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Vulvadynia????I I am so scared!
HI guys! Pretty new to this......but here is my question!! I was diagnosed with Herpes 2 years ago. In th past year I have felt like I have had an "ongoing" outbreak". It has been itching, burning, stinging and the vaginal area is VERY red and raw. My doctor has suggested Vulvadynia and referred me to a Dermatologists. I have been reading TONs of stuff on this "condition" ( I think caused by the Herpes Virus and damage to my nereves???) and NOTHING looks promising!! There seems to be no relief for this condition! I am petrified and in pain! I am hoping someone has some good news about Vulvadynia while I await my Derm. appointment!! I appreciate any information! Thank you so much for reading this and taking the time to respond!!! :)
Hi Hope80, how are you these days? Please tell me you are doing well and how/what has helped. When I was reading your original post, I couldn't stop thinking about it, as I feel like it's my story too and I am terrified. All I do is cry now and pray for the day I wake up and feel like "me" again. I look forward to hearing back from you or any of the ladies on this post w/positive updates. I need some hope & encouragement to go on with life right now. Thank you.
I've had generalized vulvodynia for about two years now. I'm currently taking 300mg neurontin 3xday and 100 mg Savella daily. I've tried radio frequency lesioning to deaden the pudendal nerve, a spinal block, Botox (just in vestibule area) - all without any significant relief. Currently, I'm working with a massage therapist who specializes in trigger point therapy. He's working on my adductor muscles in my thighs to release the tension/spasms. This is the only relief I've had except for the medication I'm taking and physical therapy last year to strengthen the pelvic floor muscles. Hope this will be helpful to any of you out there who haven't found any relief.
hi guys im knew to this i have been tested for urine infections swabs no outcome various creams. i went to the docters yesterday i have been looking at the websites and have noticed i have all the symptons of vulvodynia i adv my docter yesterday and he gave me lidocaine ointment and amitriptyle which i havent tried as of yet i am 21 years old and supposed to be moving in 2 months but im so scared due to the pain im in to go can u direct me in the right place docters dont seem to help
thankyou so much
thankyou so much
Just wanted to add what has helped me. I suffered from undiagnosed vaginal pain for almost a year before I was diagnosed with vulvodynia. My doctor thinks it was caused by an e.coli and/or herpes infection. The virus damaged the nerves. Well, I have been taking Lyrica for about 9 months, and it has been a life saver. I have almost no pain. I feel 99% better!
The one thing I have learned, is, it just takes time. The process of finding out what exactly is causing your pain, i.e. infection, muscle tension, over active nerves, etc. and finding what treatment will work for you (everybody is different) just takes time. Also, finding a caring doc can make all the difference.
Some women have had spontaneous relief. I believe these are few though. I wouldn't rush to drugs alone either. There are many different layers to this chronic pain. You have to treat/attack all of them at the same time.
This is what seems to be finally working for me.
Weekly diflucan. I seem to be highly sensitive to candida.
2-3x a day lidocaine ointment. I use coconut oil inbetween times when things are irritated.
Weekly pt. My current pt does alot of myfacial release. I've also had a lot of internal work done and some biofeedback (I'm not very good at doing it anymore) Every part of your body is connected. You may have tightness in your upper body that is contributing to your lower half. That sort of thing.
And as I stated before I am on an antidepressant called doxepin. You don't take these at the same doses that folks do when they are using them for depression, you take them at a lower dose. You usually start out low and work your way up until you start to feel better or can't handle the side effects.
I've been dealing with this for almost 3yrs. It took 2 yrs to find out just what was going on. I am just now, (like a few days ago) starting to once again feel better. I've had brief respites depending upon treatment and current life issues but for the most part I was constantly in pain ranging from minor to a 7 (on a scale of 1-10) when things were at their worst.
Vulvodynia is treatable. You can be pain free again. It's hard getting over the 'I want the pain gone now!!!" I had some very dark moments. I was lucky both my son and bf are understanding. My bf is the best. I had only been with him for 6 months when this hit. It truly bites.
I suggest reading the following books, Dr. Glazers 'The Vulvodynia Survival Guide' and Dr. Elizabeth Stewarts 'The 'V' book'. There is a lot of usefull information in there that should help ease your fears. You can also check out the FAQ section of Dr. Glazer's website vulvodynia.com.
Be persistent. If a particular doc isn't working for you, leave and go find another one.
Some women have had spontaneous relief. I believe these are few though. I wouldn't rush to drugs alone either. There are many different layers to this chronic pain. You have to treat/attack all of them at the same time.
This is what seems to be finally working for me.
Weekly diflucan. I seem to be highly sensitive to candida.
