Topic: Question for the women...anyone have this with lyme
cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
I know this is a bit personal for some, but i really have nowhere else to turn.
I just got back from the urologist 200.00 worth of meds. Im just sad.
anyway was anyonelse diagnosed with vulvar vestibulitis?
I also have bladder issues and they put me on meds for that to see how they work...and have to complete a voiding journal.
I dont even know what i have anymore, whether it is even lyme. I just feel so depressed.....all of this started with dizziness and sensitivity to light in august. And now i just dont know.
-------------------- "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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bettyg
Unregistered
posted
Can't, I did a search on NIH's medline plus user friendly site on illnesses, drugs, & dictionary & found this on subject you want to know about.
trails
Frequent Contributor (1K+ posts)
Member # 1620
posted
Lyme effects the hormones greatly. And/or visa versa. We women are caught up in this twister that is ripping thru us and spinning us around.
Not a pretty picture.
Before Lyme I had normal everything....healthy woman. Since neuro lyme and IV treatment in 2001, I have severe endometriosis, pelvic adhesions, ovarian cysts, and unexplained severe intermitten pain just inside my vagina. Oh my life is full of fun and I am just 33!
I have a good GYN/surgeon that has done a lot of research on the connections b/t Lyme and endo and other similar and possibly related diseases. Here is something from his website:
"I propose use of the term Multi-System Disease to describe a family of clinical syndromes who have a similar underlying mechanism of action. These clinical syndromes would include such diseases as endometriosis, fibromyalgia, chronic fatigue, food and environmental sensitivities, some cases of interstitial cystitis, insulin resistance, hypothyroidism, allergies and autoimmune diseases, Lyme disease and associated infections to name a few. Genetic and Environmental factors contribute to which specific clinical syndrome is expressed"
I can do nothing but offer this info and my empathy! Trails
PS--the vaginal pain turns out to be nerve pain that may be triggered by Lyme OR by adhesions/endo. We will never know.
Posts: 1950 | From New Mexico | Registered: Sep 2001
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
thanks trails, i will take a look at the link.
i cant stop crying tonite....i just feel so alone. There is no one that understands. this board is literally my life line right now.
I used to belive i had lyme.........now im just messed up beyond repair.
im only 30....have a lot of life before me. my body is putting up one heck of a fight....but it cannot beat it....not this time.
I always always get things worse then anyonelse....chickenpox...i still have huge scars..round lesions on my shoulder. Wisdom teeth surgery took me 3 months of recovery. I never get a simple cold...always bronchitis.
Here i sit with some wacked out thing that no one has ever heard of unless they have it.
I was healthy too in this area....i just dont understand why I had to have this happen.
I just wonder if the abx brought this on.
-------------------- "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
Doubt it--that abx brought it on.
Rarely have trials been done, but healthy people take ABX and NOTHING happens except yeast.
You dont get pain and all these sx by taking ABX, but I soooooooo hear you even thinking about it. I have spent YEARS thinking about it. BUt it just hurts me to second guess myself so much.
Did you see the post by hopeandme? The one about crying? Oh gawd, I cry and cry and cry. ESPECIALLY when I am herxing.
You might be herxing now and your emotions are gonna go just as haywire as your body feels.
I rarely know it at the time. Even when I have been thru it a bizillion times. I always look back and think---oh crap, was that me doing an emotional freak AGAIN coz it was my period AND a herx?
Some times this board will be your life and other times you wont visit for YEARS!
I didnt visit it for 3 years and forgot my password until I was moving and found it on a scrap piece of paper!
I had almost 3 years of no Lyme stuff. And no treatment either.
I relapsed coz I didnt treat the coinfections and I had a steroid shot.
THere are lots of names that come and go here. When people get better, they stop visiting.
We cry babies hang around coz we feel like crap. and misery loves company. And some healthy people come too and check in on us nuts! I am glad to meet you tonight, coz I feel less alone right now...it is hard being our age and facing this type of uncertainty!
