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» Hope to all my suffering ladies
VVS Surgery email part 1 EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
VVS Surgery email part 1 EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
VVS Surgery email part 1 EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
VVS Surgery email part 1 EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
VVS Surgery email part 1 EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
VVS Surgery email part 1 EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
VVS Surgery email part 1 EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
VVS Surgery email part 1 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!
VVS Surgery email part 1 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


VVS Surgery email part 1

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VVS Surgery email part 1 Empty VVS Surgery email part 1

Post  Sebby (Admin) Mon Nov 01, 2010 6:17 pm


Copy of email I received from Vulvar Vestibulitis Relief website - Lady is a sufferer as well as having just started medical school


Surgery for VVS: Part 1

Before I get to the good stuff in this email, I'd like to start with a bit of house-keeping:

First, I'd like to apologize for any delays when it has come to me answering emails and/or comments on the website; as you might have heard, I just recently started medical school and it's been a life-altering experience to say the least! I've slowly started to learn how to carve out time to take care of the other things in my life but it's taken me a couple weeks to get on my feet in this regard. In any case, please know that I will answer all emails and comments but please also know that, with the addition of medical school activities in my life, it might just take me a bit longer than it has in the past. Thanks in advance for your patience. Smile (PS: I do love getting emails so don't be shy about sending them!)

Secondly, I wanted to let you know that many changes to the VVR website are also on the way! One big change will be the addition of a forum on the website, in addition to some other features that will hopefully make it easier for us to exchange information and support. Some of your have contacted me with changes that you'd like to see happen...this is great! So I'd like to invite the rest of you to do so if you feel so inclined. Like I've said before, this website is for you so I welcome any new ideas on how to make it better and more helpful.

So that's that for the house-keeping! And now on to the email about surgery:

For many women with VVS, the word "surgery" is an anxiety-inducing one; I’ve always found this to be the case mostly because, although it is touted to be the only “cure” for VVS, scholarly articles on the subject are awfully hard to come by (this has become much less so over the past several years though, thank goodness). Add anxiety-inducing questions like “Does it actually work?”, “What happens during the surgery?”, and “What happens afterward?” (and so on) to the mix and it's a pretty potent combination!

So, I've decided to address many of these issues head on in yet another several part email series. This one will differ, however, in that I’d like to send out the parts consecutively because I know that this is a topic that is of great interest to a lot of you.

In this Part I, the questions that will be addressed will be:

a) What is the surgery for VVS? What happens during surgery?
b) When we talk about "success rates", what does it really mean to have a "success"? and
c) What are the success rates?


What Happens During Surgery? A Description.

As in turns out, there are actually several different procedures (6 to be precise) that doctors perform for the treatment of VVS, each with varied degrees of invasiveness and, consequently, implications on the success rates.

PS: I'm going to leave in a couple "medical terms" in the descriptions because, chances are, the doctors that you will talk to about VVS surgery will throw around these words. I've defined most of them but I didn't want to take them out entirely because being aware of them makes the conversations go much more smoothly.

1) Woodruff Procedure:

This is the oldest technique out there and one of the most invasive. In this procedure, a semi circular portion--from about 3 o’clock to 9 o’clock--of the perineal skin (region between the posterior--back--vulva junction and the anus) and the posterior portion of both the vestibule and hymen ring are removed. To put in simple terms, it's the removal of a triangular portion of skin starting from 3 and 9 o'clock and going down several inches, towards the anus. While it's known for it's effectiveness in removing painful tissue, it's criticized for its' relatively high complication rate dues to new problems such as decreased skin elasticity and the implications of removing functioning glands.

2) Vulvar Vestibulectomy:

This is the removal of the skin starting from around the urethra and including the posterior fourchette (the fold of skin that forms the back margin of the vulva); the procedure doesn’t include the excision (removal) of the perineal skin. The skin that surrounds the removed area is advanced (as in: pulled up) and sutured. This one is less invasive than the Woodurff procedure so while it has a lot of the same concerns, they are often less severe in nature.

