Guest guest Posted September 21, 2008 Report Share Posted September 21, 2008 I just got diagnosed with Vulvar Vestibulitis 2 days ago. It all makes sense now because I was diagnosed with vaginismus 2 years ago and for 2 years, have been trying to figure out why I have that. I have been going through physical therapy and dilators to deal with that issue and I'm almost at the end of it. But now that I know I have VV, I have to say, that I was really relieved to find out that I have it. I realize now that that's what led to my vaginismus. I also have a lot of frustration. Wish the doctors could've found that out 2 bloody years ago!!!! (Sorry...I have some frustration and anger). I have been googling on the net for 2 whole days and have found nothing solid but getting myself more depressed! They have no known cause and no known cure for VV. So, where do women go for help? We go from treatment to treatment for months or years and hopefully, they'll find a cure for us along the way??? I'm so confused and depressed and frustrated now. My doctor gave me a topical cream called cromolyn. Anyone heard of it or used it? He said to try that for a month and then come for a follow up. I am happy to be a part of this group and read what other women have tried, succeeded with or not succeeded with. Thanks! Monalisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi, I am not sure where you live but I would find a doc that specializes in vulvar pain. When I was diagnosed I was upset, depressed etc. After searching I finally found a doc who has alot of experience with this and who assured me he would help and is taking a multi-disciplinary approach to treatment that includes a prescription of Elavil (antidepressent at night but at a very low dosage, Allegra (antihistamine for inflammation; once in morning on empty stomach), low oxalate diet (there is a cookbook out there just google it), no underwear, calcium magnesium after large meals, and sitz baths. Love and support is also a must. Also, refraining from sex until the pain was controllable. He has gotten me to a point where we can talk about going off the meds, gradually, and reuming sex. This is after 2.5 months of treatment. Everyone is different so it is hard to know what works for everyone but I would try and find a doc that takes a multidisciplinary approach to treatment and who is willing to work through this. It is amazing and scary how many OBGYN's and GYN's there are out there who don't know about Vulvodynia. Good luck. I just got diagnosed with Vulvar Vestibulitis 2 days ago. It all makessense now because I was diagnosed with vaginismus 2 years ago and for2 years, have been trying to figure out why I have that. I have been going through physical therapy and dilators to deal with that issueand I'm almost at the end of it. But now that I know I have VV, I haveto say, that I was really relieved to find out that I have it. Irealize now that that's what led to my vaginismus. I also have a lot of frustration. Wish the doctors could've found that out 2 bloodyyears ago!!!! (Sorry...I have some frustration and anger).I have been googling on the net for 2 whole days and have foundnothing solid but getting myself more depressed! They have no known cause and no known cure for VV. So, where do women go for help? We gofrom treatment to treatment for months or years and hopefully, they'llfind a cure for us along the way??? I'm so confused and depressed and frustrated now. My doctor gave me a topical cream called cromolyn. Anyone heard of it or used it? He saidto try that for a month and then come for a follow up.I am happy to be a part of this group and read what other women havetried, succeeded with or not succeeded with. Thanks! Monalisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 , I'm curious to know how many mg of calcium magnesium do you take a day? What brand do you take? I want to start incorporating this into my treatment plan. I've currently been tossed around from doctor to doctor and not on a multi-disciplinary approach like I should be at this point. ~~ Re: Hi all, I'm new here Hi, I am not sure where you live but I would find a doc that specializes in vulvar pain. When I was diagnosed I was upset, depressed etc. After searching I finally found a doc who has alot of experience with this and who assured me he would help and is taking a multi-disciplinary approach to treatment that includes a prescription of Elavil (antidepressent at night but at a very low dosage, Allegra (antihistamine for inflammation; once in morning on empty stomach), low oxalate diet (there is a cookbook out there just google it), no underwear, calcium magnesium after large meals, and sitz baths. Love and support is also a must. Also, refraining from sex until the pain was controllable. He has gotten me to a point