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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 …

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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


The Shadow in our Marriage

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The Shadow in our Marriage

Post  Finch on Mon May 20, 2013 9:39 am

Hello ladies,

Here is my story:

My husband and I have been married now for nearly two years. I was a virgin until our wedding night and for the first month of our marriage, we had some wonderful sex. However, I then got what they call 'Honeymoon Cystitis', which is a urinary tract infection often caused by more sex than your body is used to. So I was put on antibiotics, which cleared it up. Then, of course, I got thrush because of the antibiotics, so there was further discomfort down there. Got that treated and tried sex (as we had a few times as I was healing) but it was too painful. My theory was that I just wasn't used to it again, and that it was a similar pain to that of our first time. So over the next few months, we kept trying, but it kept hurting.

I went back to the doctors several times, seeing 2 different doctors from the practice. One of them suggested it was caused by vaginal dryness and prescribed me 'Sylk' natural lubricant (very good - I still use this, but rather expensive). While it did help, sex was still painful. The other doctor tested me for another UTI and found nothing, tested me for Chlamydia even, but found nothing. He then tried me on Thrush treatment again, but that didn't help either. So he admitted that he was baffled and rerred me to a gynecologist, after 8 months of painful sex.

I explained everything, and he examined me (ouch). After one or two prods and subsequent yelps, he nodded and said he had finished. Instantly, he diagnosed me with Provoked Vulvodynia. The way he explained it to me was that essentially, the nerve endings of my vulva send the wrong signals to my brain, interpreting any kind of pressure as pain. It is incurable and only vaguely treatable.
The Gynaeocologist suggested that I looked on the internet for treatment ideas, people’s successes and failures and ideas of how to live with it.

I have been lurking here for a long time now, gathering information and ideas. However I feel that I may have been putting this thing off, hoping it might just go away. Of course, that is not how it works.

My sex drive has been very low because of the pain, and I have sensed a lot of frustration from my husband. We have become very open, talking through everything, what works, what doesn't. I am lucky because I am happily married to a very understanding and patient man who is willing to explore this and take time to find out what works.

At the moment, it varies a lot. I have been using coconut oil in all my cooking, as this has been suggested to help, I have been taking ibuprofen before engaging in sex and using Sylk as a lubricant. I have also been washing using Femfresh to prevent harsh chemicals causing imbalance.

So really just plodding along, looking for anything that might help. It has been really getting to me recently, and I think I need to get more proactive with beating this thing.

Thanks for reading,

Finch

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Re: The Shadow in our Marriage

Post  Alana3 on Mon May 20, 2013 12:33 pm

I had provoked.v and was cured by surgery... So that's not true about not being cured. Find a vulvodynia specialist and go from there Smile

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Re: The Shadow in our Marriage

Post  Sarah001 on Mon May 20, 2013 8:42 pm

It's also worth getting your pelvic floor/pelvic alignment looked at, when we get UTIs it makde the pelvic floor spasm with all that painful peeing so it may still be doing just that. Dilators may also help to get the muscles used to having something penetrate them and if used for a few months should soften the muscles up and relax them but it's still worth a visit to a Women's Health Physio to get the muscles evaluated.
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Re: The Shadow in our Marriage

Post  Finch on Tue May 21, 2013 8:25 am

Hi, thanks for replying Smile
I'm thinking of going back to the gynecologist to see if he can refer me to a specialist, unless I can track one down who is relatively local.

I have been reading several of the posts about pelvic floors and pelvic alignment, also the relationship between lower back pain and vvd, as I get frequent lower back pain, have done since I was quite young. There are a couple of local chiropractors I am going to check out, though I will speak to my doctor first.
I've seen so many people saying dialators really help, though it seems really daunting to me. However, that is another thing I can't miss out, so will have a go. Where is the best place to get them from?

Also, where do I begin looking for a Women's Health Physio?

Thanks,

Finch

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Re: The Shadow in our Marriage

Post  Sarah001 on Tue May 21, 2013 5:35 pm

I'm not sure where you're from, if you're in the UK you can ring your local hospitals (almost all of them have a WH physio nowadays) and find out if they have one then ask your GP to refer you. If you're elsewhere then I have no idea! The dilators I have are a basic set of 4 pink plastic ones I bought online, I just googled them and then went for the cheapest. You have the right attitude that you need to do all these bits, the more proactive you are the better the chances of recovery.

