Just diagnosed...will my life come back...

Hello everyone
Just been diagnosed with the wicked vulvodynia. I had pain now for 1 year...burning urethra...went through all the hoops from cystoscopy to name it they looked and had all the test done...
Im in a BIG flare up right now..had to stop work, exausted from being in pain 24\7.. will the flare go away or do I have to live with this forever....I started gabapentin today only at 1800g a day and will increase to max dose in a few weeks..cant take elavil (intolerent to)....My morning are not bad...If I stay on the couch all day I'll have a good day....as soon as I do a bit or walking ouch its bad...
all I want is a normal litte life back..I dont want to run marathon or climb everest....just a normal walk in the park...
Will I get there..anyone...
I use lydocaine and sometimes vaseline or zincofax for barrier....I use unscented soaps,white cotton underwear,dont drink coffee....By the way can I drink DECAF...is it ok...anyone answer please.
I'm depress and sometimes I cant see myself living like this forever,
If anyone has any helpfull hints on what i can do and what I shouldnt do please let me know. Im desperate...

Hi sleeplessnights,

your life can and will come back. I never imagined mine would when i was diagnosed over a year ago. Meds can help. Many of the women on this site also do physical therapy. i am going back to that next week. I am on Gabepentin...3600 mgs. i didn't notice a decrease in pain until i was over 2000 mgs. It definitely cut the burning feeling. AFter awhile, the doc added Lyrica to the mix. I am on 150 mgs. of Lyrica (was up to 300 mgs, but gained a little weight). I am also on Cymbalta..only 30 mgs..but, increasing tomorrow. the plan is to go off the lyrica. once you gain some control of the burning, you can start the P.T. Your pelvic walls tighten up as a result of the pain on the outside. The P.T. will test your walls to see how tight they are. They can help w/ relaxation, meditation and they can message the walls. I have now just had my fourth nerve block. I haven't noticed relief w/ that. The next step is neurostimulation therapy where i have surgery to have some wires implanted into my spine and then i have a device to control electrical impulse that go to the nerves and interrupt the pain signals. At one point, i had to stop working out. i could walk, but sitting was and still is pretty painful. i sit on a foam cushion (donut) at home and work. I am not in horrific pain like i was. I can have sex. There are several things you can do. Another way to relieve burning symptoms is to put cold gel packs in the refrigerator and put them on the vulva to cool off the area. read through some of the other posts to get other ideas. As for decaf???? i don't know, but i do believe there is caffeine in decaf as well. don't give up....the pain can get better. stay in touch. soon you will be going for enjoyable painfree walks.

thank you for your reply...I need so much support right now..I must stay positive and this forum is a real nice little oasis for me..I have been reading some of the posts...we are all in the same world....but Its comforting to know I am not alone....
again thanks...will be around and will keep posted
hugs

Oww I seem to be always rushing off to work but have to say I love your profile pic. Since my schnauzer is in the other room I can say westies are my all time fave.

I'll respons more tonight
take care

Hi and welcome to the forum

Yes your life will come back. I am on 300mg Lyrica and doing Biofeedback and have found the pain has decreased and flare ups are shorter and only now seem to be really triggered around pms and period time.

I have also cut down on sugar and wheat products

Keep going with the anticonvulsant and also look into Physical therapy

We are here for you and understand

Oh and as for decaff, yes I drink decaff tea so I see no problem with it

Dont give up

I'm so happy to get feedback..thank god a place to vent and get support and also helpfull ways to ease this V thing..
I'm currently taking gabapentin (will be increasing to 3200mg) Its the only med I have? Should I be on other meds...cant take elavil...
My mind is going 100 miles a hour...Am i doing all the right things
If anyone can help me about Diets and drinks....I dont know what to eat afraid it will hurt me???? Or shoud I just eat and not worry about it all.....
At least I'm off work for a while to calm this down....
Its encouraging to hear you all say that i will get better...I know I'll have flare ups but I will learn to deal with them
I was very athletic runner, bycking,etc...now I'm doing the couch thing and its a bit depressive...
About pain medication can we at times of big flare take some pain meds for relief,I know everyone is worried about addiction but pain is pain.
Nice to be here.....and what about wine?????????????

Hey there and welcome,

I did the couch thing for a while as well. Maybe it's just time to be gentle with yourself and focus on healing.

