Hi, I'm new- here's my story

I was only able to read a few of the stories on here and had to stop because i was crying all over the place- so I thought Id get my story off my chest first. I have had vulvodynia for nearly five years, starting with a string of UTIs treated with antibiotics leading to repeated thrush infections and a whole lot of pain. The infections cleared up, swab tests kept coming back negative but the pain was still there. And has remained.
I have had the same partner all this time, and for a year prior. He is wonderful and understanding but it has strained our relationship. Before Vulvodynia I has a beautifull, pleasurable, life affirming sex life and miss this very very much. I grieve the loss of my sexual function, and often feel impotent, ugly, crippled, worthless, and lots of other horrible feelings.
I am seeing a physiotherapist and am on antidepressants for neuropathic pain. I am modestly hopeful im on a road to recovery. I have been subjected to some very insensitive and offensive treatment at the hands of many GPs and have finally found one who is understanding and appears to know something about the condition. She has suggested I see a psychiatrist also, as I am not coping well with the chronic pain. I have not discussed this with her, but have frequently considered suicide, particularly when being passed from one doctor to another, with no diagnosis and no apparent hope of getting better.
I hope that there is a light at the end of the tunnel for all of us.

Hi Lisa,

From all the stories I've read so far, I don't think many ppl get a smooth diagnosis of this condition. I hope in joining this forum you'll take comfort in knowing you're not the only one going through this.

Treatment can be a slow process.... and in terms of treatment/medication its a bit of a trial and error process. I think it would be a good idea to take your GPs advice and perhaps seek a psychiatrist to help you cope. I've have been seeing a counsellor throughout the time I've been treating this condition. And I would have to say, if I hadn't, I would have gone out of my mind a long time ago.

The only advice I can offer is to seek help to take care of your mental and emotional health. Talk to your partner and friends about what you're going through - sharing your feelings... even suicidal feelings will lift some weight off your shoulders.

And whilst you're still trying to find a suitable treatment that works for you... focus on other things in your life that bring you joy.

Am only talking from experience and what has helped me to cope with it so far.

*hugz*

Sue

Hi Lisa, it's very strange how lots of women start with something like a UTI isn't it? I had one when my symptoms started too and I've never had one before in my life! However I don't think any of us should give up and assume we'll be afflicted with this for life, we may recover or at least improve.

I'm no stranger to chronic pain, I have it all over and have had for the last 6 years so I never get a break from pain but I'm finding this vulvar problem harder to deal with than the rest of it. I don't know why, probably because it affects my relationship so severely and even restricts what I can wear etc. Or maybe it's because there's a lack of answers out there.

If your problem is indeed related to your back it could be a good thing, unless you have discs out that are trapping nerves most back problems can be at least drastically improved so if that is causing your symptoms it's a hopeful situation. I keep reading stories online from women who have done pelvic floor work and had their backs sorted out and have recovered which is why I've booked in to see a Women's Health Physio this week. My back problems can't be resolved (genetic disorder) but she might spot something about them that would make some sense if you see what I mean? And I definitely need some pelvic floor work so I'm going down that route too.

Strangely I haven't done too badly with doctors so far, I had a rocky start with being passed backwards and forwards between nurses and GPs but I resolved that by going to a GU clinic and the consultant was fantastic. I've since involved the only female GP we have at our practice and she's pretty good too so in that respect I've been quite lucky.

Keep us informed on your progress.

Hi Lisa and Welcome to the forum.

I can sooo relate to all you say. Im not in a relationship at present and it can feel real lonely and for over a year now Ive not even bothered looking cos Ive thought well whats the point? The loss of your sexual being is extremley distressing...but dont give up.

Ive so decided now that I will not shut the door on dating...there are a lot of other fun fings I can do even if I cant always have intercourse!

And yes I too have thought about ending it all, living with chronic pain whilst every docotor looks at you blankly is soul destroying. I have counselling anyway and this is helping.

Please dont feel you are alone because you are not and we are all battling to find effective treatments. We can do this together.

I have my pain clinic appointment tomorrow and right now I am reading every post and noting down all the great advice from these wonderful ladies

I really dont know what I would have done without them..I do hope you can find support advice and friendship on here

Godbless and take care

Sebby

xx

Hey Lisa!

Yes another fellow lady with 'la-la' troubles on here.

Def can relate to the crap treatment of GP's...I did the rounds of finding a decent one in Cheltenham...saw about 4 different ones who where complete dumb-ass's. Then found one who I thought was good and after about a month of seeing him he turned round and said "You have burdened me with your problem"....what a complete dick!!!

After that I was so angry ever time I had to see him (for sick notes etc) and he pulled me up on this and we had it out. Since then he's been pleasant as I said I would file a complaint. He's only useful for writing referral letters when I find a new 'professional' that could be of help.

He referred me to a psychiatrist, who I have to see privately now (I wasnt enough of a liability for the NHS to consider me!!...so some positive bit there!). I see her weekly and she is a god-send. Some weeks I dont go out apart from seeing her (lost my job through this) and she helps me get everything out in the open. She recently changed my antidepressant medication as I have slipped lower mentally, so hopefully in a few weeks it might lift (fingers crossed).