If you have low back pain I would strongly suspect a pelvic alignment issue so the chiro is a good idea to assess that but the WH physios are so much more knowledgeable. I know dilators sound a bit scary but you can do them at your own pace and gradually work up to the larger ones plus you can use them to push into the muscles for a bit of a stretch too which is really helpful. Good luck and hold on to that attitude! Let us know how you get on.
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Re: The Shadow in our Marriage

Post  Finch on Wed May 29, 2013 11:39 am

I am from the UK, so I will have a look around for Women's Health Physio and definitely ask my new doctor about them.

I went to see my doctor after about a year (the one that worked with me to get to the point of diagnosis) and he has left, which upset me a lot. I grew to trust him, and he was so patient, understanding and willing to admit when he didn't know, but never left me unsure or with nothing. His replacement is none of these things, saw me and thought I was some teenager sleeping around and fobbed me off to the sexual health clinic with a smirk. I have moved to a closer doctor now.

To be fair though, I may go to the SHC to see if they have any specialists, or could help me find the right services.

Thanks for all your help, you are very kind. Smile I am going to buy some dilators and give it a try.

I will keep updating Smile

Finch

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Re: The Shadow in our Marriage

Post  Sarah001 on Wed May 29, 2013 1:14 pm

I totally understand about the doctor, a female doctor I used to see about my connective tissue disorder left out of the blue and she was the only one with any knowledge of it so I was gutted by that a few months ago. It was a good idea to move to a different doctor if the replacement was awful, I hope you get some answers and don't be afraid to ring the hospitals in your area and talk to the physio departments, I found my physio by doing just that and the receptionist got her to ring me back so I could have a chat with her and see if she knew what to do with me then it was simply a case of getting my GP to refer me so don't worry about giving them a call. If you try dilators on your own take it slow and use plenty of lube to avoid pain. Wink
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Re: The Shadow in our Marriage

Post  Finch on Wed Jun 05, 2013 10:08 pm

Thanks for your reassuring words. Smile

My Amazon order of 'When Sex Hurts' arrived today, and I have read a few pages. It seems really promising, and I know a lot of people on this forum have recommended it, so I am looking forward to learning a thing or two.

Finally have my doctor appointment booked in for Friday, so I will let you know how it goes.
I have come off my Depo (contraceptive) injection, to see if this has any impact. The pain started shortly after I switched to it, so it is an avenue of connection I thought it couldn't hurt to explore. Apparently it could take up to 8 months to get completely out of my system. I am nothing if not patient.

I have also noticed a lot of people talking of links between diet and pain levels. I have been getting really bad indigestion since I was quite young, and I had stomach cramps the other day after a meal, so I am wondering if I suffer from and allergy or intolerance, possibly to lactose. This has also been suggested as a factor in vvd pain, I think? So I will mention this to the dr too.

Anyway will let you know.

Finch

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Referral

Post  Finch on Sun Jul 28, 2013 2:31 pm

Hi everyone, thought I would check in.

I went to my appointment with my new doctor to talk through my PVD and she referred me to the pain management specialists at a local hospital.

I am pleased to have the referral, a little daunted by more examinations, and more people I have to talk to about it all, but I have high hopes that I'm definitely on the right track.

They are general pain management specialists, but I hope they have some ideas and some knowledge of the condition.

Wish me luck!

Finch

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Re: The Shadow in our Marriage

Post  Elc88 on Thu Aug 01, 2013 8:52 pm

When I was first diagnosed, they diagnosed provoked vulvodynia as well. I was told not to use any feminine products like FemFresh, so I'd recommend you get rid! You are washing away any good bacteria that help to protect you down there. Just use plain water, or an emulsifying ointment mixture (go to your local pharmacist and ask, they usually store it behind the counter), which is to act as a bit of a moisturiser (don't use normal moisturisers!)

I'm in the UK too and think there is such a wide difference between the doctors you see, and it's very frustratingly slow on the NHS sometimes! I was originally seen by a specialist in Scotland, and when I moved to England they refused to send my notes on (!) so I had to go through all the tests again. Sexual health clinic can help, but in my experience, they're an in-out lot, and not a long term solution (unless you do test positive for something).

Very interested to read what you say about allergies to food being a possible cause - I am allergic to milk proteins, and can't drink raw milk, though don't have a problem with lactose. I eat cheeses no problem, but get bloated if I eat yogurt for more than a few days in a row. It might be another solution to consider for me!

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Re: The Shadow in our Marriage

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