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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.

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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


Hello and my story

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Hello and my story

Post  kirsty on Sun Nov 27, 2011 9:12 pm

<long post alert>

Hi all,

I've recently found this forum and wished I'd known about it earlier. Now that I've finally got some kind of diagnosis*, it's amazing how easy it is to find other people with similar experiences, but when I was searching the interwebs prior to plucking up the courage to see a doctor, and prior to finding a doctor that took me seriously, it was nigh impossible to find any plausible explanation other than "it's in your head"...

Now, I'm pretty lucky in that I only have provoked pain (with intercourse), a really supportive boyfriend, and I finally seem to be slowly improving, but it's still a constant battle and it's good to hear that I'm not alone. Hopefully telling people my story will help others reading the forum, and/or myself for letting it out! (it's crazy how much this has defined my life in the past 18 months, yet I haven't spoken to anyone about it other than my boyfriend and various doctors)

I'm 23 and have been in a sexual relationship for a few years now. I can count on one hand the number of times it has not been painful. To begin with I just thought it was to be expected the first few times, and then it didn't get better. The sex never lasted very long back then, so it always limited the length of time of the pain so I could kind of cope. After about 9 months I was beginning to get to the conclusion that I should probably see a doctor, but it wasn't until one time it hurt so bad we had to stop, caused a lot of upset and continued hurting for a few hours after, that I properly made my mind up. I didn't have the guts to see my GP, so I went straight to the local GUM clinic (where I figured they were probably more prepared for embarrassed/upset patients).

The doctor I first saw was very nice, but basically just did the basic GUM clinic package of exam + tests, and looking back now I realise she wasn't taking my complaints of pain at all seriously. During the exam it was so painful that she had to ask if I could cope with her continuing, which I said I could, but came a hair's breadth from screaming at her to stop. At the end of the process she told me I had thrush and put the exam pain down to me being nervous and not relaxing enough. I went away to treat the thrush, despite not having ever had any noticeable symptoms, and unsurprisingly it didn't make any difference. I booked another appointment to chase it up, saw a different doctor, who said "well, if it wasn't the infection then I suspect it's psychological - I'll make you an appointment with a psychosexual therapist". There was a 6 month wait for this, so I allowed her to make the appointment just in case I decided to go ahead with it, but was pretty much decided I would cancel. I spent the next few months convincing myself it was in my head and tying myself in psychological knots. (If it's in my head, why is it? Is it because I was planning to wait until marriage and didn't**? Am I somewhat subconsciously not comfortable in my sexual relationship? Until you know what to search for, you find a lot of stuff online that supports the hypothesis that if it's not an infection, it's in your head.)

Fortunately, around the time I cancelled that appointment, I got a text from the GUM clinic telling me I had a new appointment in the Vulval Clinic. Apparently a doctor was looking through recent patients' notes and had decided I should have been referred on to the Vulval Clinic rather than fobbed off with it being 100% psychological. At the vulval clinic a quick q-tip test gave me the diagnosis of vulvodynia. I was given some local anaesthetic gel and amitriptyline. I was also referred back to the psychosexual therapist for additional advice. Despite my enormous fears of "therapy", I'd definitely recommend Dr McDonald at the Churchill, Oxford for very practical advice that didn't feel at all like therapy (although looking back he did seem to focus on vaginismus, whereas my problem is mainly vulvodynia with a small sprinkling of secondary vaginismus).

Anyway, I've been on ami for about 9 months now (35mg) and it seems to be helping, thought I'm getting pretty annoyed at having my sleeping patterns entirely dictated by a drug. I've never figured out the anaesthetic gel, it's a bit of a mood-killer and just feels weird, but I keep meaning to give it another go. Even though its only recently that penetrative sex has caused any remotely pleasant sensations, it still seems somewhat perverse to anaesthetise yourself for sex.

Essentially, my symptoms have subsided enough that I'm well out of the "feeling rubbish about sex" circle of doom, in which you worry and stress and get upset sufficiently/often enough that you are never relaxed and always expecting pain, which of course makes things worse. There was a point where I didn't think there was a way out of that feedback loop, so for anyone feeling like that, don't worry it can change. However, if I ever dare feel too positive about it all, I just set myself up for disappointment when I discover it still hurts and is not going to be completely gone for a long time.

Thanks for listening, I thought I was on top of my recovery but given the amount of tears writing this caused I'm pretty sure I could do with hanging out here for some supportive company. Just to finish, a few quick questions people may be able to help with:

- Do any of you have recurring thrush that makes things worse? I honestly have no idea what it feels like to have thrush, but my mother has suffered a lot, and apparently I did have it when I first went to the doctor, so it could be still playing a part - but without symptoms I don't really know whether I can do anything about it...

- Any advice for making ami work with sleeping patterns? Recently I've been taking it early in the evening so it doesn't affect my mornings, but I feel like it's just robbing me of evenings instead!

