Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 I've been struggling with vulvodynia for about 3 years now. I'm 22 now. I got this just a few months into my relationship with my current boyfriend, who I am engaged to now. I thought I was getting better the past few weeks; I thought I might even be healing. Then I got some setback a couple days ago after I started NAET - that electrodermal testing machine for some reason really hurt me, maybe something to do with electrical impulses? anyway, I've just been really set back since then. I'm always hoping for when me and my boyfriend can have sex again. I test in the shower in the morning by inserting some fingers into my vagina and seeing how bad the pain is. well, it was bad today I just get so sad sometimes, how I am not able to have sex with my gorgeous boyfriend who I love. I normally have a " shield " put up so I act like I don't care, and my boyfriend is wonderful in that he is 100% supportive and never brings it up. But last night it just sorta hit me again, and I thought of how much closer we would be if we could be sharing sexual intimacy. What kills me is that this had to happen so early on in our relationship. When I was well, I was sorta sleeping around, I'm ashamed to admit, (got sorta wild last year of high school and whatnot,) and I'm just so sad that when I was actually well I was just having sex with random idiots I didn't care about and who didn't care about me, and now that I've found the man I want to spend the rest of my life with, we can't have sex I'm so sad...I can't bear the idea of having this forever. I already feel like so much has been taken away from me. I guess I just needed to vent a little. I could use some support right now When I'm having a good pain day, my boyfriend refuses to try sex since he's traumatized from hurting me so many times. he says we can't try again until I've been pain-free a month, but what if that never happens? what if it's just good days and bad days? I don't know what to do...in a way it's better being sad because I feel like I'm actually feeling my emotions rather than just shutting down and acting like I don't care and feeling even further from my boyfriend. But then when I embrace my emotions...well, frankly I sometimes don't want to live anymore if it means never being able to be intimate with the man I love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Dear sbabayancsrYou will get better in time. Just follow the protocol you learn here about how to care for yourself. NO jeans, no tight pants, White cotton undies, no bubble bath, use only your hand to clean the area etc. and find a specialist to help you will medications and listen to what the ladies here talk about and what helps them. Try the remedies talked about. Not all will work for you and most others will. Most of all stay focused and attitude is of the utmost importance tho you are going to have good days and bad days. The goal is to have more good days than bad days. I understand your sadness. Youfeel like you have had something " stolen " from you. I know. Wish I could help you more. ML Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Thanks...I have already tried Elavil, Neurontin, physical therapy, herbs. I am now doing the low oxalate diet and NAET. I have seen the most improvement with the low oxalate diet. I will try to hang in there. Thanks for your words of encouragement. Selena > > Dear sbabayancsrYou will get better in time. Just follow the protocol you > learn here about how to care for yourself. NO jeans, no tight pants, White > cotton undies, no bubble bath, use only your hand to clean the area etc. > and find a specialist to help you will medications and listen to what the > ladies here talk about and what helps them. Try the remedies talked about. > Not all will work for you and most others will. Most of all stay focused > and attitude is of the utmost importance tho you are going to have good > days and bad days. The goal is to have more good days than bad days. > > I understand your sadness. Youfeel like you have had something " stolen " > from you. I know. Wish I could help you more. ML > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Did you try physical therapy? CMake your life easier with all your friends, email, and favorite sites in one place. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 It does not have to be forever! I was like you, could not have sex, could not masturbate, could not wear jeans, or any pants, barely walk some days. I wrote before that energy work allowed me not only to have great tantric sex, and wear jeans again, and hike again, but to be out of pain. We found so many things to treat. Autoimmune things Protozoa's Yeast, mold and other funguses Parasites Mycoplasmas and other energetic things such as cords and things that are hard to explain. I am not married to the man that healed me and am doing the work with him. Love conquers all. Lona www.ClearPointTherapy.com <<<I just get so sad sometimes, how I am not able to have sex with my gorgeous boyfriend who I love. I normally have a "shield" put up so I act like I don't care, and my boyfriend is wonderful in that he is 100% supportive and never brings it up. But last night it just sorta hit me again, and I thought of how much closer we would be if we could be sharing sexual intimacy. >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Ohhh, hun, I have SO been there. I'm 22 as well, and just married the man I was with when I first developed vulvodynia almost 2 years ago. I'm out