22 years old, unhappy and miserable

HI MY NAME IS SHAY AND IM A 22 YEAR OLD COLLEGE STUDENT WHO IS MISERABLE AND UNHAPPY BECAUSE FOR THE LAST 8 YEARS I HAVE BEEN BATTLEING HEALTH ISSUES. TO BEGIN I HAVE AT LEAST 15 SURGERIES FOR HYDRANTIUS SUPPRATIVA ( HOPEFULLY SPELLED RIGHT LOL) WHICH HAS CALL ME TO HAVE TO MAJOR SURGERIES IN MY GENITAL AREA THAT HAS LED TO MULITPLE YEAST INFECTIONS, CREAMS, PILLS AND DEPRESSION. I HAVE BEEN TESTED FOR EVERYTHING WITH NO KNOWN CAUSE FOR THE STINGING, ITCHING AND PAIN AFTER RESEARCHING MYSELF I BELIEVE I SUFFER FROM VULVODYNIA AND MAYBE SOMETHING ELSE THAT AFFECTS THE CLITORIS HOOD WHICH SEEMS TO CAUSE ME SOOOOOOOOOOOO MUCH PAIN. I HAVE BEEN WANTING TO POST BUT WAS AFRAID OF DEAD ENDS AND NO SOLUTIONS BECAUSE I HAVE BEEN HOPEFUL AND DISSAPOINTED SO MANY TIMES. I AM ONLY 22 AND CANNOT REMENBER A DAY WHERE I WAS COMPLETELY PAIN FREE DOWN THERE. SO IF YOU GUYS HAVE ANY WORDS OF ENCOURAGEMENT , TREATMENTS AND QUICK FIXES FOR FLARE UPS BECAUSE IM HAVING ONE RIGHT NOW......

PLEASE HELP
CANT KEEP LIVING LIKE THIS

LOVE SHAY

Hi Shay

Sorry to hear about your troubles, there really is nothing worse then vagina related health issues!

Firstly, I hate to say it but there is no quick fix for Vulvodynia, But what I have done has helped me, it took a few weeks to a month and a half to notice improvement, but it has been such a massive improvement, have a look at my thread https://vulvodyniasupport.forumotion.net/t201-what-helped-and-practically-cured-my-vulvodynia

It has details about what helped me (also scroll down for my other reply which goes into further details), my vulvodynia isn't totally cured but I have now mainly totally pain-free days, after having Vulvodynia for about a year, I am SO much better now. I came to this forum to spread the word about the things that helped me, in fact I feel bad for not posting sooner, as for the last few months I have been much better, but it shows I have been enjoying life again! And you will too!

Hang in there, Shay,

Kate xx

Hi Shay and welcome to the forum.

Please dont give up as you can see from Kate's post there is hope for us to gain much pain relief!!

It is a long road of try this and try that and oh dear that didnt work etc etc and can leave you feeling soooo disapointed and fearful that there is no soloution. But there is and there must be a solution as women are getting relief from this. Its just about getting all the info and support you need and seeing what works for you.

As for flare up fixes, if im in a lot of pain I do take co-codermol just to take the edge off but im quite senstive to opiates so the main reason it takes the edge off its because im all drowsy! lol but if the pain is bad then I do what I have to do. I take 15mg co-codermols which do have to be prescribed by a dr. This is just for the bad days and is not a long term fix. Also oddly enough I seemed to get some relief with my last flare up with using nappy cream!! it seemed to soothe my skin.

On flare up days, if you are indoors, wear a long skirt with no underwear so nothing is touching the vulva area. Relax and treat yourself. Eat some chocolate and rent a good movie. Chat to someone with a sympathetic ear..have a cry if you need too. This psychological release does help. I find bad flare ups are only temporary and eventually calm down so keep telling yourself this! "This too shall pass" its my favorite quote

Once you find a long term treatment that gets to work then these flare ups will lessen.

Im going to try the dilators that Kate suggested

Take care and come to us for support when you need it

Sebby
xxx

Hi Shay,

I'm so sorry you have been going through this for so long. I have Generalized Vulvodynia. My pain is all over the Vulva and less so in the Vagina. These are the things that may help you: First get yourself to a pain clinic. The doctors there know how to treat nerve pain. Other ideas:

Put gel packs in the refrigerator to cool them. When using a gel pack on your vulva, put a wet paper towel over the gel pack and apply gently to the Vulva. If you are having burning pain, this will cool down the area and give you some relief. Before i started on meds, i was using this method 6 times a day and i work full time so it got tricky during the day.