3) Modified Vulvar Vestibulectomy:

The difference between this one and the version above is the amount of skin that is advanced; while the vulvar vestibulectomy involves the area around the urethra, the modified version focuses on removing the skin in the posterior of the vestibule (around 6 o'clock, where women with VVS often have pain). Again, less cutting means fewer complications. This one is "most popular" (for lack of a better term!) because it stikes a fairly good balance between removing enough tissue that painful areas are removed but it doesn't require major reconstruction of the surrounding tissues.

4) Vestibuloplasty:

This is where only the most painful areas of the vestibule are excised (no skin advancement). This one is the least invasive so far because it usually only requires local anesthetic. This one works best for mild cases of VVS where the pain is very localized and distinct. The key to a "successful" surgery is making sure that the patient is indeed an appropriate candidate which means things like lack of pelvic floor dysfunction as well as other factors that difuse the pain to other regions of the pelvic floor.

5) Carbon Dioxide Laser:

This is the removal of the vestibular tissues and can include up to 1 cm of tissues. I’m mentioning this one for completeness although this procedure has one of the lowest success rates. Instead, a different type of laser surgery has climbed in popularity among physicians which is:

6) Flashlamp Excited Dye Laser:

This type of surgery usually includes the removal of painful glands/localized areas and does not include any skin advancement. It has also been used to "kill off" (non-clinically speaking) tiny blood vessels around painful areas in the vestibule which decreased symptoms of inflammation. Because this procedure uses a different type of laser than the procedure above, it has proven to have less complications and higher success rates. If you're interested in reading more about this, there's a really great article on the topic (and on VVS in general).

Note: While I found this information from many different sources, the best complete resource I found so far has been the book Women’s Sexual Function and Dysfunction: Study, Diagnosis, and Treatment by Irwin Goldstein and Susan R. Davis. It reads a lot like a textbook but it's still very good if you're really interested in delving into the nitty gritty details.

Note number 2: There are differing opinions on a lot of the information I included. The way I decided what to include here is by trying to find the most reputable resources (like the one I mentioned above). In any case, if you do your own searching, you're bound to find information contrary to what I have here; in dealing with this, I personally recommend actively seeking out multiple opinions on the information you find to verify not only the validity of the information (this includes what I wrote as well!) but also how it applies specifically to you.

So What Constitues a "Success"?


When reading about surgery for VVS, it’s sometime hard to tell what is classified as “a successful surgery”. For the most part, unless stated otherwise, it means that the patient can resume a normal, pain-free sex life. To be honest, this is a loaded question that I'll address down the road but I wanted to include this little bit here so that the next thing I say makes more sense:

What are the Success Rates?

According to the often-sited Dr. Andrew Goldstein, the most common type of surgery that he performs is the modified vulvar vestibulectomy on patients who have localized vulvar vestibulitis (it’s important to note that this type of surgery is rarely performed on patients with generalized vulvodynia...another gargantuan topic that will be covered next) and the break down of the "success rates" goes as follows:

1) There is a close to 100% success rate for the removal of pain from activities such as sitting, wearing tight pants, and physical contact.

2) Over 50% of the women experienced completely pain-free sex after the surgery.

3) About 40% of the women had slight discomfort during sex (but could still have sex).

4) And around 10% of the patient could not have sex due to high pain levels. There are several reasons for why this may be the case and I'll be discussing that in the consequent emails as well.

As you can see, the term "success rates" is used very loosely in the literature; when we put these numbers with the definition of a successful surgery, we would be able to say that a modified vulvar vestibulectomy has over a 50% success rate. That's not to say that other women's lives haven't been positively effected by the surgeries, of course, but we're simply talking labels here for the sake of knowing what to look for when reading literature.

Ok, so that's that for Part I but there's lots more to come! What to expect from Part II of the series on VVS and Surgery:

a) Why do some women still have pain after surgery? What's going on?
b) What to do after the surgery to ensure better results (and why doing those things is really important).
c) Answers to questions like: what is the recovery time? how will my normal functioning (like lubrication) be affected?

As always, feel free to contact me with any questions that you have. Chances are, you're not alone in wondering something so I'm always happy to add to my emails if someone points out something I didn't mention or if something wasn't clear!



Sebby (Admin)
Sebby (Admin)
Admin

Posts : 750
Join date : 2009-12-03
Age : 43
Location : London UK

https://vulvodyniasupport.forumotion.net

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