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Need some help with vulva vestibulitis Need some help with vulva vestibulitis

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Unread 01-24-2008, 06:21 AM
re:how long till everything's back to normal

I had my surgery oct 22. I have been in pain ever since. My vagina has taken a direct hit and I cry every day wondering if this will ever stop. I have been to many doctors and taking medication for estrogen and pain meds. I have vulva vestibulitis and sitting all day at my job makes the pain even worse. I'm also having my arms going cold and numb and sleeping is out of the question. I can't sleep with my husband and sex forget it. I am wondering about nerve damage. I had a ct scan, bladder scope and mri, all show no damage. I am scheduled for a mri on my spine area maybe that may show something. I had laproscopic with vaginal and everything was taken out. The every day dealing with this is really bringing me down. I see pain management next week. I have forgotten what a day without pain is like. I thought this operation would make my life easier. It has done the opposite. I was never in this kind of pain ever. I just pray this will stop soon. Thanks.
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Unread 01-24-2008, 07:24 PM
Need some help with vulva vestibulitis

Hi (((tired001)))
I'm so sorry to hear about your struggles. This sounds so painful. I have looked around and not found any recent threads on vulva vestibulitis. You just never know though, there could be members we're not aware of who have also dealt with this condition.

I have found some threads where it has been discussed and have shared a few of those links here for you to look at. If you do a search on vulva vestibulitis you will pull up these threads and others that might be helpful to you.

There is a support site for Vulvodynia you might want to check on there for some more information.

I'm not sure if you are using hrt or not. There are so many things that can effect sleeping and even the coldness you're experiencing. I know your other pain is a huge factor here, but wanted to offer that other idea to see if there could also be a connection there.

What you're experiencing in your arms almost sounds like some kind of damage to your neck. Is this possible? Do you have any back problems?

I'm sorry not to have anything more for you. Just some ideas to consider. I hope you can find some answers and get to feeling better soon. Please let us know what you find out from the mri. Hopefully there will be some help there.
's, Rita
Unread 01-25-2008, 07:38 AM
Re:Need some help with vulva vestibulitis

I keep telling myself maybe I am still in recovery and everything I am feeling is a result of that. Since my operation I have had to sleep on my back. I keep thinking the arm numbness is a result of sleeping on my back and not being able to sleep well. I am taking vagifem and vivelle dot patch. My doctor has me taking elavil and after two weeks, not noticing any change. Of course sitting everyday at my job I think is making my healing impossible. I have a donut pillow and a regular pillow to use while I am at work, but by the end of the day I am on fire. I still take pain meds even at work. Hopefully after next week going to pain management and having a mri on my back will give me some relief. I just want to feel like I did before my surgery. Thanks for the help.
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Unread 01-25-2008, 06:33 PM
Need some help with vulva vestibulitis

Dear Tired 001,
I'm so sorry you're in terrible pain. I had vestibulitis and can sympathise. My new doc just did surgery on Dec 17 to remove the inflamed tissue around at the vestibule. I've never been able to have normal sex because it hurt way too much. I'm finally after 5 weeks starting to be able to sit for most of a work day.

Sorry I can't offer much in the way of advice. I just wanted to let you know you're not alone.
Unread 01-28-2008, 01:27 PM
Need some help with vulva vestibulitis

A couple of things I wanted to suggest. Do you know if your estrogen levels are high enough? I had burning on the Vivelle Dot.75. When I went up in estrogen to Divigel 1.0 it improved. So I'm not sure ifit was the patch or the dosage. Also, do you think your urine is burning the tissue? You can try Prelief OTC that reduces the acid in your food and urine, see if that helps. Try not to use soaps, if you have to, use cetifil. Usually water is fine. Keep a log of what you eat, meds you take etc and see if you can find a pattern with flares. Find a uro/gyno that can deal with both urinary and gyno issues. What strength of Elivil are you on?
Unread 01-28-2008, 01:42 PM
re:need some help with vulva vestibulitis

