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» What helped (and practically cured) my Vulvodynia
Today at 4:43 pm by Katiej

» How I cured my Vulvodynia!
Today at 8:24 am by Katiej

» Amitriptyline given for vulvodyina pain
Sat Nov 18, 2017 11:33 pm by WVR00

» Needing some reassurance
Sat Nov 18, 2017 12:28 pm by Katiej

» Amitriptyline Success and new-found love
Sat Nov 18, 2017 12:24 pm by Katiej

» New diagnosis, any advice whilst I wait for a specialist
Sat Nov 18, 2017 3:57 am by jungleclover

» Vestibulectomy today and no pain
Fri Nov 17, 2017 3:28 pm by Dsrt16

» vestibulectomy success
Thu Nov 16, 2017 12:41 am by Hopeitworks

» MY STORY & Vestibulectomy 2/8/17
Thu Nov 16, 2017 12:06 am by Jgreen81

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, …

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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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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 4

Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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My experience with VVS. Insight would be truly appreciated!

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My experience with VVS. Insight would be truly appreciated!

Post  skippypie23 on Tue Nov 29, 2011 8:28 pm

Hello there. Before telling my own story, I just wanted to say that I am so thankful that someone created this forum, and I admire the strength you each show in your every day lives dealing with this horrible condition. Thank you for sharing your experience; it helps so much.

I'm hoping you can provide some insight. I have not been able to get ANY answers from doctors; I have just been able to rely on my own research. I have no idea why I got this, and what caused it so that I can make it go away.

I'm 22 and from Greece. I actually diagnosed myself with VVS after intense research this past summer.
Thing is, the pain started when I was 18. I went to countless doctors over the past years, took countless medications (usually to treat yeast, which sometimes wasn't even there) and never even got a diagnosis. Doctors here don't even know what VVS is. It's incredibly frustrating.

I don't know how this happened, because the VVS wasn't present at the beginning of my sex life. However, at some point i was diagnosed with HPV (it was harmless and apparently has vanished from my system now) so I'm wondering if it has any association. I have also been on the pill since 16 and was wondering if it's worth getting off it? Is there also any way that it could be an allergic reaction to my boyfriend? It started about a year after we started dating.

The VVS just keeps getting worse. I get tiny sores at times (i think they appear during yeast infections) and now my skin sometimes tears during sex. It's usually in the same spot and i find a tiny bit of blood after. My skin feels like it's rough and dry, but lubrication isn't really a problem so I can't understand why the skin is in such terrible shape.

As I'm sure you all understand, this condition has stripped me of all confidence. I usually burst out in tears after sex (an sometimes during Sad ) I don't know if I should just stop trying to have sex for a while. My boyfriend is very loving, but I can't help but be terrified that he will get sick of this. And I have no idea how dating would be possible with this in the first place. I don't know if my boyfriend would be with me, had he met me with this condition.

I've tried so many things. Organic soaps, detergents and pads. This one Neocutis cream a gyno prescribed (it's for wrinkles i don't know why the hell he prescribed it cause it did nothing). Vitamin E oil didn't help either. I tried an oil that contains A and E vitamins and has a little lavender oil in it and it's so odd: it worked perfectly (i applied it before sex) for the first few times. Then the pain came back, sharp as ever. I still can't understand why it happened to work at first.

Right now, I'm just going to try out ingesting and applying coconut oil. I read a post here saying that it helped, and it does fight off yeast, which is something I deal with fairly often. I am also considering ordering that Neogyn cream. I honestly have no idea what to do. I hate hoping and expecting things to change every time I try something new.

I don't think we should have to deal with this or accept this as a part of our lives. I'm sure there's a solution out there.
I wish you all the best, and I pray that we can all get through this soon.

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Re: My experience with VVS. Insight would be truly appreciated!

Post  mars215 on Tue Nov 29, 2011 9:09 pm

Hi Skippypie,

Thank you for sharing your story. I also have VVS, along with IC and Pelvic Floor Dysfunction. I'm 24, and am in a serious relationship... so I can kind of relate to being scared that my boyfriend will get sick of this. We haven't had sex in months, and I get very insecure at times even though he says he doesn't mind. The first time I found out about my VVS was at a urologist appointment a few months ago. I came in for IC, and when she examined me, she found that I also had vulvodynia. Don't you love surprises? I have been able to make lifestyle changes for my IC, but dealing and accepting VVS is another issue. I keep telling myself that having VVS does not change who I am... or make me any less of a person... but I still have bad days when my self-esteem is super low. It's hard to feel confident when your girly parts are on fire Shocked

Have you tried going on a low-oxalate diet? I've found that it has reduced my symptoms greatly. Also, taking fish oil (some say it reduces inflammation), and wearing loose clothing. I also drink a lot of herbal tea in the morning, like peppermint or chamomile. I was on the pill, but recently got off it because it made me flare whenever I swallowed one. Yoga, the restorative/meditative kind has helped me relax my muscles down there and be more flexible... so that's another thought...

