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Multiple questions rolled into on....sorry Multiple questions rolled into on....sorry

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  #1  
Unread 08-20-2005, 05:52 AM
Multiple questions rolled into on....sorry

I know I've been far less than a textbook case which has been very frustrating. The inital recovery went well until the one month mark and then I began having terrible pain when sitting. It took four months for me to get a doctor to look into the issue, only to find they entrapped a nerve. They want to treat it with medication which I must admit after spending the last 4-5 years taking pain med's doesn't thrill me. Their hope is that in 2-3 years it will resolve!!!!

Since surgery I also don't sleep much now, I know that's normal in the beginning but it's been 9 months and I'm still sleeping 4 1/2-5 hours. Trust me when I say I someone who REALLY NEEDS 8 to 9 HOURS. I just had them run my hormone and thyroid levels all which came back normal to my surprise.

Lastly and this one is alot more private so sorry if it embarasses anyone. During intercourse, even though we use lubricant I tear - I mean everytime! and the piece of skin that they sometimes cut (do a appesitomy when you have a baby) is sooooo soar I swear something is structurally wrong but doctors never say it is. Not to mention pain with intercoarse in the pelvic area has come back.

Lastly, my endocrinologist has pretty much just dropped me and I need to find a new doctor and have no idea where to begin because he was the #1 guy in this area. I think I'd really like a female this time though I think they might relate better.

My hope is someone out there has some thoughts or answers on any of these issues. It would be a tremedous help.
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  #2  
Unread 08-20-2005, 07:25 AM
Multiple questions rolled into on....sorry

Karen,

I have had burning vulva from nerve pain ever since waking up from my SAH. I was diagnosed with vulvodynia. There are different types, and mine is the kind from nerve damage.

Tricyclics work very well for me in controlling the pain. Usually a very low dose helps. I didn't want to take meds either. Unfortunately I have a history of urinary retention and I can't take these meds unless I self-cath.

The skin on the lower opening of my vagina is SO painful during intercourse. I have had actual tearing 1-2 times. We have sex so infrequently now because of the pain.

I have found topical lidocaine 5% really helps with the surface pain and if I get it on about 30 before having sex and use lubricant I can tolerate it, even though I can't feel it. My clitoris is also involved, so once you numb up that happy place, things are not going to be very fun for me! At least I can participate if I choose.

I've seen many dr.'s. Most don't have a clue what to do. I'd suggest getting online and doing research. A great book I read was "The Vulvodynia Survival Guide" It tells about all the kinds of vulva pain, treatments. For us the most validating chapter was that on the sexual aspects of vulva pain.

Good luck. I am just past the 1 yr. mark and I feel on some days my burning is lessening. If I try to wear pants/shorts with fitted crotch area instead of athletic type clothes I get a terrible increase in the burning pain. UTI are bad, intercourse I also have mini-periods and each one brings on a new exacerbation of the burn. I've heard the same, takes a few yrs. to mend the nerves.
  #3  
Unread 08-20-2005, 11:19 AM
Multiple questions rolled into on....sorry

(((Karen))) I'm sorry you've been having such a hard time And it doesn't help when doctors do not take you seriously

I can't help much with the other issues, but I know what you mean about lack of sleep For the passed year or so, I've had so little sleep, due to a number of reasons including peri-menopause, that I am virtually exhausted.

One thing that I've found helpful is to turn to supplements available over the counter. I've had lots of success with St-John's Worths (check with your doctor before using it, as there are some counter-indications), Valerian Root and anti-hystamines (such as Benedryl). Of the three, the SJW is the most effective, with the least side-effects (for me). The Benedryl I'll only use when my allergies are flaring, as it leaves me very, very droggy the next day: not pleasant at all. The Valerian Root is ok, but I find that it becomes less effective if I use it on a continuous basis. The SJW, on top of helping me sleep, also relieves a lot of the tension I feel on a normal day.

Hopefully, you'll find a new doctor soon, one that can work with you. Please, do keep us posted.
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  #4  
Unread 08-20-2005, 09:44 PM
Multiple questions rolled into on....sorry


I'm sorry you're having problems with sleep. While your hormone tests may have placed you within the normal range, that doesn't mean that the range is right for you. The ranges for these tests are usually very broad and we are all different, there is not one set level where we will all feel the same. You may want to look at the hormone issue again. You'll find more info at www.hormonejungle.com

What are you currently use for hrt? Do you feel balanced? I would hesitate to add things like St John's Wort at this point. We are all different, but I used it at one point, and it made things very much worse for me. And I'm not sure how the SJW will help with your vaginal issues.

I think you should seek a second opinion. I've been thru about 20 docs since my hyst. I have found some keepers in the bunch! Keep looking. Ask your friends for referrals and check your insurance booklet, if you have insurance.

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