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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, …

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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 …

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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 …

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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 …

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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


Breaking the pain cycle

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Breaking the pain cycle

Post  Mouse on Fri Nov 19, 2010 9:56 pm

I found this post on another site which could be of interest to those of you who experience constant pain. My specialist also said that pain no matter how it presents is pain.


"My expert-doctor explained to me recently that she viewed PGAD as a chronic pain syndrome (no psychological cause in this disorder as far as she is concerned). In her opinion, arousal is just a form of lower level pain. Her treatment approach is most interesting and I would like to describe it, to see if others have used a similar way to treat their PGAD symptoms, and what success they may have had.

My doctor used an analogy to describe the problem: essentially, there is an express super-highway built from the clitoris to the brain in women with PGAD which manifests itself as persistent arousal. It is very important to get this highway dismantled to breakdown the arousal symptoms. She believes the problem needs to be treated fully from top to bottom in order to have a chance of confusing the brain, and stopping the pain signals. This is what it involves in general:

(1) For the brain - in order to stop the neuropathic pain signals appropriate medication is needed (like gabapentin, lyrica, amitryptyline, prozac depending on the patient)
(2) For the middle area (lower abdomen and low back) the brain needs to be further confused to breakdown the cycle, and nerve blocks are in order; her preference is to use lidocaine injections and blocks are done on both the sacral and pudendal nerves, essentially 4 spots to get each side. The sacral nerve is done first as it is important to go deeper to intercept the nerve signals; if the patient is comfortable pudendal blocks can be done at the same time.
(3) For the bottom, the pain signals need to be interfered with as well. The application to the whole vulva and clitoris of a 5% topical lidocaine gel after urination for 8 weeks is suggested, if it can be tolerated as some degree of pain will be involved at the beginning. If the person finds it really too painful, then stop. If this is not a good choice, then a cream with with gabapentin or amitryptyline could be applied to the area.

This is a top to bottom approach to confuse all those pain signals.

So far I have tried the first two parts of the treatment plan; even if I only had the nerve blocks a few days ago, I can tell they are confusing my pain signals. Way to go! I had practically zero pain for the first 24 hours, and now I get intermittent pain which is different in nature than before (I didn't get stabbing pains before which only lasted seconds, plus once the pain set it there was no way it would reverse in 20-30 minutes or stop if I changed body positions which is the case now). Another interesting thing is that with lidocaine blocks, there was hardly any swelling at the injection sites. Something is definitely happening and that is promising.

I asked the doctor how long I could expect the effects to last. She said the freezing lasts one hour, then the effects of the blocks can last from 2 hours to 2 weeks. Obviously, the longer the pain cycle is broken or interfered with, the more promising this type of treatment will be.

Has anyone had success with any of these elements in combination or separately? I shall await your responses."

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Re: Breaking the pain cycle

Post  Sarah001 on Sat Nov 20, 2010 8:53 pm

I have to say I've also heard breaking the pain loop is very important, I take meds but haven't had nerve blocks at this point and can't tolerate lidocaine on the actual vulva but I think a TENS machine would also help contribute to breaking the cycle and then I believe it's a case of removing perpetuating factors like muscle spasms etc so the nerves can't slip back into old habits. Let us know how you get on.
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Re: Breaking the pain cycle

Post  Mouse on Sat Nov 20, 2010 9:21 pm

Hi Sarah,

That's a post I found on another site, it's not mine. It made a lot of sense so I thought I'd post it.

I tried a numbing cream when this started. It was horrid but I'm keen to hear if anyone has had joy with the Gabapentin and Ami creams. Are they better tolerated if they are not ingested?

I'm trying not to get too excited but I'm in a very low pain phase at the moment. It's been 3 weeks with no pain over 3/10, there's still pressure and a burning pain but nowhere near the degree I've had it in the past.

Vicki

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Re: Breaking the pain cycle

Post  Mouse on Sun Nov 21, 2010 12:38 am

This is the latest update... the person is in Canada.

Thanks for rejoicing with me, as this is a positive change in my treatment. This urogynecologist used lidocaine only for nerve blocks; she explained that lidocaine freezing lasts one hour. The purpose of the blocks was to try and break the firing of pain signals. Also, the doctor explained that her other patients had felt relief anywhere from 2 hours to 2 weeks. I felt very little pain during the procedure, and as the sacral blocks were done first, when she did the last pudendal block as there are two, it was easier than the first. She said that was because the first blocks were already working and interrupting the pain!

I liked the use of lidocaine in the nerve blocks, as no guided CT scan is needed. This doctor is a pro, she palpated the spots to be injected, and gently and skillfully inserted the needle releasing lidocaine at each stop, right from the surface of the skin to deeper levels of tissue. Lidocaine in nerve blocks made it that I had minimal swelling at the injection sites and I healed faster. Then 48 hours after the procedure, I went for a gentle swim at the pool to get my joints moving.

So far, I have had 3 good days in a row, with some short bouts of a different kind of pain (like some stabbing, or spasms in the vulva - not the usual raw burning pain from before) mixed in with some arousal; prior to the blocks, once the pain started, it would only get worse. After the blocks, the pain would go on and off by itself - it helped if I changed position. I am very pleased with this result, as I know for sure that the nerve blocks have managed to change the pain pattern.

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Re: Breaking the pain cycle

Post  jules on Mon Nov 22, 2010 4:54 am

Gabepentin gel burned my skin. i also could not tolerate the lidocaine gel either...it stung and would only last for 15 minutes after the stinging stopped. As for the nerve blocks, i had two, but they were not in the pudendal nerve, they were in the nerves lower in the spine. i had relief for six days and i don't know if there was a connection. i will be very interested to see if you get on-going relief from your block. keep us updated.

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Re: Breaking the pain cycle

Post  Mouse on Mon Nov 22, 2010 6:35 am

OOOoooiii it's not my post!!! I copied it from another support group because I thought it sounded like a great treatment plan.

No nerve blocks for me! Yet. Bummer about the creams though.

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Re: Breaking the pain cycle

Post  chester on Wed Nov 24, 2010 3:11 am

HI! I have a question, What is a TENS machine and how does it help break the pain cycle?

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Re: Breaking the pain cycle

Post  Sebby (Admin) on Sun Nov 28, 2010 11:41 am


Hey guys im waiting for a nerve block...if the general one is not so good they are going to try the pudendal block. Im not sure how long either will last on me or if they will be any good..im just waiting to see.

http://www.tensmachines.blogspot.com/ - this little article expains simply how the tens works.

I use a tse machine that is similar but is suppossed to work better. I will try that (my mum lent it to me) and also a buy a cheaper Tens to see the difference.

I do feel a difference when using it.. recently the battery went and I had to pick up a new one and have noticed more pain..(I am on my period so my pain does get worse then) so I have new battery now so will start up the treatment again

I do hope the nerve block can give me some relief..I dont exactly know how long it will last on me but at my local hosp its a day patient thing and so I would need to book whole day off work..I may need to do that if I find it helpful every few weeks and am quite afriad of having to expain that to work..My line manager is lovely so Im not worried bout that but not so sure bout the new overall boss we will be getting.

Its also something I dont want to have to explain to a man I hardly know..I mean my line manager is a women thank goodness....I may have to refer myself to occupational health just in case if I do need the regular blocks.

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