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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, …

Comments: 6

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: 5

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 …

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


After 3 years, finally on the right path!

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After 3 years, finally on the right path!

Post  sailor_moon on Sun Jul 24, 2016 11:57 am

Ok Ladies...so after 3 long and extremely hard miserable years, I am finally on the right path and getting the right treatment.

After 2 successful nerve blocks and my symptom history, I finally got to see the only Pudental nerve specialist in the southern hemisphere! And I pretty much have been diagnosed with pudental neuralgia...no surprise at this point given my symptoms.

He first asked my history and symptoms. He then got me to walk back and forth pacing the room. He then went on to press on areas of my back, butt and legs asking where hurt. He then gave me a vulva examination and used a Q tip to do a series of different movements 'tapping' with the q tip and 'brushing' the Q tip on specific areas.

He also believes that the menstrual regulating drug I'm taking has affected the tissue down there further adding to the inflammation.

He believes the cause of the problem is muscular, the muscles are constantly in a spasm and are bulking, causing pudental nerve trauma. given my excessive exercise history and the fact I have had a few falls on my ass over the years.

Treatment for now is a combo cream of 2% Amitripteline  and 0.05% estrogen, and once I get a GP referral, 3 months of physiotherapy by one of his trained physiotherapists [ I get 5 free sessions if I get my GP to refer me!]

Also, I am getting a special pudental nerve MRI done next week, to see whats going on and just in case of entrapment, but he highly doubts its entrapped at this point. We will just have to wait and see.

Dont give up hope ladies!! I believe we will all find a cure or means of relief, we just need the right doctor who is willing to help us. It has taken me 3 long, and very hard years to get the right help, but I never gave up, even though 14 other doctors told me to.

Any advice would be much appreciated. I will try and keep you all updated.


Last edited by sailor_moon on Sun Jul 31, 2016 5:38 am; edited 1 time in total
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Re: After 3 years, finally on the right path!

Post  emalita on Sun Jul 24, 2016 2:07 pm

That's great news! I hope this doctor and treatment regimen are finally the answers to your pain Very Happy

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Re: After 3 years, finally on the right path!

Post  PainBlogger on Sun Jul 24, 2016 8:35 pm

That's great new after so much frustration. Good luck with the cream and the physio.

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Re: After 3 years, finally on the right path!

Post  WaahwaahUK on Mon Jul 25, 2016 8:17 pm

Wishing you much luck and pain relief! Keep us posted.

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Re: After 3 years, finally on the right path!

Post  meelie on Thu Jul 28, 2016 11:07 pm

where are you? and how did you find a pudental nerve specialist? Good luck with your plan.

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Re: After 3 years, finally on the right path!

Post  sailor_moon on Sun Jul 31, 2016 5:43 am

Thanks ladies. I will definitely keep you posted!

I cant start physio yet as I am waiting for my GP to write up a chronic pain management plan so I can get 5 free physio sessions...hes on holidays so I cant get a referral from him for another 3 weeks! long wait but it has to be done so I can save some $$$....I'm frigging broke after these doctors costs while trying to pay my mortgage.

I have a special pudental MRI this week to get a better look at whats going on and to check for entrapment just in case....$550 later and a $200 motel room....and a 6 hour drive.

Meelie I am in Australia Smile this pudental specialist is in Australia too, in Sydney.
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Re: After 3 years, finally on the right path!

Post  lindsey_taylor on Mon Aug 01, 2016 12:13 am

I hope everything continues in a positive manner for you! You give us all hope with this!

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Re: After 3 years, finally on the right path!

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