of treatment now, but still am not 100% back to my old horny self. My now-husband is still very nervous about having sex with me, and I tend to have absolutely no sex drive because every time I think about having sex, I just remember the pain. During my treatment, I spent so many days feeling just awful...depressed that our sex life was on hold, guilty that my now-husband wasn't being satisfied sexually, frustrated that my body wasn't working... But the pain did get better. I was able to have sex with my now-husband again, and he stayed with me through it all and rarely complained. And while I know it's so hard to keep your chin up with this, because it is so painful and discouraging, you have to trust that you will, eventually, get better. You may not be 100% back to your pre-vulvodynia self (I'd say I'm 98% better-I still flare when I'm upset or stressed, but on a normal day, I'm pain-free), but you should be able to be intimate again. I always look at it like I'm too young to have this condition forever, and it really helped me to take my depression and frustration and channel it into anger-the whole " f*ck this condition, I'm not gonna let it win! " kinda thing. It helped me to turn every day from a day where I didn't want to get out of bed, from where I was even telling my now-husband to just leave me and be with someone who wasn't " broken " , to a day where I hit my stretches extra-hard, where I refused to let my bosses put me in situations where I was doing something I shouldn't (I worked retail, and had to fight like crazy to get a chair b/c I couldn't stand for more than 30-45 min), and where I started setting goals (with the help of my PT). I wanted to be graduated from my PT program by my wedding-and you know, I was I had my wedding night, which I was completely convinced I wouldn't be able to have. There IS hope. There IS a light at the end of the tunnel. You've got a man who's patient and understanding, which is an amazing thing. There is so much to live for, and so much to look forward to-we don't have to let this condition beat us!! Staying strict with your treatment program helps, as it's something tangible you can do to help, as well as being proactive with your doctor (i.e. asking lots of questions, giving them detailed updates, asking what else you can be doing, etc. I also made sure to tell my doctors about my goals-my biggest one was being able to bellydance again, which I had to stop once I developed VVS. I gave my PT a DVD of one of my shows, and it really changed how she treated me, from just another client to an actual person with goals and dreams). I hope at least part of this helped some. If you ever need to talk, feel free to e-mail me Beth > > I've been struggling with vulvodynia for about 3 years now. I'm 22 > now. I got this just a few months into my relationship with my > current boyfriend, who I am engaged to now. > > I thought I was getting better the past few weeks; I thought I might > even be healing. Then I got some setback a couple days ago after I > started NAET - that electrodermal testing machine for some reason > really hurt me, maybe something to do with electrical impulses? > anyway, I've just been really set back since then. > > I'm always hoping for when me and my boyfriend can have sex again. I > test in the shower in the morning by inserting some fingers into my > vagina and seeing how bad the pain is. well, it was bad today > > I just get so sad sometimes, how I am not able to have sex with my > gorgeous boyfriend who I love. I normally have a " shield " put up so > I act like I don't care, and my boyfriend is wonderful in that he is > 100% supportive and never brings it up. But last night it just sorta > hit me again, and I thought of how much closer we would be if we > could be sharing sexual intimacy. > > What kills me is that this had to happen so early on in our > relationship. When I was well, I was sorta sleeping around, I'm > ashamed to admit, (got sorta wild last year of high school and > whatnot,) and I'm just so sad that when I was actually well I was > just having sex with random idiots I didn't care about and who didn't > care about me, and now that I've found the man I want to spend the > rest of my life with, we can't have sex > > I'm so sad...I can't bear the idea of having this forever. I already > feel like so much has been taken away from me. I guess I just needed > to vent a little. I could use some support right now When I'm > having a good pain day, my boyfriend refuses to try sex since he's > traumatized from hurting me so many times. he says we can't try > again until I've been pain-free a month, but what if that never > happens? what if it's just good days and bad days? > > I don't know what to do...in a way it's better being sad because I > feel like I'm actually feeling my emotions rather than just shutting > down and acting like I don't care and feeling even further from my > boyfriend. But then when I embrace my emotions...well, frankly I > sometimes don't want to live anymore if it means never being able to > be intimate with the man I love > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 Hi Selena, What did your physical therapy involve? Where do you live? Molly (well, thanks to PT, GOOD PT) To: VulvarDisorders Sent: Sunday, December 14, 2008 3:17:23 PMSubject: Re: feeling sad today Thanks...I have already tried Elavil, Neurontin, physical therapy, herbs. I am now doing the low oxalate diet and NAET. I have seen the most improvement with the low oxalate diet. I will try to hang in there. Thanks for your words of encouragement.Selena>> Dear sbabayancsrYou will get better in time. Just follow the protocol you> learn here about how to care for yourself. NO jeans, no tight pants, White> cotton undies, no bubble bath, use only your hand to clean the area etc.