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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 …

Comments: 0


CURED - my story

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CURED - my story

Post  palaisland on Mon May 20, 2013 12:57 pm

Hello,

Just wanted to write and say that I too have had almost complete success in treating vulvodynia. Sorry, this is a very very long post... but please take the time to read it, it might help you!! After 3 years of hell I have found a way of managing my pain, and learned a lot about my body in the process. I know how awful the condition is, and really want to help:

I had been suffering from provoked vulvodynia for three years, since age 17. It was ruining my life. I had pain-free sex for a year prior to this, and then after a minor back accident I started experiencing symptoms of nerve damage, such as spasming down my left leg and muscle contractions. Eventually this manifested itself into excrutiating vaginal and clitoral pain, and about a year after the vaginal pain began I started getting stinging bladder pain every time I urinated, which gradually got worse and worse. I would also be in pain at least three days after attempting to have sex - it would feel like I had been kicked repeatedly in the abdomen. I think because of my age doctors were even more reluctant to admit that I had a problem - I was told on many occassions that the pain was all in my head and that 'I just needed to have more sex'. Over the course of those three years I sunk into quite a depression, and was no longer confident about my sexuality. I viewed all men as predators, and was not able to experience the kind of life most of my friends were experiencing. University was horrible because I felt like I was the odd one out, who was in too much pain to date boys. And I used to internalise my pain as if it were a huge dark secret... I was too embarrassed to tell anybody, except a few close friends back home, and my mum. I was very lucky to have my mum's support - I would urge anybody who has this condition to speak to someone close about it, because it is too much of a burden to carry around on your own. There were times when I felt utterly hopeless and lonely and considered taking my own life - I don't know what I would have done without support from the people around me.

Anyway, I tried all the usual things... estrogen cream, amitryptaline, gabapentin, acupuncture, a low oxalate diet etc. Nothing worked. I decided to see a chiropractor who specialised in pelvic pain that I had come across online, and she told me that my pelvis was severely misaligned, (due to my posture, my skeletal structure from birth and the minor back accident I had) and that this was probably affecting a nerve that supplied my genitals. She also suggested that I might have a tight piriformis muscle, which is the muscle that the pudendal (genital) nerve runs through - and this might be damaging the nerve. My left foot stuck out to one side when I was lying down, and this suggested piriformis syndrome. I had quite a few (expensive) sessions with her, but every week my pelvis would slip back into its old misaligned position because my core muscles were not strong enough to hold it in place, and the harsh chiropractic technique seemed to aggravate the nerve rather than help it - I was having bad flare-ups where my muscles would spasm a lot and pain would shoot down from my lower back into my left hip, down to my knee, my big toe... The sexual pain did not improve either - it was still literally extrutiating to attempt sex or any kind of sexual contact, and unfortunately I had no understanding partner who I could practice with -not many boys in their late teens would stick around with someone with my issues, I thought. If I got interest from a boy I would always push them away, and completely ignore my own feelings in the process. Sex became so scary and I not only worried about pain but also my own inexperience from all that time I was forced to be celebate.

After much pursuasion and a long time to-ing and fro-ing from surgery to hospital clinic I managed to convince a reluctant dermatologist ( - who told me that she had been seeing women with my condition for 40 yrs, and had not managed to cure one of them - she also told me that my pain was 'probably all psychological' -) to refer me to a neurologist. The neurologist carried out an EMG test on my back and yes - I did have a trapped nerve in the lumbar region of my spine. The neurologist said that this nerve could also be affecting the nerve that supplies the genitals, the pudendal nerve - so I am due for another EMG to find out if this is the case in about a weeks time.

Six weeks ago, despairing because my pain was still very bad and I had tried and failed at everything the doctors had suggested, I went to see a physical therapist. The man I see broke his back in a motorbike accident in his twenties and was told by doctors he would never walk again. He is now in his fifties and super fit. He trains many people and has a great knowledge of the human body.