I can completely understand the low feelings and suicidal feelings. I have them too and its frightening how much time you can allocate for these thoughts. I've talked about it with my psychiatrist and also my parents. Its horrible and so frightening to be put int this position...lifes a complete bitch!!!

At present I am desperate to try and pull myself out of these negative thoughts and am looking into CBT, maybe regular sessions. I dont know.

I also know I need to do exercise but am finding that hard with the low mood and pain. Ive booked onto a callanetics class I randomly found online. I used to do callanetics regulary when I was younger. Look at it on youtube if you havent seen it. Of course when I do go to the class next sat shes goin to have to adapt some moves for me as it hurts so much down there, Ive emailed her and warned her of my condition.

I'm one for giving out advice I know but I know its hard but talk to people about whats going on with you, your parents, family, friends, even the boy kind! I think my theory is that the more people I open up to...the more of a chance someone might help to find a treatment or pass on contacts!!!

Sebby, I need to get some tips on positive dating!!! I wouldnt have a clue where to start now Ive split with matt...feel like a freak when I go out and clam up even when a guy looks at me. gggggggrrrrrrrrrrrrrrrrrrr f^&king condition.

I'll tell you what Ive noticed about this site though...we are all very well spoken and hardly swear! I think if I wrote exactly what was in my head the page would be blue and I'd be named 'Miss Potty Mouth?

Anyhoz, Im babbling. Lisa, you are def NOT ALONE in this. And I take great comfort in this and being a member on this forum. Before I found Sebbys site I used to trawl the net and email the occasional girl who 9 times out of 10 wouldnt reply. It was horrible, at least now I feel like its a 'safety net'.

Right, Peppermint tea is calling me to brew!

Hugssssss
xxxxx

https://www.youtube.com/watch?v=cA_6wUpaejw

thought id add this clip....the exact same video my mum had....1983 special!!!!

Oh my god "Miss Potty Mouth" I used to do Callanetics too! I went through a phase in the late eighties (showing my age!) and used to do an hour when I got in from work. I recently tried the glute exercises and the sideways one where you hold the back of a chair was impossible!! I used to whip through 100 each leg of those and now it feels like my leg is a dead weight, no matter how much I willed it to happen it wouldn't lift off the floor!! My back isn't up to Callanetics nowadays because I already have too little lumbar lordosis but I used to love them and had a super flat, toned abdomen when I did them regularly too. What it was to be 17 *sigh*

Hi Naomi, im most definatly on the dating marking but I dunno where to start hahaha..Ive been single now for a year and a half so im starting from stratch!

Well I had my hair cut this weekend and had me nails done so thats a start! Im such a crap flirt face to face tho, its ok texting and stuff but I do clam up lol

Im gonna have a practise on sum poor unspecting guys, like just randomly, God help them...more like I will blush and fall over...

I need to get out more really ugh! but where? I mean in pubs etc I just get the drunkards, I fink I need an intellectual one so I must start hanging round museums and art gallaries looking suspicious.

I once went on eharmony...turns out I have noooo matches anywhere!!!


Seriously fuk my life...whoops I swore...hehee

xxxx

hehe! someone knows Callanetics! Callan's a legend! or leg end! never seen someone so flexable I swear shes made of rubber! Im determined to 'try' and get back into some form of exercise again.

Earlier I did the 100 seconds of the arm exercises and neck... first time in agessss!

Im going to persevere though as Im so unfit now after a year off work. meh!



Sebby! lets go out and act like Bridget Jones. Ok maybe not, we'd never get anywhere!! Oh Loooorrrrdy!

You Englanders crack me up. When doing exercises (per my physical therapist) do not do sit ups or any exercise where you are using your stomach muscles to push down into the pelvis. the stomach muscles are connected to the pelvic muscles. i am working on strengthening my lower stomach muscles. pilates is good...core work. jumping around..not so good. my vuvla burns at about 15-25 mins of cardio. my P.T. suggests that i do cardio for 10 minutes then go do other exercises and come back.

dating advice...don't get married. ha ha...oops that is marriage advice. just kidding. i am going on 21 blissful years of marriage. i am sure this husband of mine would have stuck by me even in the dating process. there are great guys out there. i do think this does a huge number on our self-esteems and definitely leads to depression.

the good news is...it will get better..we just need the right treatment. I love the idea of sharing your feelings w/ family, friends and us. get support..therapist etc. i knew i could not live w/ the chronic pain i had. my spouse supported me along w/ family etc. i didn't give up...and still won't

keep talking..you're not alone and there is hope. it can and will get better.

