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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 3

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

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 …

Comments: 6

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 3

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: 10

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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PAIN FREE - VESTIBULODYNIA IN REMISSION

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PAIN FREE - VESTIBULODYNIA IN REMISSION

Post  A2015 on Mon Aug 29, 2016 5:52 pm

Hello all,

I've waited some time before writing this post in confidence, to say that my pain really is gone - I hadn't wanted to jinx it or give anyone false hope.

I have had Localised Provoked Vestibulodynia twice now (pain concentrated to the vestibule, sharp stinging/burning on touch, felt in everyday life wearing clothes/sitting/walking in positions when any pressure applied to my inner vulva).

I'll recap my experience (as written in my previous posts on this forum) as it may be useful for anyone to identify any similarities of causes & symptoms.

I first had Vestibulodynia for 1.5 years (age 18-19) when I was on the contraceptive pill (Microgynon), triggered by a fungal & bacterial infection (treated, but I was left with constant redness & pain of my vestibule). I was in a relationship with a very supportive boyfriend, but began to forget what it was like to have pain free sex, it was awful. I also experienced frequent vaginal infections and fissures/swelling when I had sex. I eventually took myself off the pill (though all doctors said it was nothing to do with my unexplained pain) and about a month later, I was pain free. I couldn't believe a pain which felt so permanent had completely resolved and I was back to normal. A very happy time.  

Last February 2015 (age 22), I developed a fungal and bacterial infection. I hadn't had one for a long time and was very afraid my vestibule pain would resurface once the infections were treated - and it did. This time I wasn't on any hormonal contraception, so didn't have this to come off! The pain was back to how it was age 18.

I saw many sexual health practitioners, gynaecologists and vulval dermatologists (both nhs and privately). The treatments I tried were:
- Diflucan (for initial yeast infection)
- Several different antibiotics (all of which caused more vulval burning when taking)
- Frequent application of 5% lidocaine (very very limited temporary relief)
- Steroid cream (used for a very short time as not commonly used for vulvodynia & often not advisable)
- Anti-candida diet for a few months (in case the route of the pain could have been a undetectable continual yeast issue)
- Regularly taking probiotics orally & tried inserting vaginally also
- Physio using dilators (I believe more suited to anyone experiencing internal muscle pain, for me this wasn't helpful)
- Hydrocortisone cream (used sparingly, no effect)
- RePhresh gel & BalanceActiv gel (cold gel was relieving but no effect on vestibule tissue pain)
- Coconut oil
- Vitamin E oil
- Washing with only water, wearing cotton underwear, avoiding any perfumed products
- I resisted the option of a low dose of Amitriptyline as I wanted to try everything else before going down this route.

My pain consumed my every day thoughts and ability to enjoy life as I used to. I constantly felt so low and cried almost daily. I couldn't bare to talk about sex with friends because I couldn't envisage how I would experience it again like I once did, I feared how this condition would affect my future intimacy. Most of all, I felt completely isolated as we all know it isn't a condition you can speak about openly, so my experience & feelings with this condition were mostly hidden. And those who I did discuss what I was going through with (parents included), couldn't grasp at all how distressing this condition really is. Doctors diminished my symptoms & concerns, and frequently patronised my research, whilst not offering any real knowledge of the condition.

I attended a few of the Vulval Pain Society Group meetings, which I believe are invaluably helpful. I met women of all ages who knew how I felt, and I felt far more supported just being able to discuss options for treatment here.

In December last year, I met someone who I really liked. I had really feared meeting someone new, not knowing how to handle this condition, but I felt so at ease with him that very early on I explained the basics of my condition and that there were various treatments to try, so asked that he could be patient when it comes to sex. He was completely understanding (though of course not fully aware of the extent of this condition) and I felt able to try things slowly, knowing he would stop if I had to. Over the next few months, I tried sometimes with lidocaine and other times without. This is where I can't give any concrete explanation to how my pain literally just slowly started to dissipate. I can only put it down to a ton of positive happy energy I felt being with this person, that I just didn't let my immense fear of vulvodynia affect me like it had. Before I met him, I had had several physio appointments all of which were incredibly painful and I could no longer use tampons when I had my period, so the concept of sex had been completely absurd. But I just slowly let myself try it and eventually, I felt less and less pain to the point where I didn't have any at all.
I believe that the symptoms of Vestibulodynia that I experienced are the nerves being aggravated. I think this, for some women (like me), can be triggered by hormonal changes caused by contraception or a vaginal infection. The nerves just don't calm down like they should after the infection is treated. For some reason, after months and months of pain, my nerves felt able to calm down and I do believe this recovery was triggered by my state of mind (however I would never say this condition is psychological! I had very real & visible symptoms, but I think they were increased by stress & anxiety, and thus diminished by my feeling of happiness & positivity).