Medications can be very helpful. I am on Gabepentin (neurontin) I am on the highest dose 3600 mgs. I did get some relief from about 2000 mgs but i kept on going up in the dose to get more relief. Gabepentin is used frequently for this nerve disorder. It is a anti-convulsant. I then added Lyrica to the mix. Lyrica is used for people who have nerve pain, such as Fibromyalgia. Just adding 100 mgs. made a world of difference for me. I am now on 150 mgs. I also recently started Cymbalta. This medication is used for depression (which i would guess most of us have). I am on 20 mgs. This medication also helps w/ pain. over the past month, i have noticed the least amount of pain ever. Several months ago, i had to stop working out because even 10 minutes of cardio would cause me to have burning pain. Now i am working out regularly and as long as i don't over do it..i can work out w/ no problem.

For sitting, i use a foam cushion (hole in the middle). You can order these online. I always sit on my cushion at work and home. I really can't sit on a chair for more than about 10 minutes w/out feeling my pain come back. I can have sex and don't typically have pain afterward. I'm not a sexual dynamo though.

I do take Vicodin for pain from time to time...especially if i feel the burning start up. I do have burning pain sometimes...but absolutely nothing like the past.

I did start physical therapy, but i stopped. i tried the dilator thing and did not appreciate the pain it brought me. my therapist determined that i did not have much tension within my pelvic walls. i wasn't tensing as I used to because my pain had diminished.

These are the things that did not work:

I had two spinal blocks w/ no results -this is pretty typical from what i hear..but i wouldn't cross it off your list.

If i were you i would not use any creams, lotions or gel. EVERYTHING i put on my vulva stings. i believe all of the creams that i was prescribed for my vulva pain made it worse and made my condition worse.



I know how you feel about not wanting to get your hopes up. I have had my hopes dashed a number of times. But you will find relief. Its worth it to take the journey. You don't have to live like this. I decided i wouldn't give up until i found relief...and i have. It's not perfect but its 90% better

good luck and keep us posted.

Jules

Wow, I just found and joined this site tonight and am so relieved there is another 22 year old dealing with this! Our symptoms aren't exactly the same but I wrote about mine in the My Story section. Basically I have intense burning and rawness upon insertion, burning while peeing, pain during bm's and lower back pain. I can't sit for long periods of time. This is frustrating because I am still a newlywed (married in June of '09), and the first 10 months of our marriage I had no symptoms. Prior to this, I never had problems using tampons or peeing or anything. April of '10 was when it all went downhill.

If it helps, I'm here for you and wish I had an answer for our problems. Take care, Shay. I'm going to try and get on here regularly. :]

thanks everyone

i really appreciate the advice and im currently in bakersfield and will see a specialist on wednesday so hopefully that will lead to some relief and im also currently seeing a physical therapist an will see how that goes but im am having really bad flare ups that include rawness, itching and burning and i need some sort of relief soon because it is taking away from who i am and taking control over my life.

@sara ium also currently a senior and my quarter starts back on the 6th so im am trying to prepare for the stress of school while dealing with this private issues lol ............. heres my email if you wanna chat msporshay@yahoo.com

@jules are there side effects to the pills, if so are there better than the issues of vulvodynia so you deal with it.

@admin what is nappy cream

@kate i will be looking up your post for some solutions i havent tried

I have not had any side effects from my medications. None on gabepentin. i gained a little weight w/ lyrica but, i wasn't working out and was eating and drinking alot. i have sense lost 5 pounds and i am back working out. so can't blame the lyrica. years ago i tried amitriptyline. i did have side effects. i was exhausted and felt like i was in a dream for 2 weeks. i went off that. it was for headaches. i have been very lucky w/ side effects. you may want to ask for a vicodin for the pain. it does help if you can catch it before it gets real bad. also try cool gel packs left in the refrigerator. that cools the area. good luck. i'll send you my e-mail. are you on our facebook page?