Do you know what your "cause" is?

Hi Ladies,

I'm new to V and I'm trying to figure out my "cause." I have tested positive for 4 different types of bacteria and treated for them BUT these bacteria's are all part of the "normal vaginal flora", so I'm not sure if they just got out of control because my PH levels were thrown off or if an allergic reaction to something and the medications weren't needed and made matters worse. I'm waiting on some more test results to come in and if it shows negative, I am flying out to Phoenix to see a vulvar specialist.

My question to you ladies is, have you been able to actually pin point your "cause" for V? And if so, have treatments for the cause helped you at all?

I ask because I've noticed on some other boards that once ladies figured out their cause, most of them had it 95% under control or were completely cured of V. I'd love to hear your stories

Hi Kathye10,

I had seen specialist doctor Andrew Goldstein this past summer. I was looking into surgery and he was the best in my area. I went in for a pre op consultation where he is supposed to help pin point when and how this happened and how to treat it. He examined me and found no visible signs of vulvodynia, like redness or bumps. Everything looked healthy, but felt awful. I wasn't on nor have I ever been on birth control, which can cause V. I had two injuries when I was young that I had always thought caused it, but he said that there was no way. The last test he did was what I call the belly button test. He took a long Q tip and moved it around on the skin surrounding my belly button. Then he gently pushed it down in my belly button. He said if it felt more sensitive there that meant I had been born with V. Apparently my body just had too many nerves in it causing them to be hyperactive. This is something that a specialist might try to find the cause. I think you could even try this at home. If it feels more sensitive that means you were born with too many nerves. In my case the only way to resolve the problem was to remove the nerves and now I live a happy pain free life .

-Jen

I totally just tried that with my finger in my belly button...haha! No sensitivity.

I have heard Dr. G is VERY good! I'm so glad you are living pain free now!!

What nerves did he remove exactly?

Hi,

My potential cause, which is still under investigation, is ligament laxity combined with a coccyx injury causing my muscles to compensate to maintain hip joint stability. My left side muscles are more in spasm causing my hip to twist to one side. My current treatment is weekly chiropractic (she has just completed dural torque) and fortnightly physio with a general physio, not pelvic, to work on all the hip stabilise muscles and pull them out of constant contraction. I also see a pelvic physio to check on the pelvic floor muscles.

Kathye10,

He is excellent! If there is anyway you can see him do it! I highly recommend him! He performed a full vestibulectomy on me this past July. There is full and there is partial. The full is when they remove the horse shoe shaped area around the inner ring of the vagina. It is supposed to remove all the painful areas upon insertion. The partial is for people who only hav a small localized area of pain which is easily removed. I had localized PVD, but a larger area of my skin was in pain so they did the full vestibulectomy. My pain was mainly on the left side towards the bottom and a little on the right side. With the full they also remove part of the hymen for easier insertion. As long as I keep dilating I'm able to have a normal sex life. The only down side to the full vestibulectomy is you loose a third of your natural lubrication. So I can no longer get "wet". I have to use lube, and a lot of it, for the rest of my life. But I'm not overly dry or anything and I can still get aroused. Some women beleive that the surgery will cause them to loose the ability to become aroused, but it's not true. The surgery doesn't affect the G spot at all. It's just takes a little longer to get going if you know what I mean lol. But over all I'm happy with the results. I wouldn't be able to have sex if it wasn't for the surgery so I can't complain!

Let me know if you have any questions or want to know anything about Dr. G!

-Jen

Hi Cba321 - So how is the therapy going for you? Are you feeling any better?

Jen007, I'd love to hear your story. I know he said you were born with it, but how and when did you start to get symptoms? Or have you had them your whole life?

I started noticing symtoms when I was around 16 years old. Tampons were impossible for years because of the pain, but eventually I got one on there. It only hurt upon insertion, but when it was in there it didn't bother me. I also had chronic yeast infections. I took antibiotics for them and used mono stat, but after about a week or so the yeast would come back. Around 17 I tried to have sex for the first time. I knew it was going to hurt, but man did it hurt. I figured if sex felt that painful then no one would do it, so I decided to see a gyno. The first gyno I saw was awful. She at first thought I had a bacterial infection, like most women with V get told. She then prescribed me an antibiotic, which did nothing...so I left her for an internal specialist. After I had my files transfered my new doctor asked me why my first gyno had prescribed me that antibiotic. Apparently the antibiotic was for mensa...nothing that should've ever been given to anyone who didn't have it. I was so upset. After examining me and discussing possible reasons for having pain down there she told me about vulvodynia. She said that I should do some online research about it, but it was most likely what I had. She had me trying medications and creams for about a year or so. Nothing worked so she told me that I should try to find someone else to help me. I was completely distraught at that point. When I was 18, after searching and searching for a new gyno, by chance I found 2 vulvodynia specialists in my local hospital. They treated me for about a year...again nothing helped me. I told my gyno that I wanted to end this and just get surgery. I had read a book by Dr. G and I knew I wanted him to do it. She told me she would try to get a hold of him for a recommendation. Again by chance, my gyno ended up going to one of his conferences in Philadelphia. He gave her a letter explaining that he would take care of me. I was soooo happy. So right before my 20th birthday I got the surgery. Like I said before it was the best thing I could've ever done...no regrets! But I'm lucky, some women get worse from surgery. I would say if you have provoked vestibuledynia (PVD), pain when provoked, I would say you're a good candidate for surgery and have a better chance of being 95-100% cured from this. I think people who have the unprovoked pain don't benefit as much from surgery as someone would with PVD.

