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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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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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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 …

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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 …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 6


CURED - my story

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CURED - my story

Post  palaisland on Mon May 20, 2013 12:58 pm

WHAT REALLY HELPED ME!!!

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  Sarah001 on Mon May 20, 2013 8:38 pm

Thanks for sharing, I'm currently battling a loose misaligned pelvis and it's always good to hear of others it's worked for. In my case a connective tissue disorder is making it damn near impossible to get my pelvis to stay put long enough to release any muscles but I'm still working on it. I agree that the stretches in the book mentioned need to be tailored to the individual and often, as in my case, one side is doing the opposite of the other and needs treating accordingly or the imbalances will never resolve. Good to hear you feel so well and long may it continue for you.
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Re: CURED - my story

Post  tinkerbelle2 on Mon Oct 28, 2013 9:08 am

Just read your story, palaisland thanks for sharing! Are you still feeling pain free now?
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Re: CURED - my story

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