Whenever I have a bad flare, I try to stop what I'm doing, put on loose clothes, and lie down. I know this isn't the most feasible thing to do... and it is pretty disruptive... but it does help. I hope you find ways to ease your symptoms. I find that I have the worst flares from being stressed/anxious, sitting for long periods of time, wearing tight pants, and eating certain foods (haven't tried to have sex in a while, but I figure that would give me a flare too). Have you written down what makes you flare? It might help to identify your triggers, as well as things that make you feel better...

Praying for the best,
Mars

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Re: My experience with VVS. Insight would be truly appreciated!

Post  ButterflyLiz on Tue Nov 29, 2011 9:30 pm

Hi Skippy, and welcome. It sounds like you’ve had a frustrating time with hopeless doctors, really sorry to hear that. Understanding of this condition is improving but not quickly enough. There are definitely things you can try without the aid of a doctor but then again you won’t be able to try drugs that may help without a prescription. The big ones known at the moment are tri-cyclic antidepressants such as amitryptiline and anti-epileptics such as gabapentin & pregabalin – either category may have an impact on your pain. With this condition you really have to fight to be heard. If you have to, print off your research, photocopy pages from books and take them to your doctor / local sexual health centre and ask them to prescribe any treatments you think might help you.

I sympathise with the hoping and expectation of something new, then the let down when it doesn’t help 

Take a look at this website for details of physiotherapy exercises you can do yourself to help your pelvic floor muscles relax. They may be involved in your pain more than you think. I’m currently going through these exercises with a physiotherapist and starting to see a reduction in pain. It makes sense – if the muscles are tensed up all the time, circulation to the area gets cut off and things can’t heal properly. Just trying to think of things you can try without the aid of doctors. Happy to answer any questions on the physio if I can.

Oh and read as much of this forum as you can, you’ll find all kinds of things that have helped different women. They won’t all necessarily help you, of course, but it helps to realise that you have options left to try.

Liz x
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Re: My experience with VVS. Insight would be truly appreciated!

Post  ButterflyLiz on Tue Nov 29, 2011 9:31 pm

Oops forgot the physio link sorry - http://www.pelvicphysiotherapy.com/
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Re: My experience with VVS. Insight would be truly appreciated!

Post  skippypie23 on Tue Nov 29, 2011 10:14 pm

Thank you Liz Smile
I'm actually trying a stretch recommended in a post on this forum for stretching the pelvic muscles. The link you sent me is very interesting, I'm definitely going to try these exercises. I'm so glad they are helping you; even if it's a slight improvement it's still an improvement!

I'm a little hesitant to start antidepressants, although I wouldn't be opposed to taking them as a last resort. Do you know if Zoloft would help? I was on it for a few years and then stopped it, before the VVS started getting bad though.

Thanks again, I hope you keep improving!


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Re: My experience with VVS. Insight would be truly appreciated!

Post  ButterflyLiz on Sun Dec 04, 2011 8:36 pm

Hmm, as far as I can see, Zoloft is an SSRI rather than a tri-cyclic, and it’s the TCs that help in nerve pain. To be honest, anti-depressants did nothing for my pain, but I they do seem to help a lot of women so deffo worth trying if you can get hold of them and stand the side-effects.

xx
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Re: My experience with VVS. Insight would be truly appreciated!

Post  ButterflyLiz on Sun Dec 04, 2011 8:38 pm

By the way, if you want to learn more about the muscles / physio stuff, get hold of a book called "Heal Pelvic Pain" by Amy Stein. A lot of what my physio is teaching me is in there, too, and it helps to have it written down so I can refer to it.
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Re: My experience with VVS. Insight would be truly appreciated!

Post  skippypie23 on Sat Dec 10, 2011 6:03 pm

Thank you again for the info, Liz! I keep feeling like my VVS is a skin issue but it may be worth checking out that book. Also I've been reading that TC's induce weight gain? I don't know if it would be a good idea to try those as I have struggled with eating disorders in the past (I'm a mess, I know).




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Thank you Mars

Post  skippypie23 on Sat Dec 10, 2011 6:18 pm

Mars,
Thank you for your reply Smile I can completely relate to the issue of low confidence. This kind of strips you of your sexuality as a woman, I feel. Not so good, but we should try to fight that feeling and believe that this will pass.

As I mentioned above, I have not been diagnosed since NO doctor here (in Greece) or in the United States has helped me. They kept treating me for yeast infections, which I didn't always have. Based on research I have had to diagnose myself with VVS. I have no idea what else could be the issue.

I have tried the low oxalate diet, and it didn't do much to help. What I have noticed though is that sometimes when I eat desert I feel like I have little cuts down there, or it feels like it causes a yeast infection. So i've stopped refined sugars in hope that it will help. I still try to have sex as it is usually the only way for me to monitor my progress. Sex is usually the only thing that triggers the intense pain.

Does the herbal tea do something to help? I drink a lot of green tea but i don't think that's the same. And I've been trying to consume coconut oil and apply it on my skin in hopes that it will somehow heal my skin. I've read that some women have been healed by coconut oil and I'm all for natural cures.

Do you know why the pill caused your flares? Have you noticed any improvement since you stopped it?