> and find a specialist to help you will medications and listen to what the> ladies here talk about and what helps them. Try the remedies talked about.> Not all will work for you and most others will. Most of all stay focused> and attitude is of the utmost importance tho you are going to have good> days and bad days. The goal is to have more good days than bad days.> > I understand your sadness. Youfeel like you have had something "stolen"> from you. I know. Wish I could help you more. ML> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 It was at a place that specialized in this kind of PT. They did the TENS unit, and would put their fingers inside me and stretch -- it hurt like hell and I never got any improvement. only thing that's worked is my eating four foods diet and even thats not perfect. > > > > Dear sbabayancsrYou will get better in time. Just follow the > protocol you > > learn here about how to care for yourself. NO jeans, no tight > pants, White > > cotton undies, no bubble bath, use only your hand to clean the area > etc. > > and find a specialist to help you will medications and listen to > what the > > ladies here talk about and what helps them. Try the remedies > talked about. > > Not all will work for you and most others will. Most of all stay > focused > > and attitude is of the utmost importance tho you are going to have > good > > days and bad days. The goal is to have more good days than bad > days. > > > > I understand your sadness. Youfeel like you have had > something " stolen " > > from you. I know. Wish I could help you more. ML > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 So with the tens unit, did it stimulate the muscles in your vagina, in hopes to tire them? Did it automatically contract your muscles? To: VulvarDisorders Sent: Sunday, December 14, 2008 8:10:17 PMSubject: Re: feeling sad today It was at a place that specialized in this kind of PT. They did the TENS unit, and would put their fingers inside me and stretch -- it hurt like hell and I never got any improvement. only thing that's worked is my eating four foods diet and even thats not perfect.> >> > Dear sbabayancsrYou will get better in time. Just follow the > protocol you> > learn here about how to care for yourself. NO jeans, no tight > pants, White> > cotton undies, no bubble bath, use only your hand to clean the area > etc.> > and find a specialist to help you will medications and listen to > what the> > ladies here talk about and what helps them. Try the remedies > talked about.> > Not all will work for you and most others will. Most of all stay > focused> > and attitude is of the utmost importance tho you are going to have > good> > days and bad days. The goal is to have more good days than bad > days.> > > > I understand your sadness. Youfeel like you have had > something "stolen"> > from you. I know. Wish I could help you more. ML> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 14, 2008 Report Share Posted December 14, 2008 They actually put it on my lower back, since the nerves in your pelvic region are in your lower back. It sorta helped, but maybe just for a few hours. The actual physical therapy did absolutely nothing. I went for almost 6 months, too. Diet has been the only relief. Selena > > > > > > Dear sbabayancsrYou will get better in time. Just follow the > > protocol you > > > learn here about how to care for yourself. NO jeans, no tight > > pants, White > > > cotton undies, no bubble bath, use only your hand to clean the > area > > etc. > > > and find a specialist to help you will medications and listen to > > what the > > > ladies here talk about and what helps them. Try the remedies > > talked about. > > > Not all will work for you and most others will. Most of all stay > > focused > > > and attitude is of the utmost importance tho you are going to > have > > good > > > days and bad days. The goal is to have more good days than bad > > days. > > > > > > I understand your sadness. Youfeel like you have had > > something " stolen " > > > from you. I know. Wish I could help you more. ML > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Selena: yes, I found DIET helped me. I also tried the same drugs for a LONG tine without success. Last night I actually got into bed and realized I HAD NOT taken my med! To me that is the beginning of not needing it anymore! keep up the good work. hugs, ML Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 What does NAET mean? thanks Kath Thanks...I have already tried Elavil, Neurontin, physical therapy, > herbs. I am now doing the low oxalate diet and NAET. I have seen > the most improvement with the low oxalate diet. I will try to hang > in there. Thanks for your words of encouragement. > > Selena > > > > > > Dear sbabayancsrYou will get better in time. Just follow the > protocol you > > learn here about how to care for yourself. NO jeans, no tight > pants, White > > cotton undies, no bubble bath, use only your hand to clean the area > etc. > > and find a specialist to help you will medications and listen to > what the > > ladies here talk about and what helps them. Try the remedies > talked about. > > Not all will work for you and most others will. Most of all stay > focused > > and attitude is of the utmost importance