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I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

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Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 1

New member desperate need of other vulvadynia sufferers

Fri Feb 08, 2019 6:55 pm by Tfc13

Hi there hope some1 reading this is going through the same shit as me!, I'm new to this so don't really know where to start , I'm Teresa , I've just been diagnosed with vestibular vulvadynia , after countless appointments with GPS being misdiagnosed, tested for god knows everything , eventually under my gynochologist ,who done all her necessary tests, I now have been given a diagnosis I'm in …

Comments: 5

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 7

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 13

Hello. Happy to have found this group.

Fri Dec 07, 2018 9:01 pm by foxysugarpants

I am new here and hope to gain some insight into my vulva pain. I suffered for a long time not realizing that there are ways to feel better. I saw the Dr. yesterday and I am starting P/T pelvic and valium suppositories. queen

Comments: 0


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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