I told him my symptoms and he agreed that a tight piriformis muscle might be constricting the pudendal nerve. After doing some stretches she identified that I did indeed have piriformis syndrome. Over the last six weeks he has been giving me a course of exercises to stretch out the piriformis muscle and realign my crooked pelvis, and I do stretches similar to those described in Amy Stein's book (I do have a copy of the book, but I think it was very important for me to be told exactly how to do these stretches properly, so as not to do more damage than good - I am also very lazy and it helps me to stay motivated seeing a personal trainer once a week. I think also, each body is different, and it is important to tailor your regime to suit your needs) and in that short time, I have completely eliminated my muscle spasms, I no longer have back pain that radiates into my leg and foot, and my bladder pain has disappeared. My vulval pain, that was at an 8.5 - 9 out of ten, is now at a 1 - 2. I am hoping this will continue to get better - I am also trying meditation in order to dispell any anticipated pain that my brain might be holding on to. Seeing a physical therapist is quite expensive but 100% worth it. Once I learn to do these exercises properly and integrate them into my daily regime, I will have them for life, and will no longer need to see the therapist.

In order to maintain this pain free life I have to do the stretches and exercises for at least half an hour every day. In modern life we are forced to sit at desks and slump in chairs a lot and this is so bad for our posture - it is amazing what stretching out the core muscles can do. Through exercise I have effectively cured my tight muscles and piriformis syndrome which were pressing down on a nerve. It is important that we have strong supportive core muscles before we can work on the superficial muscles, because it is the ones deep down that stabalize everything and make sure we do not get musculo-skeletal problems.

Having to deal with vulvodynia has completely changed me as a person. In a warped way it has actually benefitted me in that I was forced to examine myself as a person rather than just a sexual object - I used to play on my sexuality a lot, and having this condition has really taught me to not rely on these assets, and instead develop a strong character and personality that makes me valuable for more than just my physicality. Sorry if this sounds cheesy, and I'm not trying to peddle dime-store feminism or anything, but it's true! I couldn't rely on male attention for my self esteem anymore so I had to find it elsewhere, through developing hobbies and exploring more Buddhist ideas and accepting the bad things that happened to me.I have also got more male friends now, because I have been able to develop strong friendships without any sexual agenda. I am starting to speak up about my condition. I have told two close male friends and both have been sympathetic, and not treated me any differently. Any man that is seriously going to judge you for this is not worth your time of day.

For those of you in England, the Vulval Pain Society puts on some very inspiring talks about managing pain. I was so nervous about going to a talk but it made me feel optimistic. Many of the speakers are women who have managed to cure themselves though things like hypnosis and meditation. David Nunns, the head of VPS, also speaks, and gives a lot of valuable information about how to navigate the heath system with a condition that a lot of so-called 'health professionals' are completely ignorant about. The best thing about the day was meeting many women and their partners with the same issues as me. Vulvodynia is a very isolating condition and it is so comforting but also saddening to know that I am not alone, and there are many other women experiencing the same things as me. There were women of all ages at the talk - at least five women were in their early twenties like me, which was reassuring.

The last thing I will say is that I know from experience that the worst thing to do when you are feeling depressed about this awful condition is spend hours trawling the internet reading about people's experiences - most people that post online about this choose to be negative, sadly. This is not beneficial for the person writing the negative post, or the person reading it. I think as we are all going through this together we have a responsibility to try and offer helpful and encouraging advice to each other.

In the next few weeks I am going to try a method for neuropathy called Body Stress Release. It is supposed to be beneficial for vulvodynia - you can find out about it onine. The pudendal neuralgia EMG test is very scary and invasive but hopefully it will give me even more answers when I have it. I wish you all the best of luck and hope that many of you will turn to exercise as a means of curing your pain. Thank you for reading this! There is always hope for the future no matter how desolate things seem now.

palaisland

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Re: CURED - my story

Post  Katiej on Tue Jan 09, 2018 10:44 am

How are u doing now 5 years on. Would be beneficial to know if u are okay now. For people reading posts worrying. Ppl should come back to tell the tail

Katiej

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