where we can talk about going off the meds, gradually, and reuming sex. This is after 2.5 months of treatment. Everyone is different so it is hard to know what works for everyone but I would try and find a doc that takes a multidisciplinary approach to treatment and who is willing to work through this. It is amazing and scary how many OBGYN's and GYN's there are out there who don't know about Vulvodynia. Good luck. On Sun, Sep 21, 2008 at 8:54 PM, monalisamds <monalisamds (AT) yahoo (DOT) ca> wrote: I just got diagnosed with Vulvar Vestibulitis 2 days ago. It all makes sense now because I was diagnosed with vaginismus 2 years ago and for 2 years, have been trying to figure out why I have that. I have been going through physical therapy and dilators to deal with that issue and I'm almost at the end of it. But now that I know I have VV, I have to say, that I was really relieved to find out that I have it. I realize now that that's what led to my vaginismus. I also have a lot of frustration. Wish the doctors could've found that out 2 bloody years ago!!!! (Sorry...I have some frustration and anger). I have been googling on the net for 2 whole days and have found nothing solid but getting myself more depressed! They have no known cause and no known cure for VV. So, where do women go for help? We go from treatment to treatment for months or years and hopefully, they'll find a cure for us along the way??? I'm so confused and depressed and frustrated now. My doctor gave me a topical cream called cromolyn. Anyone heard of it or used it? He said to try that for a month and then come for a follow up. I am happy to be a part of this group and read what other women have tried, succeeded with or not succeeded with. Thanks! Monalisa Find phone numbers fast with the New AOL Yellow Pages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Hi: I used Cromolyn compounded in Aloe Gel. I can't say it did anything for me. I have constant burning, no pain on contact. Sherri -------------- Original message -------------- > > I just got diagnosed with Vulvar Vestibulitis 2 days ago. It all makes > sense now because I was diagnosed with vaginismus 2 years ago and for > 2 years, have been trying to figure out why I have that. I have been > going through physical therapy and dilators to deal with that issue > and I'm almost at the end of it. But now that I know I have VV, I have > to say, that I was really relieved to find out that I have it. I > realize now that that's what led to my vaginismus. I also have a lot > of frustration. Wish the doctors could've found that out 2 bloody > years ago!!!! (Sorry...I have some frustration and anger). > > I have been googling on the net for 2 whole days and have found > nothing solid b ut getting myself more depressed! They have no known > cause and no known cure for VV. So, where do women go for help? We go > from treatment to treatment for months or years and hopefully, they'll > find a cure for us along the way??? > > I'm so confused and depressed and frustrated now. My doctor gave me a > topical cream called cromolyn. Anyone heard of it or used it? He said > to try that for a month and then come for a follow up. > > I am happy to be a part of this group and read what other women have > tried, succeeded with or not succeeded with. Thanks! > > Monalisa > > > > > > > ------------------------------------ > > **IF REPLYING TO THIS POST, PLEASE REMOVE ORIGINAL POST, > Thanks for your cooperation! ** > > *** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Don't accept that you will never get better. Most women do get better. I had docs tell me I would never get well and two years into this I am WAY better and even having a baby. Physical therapy helped me a lot, as did estrace cream topically (form of estrogen-even though I'm 32 and blood levels are normal), and getting repeat infections under control. Hang in there and keep trying things until they work. Usually just one thing won't do the trick-it's a combination of things that seems to help the most. Lindsey Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Hi, I bought the pills at Walgreens (calcium citrate) and take two pills after every large meal; basically I take 2 -4 pills a day (2 after lunch and 2 after dinner) because I do not consider my breakfast to be large as I graze my way through the morning. I don't have the bottle with me right now but I can check and get back to you if you need me to. Hope this helps. Yes, demand a multidisciplinary approach to treatment because there is no sure fix you will need the combination of treatments. My doc believes that just one thing alone will not work so if I just did the low oxalate diet without the elavil, allegra, calcium citrate it would not work. Good luck, ,I'm curious to know how many mg of calcium magnesium do you