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» Hope to all my suffering ladies
Antibiotics vs probiotics.. - Page 2 EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Antibiotics vs probiotics.. - Page 2 EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Antibiotics vs probiotics.. - Page 2 EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Antibiotics vs probiotics.. - Page 2 EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Antibiotics vs probiotics.. - Page 2 EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Antibiotics vs probiotics.. - Page 2 EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Antibiotics vs probiotics.. - Page 2 EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Antibiotics vs probiotics.. - Page 2 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!
Antibiotics vs probiotics.. - Page 2 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


Antibiotics vs probiotics..

5 posters

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Post  jen007 Sun Mar 31, 2013 11:52 am

Darkhorse,

Doctor Goldstein did my vestibulectomy. I had a full vestibulectomy in July of last year. I have PVD, Provoked Vestibuldynia...which is now pretty much gone. I'm no longer in any pain thank goodness. I'd say I'm 98% cured. I have to dilate everyday, if I don't then I can't have sex. Lately I've been so busy with being in school that I just haven't had time to dilate. It's been about a month so I know that whenever I go to dilate again it will be painful, but it'll eventually go away.

Back to Dr. G, he's great! I had been at the end of my rope and all I wanted was surgery. I had been on another forum and saw a comment on Dr.G. He had written a book about vulvodynia called "When Sex Hurts." I bought it right away and read it. It was very helpful. After I had finished reading the book I decided I waned to go to him. He's the best in the area I live in so I knew if anyone could help me he could. My other doctor was very good, but she had done all she could for me. I went to his New York office for a consultation. It took an hour and he pin pointed what he thought was the cause of my vulvodynia, what type I had and where we should go from there. He said the root of my pain was nerves. He thinks I was born with too many, which makes sense with the pain I was feeling. He said I had PVD...but he called it something else, but it meant the same thing. He said surgery would be the best thing for me and that people with PVD had a better recovery rate. I knew I had to do it. There was nothing left for me to do accept for physical therapy....But my doctor told me that I wouldn't help me in the long run...plus my pain was so bad with just a q tip...how were they going to do anything to help me if I couldn't even handle a q tip? Anyway...if you have the money to see him I highly recommend him. The only negative thing about him is his personality. Now, I'm not saying he's mean or anything...because he's very very nice and compassionate, but he has a very strong personality. He's very sure of himself, kind of like he knows it all, but what do you expect...he's one of the best and he knows it I guess lol.

-Jen

jen007

Posts : 152
Join date : 2012-11-05
Age : 31
Location : U.S.A

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Post  Darkhorse Thu Apr 04, 2013 2:53 am

I'm sorry it's taken a while to get back to this thread, ladies. Things have been very rough for me.

Alana3 wrote:Yes oral antis it hasn't come back but that doesn't mean it won't... But so far it's not there thank the lord it was a long dose and he have me a cream too I just remembered that it was fine tho do u have strep

No, I don't have strep. I once did, years ago.

Darkhorse

Posts : 23
Join date : 2012-08-04
Location : Hawaii, USA

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Post  Darkhorse Thu Apr 04, 2013 3:24 am

jen007 wrote:Darkhorse,

Doctor Goldstein did my vestibulectomy. I had a full vestibulectomy in July of last year. I have PVD, Provoked Vestibuldynia...which is now pretty much gone. I'm no longer in any pain thank goodness. I'd say I'm 98% cured. I have to dilate everyday, if I don't then I can't have sex. Lately I've been so busy with being in school that I just haven't had time to dilate. It's been about a month so I know that whenever I go to dilate again it will be painful, but it'll eventually go away.

Back to Dr. G, he's great! I had been at the end of my rope and all I wanted was surgery. I had been on another forum and saw a comment on Dr.G. He had written a book about vulvodynia called "When Sex Hurts." I bought it right away and read it. It was very helpful. After I had finished reading the book I decided I waned to go to him. He's the best in the area I live in so I knew if anyone could help me he could. My other doctor was very good, but she had done all she could for me. I went to his New York office for a consultation. It took an hour and he pin pointed what he thought was the cause of my vulvodynia, what type I had and where we should go from there. He said the root of my pain was nerves. He thinks I was born with too many, which makes sense with the pain I was feeling. He said I had PVD...but he called it something else, but it meant the same thing. He said surgery would be the best thing for me and that people with PVD had a better recovery rate. I knew I had to do it. There was nothing left for me to do accept for physical therapy....But my doctor told me that I wouldn't help me in the long run...plus my pain was so bad with just a q tip...how were they going to do anything to help me if I couldn't even handle a q tip? Anyway...if you have the money to see him I highly recommend him. The only negative thing about him is his personality. Now, I'm not saying he's mean or anything...because he's very very nice and compassionate, but he has a very strong personality. He's very sure of himself, kind of like he knows it all, but what do you expect...he's one of the best and he knows it I guess lol.

-Jen

Thanks for your thorough reply, Jen. I've been out of commission, so it's taken a while to get back here.

You said that you have to dilate to be able to have sex. Will it always be that way? Do you have to dilate for the rest of your life, and how will menopause (that shrinks and dries the vagina/vulva) affect that?

One thing that disturbs me about the idea of surgery is the removal of vulvar glands. I understand that those help with lubrication and that you can loose up to 75% lubrication from those glands in the surgery (though that's not the only source of lubrication.) Have you experienced any of this, or have you had enough sex since the surgery to know?

