just diagnosed and scared

Hi everyone,

My name was Kim, I was just recently diagnosed with vulvodynia. I've been also living with IC and IBS, but the vulvodynia is the worst. I have unprovoked V, and it currently hurts so much. I am laying here with ice, and it is helping a bit, but it will just go back to hurting after I have to pee again. This flare came out of nowhere- just went to the bathroom and it burned ever since. Sex is usually painful- I can rarely have sex with my boyfriend without wanting it to stop. I have listed what I'm using for all my disorders down below. I would love to talk to people who are going through this too; I have been very depressed and very scared and I don't know if I'll ever find relief. I would love to hear any success stories.

Thank you all for listening!

-Amitriptyline: 10 mg a night- hasn't helped yet
-Estrace: vaginal cream used 2/3 times a week- just messy and it burns when it comes out
-Neogyn: I started this about two weeks ago and it still burns when I put it on. Says it takes about 6-8 weeks to work, so I'm trying to be patient.
-Aloe pills: Unfortunately, these make me very nauseous. I need to be more regular with them, but I dead taking them.
-IC diet: I try to stick as close to it as I possibly can
-Imodium: I have bad IBS symptoms so I often need to take Imodium.

I hope to hear from you soon <3 -Kim

Hi Kim,
I know how you feel...it is such a painful and lonely disease. There are a lot of success stories on this site and new treatment ideas. I wish I could share a success story, but unfortunately I'm in your same boat. My doctor just tried a round of botox injections....I am in day 11 and still waiting for relief...I pray it works.
Glad you found us....you aren't alone anymore!

Hi Kim,
I just wanted to say the dose of Ami you're on is very low, what they usually do with that one is increase the dosage by 10mg a week until 50mg and then see if it's helping at all. If it isn't they would then probably give either Gabapentin or Lyrica so it might be worth asking about increasing the dose to begin with. I'd also read "When Sex Hurts" and see if you can establish why the problem has occurred so you know better how to treat it. it's a really good book and covers all the known possible causes which is incredibly helpful when trying to put together a treatment plan. I know for practically everyone on here it seemed to arrive out of nowhere but often there are some other signs and symptoms before the V that can lead you in the right direction. For example alot of the ladies with tight pelvic floors had symptoms such as having to push urine out, constipation, back pain etc or those with hormonal issues have skipped periods or had just started a different birth control pill. It's a good idea to read up either in that book or online about causes and see what you can come up with.

Hi Kim
Your not alone, since joining this forum I have felt so much better, just reading the positive comments is wonderful. There is always hope and new things to try. I agree with every thing Sarah said to you. And thank you Sarah you seem to answer every one with such positive remarks and it really makes a difference, you are appreciated. I am a true believer in that "Nothing ever stays the same", as much as you can be in pain one day you can have relief the next day. Up the amitriptyline Kim under guidance with your Doctor, I went up to 35mg and my pain went over night and that lasted for 4 years. Under Sarah advise Im trying to find the source of the pain now and I will never give up!!

Aww bless you zarli and keep trying to find that cause and eliminate it! I think proactive is the only way with health problems and the more clued up you get about it the better choices you make. Good luck girls!  

Thank you all for responding. I wish you all the best of luck. It means a lot to me to talk to people who are in my shoes. I'm going back to the doctor in a few weeks; hopefully he will up my dosage of Amitriptyline. Neogyn has been been burning, so I don't know if I should continue with it.

I am having a very bad flare for the last couple of days. I don't know if it's an actual flare or a yeast infection, just because it is so bad. I'm swollen, red, itchy, and it burns like crazy. I can't even wipe without it hurting. My urine has been burning it as well. Is this a flare? How long do flares last? I'm so new to all of this.

Again, thank you all for responding. I am very scared, and your responses really do help.

<3 Kim

Kim you need to see your doctor NOW not in a few weeks, your ami needs to go up now so it can help get rid of your symptoms and control the pain. When pain is controlled your symptoms will be relieved I believe. Try to not think bad things don't be scared there is help you just need to get to the doctors

also you should try BEPANTHEN ointment it is a nappy rash cream you will find it in your supermarket in the baby aisle it acts like a barrier and it is soothing, it will help stop your wee from stinging, and while your there try Johnsons baby soap in the baby aisle, its the only soap I can use. I hope this helps you.

I called and I'm going in next week. I'm hoping he ups the dosage. Have you ever confused a flare with a yeast infection? I can't even have pants on (or anything touching the area) today. Thank god I have off today!

Also, thank you for the soap tip!! I use Aveeno soap- doesn't burn me. I'll try Johnson's though- may be even better!

Glad you got into your doctor tell him you have researched medication and 35 mg is what works be assertive with dr I always find it helps even though I get intimidated being assertive but its worth it!! I have had lots of flare ups and yes I used to get them checked for yeast infection which always proved negative!! Please let me know how you get on and don't forget to try the cream if you haven't already kindest regards Zarli

Welcome to the forum, as you can see you are definitely not alone. We are all in or all have been where you are now. I am on lyrica and had to research that myself and ask for it! I am also doing pelvic floor training (trying a new routine)
Don't give up, things can and will improve. It's about finding the right treatment for you x

Hi Kim just wondering how you are going? Hope you have had some relief.