cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
For anyone that doesnt know i was diagnosed with vulvar vestubalitis last month. A few have had it on this board, so that is why i am updating.
im sittin here crying. The dr today said it is thw worst case she has ever seen!!!
My nerves are all inflamed she can tell by the blood vessels. And im lucky i have an extra gland......and guess what that is inflamed too.
that one is closer to my urethra.
she said we need to start getting agressive with treatment the creams im on now are just minor. She will get me better and we have to get started.
I asked about the correlation to lyme and she said i prob would have gotten this anyway..
.what she finds is lyme just makes something like this A LOT worse!!!! She said ive had it awhile and i must be in a lot of pain (actually today i wasnt)
so thanks to the exam im flaring now.......still couldnt have full exam.....so we dont know if my bladder is involved yet.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
I am so sorry to hear this. It sounds just awful and painful and since it is in a private area, it is also difficult to talk about, could bring up some difficult issues, and has pontential to be humiliating if not treated professionally.
It does seem like you have found a good and somewhat compassionate GYN though, is that true in your opinion?
What will the "real" treatment be, or entail, do you know?
How SOOOOOON to any relief--that seems pretty important right now.
My thoughts are with you and I hope that your strength and perserverance can get through through yet another ordeal that many would never understand.
Force be with you, Trails
Posts: 1950 | From New Mexico | Registered: Sep 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Thanks trails,
i sit here crying......i have and must find the strength to go on to fight....i rarely back down from competition i am a competitor.....but darnit this stinks!!
The cream helps........she mentioned doing more oral meds then topical......and i guess increase the amount of the topical meds.
Since starting their treatment last month i have seen a tad of improvement. i do feel that if i stick to her plan i will get well.
I feel she is my best shot, she has a great attitude.
Im tired of all these unknown causes........my guess is i got this from sitting at work all day long and rolling around in my office chair. for now i will come up with my own causes to things.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hiya Can't!
Sounds like you've finally found a good doc. Yippee! Hope things start looking up now there's an answer to your pain and burning. I sent you a PM! - someone's story that sounded a LOT like you. Think positive! You couldn't beat it before because your doctors didn't know what it was...now they DO!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
Can't, thanks for posting about a very sensitive subject area.
My heart goes out to you for all the pain you are in. I've heard or read something about this years ago. Best wishes you are on the ROAD to healing in that area.
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
Im not crazy afterall :-) ive been reading up on the low oxalate diet.........
AND i have always flared after eating a lot of sweet potatoes.....like if i eat them 2 days in a row.......i love them. well they are extremly high in oxalate.
Chocolate is on that list too and that causes me terrible pain if i eat too much.
It still maybe yeast as those are also foods to avoid with that.
eggplant was on that list too....
oh and almonds are fairly high.
im going to modify what i am eating and see what happens.
if it means one day i can eat chocolate again it wil be well worth it.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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posted
So sorry to hear of all the pain you are going through. I can sympathize with you as I also had it.
I was very scared not to mention embarresd.and didn't know what was going on. I understand the tears because you feel so helpless.
It was a while ago so don't remember all the details. I had much neuropathy pain throughout my entire body and have a cream called Emla which numbs the skin.
It helped calm down the extreme pain as it numbs the skin. I don't recall being on other treatment for it. It did last quite a few months with me.
I beleive the antibotic tx for lyme helped.
I was never given a real reason why it occurred so I just figured it was one in the same as lyme neuropathy.
It is horrible and impossible to have clothing touching it.
My heart goes out to you.
Please keep us posted with the treatment she will giving you.
God Bless
Posts: 139 | From nj | Registered: Mar 2005
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posted
Yuck! I feel for ya, can't! How does that differ from vulvodynia?? Do you know??
At least you know what foods to avoid now. That should help some. I think this dr can get you well. Be patient! AAARRGGGHH!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I do have faith in this doctor. She is very understanding. Since this problem isnt diagnosed by the main-stream gyn...its kinda like being diagnosed with lyme all over again.
I figured i couldnt be alone with this as it seems it is nerve (lyme) induced.
Yea, i cant wear jeans just loose baggy stuff.
Lymetoo- to answer your question i believe vulvodynia involves the whole vulva. I think i have this too........but the vestubilitis(spelling) involves the vestubule and the glands.
My glands are swollen and inflamed, which is why i have so much pain at times.
Its kinda like a sore throat with swollen tonsils but down there.
Suprisingly im not real embarassed to talk about this...i figure i would post, so maybe a few months from now someonelse suffering might be able to see that they arent alone with this symptom.
-------------------- "Say it straight simple and with a smile."
"Thus the task is, not so much to see what no one has seen yet, But to think what nobody has thought yet, About what everybody sees."
-Schopenhauer
pos babs, bart, igenex WB igm/igg Posts: 3156 | From Lyme limbo | Registered: Oct 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry you are suffering so much....
I am glad you have a good dr. because we all know that is the first step to getting better..
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
Im sorry to hear you are suffering so much but I am glad that you are finally on a good track for treatment-that is something to be thankful for!!!
Keep us posted on how the treatment goes though.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
I empathize with you so much! I have this too and it destroyed our sex life.
I did the low oxalate diet for two years but it did not help me. I hope it will help you.
What helped was so simple and was prescribed by a holistic NP. 1)Boric acid suppositories from a compounding pharmacy twice weekly, and 2) prick a vitamin A capsule with a pin and put it on the area nightly. She said vitamin E also works, and it smells a lot better than vitamin A!
Now, after a few months, I can get away with the boric acid once weekly, and I just use A & D ointment a couple of times per week.
I think different things can cause this when immunity is compromised. I had a deep tissue scraping done by a GYN that showed I had mutated yeasts deep in the tissue as the cause of mine, but for someone else it could be a different type of infection.
I hope you find a solution. Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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