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» 7 months since the diagnosis
Vestibulitiis surgery EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vestibulitiis surgery EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vestibulitiis surgery EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vestibulitiis surgery EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Vestibulitiis surgery EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Vestibulitiis surgery EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Vestibulitiis surgery EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Vestibulitiis surgery EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Vestibulitiis surgery EmptyMon Apr 08, 2019 7:54 am by Jo44

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

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: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Vestibulitiis surgery

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Vestibulitiis surgery Empty Vestibulitiis surgery

Post  Coco23 on Wed May 03, 2017 12:31 pm

Hey girls.

I am 23 years old and I've been suffering from Vesti from the age of 19(the first time I have tried to have sex).
As long as I remember I never fingered myself and never used tampons due to pain and general fear.

A month and a half ago, on 16.3, I had a vestibulitis surgery after 4 years of suffering.
I went to my doctor twice after the surgery..last time was 4 days ago and he told me I can have sex now and that it looks great.

So I tried.

I still have pain in the vulvar area, a bit less but similar type of pain of what I had before.
In addition, the Veginismus is now worse than what I had before. Probably because I expected it to be painless and it didnt happen.

I am really sad and hopeless.
I dont know what to do anymore...
I thought I should do a second surgery with another doctor- but I read somewhere that it might take time to heal completely.

I am now 1.5 months after my surgery.. touching my vulvar area really carefully with my fingers and it is painful.. do u think its an unsuccessful surgery and I should redo one or is it just a matter of time?

* The surgery was done on the bottom area of the vulvar only since that was my problem.


Thank you very much for your time... hope to hear from you soon

Coco23

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Vestibulitiis surgery Empty Healing...

Post  Gill on Sat May 06, 2017 7:35 pm

Hi Coco,

I don't know whether you should have further surgery, but I can tell you what my surgeon told me!

I didn't have my follow-up with my surgeon until 3 months post-surgery, and she said the pain I get might still decrease further. I did have massive improvement in the area that was removed, but still significant pain in surrounding areas, which she said could be because of the way the skin in the vestibule heals, which can take longer than other places.

I am seriously considering further surgery, but will wait a few more months before going for it.

Gill

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Vestibulitiis surgery Empty Re: Vestibulitiis surgery

Post  Coco23 on Sat May 06, 2017 11:17 pm

Hey Gill thanks for the reply.
In my case its not only the surrending area but also when I try a finger inside of the vagina..it is painful jist like the surrending area and a similar pain to what I had before. Maybe worse. My doctor told me it looks good that I can already have sex..and I tries few times but it only gets worse and burning after everytime.

Do you also have pain if you insert a finger or just outside of it?

Coco23

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Vestibulitiis surgery Empty Re: Vestibulitiis surgery

Post  Gill on Sun May 07, 2017 12:06 am

Hey there, I'm not sure what you mean when you say the surrounding area as opposed to inside. To me it feels like pain on the inside; vestibule means hallway, like entrance, and that's what it's like. It used to feel like I was trying to push a flaming hot poker in there. Now (3+ months after surgery), its more like a heated needle poking in the specific places that still hurt. I have never had external pain, like on the labia, etc, like some ppl get. My drs held up a mirror and showed me what they were poking to see if it hurt. If your doctor didn't show you what the different bits were they were taking out, that wasn't very helpful for you.

When I manage to get anything through the entrance and inside, the bit that's properly inside doesn't hurt, but the entrance still hurts.

It still hasn't been very long since your surgery, so you should probably give it a couple of months more at least, and try to get a mirror down there to work out what's happening. I am planning to wait at least 6 months after surgery before deciding whether it's worked or not. People say it takes a year to fully heal.

You mentioned that you now have vaginismus; you'll know you need to treat that as well. I suggest you find a good psychosexual counsellor and/or Physio/biofeedback to help with that if you haven't already.

Gill

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Vestibulitiis surgery Empty Re: Vestibulitiis surgery

Post  flick001 on Mon May 22, 2017 10:19 am

Hi guys,

I was wondering from your posts you mention the possibility of having a further surgery - what exactly is this? the same sort of thing as the first vestibulectomy?

I have just had the surgery and up to week 4 recovery. I feel like the pain is a lot better but not fully gone - i can't tell much though obviously as its only been 3 weeks. But just wondering if you know what further surgery could be an option if the nerve pain doesn't fully resolve?

Thanks

flick001

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Vestibulitiis surgery Empty Re: Vestibulitiis surgery

Post  Gill on Mon May 22, 2017 4:18 pm

Hi, when I wrote about further surgery, it's because my dr only removed the tissue between 9 and 3 on the clock face. The other half of the circle that wasn't touched, and that's where my remaining pain is, so I'm exploring whether taking more out will improve things further. A couple of people on the Facebook group 'Vestibulectomy Surgery and Vestibulodynia Support Group' mention having a partial vestibulectomy followed by a total. My surgeon didn't want to remove the top because she said there are really bad things that can happen, like fistulas. It might be worth asking ppl who've already had both what they know about it.

Gill

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Vestibulitiis surgery Empty Re: Vestibulitiis surgery

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Gill,

Who did you have your surgery with if you don't mind me asking?

sj17

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