been awhile since I used it so I am not sure. Maybe I should try it again and see what happens. I am hoping that after surgery if it works that things will be easier but I will have to wait and see! Reply-To: VulvarDisorders To: <VulvarDisorders >Subject: RE: surgery???Date: Thu, 27 Apr 2006 17:58:15 -0400, This will be hard to believe, but it has turned out to be true forme. Once I got my hormones fairly stabilized (with estrogen patches andprogesterone- I'm 58) my pain (24/7 DV) stared to lessen. Still couldn't beintimate though. Found a gyn who was willing to work with me and she saidthat although she understood completely how the pain makes it almostimpossible to engage in sexual activity (she is also a sex therapist) thatit was VERY important to get blood flow to the area and the best way to dothat is through orgasm. She encourged me to keep trying and find ways toreach orgasm without penetration. In the meantime, she also gave me ascript for testosterone cream to be applied both on my leg and on the tendervulvar tissue. I took her advice and though many tears of frustration and anger were shedalong the way, began to experience orgasm again - even though at first thiswas achieved v e r y c a r e f u l l y~!! The desire was there becauseof the testosterone and my wish to regain my intimacy with my husband. Aswe became more and more sucessful, I had less and less severe pain becausewe were being intimate several times a week then - as it almost was agiven that if we didn't, my pain would increase.I know how impossible it seems to recover any sensual feelings - but pleasetalk to your gyn about the testosterone. It gets the feelings going andthen there IS a will and we FIND a way!!!! I'd be hard pressed to giveup my testosterone now.Good luckDusty**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**Our HOME page is http://groups.yahoo.com/group/VulvarDisordersto search our archives, files, articles, etc.*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 I believe that therapy will help as well but I also believe that as long as this problem and pain exists, it would be difficult to change the mind set and feel positive when no changes have occured and you are still in a state of pain. I am sure that after the surgery, which i pray will be a success, I will need to talk to someone to then get myself in a normal state again seeing that I am having a productive treatment! Thanks! Reply-To: VulvarDisorders To: VulvarDisorders Subject: Re: surgery???Date: Thu, 27 Apr 2006 10:39:14 -0500Cognitive-behavioural therapy is not a bad idea, but I will tell you from experience that it may not have much affect before surgery or other productive treatment. The very first thing my doctors suggested before I was taken seriously about my vvs was to refer me to a psycologist for this sort of thing. Bunny_________________________________________________________________Express yourself instantly with MSN Messenger! Download today - it's FREE! http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**Our HOME page is http://groups.yahoo.com/group/VulvarDisordersto search our archives, files, articles, etc.*** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 ''I am sure that after the surgery, which i pray will be a success, I will need to talk to someone to then get myself in a normal state again seeing that I am having a productive treatment! Thanks! '' I feel it important to share my experiences with a psychologist before surgery, maybe this will help some of you out. I think that seeing a psychologist was extremely helpful in my treatment. My pain decreased from an 8/10 to a 5/10 for many reasons. First of all, when I started seeing the psychologist, I had just gotten out of a horrible relationship which left me extremely wounded both physically and psychologically. Being able to talk about the reasons I was in that relationship helped me cope with my feelings that all men were prone to hurt me (again physically and mentally). Although a personal experience, it shows that sometimes talking about the feelings behind the sexual acts experienced already changes the future experiences in that you are able to resolve underlying anxiety. Secondly, my therapist and I discussed times, places and ways in which I experienced more pain, and tried finding ways that I was confortable with to have sex that would be less painful. We discussed ways that I could distract myself mentally from the pain, and to get myself focused on the pleasure, even if it was less powerful than the pain itself. Seeing my psychologist, even if it was only for about 2 months, helped my pain considerably, even if I haven't been through the surgery yet. I can't say that I'm one hundred percent satisfied with therapy - I still experience pain, after all, but it was an important tool in my toolbelt of techniques to help me deal with VVS. These are some of the techniques that I have learned which might help some of you when in an intimate situation: - Instead of focusing on the act of sex, I try to focus on what turns me on and attracts me from my man - his scent, his touch, his breathing and his reactions to my touch. This helps me to relax and increase my desire enormously. - If you have ever done physiotherapy, you might have learned to relax your pelvic muscles before having something enter your vagina. Before penetration, it is often helpful to contract your pelvic muscles and release them a few times, this will lead your muscles to relax and decrease the pain you experience. - During the day, I often do kegel exercises to reinforce my pelvic muscles. My physiotherapist has also made me realise that my natural state down there is to be tensed up, so I have to focus to relax those muscles during the course of my day. - Doing stretching exercises with a dildo or a round object (small at first) with your pelvic muscles helps soooo much - it's exactly like stretching your leg muscles before going for a run - it makes your muscles more souple and ready for penetration. - Having a warm bath or doing something relaxing before getting intimate helps - have your partner give you a back massage - it is relaxing and can be quite erotic!!!!! Anyway, this is just a taste of what I have learned which makes my life alot more enjoyable. Therapy does work, even before surgery. It cannot guarantee 100% decrease in pain, but it does go some way to a better sex life - and life in general. I hope this helps clarify things for a few of you who might still be confused about the issue! Take care, Véronique Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2006 Report Share Posted April 30, 2006 Hmm - as usual, Dusty, you are a wealth of information. I've been so sick with my Lyme treatment my libido has been lacking even though my v pain has gotten so much better. I've been putting my Testostorone cream by my wrists and upper arms - you better believe I'm going to put some on my vulva now! I've not had a problem with orgasm or anything just lack of desire - just keeping hubby happy but why not be happy myself???? Love and Hugs Molly > > I'm using 2% testosterone gel on inner thigh and directly only vulvar and > vestibule. I'm using about 4 times a week and it really does make a BIG > difference. It did however, take time to build up enough in my blood stream > that way (through the skin) to really make the desire kick in with enough > force to make me want to brave the pain to find the pleasure!!! I found > that If I whenever I applied the cream to my thigh , I used the remnants on > my fingers for rub into the vulva and clitoris, the desire stays at a pretty > constant level. > > I know that other ladies on the list use the cream and take testosterone > (compounded) by mouth. It may be that you need this, or it may simply be > that when you were applying your cream you weren't also applying directly to > your genitals. I really think that made the difference for me. > > I've been grateful for this cream, I don't think I would have tried to > overcome the pain without my " boyjuice " making me be as randy as a guy!!!!! > > Good luck > Dusty > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2006 Report Share Posted May 2, 2006 You are right Dusty, I was not putting the testosterone on my genitals becasue I was only told to put it on my inner thighs. maybe i should try it??? i can't get worse with my drive, haha! i will let you know if i can get some from my doc and tell you how it goes! I'm using 2% testosterone gel on inner thigh and directly only vulvar and vestibule. I'm using about 4 times a week and it really does make a BIG difference. It did however, take time to build up enough in my blood stream that way (through the skin) to really make the desire kick in with enough force to make me want to brave the pain to find the pleasure!!! I found that If I whenever I applied the cream to my thigh , I used the remnants on my fingers for rub into the vulva and clitoris, the desire stays at a pretty constant level. I know that other ladies on the list use the cream and take testosterone (compounded) by mouth. It may be that you need this, or it may simply be that when you were applying your cream you weren't also applying directly to your genitals. I really think that made the difference for me. I've been grateful for this cream, I don't think I would have tried to overcome the pain without my "boyjuice" making me be as randy as a guy!!!!! Good luck Dusty RE: surgery???Date: Thu, 27 Apr 2006 17:58:15 -0400, This will be hard to believe, but it has turned out to be true forme. Once I got my hormones fairly stabilized (with estrogen patches andprogesterone- I'm 58) my pain (24/7 DV) stared to lessen. Still couldn't beintimate though. Found a gyn who was willing to work with me and she saidthat although she understood completely how the pain makes it almostimpossible to engage in sexual activity (she is also a sex therapist) thatit was VERY important to get blood flow to the area and the best way to dothat is through orgasm. She encourged me to keep trying and find ways toreach orgasm without penetration. In the meantime, she also gave me ascript for testosterone cream to be applied both on my leg and on the tendervulvar tissue. I took her advice and though many tears of frustration and anger were shedalong the way, began to experience orgasm again - even though at first thiswas achieved v e r y c a r e f u l l y~!! The desire was there becauseof the testosterone and my wish to regain my intimacy with my husband. Aswe became more and more sucessful, I had less and less severe pain becausewe were being intimate several times a week then - as it almost was agiven that if we didn't, my pain would increase.I know how impossible it seems to recover any sensual feelings - but pleasetalk to your gyn about the testosterone. It gets the feelings going andthen there IS a will and we FIND a way!!!! I'd be hard pressed to giveup my testosterone now.Good luckDusty**IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, THANKS**Our HOME page is http://groups.yahoo.com/group/VulvarDisordersto search our archives, files, articles, etc.*** Quote Link to comment Share on other sites More sharing options...
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