Let me know if you have any other questions!

-Jen

The therapy is going well, my pelvis has stopped twisting and is maintaining position finally. Ive had about 10 chiropractic appointments. Im finding it easier and more automatic to relax my gluteal muscles but still not completely gone and still a lot of tension. I also had botox 6 months ago so that has calmed my pelvic floor muscles. Also worth mentioning that I never had back pain, so I had seen posts about chiro and ignored them. As it turns out a contracted muscle in general doesn'tcause pain it just moves joints out of place and causes problems elsewhere, in my case the pelvic floor and surrounding muscles.... Maybe, hopefully that is why. I just found out today i have a massive uti infection through pathology tests,but i have basically no symptoms. I had been finding that my vulva was a bit more tender and thought it was due to physio and chiro but turns out it is the uti... So not too sure at the moment about improvements as far as penetrating the vagina as the uti would have been influencing this. I had sex 6weeks ago so have probably had the uti for that long and not known.... If you have pvd might be worth considering having a general and pelvic physio and chiro give you their opinion if you haven't already. Get a general spine and pelvic pain physio to manual test all your hip stabiliser muscles .

Thought I would add to the list of causes, in case it would somehow be helpful to someone else. It seems to me, though, my situation is pretty unique, but anyway...

I have had chronic painful intercourse for the entire 18 years of my marriage. December was the first time I saw a doctor/specialist who is knowledgeable about vulvodynia. During the q-tip test, he found 2 sources of pain. I don't remember the technical term he used for the 1st place but he said he totally expected the pain to show up there as this is highly common for women with pain during penetrative sex. However, the second area was one he wasn't expecting. After using a magnification aid, he said that when he had touched this (internal) spot with the q-tip, it actually tore the skin and drew blood - that's how unhealthy my skin was. He 'aborted' the rest of the exam and said he wanted to treat the skin issue before doing anything else. His assessment was that my hormon IUD was depleting estrogen and causing the skin probem. So, he gave me premarin cream to use to get the skin healthy again and then also removed the IUD. On follow-up, he said the skin is in great shape now.

Second major problem... On my 2nd visit, he was able to complete the rest of the exam. He said that my internal anatomical structure (bones & all) are the physical size of an 8 year old's. That is somewhat consistent with a dr a long time ago telling me that I was "tiny" in that area. Also, my first child had to be born c-section due to a failure to progress. The doctor said that if he had been my OB, he would have never allowed me to attempt a vaginal delivery as "no baby could ever fit through there." So, treatment-wise, the only solution is surgery to enlarge my vagina - or something like that. I have an appointment with a surgeon next month to gain more info as to what exactly is involved in this surgery. I'm also hoping to use the appointment as a second opinion, just to make sure he agrees that this really is the problem. I keep wondering if it's just a tight muscle thing, by my dr. was adamant that it isn't.

I don't know yet if i'll actually go through with the surgery. If I do, it would then be back to following-up with the specialist to proceed with a third phase of treatment. This phase he says is about training my brain to not interpret intercourse as painful (assuming all the physical issues are resolved).

So, I don't really have a nice neat diagnosis. Just several things contributing to my pain.

Kathye10,
Who are you seeing in Phoenix? I live here and have seen them all...all three of them that is.
CBA321,
How did you know you had problems needing chiropractic care? I go to a PT but she has not mentioned that. Also did you have pain inside your vagina or just on the opening? Mine is both so unfortunately the operation wont help me. Still trying to figure it out. Will be doing nerve blocks in about a month to hopefully calm down the pudendal nerve batch.

Hi Michelle,

I was going to make an appointment with Dr Brooks, have you seen him? If so, what was your experience?

