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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 …

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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, …

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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 …

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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 …

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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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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

Comments: 9

Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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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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