tho you are going to have > good > > days and bad days. The goal is to have more good days than bad > days. > > > > I understand your sadness. Youfeel like you have had > something " stolen " > > from you. I know. Wish I could help you more. ML > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 It took a few PTs before I found a good one. My first one was a specialist but she didn't help me that much. My second one was awesome. Keep going-you WILL find relief. hugs, Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Hi Selena,Let me just say, it's totally normal to have the feelings that you do right now. I think vulvar pain is so difficult because, not only are we trying to cope with pain, but pain in the most intimate area of our bodies. Which totally sucks! I would venture to say that many, if not all of us, have been on the roller coaster of emotions. I've been with my husband since high school (dating + marriage). We've been through a lot. The last 4 yrs. I've done so much better and we are able to have sex now without all the pain.My point is cry when you feel like you need to, but keep reminding yourself you will get better. Anytime I have a flareup of pain, I pray and keep telling myself..."it's just a flare, it will settle down". I think it really helps to encourage yourself. Sometimes that is really hard when you are hurting like heck...but it can really be beneficial. Try not to be so hard on yourself for past mistakes. We've all made them! Just keep your focus on what's to come and believe it will be something good. Make sure you and your fiance communicate. Snuggle and hug and remember why you fell in love to begin with! I love being married...I'm still crazy about my hubby and he feels the same about me. We work hard on our marriage...and that is something you have to do whether you have pain or not! I hope you get some relief soon. Keep a game plan going. Make a list of the things you would like to try, whether it be meds, or PT, or seeing a new specialist. Keep trying. I'll tell you what I've told many....keep HOPE alive! For many of us, it has taken a few different things to help...so don't give up! ;-) Hugs, ChelleI've been struggling with vulvodynia for about 3 years now. I'm 22 now. I got this just a few months into my relationship with my current boyfriend, who I am engaged to now. I thought I was getting better the past few weeks; I thought I might even be healing. Then I got some setback a couple days ago after I started NAET - that electrodermal testing machine for some reason really hurt me, maybe something to do with electrical impulses? anyway, I've just been really set back since then. I'm always hoping for when me and my boyfriend can have sex again. I test in the shower in the morning by inserting some fingers into my vagina and seeing how bad the pain is. well, it was bad today I just get so sad sometimes, how I am not able to have sex with my gorgeous boyfriend who I love. I normally have a "shield" put up so I act like I don't care, and my boyfriend is wonderful in that he is 100% supportive and never brings it up. But last night it just sorta hit me again, and I thought of how much closer we would be if we could be sharing sexual intimacy. What kills me is that this had to happen so early on in our relationship. When I was well, I was sorta sleeping around, I'm ashamed to admit, (got sorta wild last year of high school and whatnot,) and I'm just so sad that when I was actually well I was just having sex with random idiots I didn't care about and who didn't care about me, and now that I've found the man I want to spend the rest of my life with, we can't have sex I'm so sad...I can't bear the idea of having this forever. I already feel like so much has been taken away from me. I guess I just needed to vent a little. I could use some support right now When I'm having a good pain day, my boyfriend refuses to try sex since he's traumatized from hurting me so many times. he says we can't try again until I've been pain-free a month, but what if that never happens? what if it's just good days and bad days? I don't know what to do...in a way it's better being sad because I feel like I'm actually feeling my emotions rather than just shutting down and acting like I don't care and feeling even further from my boyfriend. But then when I embrace my emotions...well, frankly I sometimes don't want to live anymore if it means never being able to be intimate with the man I love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2008 Report Share Posted December 15, 2008 Nambudripad Allergy Elimination Technique > > > > > > Dear sbabayancsrYou will get better in time. Just follow the > > protocol you > > > learn here about how to care for yourself. NO jeans, no tight > > pants, White > > > cotton undies, no bubble bath, use only your hand to clean the > area > > etc. > > > and find a specialist to help you will medications and listen to > > what the > > > ladies here talk about and what helps them. Try the remedies > > talked about. > > > Not all will work for you and most others will. Most of all stay > > focused > > > and attitude is of the utmost importance tho you are going to > have > > good > > > days and bad days. The goal is to have more good days than bad > > days. > > > > > > I understand your sadness. Youfeel like you have had > > something " stolen " > > > from you. I know. Wish I could help you more. ML > > > > > > Quote Link to comment Share on other sites More sharing options...
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