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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


New member - did your problems start with a UTI

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New member - did your problems start with a UTI

Post  Niknak on Fri Nov 20, 2015 4:21 pm

Well at last I think I may have an answer to my problems! Things started 5 months ago when I got what I thought was cystitis - quick call to the doc and I got prescribed antibiotics, the burning urine feeling went but I was left with a constant soreness - I was prescribed more antibiotics, then 2 lots of thrush treatment (even though I had no symptoms of thrush) steroid cream then more antibiotics for BV (even though no signs of BV). I finally had enough so luckily through work I have private health care so I got referred to a urologist/gynecologist - he put me on 3 month course of antibiotics to stop bladder infections and had a look in my uretha/bladder with a camera, he said everything looked fine but after performing a swab/smear he said I was very dry so it could be down to a lack of estrogen (I had recently come off the combined pill and went on the mini pill - all these problems started after I started the mini pill). So I am still on the antibiotics (not really sure why as I don't think it's cystitis related) and I'm now back on the combined pill and on estrogen cream - i don't think it's working, I'm constantly crying with frustration as I don't know for sure why this pain/soreness is happening - after breaking down in tears numerous times in the docs I just keep being told it could take months for my hormones to get back to normal. I thought I was mad but having just found this forum today I think it may be vulvodynia...so I'm next seeing the consultant in 3 weeks where I'll mention vulvodynia. What is the normal first go to treatment for vulvodynia? Does anyone else have a similar story to mine with contraceptive? Did your hormones balancing out help? Thank you for any help you can offer xxxx

Niknak

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Re: New member - did your problems start with a UTI

Post  PainBlogger on Fri Nov 20, 2015 5:12 pm

My problems started when I got a UTI and thrush at the same time last year. I'd never had thrush before and wasn't particularly prone to UTIs. I wasn't on any type of contraceptive pill. I had antibiotics and antifungals (cream, pessaries and tablets) and the infections went but I was left with pain, particularly after emptying my bladder but also on the surface of my skin and internally.

Normal first go to treatment - I think it very much depends on the doctor. I was given lidocaine gel (local anaesthetic) to use for six weeks at night on a cotton wool pad. When that didn't break the pain cycle I was given cimetidine (which is an interstitial cystitis treatment) to try. I was already on amitriptyline for nerve pain elsewhere in my body, but the doctor suggested I try increasing the dose of amitriptyline. I think amitriptyline is possibly the most popular first line oral treatment for nerve pain as it is so cheap and has been used for decades. If you end up seeing a pain management specialist they may be more likely to suggest drugs such as pregabalin or gabapentin for nerve pain. I'm not sure that a gynaecologist/urologist would have so much experience at prescribing those. My gynaecologist basically told me there was nothing visible and discharged me from her clinic, which is how I ended up under the care of a pain management specialist who has more experience of dealing with chronic pelvic pain issues.

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Re: New member - did your problems start with a UTI

Post  Niknak on Fri Nov 20, 2015 5:27 pm

Thank you for responding...that's really helpful, I was prescribed lidocaine gel after begging for something but was told to only used it twice a week so gave up on it, it's been prescribed in small syringe type applicators that I put onto cotton wool pads and wipe into the entrance of my vagina...I've only been prescribed 14 doses but now I might try this nightly to break the cycle? So it's safe to use every night?

Niknak

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Re: New member - did your problems start with a UTI

Post  PainBlogger on Fri Nov 20, 2015 9:53 pm

It is safe to use nightly, but it's best to check with your doctor before altering the dose of anything. Presumably you'll need to get another prescription for more applicators? I don't think nightly for fourteen days would be long enough to break the pain cycle. It's usually 6 to 8 weeks. I had the 11ml size syringe applicators (Instillagel) and was able to get two days use per syringe. It's ever such runny stuff, not the easiest thing to apply...

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Re: New member - did your problems start with a UTI

Post  sgw11 on Sat Nov 21, 2015 12:16 am

Yep I am the same. Mine started with what felt like a UTI. I kept going to the doctor and getting urine tests done. No bacteria ever cultured but they prescribed me antibiotics anyway. Sometimes the feeling would go away, but it always came back. I was eventually put on macrodantin by my GP which is a preventative antibiotic for UTIs (mind you they still had only grown culture once). I was also treated for thrush and swabs were taken, but nothing would come up. The feelings kept coming and I finally decided to go to a gynaecologist. That's when I was diagnosed with vulvodynia.

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Re: New member - did your problems start with a UTI

Post  sgw11 on Sun Dec 20, 2015 7:05 am

Just a quick question, were you guys having sex when the symptoms started? Or was there no event that triggered it? I'm just curious because mine started when I was having sex, however I have previously had pain-free sex before all this happened.

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Re: New member - did your problems start with a UTI

Post  PainBlogger on Sun Dec 20, 2015 9:06 am

It had been a few days if I recall correctly. Then I got the thrush symptoms first (which I'd never had before ever) and the UTI symptoms (which I'd only had very rarely in the past and not in relation to sex necessarily) a couple of days after those. I also had previously pain-free sex.

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Re: New member - did your problems start with a UTI

Post  sgw11 on Sun Dec 20, 2015 9:11 am

That's interesting. I had had a few UTI symptoms in the past but nothing major either. But same thing, it felt like a UTI but kind of itchy as well, but with no discharge to indicate it was thrush. Yet over and over again I was prescribed antibiotics (when no bacteria was ever cultured except once) or I was told to go buy fluconazole, yet the swabs also never picked up anything. Thanks for replying.


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Re: New member - did your problems start with a UTI

Post  tinkerbelle2 on Mon Feb 01, 2016 8:54 pm

Hi Niknak! Welcome to the forum, but sorry as well that you're here... No I think mine started with a UTI too, but around a similar time I also had thrush and was on the pill! And I was on antibiotics for the UTI. So it could've been any of the above that disrupted things. Mine has a lot of similarities with yours by the sounds of it!
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