Good Morning
I am new to this site, I just found it yesterday. I have been in pain for 8 months now. I have my good days and I have my bad days. When it first started I thought I had vulvar cancer. So that sent me off the deep end, went to my gyno and everything came back good. I was then referred to a wonderful doctor at UNC Chapel Hill. I am on meds and they are working wonders, the pain is still there but not as intense. I have not even tried to have a relationship with my husband I am scared to death of the pain it may cause. I tried to stop taking the meds, BOY was that a mistake the anxitey was over the top and the burning and raw feeling just about caused me to end it.
I take Adavan for the anixety and Cymbalta for the pain. Dr. said that the Cymbalta works on the nerves and that is what causes the burning. The anixety comes from the constant burning and raw feeling and also caused the pain to seem more intense.
I would love to be normal again and live life to the fullness that I once did. My husband is there for me always and I am so lucky to have a wonderful man in my life like him.
There are days that all I want to do is cry. I have to try so hard at work to cope because I do not want to lose my job. It is just hard to keep my mind on the work. Please pray that I will get better. My doctor said this could last foe a while or forever.
Donna

Hi Donna, I'm not sure if I've just asked you this in another thread but have you had your pelvic floor checked out for tension? And the muscles around the pelvis for imbalances etc? The stress making the problem worse could actually be because you naturally tense muscles up, including the pelvic floor, when stressed, I know because I do it too and I know at least one other lady on here has the same problem. If you haven't had your pelvic floor checked with a biofeedback machine I'd suggest that as the next course of action. If you read Dr Glazer's paper on the subject he states you can actually identify women with vulvodynia by their pelvic floor resting tone becase it's always higher than it should be so it's well worth looking into.

i am new and i to have had alot of depression, my main thing is i dont feel like a women because my parts dont work, and i see a counselor and she said i am a women and to just keep doing things to make you feel like a women wearing sexy underware which is hard because it hurts i have not tried that, nylons are hard to use as well and just play the role, which is hard to do when my parts dont work, because this i was very senstive to orgasims i could have them all the time and i know i cant but felt good because some of my friends have had a hard time having them, i dont feel like a women i am only 45 and i like to be intimiate i am afraid i will never be able to feel that intimacy again and i want to be loved, i was very sexually active just last year is when all this started- i am knumb and i dont feel anything when i have had it with my boyfriend and we did alot of foreplay as well as he knows my senstive parts and where i feel aroused, i need advice i want to give up but i am not ready i have no sex drive, my short storie is i went to a gynie for a routine visit then i wanted her to check me for a possible bladder infection, she said i had a little blood in my urine and it was a slight infection- she gave me an antibiotic and i broke out in hives, i started having problems during the day feel uncomfotable like something was stuck in there and everytime i urinated i was stinging after i urinated not before, then she referred me to a clinic at northwestern hospital , i live in chicago, and it was a specaility clinic for vulvydina- but i did not meet the criteria and one of the first things they would do was see a determoloigist- but i went to my family doctor then i went to a uroligist- then i went to another uroligist- the first one said i had a bladder infection and gave me a medication, it did not work, then i went to the hospital overnight and had a scope to check me out- they said i had ic took pills for that that did not work, then i read about the vulvydina symptons and i have stinging, throbbing, rawness, soreness, hurts to have sex, dry, - then i went to a lady who specializes i vulvydina she said i did not have ic i had swollen glands its called vvs, my vesibular glands were removed in her offiice, and it took care of part of the problem, because i felt better during the day and i was with my partner and had an orgasim but it was through the jeans which i cant understand that but i felt happy that i could have one, then the pain came back at nightime only i was ok during the day, i went back to the vulva specialist and she said i would be referred for pelivic floor exercises referred to a physical therapist, and i did the bio feed back machine with the vaginal inserts, i did ok with that, they also used something to put on my ankle and stimulat the pelivic area, it felt like vibrating on my ankles uncomfortable but i did it and they did this other thing on my toes using a pen and just touching each one with a needle- it was also uncomfortable and i dont know the name of that one - the pelvic exercises with the machine helped and i do the exercises all the time they are called kegel i do them consistandly- my physical therapist referred me to a uro gynie out of the university of chicago, then she gave me a estrace cream and elevil at night - both i take at night i am on 1 mg of estrace, and i take elevil 25 at night with the cream it is ok so far - but still have the stinging once in a while, this has cost me alot of money and i dont understand how it could come on all of a sudden, - it does say it will happen all of a sudden then it will stop, i am still not on the right track i have been researching because i have been through all different directions and want to get on with my life but this prevents me, i only have the pain at night during the day i am fine - the surgery took care of the problem during the day but it s a mystery cause i still have this at night, does not help when i also have panic disorder and biploar- i was doing good with that until this happened, since i dont trust doctors i was looking into the hives i had and i found an article saying the hives could bring this on- my last step is seeing a determoligist to see if that was a possibility and if i have a skin condtion, i am in the process of moving away and starting a new life- i am on disability and looking for work i teach preschool and was in the process of leaving to move to southern illlinois i had a job offer before this i am frustrated and depressed, angry, why me going on and hurt - dont feel like a women- been through the ringer, and i feel alone because it is hard to get support there is not much talk about this i have tried support groups in my area there are none, i joined this hoppiing to hear womens stories and inspiration i need at this time hoping i could get through this need to know if others have got through it please give me some piece of mind i really need it i am alone, i have also having someone send me a copy of vulvydina on the doctor oz show in january of this year- could anyone help me with what i have told - anything about all i have talked about i thank you and any inspiration would help