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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 …

Comments: 8

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.

Comments: 1

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


Lost and depressed

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Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 1:24 pm

I have completely reached the end of my tether with this...

Four years ago, I was given a bath bomb. I had a really lovely bath, which turned bright blue with all the dye in the bath bomb. The next day, my bf and I were n bed, and it was like being with a cheese grater. Of course, I thought it was thrush, I tried the creams, they didn't work, went to the Dr, they gave me more creams and pills, went back to the Dr was given more thrush treatment... 6 months later they spiced things up with eumovate (steroid) cream, then they went back to the thrush treatments. After a year, I was referred to the vulva clinic, after 15 months, I finally saw a specialist an was diagnosed with vulvodynia. The Dr told me that on average it lasts 18 months, an I though 'great, only 3 more months of this hell'.

My first appt with the vulva clinic, I left with emulsifying ointment, anti-depressants, anaesthetic, instructions to cut out just about everything, and a whole lot of leaflets, and I was pretty happy that it would be over soon. I was referred to a physiotherapist to teach me pelvic floor exercises, an given cones to help stretch my muscles. Nothing helped.

I saw that specialist for 2 years before I moved to a new city 300 miles away and was referred to a new gynaecologist. This came with a whole new set of tests. I was told I had thrush again, I had swabs taken, and I was told that I had a collection of lumps around the vestibule which she thought were warts. Of course, I'm sure most of you have jumped on any new possibility that it might not actually be vulvodynia - I went to the sexual health clinic for tests, knowing that if I tested positive for anything, it would mean my boyfriend had cheated on me, but at least I'd be clear of this hell. It wasn't warts. It also wasn't thrush.

Six months ago, I thought perhaps it was a hormone defficiency, so I started to take herbal supplements for menopause (I'm 24), and waited until I went back to the gynaecologist. The gynaecologist decided to try me on estrogen supplements, which were horrible - I took them for a month and nothing helped, but coming off it again, I started to feel really depressed and tearful.

Five months ago, I decided it was an allergy to sulfates, and cut out everything that contained even a hint of them.

About 4 months ago I returned to the gynaecologist, and she said we had two options -steroid cream and come back in 3 months for a biopsy if that didn't work, or just go for the biopsy. I decided I had had enough and opted for the biopsy. I hadn't realised it would be a deep tissue biopsy, so I had only arranged to leave work for an hour, and had to go back afterwards (ouch!) but I didn't mind because it was finally going to give me some answers! Three months ago, I got the answer - contact allergic dermatitis!

I was so pleased I had an answer - there it was, finally, in black and white, it's not vulvodynia! There's a cure! I was so relieved, but I was trying so hard not to get my hopes up. I applied the cream every day for 2 weeks, then stopped for a week, applied it again for another 10 days before I got concerned it was causing everything else to feel swollen. I switched to a non-steroidal herbal equivallent, used that for 3 weeks, but that hasn't worked either.

I stopped using it 2 weeks ago now, and just feel really helpless. I finally had an answer and a way forward, but now it's back to this in-explainable pain, and I have no idea where to go next. The only light on my horizon is an allergy test next month, but I've stopped using everything I can possibly think of, and I'm just back in this horrible situation again.

I'm still with my boyfriend, and we've been together for nearly 4.5 years, but we haven't been together for 4 years now. I'm 25 in 6 weeks, and I'm starting to reach the age where I'm thinking about the possibility of getting married, having kids down the line, but I just don't know how I'm supposed to be able to do that! I can't get married because I can't consummate it, and I definitely can't have kids. Although I love my boyfriend, this is not fair for him - he's young, and should be able to enjoy his life, and I can't escape that horrible feeling like I'm just holding him back, and he's only here out of obligation. I can't speak to anyone about it, because it's impossible. I told my closest friends about this problem 2 years ago, but they haven't mentioned it since, and I think they have assumed it's all better now, because why wouldn't it be.

My current job has me 300 miles away from home, and I've been so lonely, that when I came off estrogen, it threw me into depression. I started to get out from under my cloud, but the failure of this latest cure just has me spiraling back down to my lowest ebb, and I have no one to help support me through it - even my boyfriend is 300 miles away. All I want to do is cry, I haven't got a clue how to go forward, and I'm just drowning in it all.

Elc88

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Re: Lost and depressed

Post  Sarah001 on Sat Jul 20, 2013 5:24 pm

If it is contact dermatitis have you tried any anti-histamines? I would have thought if it was allergy based that would be the place to start if you haven't already, I'm not sure which one would be the best for it as they all work better for different problems but it might be worth a try? There are also anti-histamine creams but I think I'd start with tablets. Also I think I would look up all the ingredients in a bath bomb if that started it and see where else these things could be, it might lead nowhere but it's something I would do just in case. When I went to a GU clinic to get checked out the dotor there was telling me about a lady who had contact dermatitis behind her V and they just couldn't figure out why because she'd stopped using soaps etc and finally it emerged her husband was reading a newspaper before going to bed then he'd touch her and she was allergic to the newspaper print so it could be any number of things causing your symptoms. If you haven't tried anti-histamines though I would at least give that a shot.
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Re: Lost and depressed

Post  Elc88 on Sat Jul 20, 2013 6:52 pm

Sarah, thanks for the suggestion, that is an unusual but good idea. It's definitely not newspaper ink, but over 4 years, I can't think of anything I haven't stopped using for at least a little while... I wondered if there was a chance it's something I'm eating as well. But also can't help but shake that feeling that, while the biopsy found a problem, maybe there is more than one.


I meant to say in my post -I'm sorry for the incredible length, I'm so frustrated it kind of ran away with me! My one bit of advice for others would be to ask their gynaecologist whether they think a biopsy is something they will be offered eventually. Despite the pain and intrusiveness, I wish I had had mine 3 years ago - it would have saved me so much time, money, energy and tears chasing false possibilities.

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Re: Lost and depressed

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