I am taking vagifem and the vivelle dot patch 0025,which I cut in half. Using a whole patch gave me a bad headache. I am taking 20-30 mg of elavil. My gyn has got me taking musinex that has the ingredient guaifenesin. She has said there are studies that this helps with vulvar issues. I am taking 1200 mg a day of that. I don't think urinating is a problem. I know that sitting is my main problem. I am at work right now and sitting in this chair all day just inflammes the issue even more. When I go home all I can do is eat and take pain med and lie down. I am seeing pain mgt this week also with a mri on my spine area to see if there are other issues. I haven't been able to sleep on my side since my surgery. I have been miserable sleeping on my back. All I know is all of this has happened after my surgery. It's either the lack of hormones, and I just need more time to get regulated or something bad has happened and I just don't know it yet. I know it's only been three months, but this has really destroyed my life as I knew it. Can't sleep with my husband let alone have sex. I am barely able to work and I thought my surgery was to help me not give me the worse pain I have ever had in my life. Thanks.
Unread 01-28-2008, 01:50 PM
Need some help with vulva vestibulitis

Wow, your dose of estrogen is really LOW, do you have your ovaries? Also, have you tried an allergy med like Singulair? It can help. Are you sure the patch gave you the headache and not the vagifem? The vagifem says on the box "may cause headache". Sometimes, *I* think the vulva vestibulitis is a doctor's cop out and you may want to look for other causes for your pain. I think you may want to start out with a blood test checking your hormone levels. I know for me, the lower my estrogen, the more burning I had. Divigel is a new form of gel you rub on your thigh everyday. I like it a lot. It comes in 3 doses, .25 .5 and 1.0
Unread 01-28-2008, 02:00 PM
re:Need some help with vulva vestibulitis

Both of ovaries are gone. I had laproscopic w/vaginal surgery. I started the patch right when I got home. I was taking a lot of meds, antibiotics for uti and maybe the headache came from them. The vagifem I just started maybe a month ago. I think I will put a whole patch on and see what happens. I have looked at myself and my outside vagina area is very red. I use lidocaine jelly to help with pain. Like I said by the time I get home after work it really is inflammed more. On weekends, I take it easy so it doesn't hurt as much. At this point my whole body feels like it has been hit by a semi. Just not being able to feel comfortable puts a lot of stress on your body I think. I wish there was just one thing to do for a situation like this. One pill or one shot. I'm beginning to think this will be a situation where I have to keep trying all kinds of things to relive the pain. I hope I am up for that. Thanks.
Unread 01-28-2008, 02:07 PM
Need some help with vulva vestibulitis

If you are red, I would try an RX called estrasorb that you can put right on your vulva. It is a soy based estrogen lotion. I think you would get a lot of relief from that. You can put a packet on at night. Ask your doctor about this. It is also a newer form of estrogen. Another thing, you could have yeast. Even without a discharge. Either get a diflucan or start taking LIVE liguid acidolophis everyday. At Whole foods it is in the refridge section. They make one especially for women called Femdolophis or something like that. If you are red, I would also try an antihistime like claritin OTC or singulair. let me know how you are doing!
Unread 02-01-2008, 08:59 AM
Need some help with vulva vestibulitis

I went to pain management and the doctor told me I have vulvodynia. He is telling me that this will never go away,that it can be managed through medications and biofeedback therapy. I cried all the way home. I have another doctor telling me that this will go away as soon as we get the right meds. I started taking neurontin along with me elavil to see what happens. I asked about taking pain meds while I am at work, pain mgmt doctor said this will in time only worsen my condition. I have to sit all day at my job and taking a little pain meds seems to work for me. I wish I knew who was really right. I hope this will go away soon. My husband has been very patient and I wish we could be together like we used to. Has anyone else felt they never would have done their hysterectomy. I really wish my surgeon would have told me this condition could happen. I would have looked for other options. Thanks.

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