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» I don't know what to do anymore
Yesterday at 5:05 am by SinclairSassy

» Social Security Disability Benefits
Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

» Vestibulectomy recovery question!
Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 14


If you've ever broken your tailbone, this story is for you!

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If you've ever broken your tailbone, this story is for you!

Post  ksd on Tue Nov 17, 2015 3:24 am

I don't believe I have ever been on a site of this nature in my life. I have been a vulvodynia sufferer for 7 years now and I can sympathize with anyone who is overwhelmed from the intense, ok, excruciating, pain associated with it. I want to tell my story because perhaps someone else will have a similar situation and not even realize it. I'm sure there are many more reasons for vulvodynia than the reason I have it, but I want to give hope to anyone who has this same background.

When I went to my gynecologist about the pain he instantly said, "vulvodynia!" I had no idea what he was talking about, but he was sure of his diagnosis. However, he had no knowledge of how to treat it. He did know that no drugs could touch it. He began by referring me to a dermatologist to be sure it wasn't due to a skin condition. The dermatologist was dumbfounded, not having any idea what to do with me. I had no skin problem and he didn't even know what vulvodynia was. He referred me on to another doctor, who referred me to another doctor, and on it went. I thought we were getting close when I went to a urologist, because I was making so many bathroom visits in a day, and especially at night. I had no bladder problems, so he sent me to bladder therapy. All I learned from that was that my muscles are totally exhausted from fighting accidents around the clock. The treatments were no help at all so I stopped them.

Meanwhile, the pain that I thought was so bad only got worse. When the pain is at its worst, so is the tremendous urge to urinate. That, too, is very painful. I'm only telling this because it has totally disrupted my life and my days and activities are built around the very limited things I can do. The worst thing for me is that I can't travel more than about 30 minutes at a time on a really good day, so even shopping trips are a problem. Perhaps some of you can relate.

I observed myself closely, and I kept telling each doctor that I felt that somehow the pain is connected to my back. I looked at charts of the nervous system and saw that the nerves running from my very low back go to the bladder and the entire vulvar area. Doctor after doctor denied the connection. Only my chiropractor said it made total sense. When I wake up in the morning without pain, all I have to do is lean over to tie a shoe or pick something up and the pain hits hard. I found that sitting helps a lot, but I cannot handle sitting on a chair without a medical cushion. I tried many kinds, and finally found that the ones with a cutout for the tailbone are the best for me.

I had an MRI of my lumbar spine and have a number of problems there: bulging disks, spinal stenosis, arthritis, etc., so that area of my back is bad and I have had chiropractic treatments for that for years. At that time I was given Neurontin to take. Not only did it not work, but I had a bad reaction to it.

Finally, last year, I was referred to doctor number 15. I immediately told him that if he couldn't help me, I was through with my search. I was totally whipped. This doctor was an anesthesiologist who talked with me a long time and said he thought he knew what is causing my problem. He asked if I had ever broken my tailbone. I said I had when I was a young girl in junior high, and then had fallen on it again about 10 years before. He explained that it is not uncommon for a tailbone to heal almost completely, but there might be the slightest part that somehow didn't heal fully. Over time, it can cause this kind of pain. The best part is....They can help with the pain!!!!

I had a series of 3 injections in my tailbone, which is part of the sympathetic nervous system. Please don't hold it against me if I don't get this completely accurate, but the idea is correct (I'm not a medical person in any way). No oral medications can penetrate those nerves, therefore the pain communication between the nerves and the brain can't be interrupted. However, a steroid injection, at least a series of them, can do the job for the most part. I'll take any relief I can! I thought the injections would be horrible, but while they're not my idea of fun, it really wasn't all that bad. After the 3rd injection I felt I was at about 85% improved! The doctor was astonished at my good results because they usually don't see such results when the condition has gone on for so long. We decided I would have one more injection and see if I could get even a bit better. However, right at that time we had to move out of state and I couldn't get the last one.

The amazing thing is, I was able to make the 600+ mile trip both ways to find a home, and then make the trip again when we moved. I hadn't traveled more than 35 miles in 3 years. In between things I did a tremendous amount of heavy work to pack and unpack. My husband had just had back surgery and couldn't do much, so I did more than usual, and I had very little pain! How awesome is that??? We have been here for 5 months now, and the pain is back in all its glory. Only today, the 4 th doctor in my new area said he can repeat the injections and expects good results. I can hardly wait to get them! Also, they can give these throughout my life as needed.

I was also told that I will always have to be careful of my back, and always use my pillow. I carry that thing around like it's my baby blankie! But that's a small price to pay for comfort it gives.

The other factor in my improvement is that there was a tremendous amount of prayer that went into my healing as well. Will I ever be fully healed? I don't know. If not, just being tons better is good enough. Just being able to function normally will be good enough. Not having to get up up to 15 and 20 times in the night will be good enough.

I so hope there are others of you who will find this information a help. If you have ever broken your tailbone and have vulvodynia, please go to the doctor. The only ones I know of who can give those injections are in a pain clinic or are anesthesiologists. My new doctor is an anesthesiologist and works in a pain clinic. Extra good!

By the way, I am 70 years old.


ksd

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