Now, 8 months later, I'm no longer with this boyfriend, but I am still pain free. I've slept with other people since and still have no problems at all. I feel unbelievably grateful every single day I have with no pain.

I recently had a 6 month follow-up appointment with my vulval dermatologist. I was over the moon to share that I no longer have pain so didn't feel I needed to be examined. However, because of what I have been through and reading so many similar cases on this forum, I want to stay active in reading up on any research or progress about this condition.  

Interestingly, after having to fight to be heard and mostly just disregarded by doctors frequently about how the pill had initially caused this condition for me (my recovery was so immediately & directly correlated to coming off the pill) - my dermatologist told me that some new research has been done (finally) which recognises there is indeed a link. It's still initial stages but I hope this research will only continue, so medical professionals are more trained to treat this condition, particularly the hormonal causes which can so easily be avoided.

Apologies for my essay of a post(!) but I promised myself if I ever felt relief from this awful condition that I would share positive news to bring hope to anyone fearing (like I did) that they will never feel "normal" again. The nature of my symptoms (feeling permanent), combined with the limited knowledge of several specialists I visited, meant I could not see how things could ever change, I just felt despair. But I am back to my normal self, pain free. I can't believe I'm able to write this now after being in such a bad place, so it really really can happen. Don't give up!

Sending support to everyone here x

EDIT: I've just added to the list of treatments I tried, as I've remembered more I had missed off! Also wanted to write that I believe that, like many of us here I imagine, I was so desperate to feel I was actively doing something to make some progress at fixing this condition that I wanted to throw medication at the issue. But as a few recent posts on this forum suggest, from other women who's symptoms have now relieved, I think throwing lotions & potions at the problem can actually exacerbate it. Leaving my body to eventually resolve it for itself was what let it recover. I know this isn't always successful in all cases, but I think it's worth trying.

Best,
A2015


Last edited by A2015 on Wed Sep 14, 2016 11:56 pm; edited 1 time in total

A2015

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Re: PAIN FREE - VESTIBULODYNIA IN REMISSION

Post  PainBlogger on Mon Aug 29, 2016 8:20 pm

That's really great to hear. I hope you continue to live pain-free and thanks for posting your success story. Smile

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Re: PAIN FREE - VESTIBULODYNIA IN REMISSION

Post  lindsey_taylor on Mon Aug 29, 2016 11:22 pm

I'm so glad you are in recovery! My doctors are very adamant that my issue is not my contraceptive pill, but the more I read about it, the more wary I am. I was on birth control for years before this started, though, so I don't know. Sad How long were you on birth control and when did you start to feel better once you stopped it?

Again... I am so glad to hear this positive story! Thank you for sharing!

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Re: PAIN FREE - VESTIBULODYNIA IN REMISSION

Post  A2015 on Thu Sep 15, 2016 12:04 am

Thank you both PainBlogger and lindsay_taylor for your replies.

Lindsay_taylor, when I was on the pill for 1.5 years, I had Vestibulodynia for the exact time I was on it. For me it was very much a clear cause & effect. I started to feel better about a month after coming off it. But have a look into this forum as I remember reading a few posts of women who were on it for a while with no problems, then developed this condition, and coming off the pill still led them to recovery.
Also, after my second wave of this condition reappearing last year (without the pill), I have still managed to make a full recovery. So really don't lose hope if coming off the pill isn't a quick fix (I was so fearful last year that I had no chance of recovery, so I can't stress this enough!).
You're right to be wary, and this forum is a brilliant resource. ALL of my doctors (and gosh I visited a lot) denied the pill having a role. It was music to my ears (albeit rather frustrating at this point down the line!) to hear my current vulval dermatologist accept that there is indeed a link being made (in recent research). Me & several women on this forum pinpointing the pill as the culprit isn't enough to be heard by the medical profession!

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Re: PAIN FREE - VESTIBULODYNIA IN REMISSION

Post  lindsey_taylor on Thu Sep 15, 2016 12:56 am

Thank you so much A2015. I am seriously considering stopping my birth control. May I ask if you had to use any treatments during your second flare up?

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Re: PAIN FREE - VESTIBULODYNIA IN REMISSION

Post  A2015 on Fri Sep 16, 2016 12:09 am

Hello,
During my second flare up (lasting 9 months of last year), I tried the several treatments listed in my first post of this thread, as I didn't have anything hormonal to come off this time. These treatments I tried didn't personally have any effect on my Vestibulodynia (though for some women on this forum they have, so don't disregard them). I found that leaving my body without throwing treatments at the area, allowed it to heal. I can't stress enough how bad my Vestibule pain was & how impossible that was to envisage at the time!
Do try coming off the pill. If the pain is stopping you from having sex, it isn't serving it's original purpose at the moment!
Best,
A2015

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Re: PAIN FREE - VESTIBULODYNIA IN REMISSION

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