- Dilators. Are they only for vaginismus or worth a try for general vulval pain?

Thanks all,
Kirsty


*I do fell somewhat peeved when the best diagnosis a doctor can offer me (vulvodynia) is nought more than the Latin translation of my symptoms (vulval pain) but it definitely beats being told it's all in your head.

**I can't tell you how glad I am I didn't wait for an awful honeymoon of pain!

kirsty

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Re: Hello and my story

Post  Sarah001 on Mon Nov 28, 2011 11:11 am

Hi Kirsty and welcome to the forum. I've read through your story and it sounds similar to some of the other girls on here. In answer to your questions thrush can set things off and if you suspect you might have thrush take an oral treatment and don't use topical creams in case they make things worse. I'm very disappointed by your GUM clinic I went to one and they were really good but at least you eventually got to a vulval clinic. As for dilators they are particularly useful if it's only pain with sex so that's worth looking into too. I take Ami and take it right before bed but I have to allow 9 hours before I need to get up as it knocks me out for that length of time so that might be worth a try. I don't actually find the Ami helpful though and have continued with it to make me sleep (have Fibro as well) but there are other anti-depressants that don't make you tired if you wanted to change to another one. I would also suggest getting your pelvic floor checked out as that is frequently a problem with VVS and V. A good book to read is When Sex Hurts which goes through all the possible causes of vulvar pain so I'd recommend that too. Heal Pelvic Pain by Amy Stein is another that works on the assumption it's the pelvic floor at fault but I still think women should get their pelvic floors checked first, usually we have very high resting tones and the fast twitch fibres are fine so no stress incontinence but the slow twitch ones are weak and it varies how it's treated, some therapists like to start with kegels to strengthen the muscles so they relax and others relax them first, both methods work for women but it's finding the right one for you. A Women's Health Physio is what you need to sort that side of things out. Also if you haven't already have a look at www.vulvarvestibulitisrelief.com as they have lots of case studies on there to read through plus some articles written by the lady who runs th site and also has VVS. Anyway welcome!
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Re: Hello and my story

Post  ButterflyLiz on Mon Nov 28, 2011 10:10 pm

Hi Kirsty,

Sorry you have to be here but glad you have found us. Your story sounds spookily familiar! It’s good that you are getting proper treatment now and hopefully have left behind the “it’s all in your head” crowd. I know what you mean about getting yourself in psychological knots, this condition’s such a head-screw :-/

As Sarah said, we are all different and there are a whole range of things to try, some things help some people but not others. It’s not very scientific but for now it’s what we gotta do. It seems likely that there may be a range of causes that result in the symptoms of the catch-all term “vulvodynia”. I’m hopeful that in time we will see more research and separate conditions will be identified, with better names.

I didn’t find ami did much for me, afraid I don’t have any words of wisdom about sleeping patterns (I do remember it making me v. tired). All I can suggest is sticking with it to see if it fades away. Eventually you have to weigh up the side effects with the benefits, as with all meds.

The one that really helps me is lyrica (pregabalin) – bizarrely it was originally for epilepsy.

Bear in mind the physio stuff, too. I pretty much dismissed it to start with but wish I hadn’t know as I’m having some success with it.

I’m sure thrush has played a role in my pain to one degree or another, but it’s difficult to be sure because I’m never entirely sure if it’s thrush or if I’m just having a flare up! I have had positive tests at times, but at other times they’ve been negative, even when diflucan has subsequently helped. I don’t think there’s an easy way to tell, I’ve read that microscopy is only 40% accurate, and my consultant said the thrush tests done at GPs don’t always pick it up. So it’s all a bit confusing. The anti-yeast diet did seem to help but I could only stick at it for a month… Like Sarah said, try an oral treatment (diflucan), and see if it helps.

Dilators can be a help, for massaging out internal trigger points and getting used to having something “in there” at your own pace etc. They’re quite expensive though, I managed to get some free from my physio a few years ago.

Yikes sorry this has turned into a marathon post. I just remember how I felt when I was newly diagnosed. Doesn't help that nobody really talks about this kind of thing does it. It will take time to come to terms with emotionally as well, just try and be gentle with yourself and not beat yourself up about it. Relaxation techniques can help a lot as well as helping the pain.

Better leave it there for now, happy to chat and answer questions if I can.

Liz
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Re: Hello and my story

Post  kirsty on Tue Nov 29, 2011 7:40 pm

Thanks both,

I think I can get some dilators from the doctor on my next appointment - from my previous reading around the topic I had thought they were only really appropriate for straight-out vaginismus, so I hadn't been particularly interested.

The psychosexual therapist guy did focus on pelvic floor muscle control, but more from the point of view of muscular control during sex rather than physio exercises. It sounded really helpful until I tried it out and realised it just didn't quite work with the positions we've figured out (and using new positions is like starting from scratch with the pain..).

Sarah - I'll check out those books; thanks.

kirsty

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Re: Hello and my story

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