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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

Comments: 4

Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

Comments: 0

Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 3

Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


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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