Yeah, I have a pretty good impression of what Dr. Goldstein's personality might be like. These sub sub sub sub specialists are proportionally more egotistical and arrogant, as most surgeons are anyway. I wouldn't not see him just for that reason, though. One thing I find myself HIGHLY skeptical about is the theory that some of us have been born with too many nerve endings there. I know that is his theory, as I've read articles by him, and I find that difficult to swallow. Why? Because to conclude that, you would have to have biopsies by the hundreds of BABIES' vulvas, and you would not even know which ones to biopsy to compare to get an affected group and a control group! Aside from this data, I don't know HOW he could prove such a theory, and unless you could prove that upon birth some females have more nerve endings, it will remain only a theory. You need evidence to prove a theory, and this is one that seems impossible to prove.

Has he explained what sort of data would lead him to this conclusion? Maybe I'm missing some fancy explanation, but again, it would have to involve the examination of embryonic, fetal, or infant vulvar tissue, and I'm guessing getting a grant for such a study would be very hard.

You said something about that that I'm curious about. You said the theory makes sense to you based on the way the nerves feel/felt in your case. What makes you feel that the way you feel in the nerves proves he's right?

I'm wondering because mine also started with very obvious SKIN burning and so the pelvic floor issues I have I believe are secondary. I also think in my case pelvic floor therapy is not going to cure VVS. The muscles are splinting due to the pain and until the nerves and inflammation in the tissue is gone, the muscles are going to stay tight.

My skepticism about Dr. Goldstein's theory is several-fold: first, as I mentioned, how on earth would you prove such a thing. Next, why would the body target JUST that tissue to create more nerve supply than normal in embryonic development, in an otherwise normal nervous system? I don't know of any other congenital health disorder where this is the case, that a tiny patch of skin has too many nerves and everything around it is fine. I'm not a doctor so don't know every condition that exists, but that's just a very bizarre and obscure idea that does not follow any pathological model that exists. The body may have weaknesses in certain types of tissue from birth, but just one spot with too many nerves? STRANGE. He would have to give me a explanation of how the embryo would end up forming that way, sparing all other tissues, but that is just strange.

I take it that you have had primary vulvar pain (from first intercourse)?

The doctor I'm looking into in Palo Alto, CA, is Deborah Metzger, MD. She treats all kinds of pelvic pain, as I mentioned above. In a transcript of a medical talk I read online which she gave, she said that the nerves are inflamed -- and produced all kinds of chemicals of inflammation -- leukotrienes, bradykinins, tachykinins, cytokines, substance P, prostagladins, histamine, etc. etc. And so she got to thinking, what other processes in the body cause this chemical cascade? Allergies and infections. So that's what got her to looking at the vagina as "a mirror of what else is going on in the body." This model makes much more sense to me, because it explains an underlying process that INCREASES THE NUMBER OF NERVE FIBERS as the result of a functional problem. And most chronic illness is FUNCTIONAL, it's not structural. Surgery treats the problem as a structural defect that must be removed (and this would be the only good reason to do it -- if you can make the case that a body part was born malformed and a lost cause, it didn't BECOME sick [which means it could heal], that is good news for a surgeon, lol.) But if you think of all other inflammatory disorders that cause chronic issues, they are all biochemical, cellular functioning processes gone wrong. They do eventually cause damage to the structure and tissue quality, which is why in our case there would be too many nerves (histamine release by itself causes increase in nerves, and our vulvas are known to be secreting a lot of histamine). I just don't see why the solution to that would be to get rid of the tissue than find out what is making the nerves do that. With lowered immune function and hidden infections, as well as the myriad of toxins and poisons in our environment (and we secrete these in urine, too), it makes more sense to me that from birth some of us are getting a cumulative overload that affects our tissues there, than that we were just born wrong.

But hey, if you feel your problem is gone, great. I just don't feel good about the idea of doing something permanent to remove tissue when the culprit is not the tissue, the TARGET is the tissue. And even if that theory is wrong, I'm just scared of a permanent change where I can't get my skin back if its worse or not working.

I won't even write off seeing Dr. Goldstein, but I suspect surgery is his pet therapy, and all the other things he would do would be what everyone else is doing -- pain meds, antidepressants, pelvic floor therapy, etc. Even though I have many other health problems, I suspect he'd tell me that my problem is I was born with wrong tissue and that I'll never get better unless I remove the offending tissue. And I don't think I'm really going in that direction. But thank you for describing your experience with him.

Out of curiosity Jen, do you have any other health or immune issues in addition to what was a vulvar problem?

Darkhorse

Posts : 23
Join date : 2012-08-04
Location : Hawaii, USA

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Post  Alana3 Thu Apr 04, 2013 10:24 am

Just to ass my doctor did everything he could to not do surgery. Unfortunately, it didn't Work that way but my surgery didn't remove my glands and I have more lubrication now than before. But I didn't go to Dr Goldstein. I think with everything else surgery is different for everyone. I had a partial done Jen had the full

Alana3

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Antibiotics vs probiotics.. - Page 2 Empty Clindesse

Post  Marylynnreily Fri Jun 21, 2013 12:32 pm

I used a bunch of clindesse and that cured me..
Marylynnreily
Marylynnreily

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Antibiotics vs probiotics.. - Page 2 Empty yeast

Post  Marylynnreily Fri Jun 21, 2013 12:35 pm

Also Ill do more than one round of yeast treatments, and I do it to prevent aswell..a little cream always after sex..
Marylynnreily
Marylynnreily

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Post  Alana3 Fri Jun 21, 2013 12:57 pm

Omg that was totally meant to say add not ass lol im so sorry!

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