take a day? What brand do you take? I want to start incorporating this into my treatment plan. I've currently been tossed around from doctor to doctor and not on a multi-disciplinary approach like I should be at this point. ~~ Re: Hi all, I'm new here Hi, I am not sure where you live but I would find a doc that specializes in vulvar pain. When I was diagnosed I was upset, depressed etc. After searching I finally found a doc who has alot of experience with this and who assured me he would help and is taking a multi-disciplinary approach to treatment that includes a prescription of Elavil (antidepressent at night but at a very low dosage, Allegra (antihistamine for inflammation; once in morning on empty stomach), low oxalate diet (there is a cookbook out there just google it), no underwear, calcium magnesium after large meals, and sitz baths. Love and support is also a must. Also, refraining from sex until the pain was controllable. He has gotten me to a point where we can talk about going off the meds, gradually, and reuming sex. This is after 2.5 months of treatment. Everyone is different so it is hard to know what works for everyone but I would try and find a doc that takes a multidisciplinary approach to treatment and who is willing to work through this. It is amazing and scary how many OBGYN's and GYN's there are out there who don't know about Vulvodynia. Good luck. I just got diagnosed with Vulvar Vestibulitis 2 days ago. It all makessense now because I was diagnosed with vaginismus 2 years ago and for2 years, have been trying to figure out why I have that. I have been going through physical therapy and dilators to deal with that issueand I'm almost at the end of it. But now that I know I have VV, I haveto say, that I was really relieved to find out that I have it. Irealize now that that's what led to my vaginismus. I also have a lot of frustration. Wish the doctors could've found that out 2 bloodyyears ago!!!! (Sorry...I have some frustration and anger).I have been googling on the net for 2 whole days and have foundnothing solid but getting myself more depressed! They have no known cause and no known cure for VV. So, where do women go for help? We gofrom treatment to treatment for months or years and hopefully, they'llfind a cure for us along the way??? I'm so confused and depressed and frustrated now. My doctor gave me a topical cream called cromolyn. Anyone heard of it or used it? He saidto try that for a month and then come for a follow up.I am happy to be a part of this group and read what other women havetried, succeeded with or not succeeded with. Thanks! Monalisa Find phone numbers fast with the New AOL Yellow Pages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 Are you taking calcium citrate without Vitamin D? Ora On Tue, 23 Sep 2008 09:06:21 -0400, " Balzano " jbalz600@...> wrote: >Hi, >I bought the pills at Walgreens (calcium citrate) and take two pills after >every large meal; basically I take 2 -4 pills a day (2 after lunch and 2 >after dinner) because I do not consider my breakfast to be large as I graze >my way through the morning. I don't have the bottle with me right now but I >can check and get back to you if you need me to. >Hope this helps. Yes, demand a multidisciplinary approach to treatment >because there is no sure fix you will need the combination of treatments. My >doc believes that just one thing alone will not work so if I just did the >low oxalate diet without the elavil, allegra, calcium citrate it would not >work. > >Good luck, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 If you could let me know how many mgs that'd be great. My current treatment plan is elavil 10 mg (only been on since Sept.12th), estradiol w/emu applied to the 6 o'clock area 1x a day and Claritin. I plan on adding the lidocaine cotton ball treatment to my treatment plan. Have you heard of this or tried it yourself? ** Re: Hi all, I'm new here Hi, I am not sure where you live but I would find a doc that specializes in vulvar pain. When I was diagnosed I was upset, depressed etc. After searching I finally found a doc who has alot of experience with this and who assured me he would help and is taking a multi-disciplinary approach to treatment that includes a prescription of Elavil (antidepressent at night but at a very low dosage, Allegra (antihistamine for inflammation; once in morning on empty stomach), low oxalate diet (there is a cookbook out there just google it), no underwear, calcium magnesium after large meals, and sitz baths. Love and support is also a must. Also, refraining from sex until the pain was controllable. He has gotten me to a point where we can talk about going off the meds, gradually, and reuming sex. This is after 2.5 months of treatment. Everyone is different so it is hard to know what works for everyone