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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



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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 …

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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

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 …

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Post  katie220 on Wed Mar 20, 2013 5:51 pm

Hey everyone, I just wanted to ask you all a few questions about whats going on with me. My pain has been the same around three years. The pain gets better around the first day of my cycle and then progressively gets worse towards the luteal phase. Sometimes I can have sex and sometimes I can't. The strange thing is that the pain is mainly on the right side of my vagina. Docotors always told me I had a bacteria problem but no anti biotic ever helped. It doesn't make sense because if I had a nerve problem then why would the pain get better at times? I am really frustrated. Another odd thing is that if I take xanax the pain level goes down. Also, if I drink baking soda and water the burn on urination will go away. I am just really worried that this will turn into full blown constant pain and it will be all my fault. Can someone who has had this for awhile give me some advice?

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Post  Alana3 on Wed Mar 20, 2013 6:11 pm

Mine always got worse before my period, and mine is worse on the right too. You could possibly have a muscle spasm on the right side which makes it uncomfortable. I had surgery in December and my probelm disappeared except for the muscles, which is a work in progress. If you take a xanax its for anxiety, so I would imagine that the pain would diminish because it makes you relax and if its at all muscular, well there you go! Perhaps you have IC? I think burning with urination is a symptom of IC. Also, people with IC have trouble having sex as well. Do you pee a lot? And nerves are stupid, my pain was only there if provoked not all the time. So even with a nerve problem, it doesn't mean that your nerves aren't firing off different signals at different times. Pay attention to what you're doing when it starts hurting really bad. Sex? Sitting too long? But my vulvodynia def got way worse (as did everything) when my period came and better after it ended. Stop taking the antibiotics unless you really need them, they aren't going to help you for what you have. I had a doctor who did that to me too, and it never worked, finally, I got so frustrated I went to look for a specialist (after I was told I had herpes which I DIDNT!) and he diagnosed me with vulovdynia and treated me with a topical compound for a while and finally I couldn't take it anymore I opted for surgery.

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Post  katie220 on Wed Mar 20, 2013 6:38 pm

Thanks for the reply! I don't think I have IC. I mean I pee a lot but I've been that way since I was a little kid. What kind of surgery did you have? Surgery would be the last resort for me but if it works I would definitely do it. The only problem is that I can have sex at times and I wouldn't want surgery to numb me to the point where I can't have an orgasm anymore. Did it do that to you? I was also wondering if you felt a sort of "zapping" feeling or a feeling of electricity on your right side at times. It happened to me when I stopped drinking caffeine. Yes, it does get worse when I sit too long. When I get up and walk around it gets a lot better.

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Post  Alana3 on Wed Mar 20, 2013 6:50 pm

They basically removed the affected skin, it was a last resort for me too, and my doctor tried everything before he did the surgery. I mean I'm not having sex right now, but I still have every sensation (besides the pain) that I had before surgery, now. You'll def be able to have an orgasm lol, no worries. I sometimes do get an electrical feeling, but its every now and then, but I think mine is from where my body is recovering from my surgery lol Yours sounds like mine where your skin is affected and possibly some muscular. But I mean I don't know for sure. Where are you located? If you're anywhere near me, my doctor is awesome and has made me feel so much better Smile

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Post  katie220 on Wed Mar 20, 2013 7:04 pm

That's awesome! I always thought surgery made you permanently numb lol. I live in a suburb around Kansas City Missouri. What was your condition called? If you can't give me the name of it could you describe it to me more? I want to tell my doctor about it because he is confused about what my problem might be too.

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Post  Alana3 on Wed Mar 20, 2013 7:31 pm

If your doctor doesn't know what your problem is, I'd get a new one or someone who can help point you in a direction appropriate for you. Mine was provoked vestibulodynia, basically meaning that my pain was only there on contact (with a penis, qtip, pelvic exam, tampons, etc.). So sex was impossible, and where it sometimes flared it was nothing like I've heard other people describe. I guess it could make you numb, but that was a question I asked my doc when he first told me about it, and said that would defeat the entire point of the surgery and most people have like 98% success rates. I'd say mine was that close. The surgery itself was called a vestibulectomy. However, only a few people are referred that route because it's not for everyone. People with unprovoked vestibulodynia are not often reccomended to go down that road, for whatever reason, it wouldn't work in their case. But I had no burning with peeing, I would look into that too, that sounds awful. I live in Florida, I don't know if that's an option for you, but my doctor honestly was a life saver for me, he specailizes in vulovdynia, and chronic vag pain. Another thing I did was physical therapy, but before my surgery it was so painful I couldn't take it anymore and had to stop, now I go with no problems, except for muscle spasms. Grrr.

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Post  katie220 on Wed Mar 20, 2013 9:16 pm

Thanks for all the advice! You definitely helped. I will keep you updated on how my progress goes and I'm going to look up some vulvar pain specialists in Kansas City. I may just have generalized vulvodynia because it's not provoked. I'm only 24 though so I'm not really sure if I'm too young for that.

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Post  Alana3 on Wed Mar 20, 2013 10:16 pm

It doesn't matter how old you are there are little kids with it unfortunately. Good luck lmk if u need anything

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