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» Can you guys tell me your experiences with diflucan/Fluconazole?
Yesterday at 1:29 am by ryn207

» So frustrating!!
Yesterday at 1:25 am by ryn207

» Looking for suggestions or encouragement
Yesterday at 1:19 am by ryn207

» Looking for a friend..... and new problems
Mon Jan 15, 2018 10:00 pm by VVSSufferer

» Vestibulectomy recovery question!
Sun Jan 14, 2018 11:37 pm by Kezz

» Prescription creams that work!
Sun Jan 14, 2018 4:46 am by Mintaherb

» Struggling
Sun Jan 14, 2018 4:29 am by Mintaherb

» Went Away and Came Back
Sat Jan 13, 2018 10:56 am by mary jane

» Amitriptyline given for vulvodyina pain
Sat Jan 13, 2018 1:39 am by ryn207

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 5

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


Newly diagnosed...still unsure

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Newly diagnosed...still unsure

Post  MarieJo on Fri Jan 11, 2013 10:27 pm

Hello, my name is Marie and I am new to this board. I have had a rough time over the past year, but am feeling hopeful after finding this site. It's so hard having a condition that you can't really talk about to anyone.

My story started in March of last year. I had the first UTI of my life, took a 5 day course of antibiotics and went about my day. Two months later, the UTI resurfaced along with a new burning sensation. My doctor believes that the original UTI had never gone away. I was put on another round of antibiotics that took away my UTI symptoms, but never took away the burning sensation.

In my mind, I justified the burning as residual inflammation from having the infection for so long. After a few weeks, the burning went away and I thought I was in the clear. Then a few weeks later, the familiar burning returned. Over the last few months, the burning has come and gone with the time in between the "flares" becoming shorter and shorter. The burning is now constant except when I am sleeping or when I first wake up.

I went to my gynecologist who thought it sounded like Interstitial Cystitis. I then made an appointment with a urologist who did not think my symptoms sounded like IC at all. I do not have any frequency issues, bladder pain, etc. She instead diagnosed me with vulvodynia after doing the q tip test. She gave me a script for physical therapy and a compounded cream.

I just started the physical therapy this week....I guess I am just still worried that something is being missed. If I truly have vulvodynia, then I am prepared to move on and deal with it, but I can't stop this nagging feeling in the back of my head that says it's something else. I do have scheduled appointments in Feb and March with two different specialists, but it's so hard to wait when you are miserable.

I feel like I'm not giving the physical therapy my full attention because deep down I don't feel like it will work. Sad Is this a normal state of denial I'm in after being newly diagnosed? I guess part of my problem is that I really can't tell where this burning is coming from. My physical therapist had a model of the pelvis in her office and told me to show her on the model where the pain is, and I couldn't do it because I truly don't know. And as for the q tip test...wouldn't that be painful or uncomfortable for everyone? Dry cotton being poked or dragged along such sensitive skin seems like it would be similar to the feeling of pulling out a dry tampon.

I would really appreciate it if anyone could give really detailed descriptions of the burning pain you experience. Are you able to pinpoint an exact area? Or is it more general?

Thank you!

MarieJo

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Re: Newly diagnosed...still unsure

Post  meelie on Sat Jan 12, 2013 2:03 am

Marie, I am new here also, I was diagnosed in September after I had self treated for what I thought was a yeast infection. After the monostat didn't work I went to the walk in and was diagnosed with BV. He took samples for tests for STDs, BV, yeasts and I don't know what else. Was put on Flagyl and another yeast medicine. All the tests were negative and then he put me on Estrace vaginally and a steroid ointment to the perinium. No results.
Anyway, to answer your question my burning is just generalized all around my labia and vulva. Like you the only relief I have gotten is when I'm sleeping and for about an hour after I get up. Then the discharge starts and the burning starts again. My pH according to my gyn is normal. I was just put on Neurontin last Friday along with a muscle relaxer. I also have been going to my chiropractor every week at first now every 10 days. Yesterday and today have been the best days I've had since Sept. 4. I do not know what is helping. A yea a whole lot of prayers also. I am still burning but most of the last two days have not been as bad as the other ones have been.
I don't use any soap on my vulva, just warm water and have quit using deodorant soap at all, using Dove bath lotion.
I hope I answered your question.
Oh yes, the reason I thought of the chiropractor is because I suffered a fx pelvis a year and a half ago and have not been able to relax my muscles down there since.
I have set on my right buttock since the accident and I figured I have pulled my sacrum out or something from the constant tension. I have also had a very very stressful fall emotionally. I'm figuring all of that is contributing to my problem, especially since I cannot relax.
Hope this helps. I'll keep watch for your reply.