I'm glad you're finding that yoga helps you Smile I think it's beneficial in so many ways. Especially stress relief; which, let's face it, we need.

I'm sure we will find a cure, we just have to try to stay positive as difficult as it may be at times.


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Re: My experience with VVS. Insight would be truly appreciated!

Post  ButterflyLiz on Sun Dec 11, 2011 8:29 pm

Hi again. I know what you mean – it seems like it should be a skin problem because the pain is felt on the skin. In some cases of course it might be, but I’m sure mine is not. I think if it was a 100% skin problem, there would be something obviously wrong when you look at it, and it would probably respond to topical treatments. I don’t know though, these are just my assumptions.

When I was first sent for physio I must admit I thought “how’s this going to help?” but when you start to look at all parts of yourself as being interconnected it does make sense. Say for example a muscle is pressing on a nerve. The muscle won’t hurt – the pain will be present wherever that nerve ends up instead (eg if it’s the pudendal nerve, that’s the vulva) and relaxing that muscle will help. Do you have pain all the time or just on touch? I think physio may be more beneficial in pain reduction for women with pain all the time, but learning to consciously relax the pelvic floor is probably good for everyone.

I’m not sure about TCs and weight gain, I’m afraid. It’s not something I experienced with them but I’m not very prone to weight gain in the first instance. Unhelpful, I know.

If yeast is an issue (it is for me), have you tried the anti-yeast diet? It’s not really endorsed by the scientific community but I tried it anyway and it did seem to help. However, I only managed to stick at it for a month (I do so like my sweet treats). Am thinking of trying it again at some point (the books I read on it are called “the yeast connection” and “candida albicans”).

Oh and by the way you’re not a mess, you’re an amazingly strong woman.

Take care x
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Re: My experience with VVS. Insight would be truly appreciated!

Post  skippypie23 on Sun Dec 11, 2011 9:19 pm

I can understand how the nerve endings must be an issue, but somehow I think it's linked to repeated yeast infections. Another reason I'm a little hesitant towards physiotherapy is that if I went to a practitioner here about my V, they would probably look at me like I'm a martian. Seriously, Greece seems like the worst place to have V right now lol.
I actually found a link someone posted here that made a lot of sense:
http://www.empowher.com/yeast-infection/content/dr-marjorie-crandall-yeast-infections-candida-allergy-and-vulvodynia

My pain is mainly upon contact (VVS) but at other times it feels like an infection eating away at my skin- even when my pap smears come up clear.

The yeast diet is something I will seriously consider after speaking to a nutritionist; I adore sweets too Sad So far I've eliminated as much sugar as possible, but it's often hard to avoid in various foods. Honestly, I would do anything to get rid of this.

I've also been researching vaginismus; I know my muscles tense up involuntarily before/during sex sometimes, although i don't know if it could be a cause since it's not always.

On a happy note, today after my boyfriend became irritated with my pain upon attempted intercourse (again), I didn't get depressed or feel incompetent as I usually do. All I focused on was my determination to get over this little curse, and I'm tired of feeling dependent on someone because of the insecurity the Vulvodynia has created.

It is so hard, but we shouldn't let this define us. It is too easy to be consumed by it, but there is a solution out there for each of us. It doesn't make sense that cures have been found for serious diseases and not for this.

All my love and blessings; you are a wonderfully strong woman yourself Smile

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Re: My experience with VVS. Insight would be truly appreciated!

Post  ButterflyLiz on Sun Dec 11, 2011 10:10 pm

Aw, thank you Smile

It is just so unacceptable that there are still places where this isn’t even a recognised condition. We could be doing better here in the UK but specialists are popping up here and there – it might take a while to get to see them but they are there. I can’t imagine not even having that. I was at a day-long vulvodynia conference yesterday (will do a full post about it at some point) and got chatting to a vulvodynia sufferer who had lived in Japan for two years. She told me that at one point she paid £200 to see a female gynae over there only to be told simply that nothing was wrong with her, despite taking in her reports from doctors in the UK, because it’s just not recognised over there. It’s beyond absurd.

That link is really interesting. I’ve long suspected that my v is a double whammy of recurrent yeast & nerve problems. Sometimes my swabs are positive for yeast, sometimes negative, but a diflucan tablet always seems to clear it up…for a while. Also I tend to get a sort of muscle achiness at the times I suspect yeast, which would make sense according to that article. If I try the diet again I’ll start a new topic & we can all share the recipes we’ve found for the yeast free diet, cos my biggest problem was finding enough to eat! Maybe in the new year though, after all the Christmas chocolates have gone Smile

Another interesting thing I learnt at the conference was about a recent research study done on mice. Basically, they gave them vaginal yeast infections (poor mice) which they treated, three times in a row, and after that some of them developed the symptoms of vulvodynia even though the yeast infection was gone. Their skin also showed the same increased nerve fibres that ours tend to have. Fascinating stuff. (link: http://www.painresearchforum.org/news/9563-mice-demystify-perplexing-pain)

I’m glad to hear you’re holding your head up and are determined to get through this. It takes a lot of energy doesn’t it! But it helps knowing you’re not alone.

Take care of yourself, Liz x
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