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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: 3

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

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 3

Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5


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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Join date : 2015-11-17

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