Jen - Wow, that is awesome, I love hearing positive stories! I'm so glad that worked for you. If I could give you a high five through the computer I would! haha! Mine is generalized so surgery wouldn't work. I never had sexual pain before or problems with tampons. I'm pretty sure mine is due to an allergic reaction from spermicide and being over treated for yeast and bacteria, etc. I think my nerves just got stuck in inflammation mode and they won't calm down

Cba321 - Glad to hear the therapy is helping a bit. Although it makes a lot of sense, I still had no idea muscle function could cause vulva pain. Are you on antibiotics for the uti? Are you feeling any better?

jen007 wrote:Then he gently pushed it down in my belly button. He said if it felt more sensitive there that meant I had been born with V.

-Jen

Do you mean feeling sensitive IN your belly button, or sensitive in your vagina? Because for years I've noticed that when I stick my finger in my belly button, I can "feel it" in my vagina, as if my belly button is connected to it somehow.

carby148,

I meant in my belly button, but I do think they are connected. When I push into my belly button I feel like a raw nerve feeling, not painful or anything, just more sensitive. Then after I stop touching it the feeling travels down to my pubic bone area. Maybe next time you speak to your specialist you could ask them to look into that for you. I never looked into it because I had surgery and am not having problems anymore, but I think they could be connected.

-Jen

MICHELLE21
I didnt know about chiro. It was suggested to me by my psychologist who is also an exercise scientist also. It was suggested just to check out my spinal and pelvic alignment, which ended up being completely out. My pelvic pt mentioned nothing about chiro nor did she test my hip stabiliser mucsles which are also all out. Im a health professional myself and it never really made sense why such a small subset of muscles could be so distorted without others being involved or potentially even a cause of the sexual dysfunction and turns out it isnt just the pelvic floor muscles, it's muscles in my butt, thighs, abdomin and within the hip. I have pain on the outside and inside but since botox i havent had too much inside pain.
KATHYE10
Thanks, yes feeling better and on antibiotics but i thibk it is still there, still have a bit of burning. I have pvd, pain mostly muscular. Muscles work very closely with one another and if one goes out it can start to travel, for example, lower back pain can end up travelling up to your shoulders. my hip stabilser muscles are pushing my hips inwards and limiting space for organs nerves everything basically to do their jobs. I guess imagine your vagina as a tunnel which should be surrounded by smooth muscles that relaxes and doesnt limit access through the tunnel but instead you get stuck with rock hard muscles that are limiting acces for a penis in the tunnel. In addition to pissed off muscles which are causing inflammation irritating everything including nerves. Could be very different for you though, depends on symptoms

i had thrush last may - that went then i remember wiping myself really hard down below to see if my period was coming and have been in pain ever since.

stupid, stupid, girl.

I was told I was born with too many nerves "down there" causing me to feel pain. I guess in my case it was a just a freak thing.

-Jen

Hi there
My cause was misaligned pelvis causing all sorts knock on muscular problems - probably was like that for a long time with my body compensating for ages by using different muscles to keep me functioning. Eventually my body stopped being able to compensate and the contracted, wrongly-used muscles starting effecting nerves and the vulvodynia started. But got my pelvis sorted and i now do regular chiro, yoga and pilates and my vulvodyina is gone!

(sorry if im being a broken record - some of you regulars will have heard all this before!)

And we'd love to keep hearing it too Loulou, it gives me hope!!

Thanks Sarah - it's good to know that there's at least one person i'm not irritating lol!

Stay hopeful!
x

That´s such an interesting question, as I have been diagnosed 7 months ago and the symptoms since a year (after a bad yeast infection), but I remember that I always had issues with tampons for example.
So I am not so sure anymore when and why it actually started.
I strongly believe hortmones might be a reason, as I have been on strong birth control since years, but as I have really really bad acne without and am allergic to the lubricant on condoms, it is hard to try out and find a better method ...
It seem so frustrating there are so many possibilities...

I agree Juleps...I'm still trying to figure out mine, 6 months later. I've put soooooo much thought into it, done so much research and there are still like 3 possibilities. Wouldn't it be so much easier if it was just ONE? if that were the case, we'd probably all be cured by now. So frustrating.

I feel I dont know where to start anymore, although I tried much already.
Do I believe it´s a muscle issue or hormones or vitamins I am missing or a skin desease...
Or maybe it is something bacterial no one found yet

I'm in the camp who believe trying to find the cause is very important, we're all dealing with the same symptom that has a variety of different causes much the same as headaches or backaches have lots of different causes. While I know mine is pelvic instability/PFD caused my treatment plan won't help someone who's V is caused by something different so knowing the cause really helps with choosing treatment. I think working through the list of known causes until you rule something in is the best way to approach it, once you rule something in deal with it and see what happens. If you don't know the list of known causes the book When Sex Hurts is excellent and covers them all so you can use it to figure out your cause.

thank your for the hint, i will definately check it out!
i also think it does not make much sense to fight symptoms like crazy!
how did you find your cause, what exactly did help and how long should i try things until i rule them out?