Log in

I forgot my password

Latest topics
» Change in birth control question
Yesterday at 7:34 pm by Jo44

» Weird Reactions to Natural Remedies
Yesterday at 4:38 pm by emalita

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 12:11 pm by mhhh

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 10:01 am by dunkelma

» It feels like I’m going to have pain forever
Mon Jul 16, 2018 8:51 am by dunkelma

» Honey decreased my pain considerably!
Sun Jul 15, 2018 12:53 pm by mhhh

» Birth control pills can cause vestibulitis
Sun Jul 15, 2018 1:15 am by MDias

» Gabapentin gel and pregnancy
Sat Jul 14, 2018 4:15 pm by Georgie 121212

» From a concerned husband
Fri Jul 13, 2018 6:02 pm by emalita

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: 1

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 9

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 0

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 1

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: 5

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0


My belated story

Go down

My belated story

Post  ButterflyLiz on Mon Dec 26, 2011 10:36 pm

Hi all,

I’m belatedly adding my backstory here, in case anyone is interested in my pain onset / symptoms & things that have subsequently helped me.

By the way, I’ve copied & pasted the below from a document I keep up to date & take with me every time I see a new medical professional. Saves loads of time for them to just read through it rather than asking me a million questions and me trying and failing to remember everything that’s happened over the last ten years. Plus they can keep it in my file to refer to. I would definitely recommend doing this, it really helps & always goes down very well!

Symptoms:

I have both background and on-touch vulval pain.
Types of pain experienced; stinging, burning, stabbing, rawness
Pain is worse when sitting for long periods of time & improves when lying down.


Current medication:

150mg pregabalin / day
Cilest contraceptive pill

Treatment history:

My vulval pain started in December 2001 (when I was 16 years old), 9 months after I first had sexual intercourse. To start with there was just pain on penetration, however over time it came to be that pain was present at some level most of the time.

In June 2002 I was diagnosed with vulvodynia (then known as vulval vestibulitis) by Dr Munday at Watford General Hospital.

The first drug I tried was amitriptyline, the dosage of which was gradually increased up to 150mg per day. However, I did not feel any benefit from this and so stopped taking it in March 2004.

I was then briefly put on gabapentin but felt very sick on it so did not continue.

By this time I had moved to Northampton and was sent to the pain clinic at Northampton General Hospital. This was around February 2005. They offered me a TENS machine but this had no effect on my pain. They also tried injecting anaesthetic into my genito-femoral nerve but this also had no effect on the pain.

In October 2005 I was referred to Wendy Reid at the Royal Free. She suggested I try taking antihistamines and using lidocaine gel every night and seeing how I got on. These measures did seem to help. In 2006 I had several physiotherapy sessions working on my pelvic floor, which included biofeedback as I had developed some vaginismus.

In December 2007 I had a significant pain flare up and went to see Wendy again. At that point I started on pregabalin, which is the only medication that I would say has ever had a significant impact on the pain. I started on 150 mg / day and this was slowly increased to 300 mg / day. Gradually, my day to day pain began to lessen and I was able to have almost pain-free sexual intercourse for the first time in many years. However, I was aware that even then the condition never completely went away.

In July 2010 I agreed with Wendy Reid to taper down and then stop the pregabalin, as it had probably helped all it was going to. However once I had done this I had two very bad pain flare ups – one in October 2010 and then another in January 2011. This second one left me extremely shaken as the pain was intense – so bad that I ended up taking two days off work. I subsequently developed anxiety and panic attacks, for which I went on a three month course of citalopram.

I went to see Wendy who put me back on the pregabalin at 150 mg / day and I have been on the same dosage since then. So far I have not had another flare-up. I am also having CBT sessions to help me cope better with the negative thoughts I have surrounding my condition and more physiotherapy to re-learn how to relax my pelvic floor muscles.


Self-help techniques used:

• Pressure relief cushion at work and in the car
• Aqueous cream – this is very soothing & is all I use to wash my vulva
• Vagisil (topical anaesthetic containing lidocaine) – although sometimes I cannot tolerate anything on my vulva
• Ice packs
• Try to avoid restrictive clothing and underwear


Other conditions:

• Extremely painful periods when not on the contraceptive pill
• Mild IBS
• Mild asthma
• Occasional thrush
• Poor circulation to hands and feet (get very cold)


Btw, the latest is that I’m due to have a pelvic MRI scan on Thursday. Not sure that anything will be found but it’s worth doing to rule things out, especially as I still have an instinct that something is structurally wrong somewhere in there.

I’m also going to have a bilateral pudendal nerve block at some point, but there’s a waiting list for that. Which I’m not complaining about, because I’m TERRIFIED of having it done!!
avatar
ButterflyLiz

Posts : 137
Join date : 2011-11-18
Age : 32
Location : UK

View user profile

Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum