please help me ladies i need you doctors suck

hi i just joined this site in search for answers and support. i just married three months ago am i have not experienced one time of sex without sever pain. i was diagnosed a month ago with vulvodynia. i feel so angry and cheated. it has made my depression so much server and i don't know what to do. i love my husband and it kills me that i cant engage with him in sex. he is wonderful but it is me that is struggling with the whole thing. i have no drive and i hate it cos i have always loved sex. i have not engaged in sex for three weeks now. i am currently applying the local anesthetic every day four times a day. i want to know if i try having sex does that reverse any progress if any in the past three weeks not having sex. how does this crap work? doctors suck and they just don't have the time to help. i am only 28 and at this time in my life my marriage is the only positive thing that has happens to me and i feel cheated. will i ever be cured or am i kidding myself?



please please help and advise me

Hi, I know exactly how you are feeling I am the same. I dont why this has happened and if it does ever go away. Im confused because the sex is not painful its the days after but in my case months. I was diagnosed 2 months ago after been told previouly I had uti's because my symtoms went after a week of antibiotics. This time the pain has been continous and id say 9/10 for the entire time for 9 weeks. Ive been in constant tears! The doctors say vulvodynia im not entirely convinced. There is a reason why all of us have this pain which needs to be found out before the correct treatment cant be given. Ive persisted and seen 4 doctors so far had an mri and seeing a vulvar specialist in 2 weeks. I have also seen a chiro for last 4 weeks which does seem to have made improvement. She said my pelvis is really misaligned which could be compressing a nerve causing the burning. What are your symtoms like? I dont get it why it would just appear. Are you in the uk? Persist with your gp to see a vulvar specialist. I told my gp about a vulvodynia clinic and she referred me straight away only 6 week wait. Your not alone I know how you feel ive cut myself off from everything. Big hugs x

hi hun thanks for replying. i live in Australia and the treatment is crap. i experience burning and pain like im on fire every time i have sex :-( i have no libido anymore as that is really out of character for me. i don't know why this is happening. i think you are right it has something to do with uti cos that's how it started i toke the antibiotics and it went away. however leaving this evil burden to stay and ruin my life. i hate it so much, the specialist thinks that with physio i shoud be o but i dont think its that simple. especially after reading everyone's story on this forum. i feel like life is over.

Hi, I'm from Syndey Australia, I have had this since I was 19 and I am now 27. I went many doctors etc with little help but I finally found answers with Prof. Thierry Vancaillie and Sherin Jarvis (Physio) at the women's health and research institute. I still haven't finished my treatment but it is looking very positive so far

Hi there - I am in Perth Australia. I am almost 40 and have V my whole life. I only moved to Australia in 2004 and I started the journey with a few doctors and was not getting anywhere. I finally was introduced to Marek Jantos who is amazing. he travels around the country helping women, so if you are stuck here in Oz - give him a call (he has a website you can look up too).
Unfortunately due to funds I had to terminate my treatment with him, but he educated me and my husband on many things.
I am now trying to do this alone by changing my diet etc, so hold thumbs!!
Chat soon
Charmaine xxx

thanks ladies i actually just contacted the women's health center and made a appointment with doctor sherin jarvis. thank you so much for your referral. is there anything i should know before going to see her i want to make the most of it. she is not cheap lol. if you have any advise or anything before i go there i would really appreciate it.

again thank you

Hey Sarah
Dont stress - just go there with an open mind and see what they have to say.
Let us all know and whatever the prognosis is, I am sure there is someone on here with words of encouragement to help you on your way!!
I have been eating really well the last couple of days and had been feeling a lot better. Today for lunch I had a brain fart and had a sandwich with my kids - and boy am I paying for it now!!! I never realised how much diet is a part of all of this!
I had only been doing the gluten free, dairy free, sugar free and low alkaline thing for 4 days. Now back to square one!!!
But in a way I am glad, 'cos now I can see how important diet is!!!
Good luck hun - let me know how you go!
If you ever need to talk I can PM my number to you!
(((hugs)))
Charmaine xxx

oh my god, what has diet got to do with our vagina? please dont tell me she is going to tell me its what im eating cos i will just walk out. i really am confused please excuse my ignorance. from what i have read the physio will hekp with the pelic exercise and then make me use dilators. do you know anything about that process?. also do you know if i have sex does that affect any progress i may have made in the past few week. sorry charmine i know your not a doctor but im just having a panic attack at the moment..

That's great you are going to see Sherin, she is very knowledgeable and I felt she has been the only health professional who has understood, as much as possible at the moment, what is going on down there. I have also seen Marek Jantos, he was good, but not a physio so I don't think he really understood as much as I wanted what was going on in a muscular sense. I cried for a lot of my first session, but she was really great and made me feel comfortable even though I was so down about vulvadynia. She is going to exam your vagina more than likely..so prepare for that, she made me feel as comfortable as possible and very understanding of the pain and gives good strategies to help as much as possible. I left my first session feeling great nonetheless. The prof there is very good too and knows his stuff. He is always looking for new treatments, both here and overseas.

In my case, I use dialators, I'm not sure if she does this everyone as types of vulvadynia vary widely. I can't imagine that having sex will interfer, in fact it would reduced my exercises with dialators if I was having sex at the moment!

She will probably ask you what you have done as far as treatment in the past and will ask you about your period (pain, PMS, duration etc). I would suggest writing it all down. I went there and realised what a bad historian I am, had to really think how long I did treatments for, which ones I tried... Would be better to have a good think before going to see her and have it written so you remember everything and she can gather a good picture of you. Also she will probably ask you about how long you have been on the pill currently and in the past.

She might ask you about diet/digestion as tight pelvic floor muscle can interfer with digestion as the anus shares muscles with the vagina. Digestion is a different system but the muscles connect the two. So that includes what your poo looks like so have a look :/

As far as costs, go to your GP and get an enhanced primary care referral form and you will get $51.95 back from medicare for 5 sessions. The doctor has to agree that you are eligible which means you need to have had it for at least 6 months and have a few health professional involved so that could be a gyno, psychologist etc. But not all GPs will adhere to these rules also, so it is worth talking to the GP. Take Sherins details with you (name and address) so the GP can write it in the form and go before you see Sherin. Then take the form with you and give it to admin at Sherin office. Make sure when they give you a receipt the item number for Physio written or medicare won't pay!

That has been my experience and it has been all positive (as much as it can be!). I'm about to use tampons for the first time in my life for my next period, and I have no doubt that I will be able to do it! Finally...

Hope this helps and goodluck xoxox

thank you for the reply.

so sherin is a physio and she is going to help me with the dilators and pelvic floor mussels? im so sorry for doing your head in but i have sever depression and anxiety disorder. so i don't comprehend things that easily and i am still trying to get my head around this condition.

does she teach me the pelvic floor exercise or does she refer me accordingly?

No problem! Not doing my head in at all, I understand how overwhelming it is. Yes Sherin is a Physio. For me her focus was on pelvic floor stretches with dialators, she will teach you a bit about the anatomy of the pelvic floor and what she thinks (based on an examination) is particularly going on with your pelvic floor muscles or what she thinks is involved in your symptoms. She will explain exactly what you need to do if pelvic floor stretches is what may assist. They also have dialators there which cost about $90 I think, they are the best dialators I've used, previously had glass ones which I HATED!

My first session was mainly just history taking and an examination. She will take down your history and I guess assess what is the best course of action and give you options, and at the end of the day it is your choice what you choose to do. In general Physios work with the muscles and try to "retrain" them.

All the best with everything and I hope you find her helpful

thank you soo soo much i really appreciate your prompt reply's. you are really helping me mentally deal with this problem. from your experiences with this condition do you think we will ever be cured and run normal lives? i really hope so for all our sakes. i hope you are feeling better and your treatment is what you need to get better forever.

Hi everyone, I agree DOCTORS SUCK! I was wondering who dr marek is because I can't access the page online for some reason? Thanks so much!

No problem Sarah, I'm glad you are feeling more ready for it! From what I have gathered and what health professionals and research journals seem to be pointing at is that there are ways to help decrease the symptoms and for some people they do decrease significantly and you can run a normal life. But very hard to say, there may be many causes and from what I can see from this forum, very differing symptoms. I think there are ways to manage it so you can live without this being a major and emotionally gripping part of your life. I can't tell you definitively that there will be an answer at the end of the tunnel, whether it be Sherin or something else, but all you can do is try, as hard as it is at times. Doctors can be painful, but when you find a good one they are very very helpful! So don't give up hope on doctors or health professionals in general, vulvadynia is not a very common condition so a lot of doctors aren't going to know lots about it (I guess it would be harsh of us to expect them to), but there are definitely doctors that do!

I am feeling a lot better thanks but still not at the end of the road yet, I hope we all get better forever too!!!

I had a look for Marek Jantos' page and it is down for me too. It was called the "vulva pain clinic", there is one in Edgecliff in Sydney on Ocean Street. I don't have his number anymore, does anyone else?? He is a psychologist who did his PhD in vulva pain. He generally works with biofeedback and explaining the role that emotions play in our interpretation of pain.

Maybe it's a geini who specializes in vulva pain and understands related issues... Does anyone know one?

dear Cba 321..lol hope you are well...

i went and saw sheirn today and i think it went well. i think you and i have the same stream of valvadinya. because mine started from a urine infection and thrush and i was in so much pain my pelvis mussels went crazy. apparently instead of it being a v shape they are a W Shape lol. anyway she gave me the dilates to work with them. i feel more optimistic now i saw her. i would like to thank you for the referral you have no idea how much i appreciate it. i hope we both get the most of her treatment and get to live normal and great lives. also she told me to re-frame from sexual intercourse she thinks it will make my condition worse. ....

I'm glad you are feeling more optimistic! Makes life a lot easier being able to stay that way as much as possible! Keep up with the dialators, it can get very annoying but try your hardest and then at least you will know for sure whether it is working or not. She also said mine was a W shaped, however mine didn't start from an infection, I don't really know, but I am suspecting it is from a bad fall I had as I child, I fell on play equipment at school between my legs from a bit of a height. I was never able to insert a tampon as a young tennager it just wasn't possible to get it through the muscles they were so tight. This is before having any sort of infection down there, being on the pill or sex. On an up side, I just used tampons for the first time today and I have no idea it is even in there!!! can't believe it! That's no good about the refraining from sex...I don't have a partner or any interest in getting one or having sex (due to pain) so I guess she never said that to me, hopefully not for too long, and when you can, hopefully it will be a hell of a lot better! I'm guessing maybe it is so she can slowly introduce increasingly larger dialators into the vagina as they muscles are stretched by the exercises and not freaking out the muscles by having sex. Goodluck with everything! xoxo

Hi cba, if you fell on something as a child have you ever considered the possibility that there could be something psychologically causing your pain? It's amazing how much things that happen as a child effect us. I believe this is the route of my problem and I am seeing a psycho-sexual counsellor and using the dialators to help with the tight muscles, which inevitably happened due to my fear (conscious or not), and it is definately working!

Hope that is some help.

Hi Sapphire, thanks for your suggestion, and I agree it is definitely worth looking into. I have considered it and for a long time thought it was the sole cause of my pain. I have been to three psychologists to varying degrees about the pain. Overall the psychologists I saw didn't believe there was a major psychological link in my case at least as a cataylst/cause but no one can really know i guess. There is a strong connection between emotions/memories and all types of pain and I can definitely see that in my case with things like anticipatory pain however that is almost now non-existent as I have new memories of penatration not resulting in excruitating pain. I never thought, at least conciously, about the fall after it happened. It wasn't until I started seeing health professionals about the pain and them quizzing me about past injuries when I remembered when I did fall between my legs as a child. The fall itself didn't upset me past the initial pain, bleeding and dizziness I experienced when it happened. I was basically having fun in a playground and slipped, wasn't really a deep and emotional burden. If I was to take a guess at what caused it or set in motion the physiological changes to my nerves and then muscles, I would possibly point at the fall as I didn't have any major infections that I recall, have any major fears etc, however at the end of the day, the cause isn't really that important if whatever treatment you are doing is working. Psychotherapy didn't help in my case (very little anyway) but dialators and medication have assisted greatly, to a point where I can potentially consider some form of a "normal" sexual engagement. Glad you are getting good results too

Ah ok if medicine is working for you there is probably something else going on then. It does make sense that you would feel nervous about pain in your vagina if you experienced pain there as a child though, even if it isn't consciously, but if you have already spoken to counsellors and your medication is working then it sounds like you are on the right track

I hope things continue to improve for you