Diet I can help with - cut out the sugar! It's acidic and is generally bad for everything. Think of it as a temporary fix if that helps. I also limit coffee and alcohol... hmm well mostly. I eat as healthy a diet as I can tolerate, lots of water as well. I think about everything I put into and do to my body. I want this thing to F%^$ off so it makes sense to not just listen to Drs who mostly have no idea what they are talking about. Throw everything at it. Therapy, meditation, gentle exercise. Jules is right about physio, get your pelvic floor assessed and then you will know what you are dealing with. A lot of us have found that the muscles go into protection mode and makes everything worse. The pain signal from the brain gets screwed up somehow.

Bloody hell work time
take care xx.

Hey Girl,

There is hope. I know what you are going through. I have had suicidal thoughts in the past and many very deep and dark days! But those are far gone!!!!

Im on Elavil 50mg and am using dilator therapy. Putting something in there everyday. Well, I use medical grade dialtors from www.vaginismus.com

Girl, you are not alone!!!! I can not say that enough.

We are here to support you and one another. Everyday. On good and bad days.

You just need to find

1. THE CORRECT MEDICATION
2. FROM THERE, THE CORRECT DOSE, TOO MUCH OR TOO LITTLE CAN HAVE NEG IMPACTS
3. PHYSIO OR DILATORS...OR BOTH (IM STILL NOT 100 PERCENT ON PT BECAUSE IM WORRIED IT WILL SET THINGS MORE OFF)
4. SUPPORT BOTH EMOTIONAL/PERSONAL AND A KNOWLEDGABLE DOCTOR
5. KEEPING IN MIND THAT YOU WONT BE IN THIS MUCH PAIN FOREVER....NOTHING IS FORVER
6. WATCHING WHAT FOODS TRIGGER MORE SYMPTOMS
7. NO SOAP ON VULVA, LOOSE FITTING CLOTHES
8. BEING GENTLE ON YOURSELF...VICKI HAS GOOD TIPS ON THIS! luv ya Vicki

I feel like Sebbys forum has literally saved me!

I have an infinite amount of love, compassion, and respect for the wonderful women on here! They are all beautiful both inside and out.

Hang in there! You have the mental and physical reserves to overcome this.

Sending love,
Noni

Can say enough when I read your responses..thank you sooooo much.....I love this place already
I'm so lucky Ihave a loving and supportive husband.. I'm trying to keep positive through out the hard moments. I get anxious at times and affraid.
I'm watching my diet..dont eat sweets and cant remember the last time i Had chocolat (I know is it possible not to like chocolat) I'm off coffee...Drinking lots of water and cranberry juice.
I'm going to be posting and listening to your good advices....

Hey there!
Don't worry your life will come back and your situation is almost exactly like mine! I used to be in so much pain that I would just sit on my couch, call off work, and just lay around. It'll get better. I had to travel to 10 different doctors just to be diagnosed with all kinds of crap before vulvodynia. I was idagnosed with 3 yeast infections, 1 case of BV, and a UTI, before I finally got straightened out by Dr. Nyerjesy in philadelphia. I feel your pain and the best thing to do is stay on the gabepentin (it works pretty well), ask your OB/GYN about amitriptyline/baclofen cream (a muscle relaxer and antidepressant cream that calms the nerve endings) and after intercourse take a luke warm bath with baking soda. baking soda is amazing! also, dove sensitive skin body wash really helps me on a daily basis bc it doesnt contain soap. If you need any more advice don't hesitate to ask! I've decided to take advice from my vulvodynia specialist but let's face it, no one knows your body better than you so don't hesitate to experiment with different remedies.

Wow there's some great knowledge out there, maybe we should write that book! I asked my specialist for the gaba cream and had no joy. I wouldn't mind trying the ami.

I just wanted to add that maybe cranberry juice might be best avoided for a while. Juices are the sugar part of fruit without the fibre. The difference is you can only eat a certain amount of fruit before you feel full, juice however is a free ticket of fructose straight to the liver. I'm obsessed with the sugar angle at the moment but say you had 600mls of apple juice, that equates to 4 large apples, you could probably only get through one apple without feeling some effect on your hunger, the juice has the same amount of fructose as all those apples but you could down it and then eat a full meal. Fructose is pure poison.

Owww we are on FB as well. Email to Sebby she will invite you to join. It's a secret group and nothing posts to your wall. It's a really good way to connect every day and you will also see we are real people. Imagine that!!!

Thanks for the heads up on sugar will keep in mind....

You can get cranberry tablets that have the useful stuff from cranberries without all the sugar. Cranberry juice just inhibits the bacteria growth that leads to urinary tract infections, so if youre not suffering from UTI's it wont do much to relieve the pain. I have a little bit of caffeine every day (3 cups of tea), because I need it to function (no, really. NEED it), and found giving it up didnt help. I just make sure I drink lots of water to make up for the diuretic effects and try to balance out the acidity with lots of alkalising foods (I live on greens). I have found the most relief in massage, physiotherapy, pilates to improve my posture and all different methods of relaxation (eg, sitting in a park, deep breathing, meditation). Ive been improving consistently over the past 6 months and am feeling confident im on my way to healing. fingers crossed!

