Vulvodynia Support
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» Hope to all my suffering ladies
Types of vulvodynia EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Types of vulvodynia EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Types of vulvodynia EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Types of vulvodynia EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Types of vulvodynia EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
Types of vulvodynia EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Types of vulvodynia 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!
Types of vulvodynia EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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


Types of vulvodynia

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Types of vulvodynia Empty Types of vulvodynia

Post  karris87 Fri Jun 08, 2012 7:55 am

From handout my vulvar specialist doctor gave me:

Generalized vulvodynia - also termed generalized vulvar dysesthesia and essential vulvodynia: a condition in patients who lack significant changes on physical examination but complain of constant burning sensation in the vulva. This is thought to be a NERVE DISORDER.

Vulvar vestibulitis - also termed localized vulvodynia and vestibulodynia: a chronic clinical syndrome characterized by: 1) severe pain on vestibular touch or attempted vaginal entry, 2) tenderness to pressure localized within the vulvar vestibule, and 3) physical findings confined to vestibular redness of various degrees. Another attribute: usually no pain unless touched. This is felt to be a problem of LOCALIZED SKIN INFLAMMATION

Women may have one or the other or have a MIX of generalized vulvodynia and vulvar vestibulitis.

Vulvodynia - a general term, defined as chronic vulvar discomfort, especially that characterized by the patient's complaint of burning, stinging, irritation, or rawness.

Vaginismus: tight and painful muscles in the pelvis around the vagina which make intercourse painful. They can feel like a "blockage" or "wall" inside. This tightness can result in a smaller vaginal opening and cause little splits in the skin there during intercourse. Muscles that spasm can also develop into a burning feeling.

Theories:

Dysthetic, generalized vestibulodynia is a problem of nerve cells. They transmit a message of PAIN when they should be indicating TOUCH. Vulvar nerve fibers that are usually silent may begin transmitting pain, either with touch or spontaneously. Central neurons in the spinal nerves also become more excitable. Such differences in function result in heightened sensitivity. The area that hurts is broad and non-focal. Examination does not note any unusual appearance of the vulvar area.

Application of topical lidocaine liquid does not result in reduction of the pain with touch, as would be the case with vestibulitis, which is a problem of inflammation of surface skin.

In some women it can seem the case that spasm in pelvic muscles can cause pain that seems like it is from the skin, not the muscles. This can be confusing, so a physical therapy examination can be important.

A therapy of calcium citrate supplements in conjunction with restriction of acid foods has had variable success in treating gneralized pain. The calcium therapy is not harmful. Extreme adherence to the low oxalate diet, however, can be problematic as regards to healthy nutrition.

Vulvar vestibulodynia is a problem of too many skin nerves in small zones. Use of topical lidocaine liquid for several minutes reverses the pain, so it is very superficial pain. Theories include increased local inflammation factors like histamines and substances, which keep the capillaries dilated and increase the nerve endings. Another theory is that estrogen receptors disappear, and this somehow signals the extra nerves to grow. Only in menopause is estrogen therapy really helpful, as younger women have estrogen, but the tissues cannot sense it.

Surgery has the best results for vulvar vestibuloydnia, and this has been shown in more than 20 reports.

Some success in treating vulvodynia comes from a group of medications that work on the nervous system. These medications act on nerves to influence their messages. A wide variety of antidepressants, anticonvulsants, and muscle relaxants can help. While these medications are categorized one way, there has been success using them for chronic pain conditions. Amitriptyline is an example, as it is a tricyclic antidepressant. In that family are nortriptyline (Pamelor) and desipramine (Norpramin). Another pair of medications is venlafaxine (Effexor) and duloxetine (Cymbalta). These medications are used for the pain. One final common medication is gabapentin (Neurontin) in the anticonvulsant family, and clonazepam (Klonopin) which is a muscle relaxant.

BTW My doctor also told me that 50 mg/day of amitriptyline would be the lower threshold dose for treating pain. (Although, of course, want to build up to that level, not start taking it immediately.)
900 mg/day of gabapentin would be the lower threshold dose for treating pain. (again, want to build up to this level.)

NOTE that Amitriptyline = Elavil.

ALSO: So I have a mix (both vestibulitis and generalized vulvodynia.) Does anyone have this and had a surgery that helped symptoms? Not sure if I should try the surgery.

karris87

Posts : 9
Join date : 2012-01-17

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