2-3x a day lidocaine ointment. I use coconut oil inbetween times when things are irritated.
Weekly pt. My current pt does alot of myfacial release. I've also had a lot of internal work done and some biofeedback (I'm not very good at doing it anymore) Every part of your body is connected. You may have tightness in your upper body that is contributing to your lower half. That sort of thing.
And as I stated before I am on an antidepressant called doxepin. You don't take these at the same doses that folks do when they are using them for depression, you take them at a lower dose. You usually start out low and work your way up until you start to feel better or can't handle the side effects.
I've been dealing with this for almost 3yrs. It took 2 yrs to find out just what was going on. I am just now, (like a few days ago) starting to once again feel better. I've had brief respites depending upon treatment and current life issues but for the most part I was constantly in pain ranging from minor to a 7 (on a scale of 1-10) when things were at their worst.
Vulvodynia is treatable. You can be pain free again. It's hard getting over the 'I want the pain gone now!!!" I had some very dark moments. I was lucky both my son and bf are understanding. My bf is the best. I had only been with him for 6 months when this hit. It truly bites.
I suggest reading the following books, Dr. Glazers 'The Vulvodynia Survival Guide' and Dr. Elizabeth Stewarts 'The 'V' book'. There is a lot of usefull information in there that should help ease your fears. You can also check out the FAQ section of Dr. Glazer's website vulvodynia.com.
Be persistent. If a particular doc isn't working for you, leave and go find another one.
THANK YOU!!! I appreciate all of the input! I just keep hoping and praying that one day I will wake up and it will all be gone!!!.....so far, not so much luck on that one! Do you know if it is possible that it goes away on its own....or are drugs my best option???!!! Don;t get me wrong. I am VERY willing to take any and all drugs that come my way in order to get this fixed!!!
I mainly am worried that there is judt no way to "fix" this only mask the pain. I as too scared to even attempt tp try to be in a relationship because I don'y think anyone will understand.....I just want someone to tell me "THis WILL get better"!
Sorry, I am ramblinmg! How long have you had thhis and are you still in pain?
Thanks so much for your detailed response, Free Spirit!
I mainly am worried that there is judt no way to "fix" this only mask the pain. I as too scared to even attempt tp try to be in a relationship because I don'y think anyone will understand.....I just want someone to tell me "THis WILL get better"!
Sorry, I am ramblinmg! How long have you had thhis and are you still in pain?
Thanks so much for your detailed response, Free Spirit!
First off, relax. Being tense and stressed out will not help. All of the things that monkey flower mentioned are good.
A few more things that might help: a sitz bath, using a small water bottle to rinse off after urinating. Pat yourself dry, don't wipe or rub. Don't use fabric softeners or any thing that has perfume in it. Do not use always pads. Many women are alergic to them.
Pay attention to what you eat. Some women find things get worse after eating or drinking certain foods. To ease the irritation, you can use either a bag of frozen peas or (my fav.) a cold beer bottle placed gently next to the inflammed tissues. Do not use ice, you may cause more damage. You can use a little crisco, olive oil or coconut oil on the vulvar lips to help with friction. I like the coconut oil the best.
Physical therapy is a must in my opinion. It's really important to find out if your pelvic muslces are ok and not tight. The constant tightness pisses off the nerves. You should also have the alignment of your spin and whole body checked out. A good pt can do this for you. If something is out of whack it can put pressure on the nerves that end in your vulvar area.
Don't be too afraid to try drugs. Many of them you can start out with a really low dose and work your way up. They affect everybody different. I tried nor-triptyline at a dose of 2mgs. I felt like a total zombie and couldn't function to well at work. The 'working' dose is usually around 150mgs. I'm currently on doxepin and it seems to be helping. You can also get a lidocaine ointment that will relieve the pain. It burns at first, but when I was at my worst, the burn brought sweet relief.
Also, don't try to have sex of any kind. It's not worth the increased pain at this point in time.
Yahoo has two good groups that might be worth you joining. vulvar disorders and the happy pelvis. The women on those boards have a lot of combined knowledge. You are going to have to be your own best advocate. The fact that your doctor knew about vulvodynia and even suggested where to go to start getting help is a huge step toward relief. That's usually the hardest part, getting diagnosed. If you want to talk off of the boards, you can e-mail me at:
free_spirit_05158***@****.
A few more things that might help: a sitz bath, using a small water bottle to rinse off after urinating. Pat yourself dry, don't wipe or rub. Don't use fabric softeners or any thing that has perfume in it. Do not use always pads. Many women are alergic to them.
Pay attention to what you eat. Some women find things get worse after eating or drinking certain foods. To ease the irritation, you can use either a bag of frozen peas or (my fav.) a cold beer bottle placed gently next to the inflammed tissues. Do not use ice, you may cause more damage. You can use a little crisco, olive oil or coconut oil on the vulvar lips to help with friction. I like the coconut oil the best.
Physical therapy is a must in my opinion. It's really important to find out if your pelvic muslces are ok and not tight. The constant tightness pisses off the nerves. You should also have the alignment of your spin and whole body checked out. A good pt can do this for you. If something is out of whack it can put pressure on the nerves that end in your vulvar area.
Don't be too afraid to try drugs. Many of them you can start out with a really low dose and work your way up. They affect everybody different. I tried nor-triptyline at a dose of 2mgs. I felt like a total zombie and couldn't function to well at work. The 'working' dose is usually around 150mgs. I'm currently on doxepin and it seems to be helping. You can also get a lidocaine ointment that will relieve the pain. It burns at first, but when I was at my worst, the burn brought sweet relief.
Also, don't try to have sex of any kind. It's not worth the increased pain at this point in time.
Yahoo has two good groups that might be worth you joining. vulvar disorders and the happy pelvis. The women on those boards have a lot of combined knowledge. You are going to have to be your own best advocate. The fact that your doctor knew about vulvodynia and even suggested where to go to start getting help is a huge step toward relief. That's usually the hardest part, getting diagnosed. If you want to talk off of the boards, you can e-mail me at:
free_spirit_05158***@****.
Monkeyflower, thank you soooo very much for responding!!! I am an a little scared to take antidepressants due to the side effects....but I hear that is one of the main ways to treat Vulvodynia. I just feel like "I have herpes, why is this other condition happening to me, too. NOT FAIR!". I know I need to get in a better mind set. I am usually pretty optimistic!!! Thanks for your help and support! I am trying to keep my stress level down until I REALLY know what is going on! THANKS AGAIN! I'll keep you updated!
If this is a constant thing, it's not herpes. I'm assuming you've been checked thoroughly for infections... Anyway, if the dermatologist isn't helpful, consider looking for a pelvic pain specialist (it's a subset of gynecology). Apparently they aren't all that easy to find, but it's worth the effort--even if you have to travel a bit. If you have a teaching hospital nearby, that might be a good place to start.
I don't know what you've been reading, but there certainly are treatments for vulvodynia. There was a woman with vulvar vestibulitis who chronicled her treatment on a board I used to frequent... so I'll pass along some of what worked for her. Some things you can try at home: stop using soap on your vulva. Just water is fine for washing (seriously). Wear cotton underwear or none at all, and avoid tight jeans/pants. Wash clothes in fragrance-free detergent.
Your doctor can prescribe tricyclic antidepressants (the older antidepressants, like Elavil, have been shown effective on neuropathic pain), or Neurontin (also shown effective on neuropathic pain), or maybe estrogen cream. Sometimes you can benefit from physical therapy, if it seems that your pelvic floor muscles are overly tense. Usually sex therapy should be included in treatment, because all this pelvic pain can trigger all kinds of issues sexually. Intercourse is painful, so you tense up, so it hurts worse, so you become more tense. Before you know it, even when the actual cause of the pain is treated, the fear/expectation of pain causes it to be painful anyway, and it can create a real aversion to sex.
In any case, I wish you all the best. Don't stress out too much; it will get better. While you wait for your appt, there's some good info on vulvodynia online, including online vulvodynia support groups :-)
I don't know what you've been reading, but there certainly are treatments for vulvodynia. There was a woman with vulvar vestibulitis who chronicled her treatment on a board I used to frequent... so I'll pass along some of what worked for her. Some things you can try at home: stop using soap on your vulva. Just water is fine for washing (seriously). Wear cotton underwear or none at all, and avoid tight jeans/pants. Wash clothes in fragrance-free detergent.
Your doctor can prescribe tricyclic antidepressants (the older antidepressants, like Elavil, have been shown effective on neuropathic pain), or Neurontin (also shown effective on neuropathic pain), or maybe estrogen cream. Sometimes you can benefit from physical therapy, if it seems that your pelvic floor muscles are overly tense. Usually sex therapy should be included in treatment, because all this pelvic pain can trigger all kinds of issues sexually. Intercourse is painful, so you tense up, so it hurts worse, so you become more tense. Before you know it, even when the actual cause of the pain is treated, the fear/expectation of pain causes it to be painful anyway, and it can create a real aversion to sex.
In any case, I wish you all the best. Don't stress out too much; it will get better. While you wait for your appt, there's some good info on vulvodynia online, including online vulvodynia support groups :-)
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