diangnosed today with vulvar vestibulitis

[mich2604]

Im so sad....and overwhlemed. so many meds that i dont feel like taking.

i was given lyrica, clonazepam, singulair, urocit-k and 2 more creams that are being shipped to me.. i cant swallow the urocit so i have no clue what i will do.

i also have bladder problems and was given a voiding jornal.

i was dianosed with lyme disease in decemeber and im just so tired of drugs and being so sick.

i cant even leave my bed.

thanks for listening.

[ISONormal]

Oh, mich2604, we can all relate to not wanting to take drugs! But please, let me urge you to do what they recommend, and see how it goes. And others who do the voiding journal recommend it as a way to help take control of your life and your health. So it can be very positive. Let us know how you do and keep learning more and more about all this stuff. ICN has great materials as does ICA.

[Briza]

mich
Sorry for the diagnosis! I have vulvodynia and would only wish it on my worst enemy. Please try to take comfort that you have a doctor that is knowledgeable and willing to try medications that hopefully will make you more comfortable. What are the other creams that you have been prescribed?

[mich2604]

they had to special order the creams. The company just called me.

Its estrogel and something with an A. Another 75.00 out of pocket. :bonk:


Diflucan helped my burning last nite and i have no clue why. It always helps. The uro didnt prescribe it though, so i guess i shouldnt be taking it.

[ihurttoo]

So very sorry to hear your news. :( It is rough to have to go thru all of this. But the medicines really do make it managable for most people. If you are having trouble taking one, please speak to your pharmacist about this. He/She may know of an alternate brand that is easier for you to take, or a way of compounding it to allow you an alternate delivery method. Please know that there is hope! For me, the meds did not work, so I ended up having surgery. It was called a vulver vestibulectomy. It worked! I no longer have daily pain down there. I do have occaisonal flares (maybe 1 every 5-6 weeks), but compared to the daily, I can take it. The surgery was done at same-day surgery. It only took about 45 min. They Knocked me out for it. Afterwards, I went home. Full recovery took about 2 weeks, maybe 3. But, honestly, if I had to, I could have gone to work about 3 days later. The pain meds, lidocaine, and ice packs handled my pain quite adequately (sp?). I am not suggesting that this is for everyone. It is only for extreme cases. But I did want you to know that it is an option! I truly hope your meds will do the job for you. But do give it some time. It usually takes a month or two to for them to do their job. Best of luck to you! If I can ever answer any questions for you, please pm me. I will be glad to answer ANY question. Hugs, Amy :grouphug:

[Kara Isabel]

:grouphug: :grouphug:

I'm so sorry you are sick right now! Hopefully the new prescriptions will help you feel better.

hugs, Kara

[ICNDonna]

It's never nice to get a new diagnosis with more medications to take. You mentioned that you are having a problem swallowing and I do have a hint for you there. If you take a swallow of water, then place the pill towards the back of your tongue, then fill your mouth with water, tip your chin down, then swallow, the pill goes right down.

Donna

[Justalamp]

Hey I just got that diagnosis last week. I hope your Dr. gave you better info than mine did. I had to come home and look it up on the internet. It seem like ever time I go to the Dr. I have something else wrong with me. Sorry for the newest additiond to your diagnosis.

[ICB]

A very comprehensive resource for Vulvodynia is the National Vulvodynia Association (NVA) www.nva.org. They send out a fabulous newsletter that is full of extremely useful information!

One of the advantages (if you can call it that) of having IC & Vulvodynia is that many of the medications that work for IC, also work for vulvodynia. A note of caution - many creams contain stabilizers, known irritants (such as propylene glycol), or allergens (such as dipucaine) that can cause skin irritation (burning/itching). In general, ointments are better tolerated than creams. A compounding pharmacy can be invaluable; they can prepare the medication that you need in ointment form (if the medication is not available in ointment form).

One of the ointments that helped me with the burning is called Desowen. If you find that any medication is causing you further irritation, consult with your healthcare provider and ask about getting the medication in ointment form and/or about Desowen.

Has your healthcare provider checked to make sure that you have not developed Pelvic Floor Dysfunction (PFD) as a result of the IC & Vulvodynia? If not, you should ask that they check to make sure - PFD can make your symptoms worse. If you would like a Fact Sheet on PFD, please send me an email with your request at icrelief@verizon.net and I will email it to you.

Only your healthcare provider can determine if the above suggestions are appropriate treatment options for you; these are just some suggestions that you can discuss with him/her.

The contents in this post are provided for informational purposes only. The contents are not intended in any way to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding your medical condition.

Best wishes, ICB :flower:

[July]

Hope you feel better soon! With vulvodynia, I have found that there are many ways to help soothe the pain. One big thing for me is to use Charmin Ultra toilet paper. Cold application also helps, as does All Free and Clear Laundry Detergent, and double rinse panties. 100% white cotton underwear helps, and go without at night. There is a book called the Vulvodynia Survival Book by Howard Glazer with useful hints. Also, check into PFD. Drink plenty of water. I'll keep you in my prayers for help and pain relief soon.

[mich2604]

i was away from this board for awhile. the meds were helping. i forgot what it felt like to burn. Then, yesterday it all came crashing down on me.

i felt it coming on, you know that feeling in your bladder and you just know. Then the burning while urinating....and afterwards. I took azo and it did help.

I was free from burning, so now that im back to it.....well it stinks. The brochure my dr office gave me says...it is often one step forward and 2 back. so, i just picture the very delicate tissue slowly healing

i think i flared after a bowel movement......and again tonite....and now i just have constant pressure like i have to pee and have a bowel movement.

my period is late..........im supposed to have my 2nd appointment on wed.....but if i have my period i will probably have to cancel.

im trying to relax and to tell myself that this will pass....it will.

in the time i was away from the board i can now swallow pills too.