but I would try and find a doc that takes a multidisciplinary approach to treatment and who is willing to work through this. It is amazing and scary how many OBGYN's and GYN's there are out there who don't know about Vulvodynia. Good luck. On Sun, Sep 21, 2008 at 8:54 PM, monalisamds <monalisamds (AT) yahoo (DOT) ca> wrote: I just got diagnosed with Vulvar Vestibulitis 2 days ago. It all makes sense now because I was diagnosed with vaginismus 2 years ago and for 2 years, have been trying to figure out why I have that. I have been going through physical therapy and dilators to deal with that issue and I'm almost at the end of it. But now that I know I have VV, I have to say, that I was really relieved to find out that I have it. I realize now that that's what led to my vaginismus. I also have a lot of frustration. Wish the doctors could've found that out 2 bloody years ago!!!! (Sorry...I have some frustration and anger). I have been googling on the net for 2 whole days and have found nothing solid but getting myself more depressed! They have no known cause and no known cure for VV. So, where do women go for help? We go from treatment to treatment for months or years and hopefully, they'll find a cure for us along the way??? I'm so confused and depressed and frustrated now. My doctor gave me a topical cream called cromolyn. Anyone heard of it or used it? He said to try that for a month and then come for a follow up. I am happy to be a part of this group and read what other women have tried, succeeded with or not succeeded with. Thanks! Monalisa Find phone numbers fast with the New AOL Yellow Pages! Find phone numbers fast with the New AOL Yellow Pages! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 I am taking Calcium Citrate Plus with Magnesium and Vitamin D. I am using the store brand and they do not list the mgs on the bottle but here is the breakdown on the back: Vitamin d = 250 IU Calcium= 500 mg Vitamin B6=10 mg Magnesium= 80 mg Zinc=10 mg Copper= 1 mg Maganese= 1 mg Boron= 1 mg I have never tried the lidocaine cotton ball treatment.... Are you taking calcium citrate without Vitamin D? Ora On Tue, 23 Sep 2008 09:06:21 -0400, " Balzano " wrote: >Hi,>I bought the pills at Walgreens (calcium citrate) and take two pills after>every large meal; basically I take 2 -4 pills a day (2 after lunch and 2>after dinner) because I do not consider my breakfast to be large as I graze >my way through the morning. I don't have the bottle with me right now but I>can check and get back to you if you need me to.>Hope this helps. Yes, demand a multidisciplinary approach to treatment >because there is no sure fix you will need the combination of treatments. My>doc believes that just one thing alone will not work so if I just did the>low oxalate diet without the elavil, allegra, calcium citrate it would not >work.>>Good luck,> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2008 Report Share Posted September 23, 2008 The reason I asked is because the University of Michigan and Dr. Solomon of VPF recommend Calcium Citrate without Vitamin D, to be taken 45 minutes before meals on an empty stomach. You might get better results if you take your vitamin D several hours apart from the Calcium Citrate. When it is taken with the Vitamin D it is absorbed through the walls of the large intestine and colon and would not be as effective. Ora On Tue, 23 Sep 2008 22:36:00 -0400, " Balzano " jbalz600@...> wrote: >I am taking Calcium Citrate Plus with Magnesium and Vitamin D. I am using >the store brand and they do not list the mgs on the bottle but here is the >breakdown on the back: >Vitamin d = 250 IU >Calcium= 500 mg >Vitamin B6=10 mg >Magnesium= 80 mg >Zinc=10 mg >Copper= 1 mg >Maganese= 1 mg >Boron= 1 mg > >I have never tried the lidocaine cotton ball treatment.... > > > >> Are you taking calcium citrate without Vitamin D? >> >> Ora >> >> On Tue, 23 Sep 2008 09:06:21 -0400, " Balzano " jbalz600@... >> > >> wrote: >> >> >Hi, >> >I bought the pills at Walgreens (calcium citrate) and take two pills after >> >every large meal; basically I take 2 -4 pills a day (2 after lunch and 2 >> >after dinner) because I do not consider my breakfast to be large as I >> graze >> >my way through the morning. I don't have the bottle with me right now but >> I >> >can check and get back to you if you need me to. >> >Hope this helps. Yes, demand a multidisciplinary approach to treatment >> >because there is no sure fix you will need the combination of treatments. >> My >> >doc believes that just one thing alone will not work so if I just did the >> >low oxalate diet without the elavil, allegra, calcium citrate it would not >> >work. >> > >> >Good luck, >> > Quote Link to comment Share on other sites More sharing options...
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