Hey Lisa, good on you hon! I'm so excited that you are getting better. Your plan is incredible!

What things do you work on at pilates? I'm keen to give it a try. My pelvic floor locks up now. I think that started when I went to physio. I'm sure some deep breathing would help release it.

Interesting with the diet also. I've found since I've fallen off the sugar wagon my V is making a comeback. I've nearly finished all my easter eggs and then I'll get back on track

I've been doing a little bit of pilates recently too, I can't do any of the advanced moves because of my joints so I stick to the simple stuff. I also follow Isa Herrera's advice of if your pelvic floor is still tight use the transversus abs but keep the pelvic floor as quiet and relaxed as you can. It's difficult actually because the pelvic floor automatically co-contracts with those abs but I do find my pelvic floor is still quite relaxed afterwards if I get it right. Be careful though anyone doing pilates style exercises, I think that's what set my pelvic floor off because I was doing lots and they were all too difficult for me.

As for coffee, I allow myself 2-3 cups a day and drink water or camomile tea the rest of the time. I didn't used to have a sweet tooth but I think the Ami has changed that so I've now decreased my sugar intake to almost none again, hopefully I'll get rid of my awful tablet induced weight gain too!

The deep breathing to relax the pelvic floor basically involves aiming the air into the abdomen and not the chest so it pushes the pelvic floor down a bit and makes it relax. It is still possible to do it wrong and grip with the pelvic floor though so you do need to focus on not doing that as you breathe. The PF muscles should relax on the inhale.

HI
Great responses, I have downloaded the pilates exercises for pelvic floor muscles..will start this week because my symptoms had subsided a bit ( dont tell anyone) I also I'm going start yoga exercise...
I'm so excited about this forum..found myself a bike seat ( a web page found on this forum ) my husband want ones too...My life will come back. My emotion are better controlled..thank god because the bridge in the back of the house was looking pretty inviting ( sad to say ) but that's what happen with chronic pain.....Its all new to me I have a lot a learning into living again..slower and easier going..and what's wrong with that. life is to short and goes by so fast..might as well slow down and enjoy every minute of it....
Thank you thank you all of you ...dont go far..I will need you girls for a long time.
Have a great week...
Keep in touch

sleeplessnights,

so glad you are feeling better. it sounds like you have some fun things to look forward to. you can take more than two diff. types of meds if your meds aren't working alone. I'm on three (Gabepentin, Lyrica and Cymbalta) also, you can get pain medication for this condition. i am on Vicodin and unfortunately have been for a year. I'm starting back with my physical thrapist tomorrow. i am having a flare up right now....always do the week before my period... OUCH!

enjoy your bike!

Hey there,

I spent a bit of time in the middle of last year thinking about "the bridge at the back of the house" as well. In the end it pissed me off so much I threw everything at it.

The bike sounds great!

Jules I'm having a wee flare up as well - period time and loads of chocolate :\

Hey ladies,

Ditto for me....I get flare ups before my period and get super depressed about my condition...its like a vicious cycle with my physical and emotional states both feeding into eachother.

Sending love to you all

Hi Sleeplessnights.

Some recomendations that have worked for me:

NO COFFEE - it makes my urethra burn like hell
limit alcohol
meditation
biofeeback, trigger point release, diolators. (an absolute must!!!!) I would go as far as to say other therapies do not work without this as well. Get a womens health physio to look at the trigger points around your bladder neck....ouch!!! once these release things should feel easier.
ami/lyrica etc. Although I have just come off lyrica and my symptoms have improved dramatically. The lyrica was making my urethra and clitoral pain worse, so watch out for this. I have had 20 good days in a row, this is massive.
warm baths - not on burn days though, helps relax the muscles - works wonders for me.
bicarb soda, drink it and bathe in it. Neutralises acid in bladder making urethra burn. Seems to help with bottom itching?
TENS – didn’t work for me but worth a go. Works as a distraction I found when pain was really bad.
YOGA YOGA YOGA. Calms the nervous system and helps relax pelvic floor. As Sarah said deep tummy breahing.

If your husband can help with trigger point work this is even batter. I have mine to thank for my success this far. Sex is now almost always pain free, it is the only time I am not in pain. In 9 months of therapy I have gone from being 6/10 pain on a daily level to 2/10... There is help and hope. If I can help with anything please let me know.

Claire