meelie

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Re: Newly diagnosed...still unsure

Post  Sarah001 on Sat Jan 12, 2013 1:49 pm

Hi Marie, my V started the same way from my first ever UTI and I spent quite a long time thinking it surely couldn't be the pelvic floor. I have a very unstable pelvis but I still couldn't believe the pelvic floor could cause my symptoms then I started doing alot of research and finding lots of women who started thie same way and it was indeed the pelvic floor because they got on top of it with physio (PT) so I took myself off to get my pelvic floor checked and it's the tightest pelvic floor the physio has ever seen in her 30 odd years of practice. I find now if I can avoid clenching it makes my pain much less and if I clench it gets much worse. Because of my unstable pelvic joints I haven't had the trigger points removed or any stretching of the muscles done yet but I can now see the connection. I think it's quite normal to think it can't be the pelvic floor, I know lots of women online who sound like very typical pelvic floor cases who are reluctant to even get it checked because they can't believe that's their problem so it's good you've taken that step. UTIs can cause the PF to spasm because of the irritation so it's perfectly plausible that's your cause. If you're worried about other causes you can go to a GU clinic and be tested for all infections, try a week or so of 1% hydrocortisone cream to see if it might be a skin condition and of course cut out all chemicals to the area without needing a doctor to do those things with you. The q tip test is a very light touch so women with no pain wouldn't really feel anything except a light tickling sensation but of course it only tells us what we already know, we have pain there! Try and make good of your PT sessions because if the PF is your cause it could be your answer and you can still try other things alongside the PT you don't have to try each thing seperately. Your PT should be able to tell if you have spasm in your PF and I assume she can feel some or she wouldn't continue with treatment so it's a necessary step to carry on with it. Regarding the UTIs I get repeated ones since this started and my physio said it's because the tight PF inhibits the detrusor muscle and the detrusor muscle is responsible for emptying the bladder so incomplete emptying leaves urine in the bladder which makes us very susceptible to infections. Makes sense when I know the technical reasons! I do double emptying to try and get as much urine out as possible each time and try to keep my PF as relaxed as I can get it to help with the pain. There are a few of us having PT in the physiotherapy and biofeedback thread so if you want to talk more about your sessions you'll find us in there! Wink
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Re: Newly diagnosed...still unsure

Post  MarieJo on Sat Jan 12, 2013 5:01 pm

Meelie- Thanks for taking the time to reply. I am glad to hear that you have been feeling better lately. I can totally relate with not knowing what is helping or making the condition worse. Mine seems to have no rhyme or reason for what causes it to flare up or get better.

Sarah- Thank you for the PT pep talk. Smile I know I need to stick with it and give all my effort. I think if I could just get my stress level under control, I would be so much better off. I've just been so worried for so long about what is wrong with me. On top of that, my husband and I had plans to start trying to conceive right when all this started happening. I think that is just adding to my stress because it's starts a vicious cycle of worrying about my biological clock ticking and seeing no light at the end of the tunnel with this issue. I've only had 2 PT sessions so far so I know I need to just be patient.

MarieJo

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Re: Newly diagnosed...still unsure

Post  Sarah001 on Sat Jan 12, 2013 5:46 pm

Ask your PT about some deep breathing exercises Marie, not only will they help relax the PF but also help with stress. You're very welcome for the pep talk and I hope you start making some progress really soon.
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Re: Newly diagnosed...still unsure

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