I've had bad vulvar pain too. It tends to be in the clitoral area and gets really painful. It was out of control for a while but did improve.
It seems to be at least partially yeast related. If I stay on a very strict anto yeast diet I do much better. If I cheat even a tiny bit the pain redness & swelling starts up again. I've been doing a lot better since I started taking Theralac (www.theralac.com) which is by far the best probiotic I've found.
Wishing you the best. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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klutzo
Frequent Contributor (1K+ posts)
Member # 5701
posted
Yes, I have vulvar vestibulitis. I am now 55, and have had it since I was 37. I got Lyme when I was 34. It ruined our sex life.
I went to a specialist who did a deep tissue scraping of my vulvar ring,and found that it was due to mutated yeasts, living deep down in my tissues that were causing the problem.
I had Diflucan for it, and developed resistance within 48 hrs. I was told 1/3 of people are resistant to diflucan. Nystatin did not help, since I was resistant to that also.
Over the years, I've taken loads of Probiotics, Oregano oil, caprylic acid, etc., and mostly stuck to an anti-yeast diet. That helps and is necessary, but not a cure.
What finally got rid of about 85% of my pain, was when a holistic NP prescribed boric acid vaginal suppositories twice weekly, along with a gel cap of either vitamin A or vitamin E, punctured with a pin and applied to the vulvar skin, every night or as needed. After 2 months, I was able to cut down to one boric capsule inserted every two weeks for maintenance, and I use A&D ointment instead of the gelcaps now.
I think you will need a compounding pharmacy to make the boric acid capsules, but ask your doctor. They are really cheap. You will also need to wear a light pad for two days afterwards due to possible leakage.
Ironically, my pain has gone down enough that I could have my sex life back, but my poor husband now has severe Peyronne's disease, so we still can't. Good thing we have such a strong marriage.
I am not saying all V-V is caused by yeasts, but it is likely in many cases, since Lyme alters the immune system in ways that make yeast overgrowth likely.
You have my empathy, Klutzo
Posts: 1269 | From Clearwater, Florida, USA | Registered: May 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
What is vulvar vestibulitis? Vestibulitis is a condition which causes redness and pain of the vestibule. Vestibulitis is an inflammation of this skin and the mucous secreting glands found in the skin. The mucous secreting glands are called the lesser vestibular glands. Vestibulitis may include all the area around the opening of the vagina but ismost commonly seen in the lower part.
Vulvar vestibulitis occurs in women of all ages. It can occur in women who are sexually active and also in women who have never been sexually active.
Many women with this problem have suffered physically and emotionally for months or years, have seen a number of physicians, and have tried many unsuccessful treatments in search of relief.
What are the signs and symptoms of Vulvar Vestibulitis?
Severe pain with pressure (for example: biking, exercise, tight fitting clothes ). Vaginal entry such as tampon use or intercourse. Burning, stinging, irritation, or raw sensation within the vestibular area. Vestibular redness The urge to urinate frequently or suddenly How is vulvar vestibulitis diagnosed (identified)? Your doctor or health care provider will examine the vulva and vestibule to identify the common skin changes seen with vulvar vestibulitis. Pain is usually felt if the vestibule area is touched with a cotton tipped applicator. A sample of your vaginal discharge is collected and tested to rule out infection. What is the cause of vulvar vestibulitis? The exact cause is unknown, but many studies are being conducted to determine the cause of vulvar vestibulitis.
The following factors have been associated with vulvar vestibulitis. The following factors have been associated with vulvar vestibulitis:
HPV (Human Papilloma Virus) Chronic Yeast Infections Chronic bacterial infections Chronic changes of pH (acid-base balance in the vagina) Chronic use of chemicals/irritants such as detergents, soaps, spermicides or lubricants. What is the treatment for vulvar vestibulitis? Treatment may include any of the following: Follow the Guidelines for Vulvar Skin Care. Steroid Ointments How it is used: A thin layer is applied to the areas of discomfort. How it Works: Decreases redness, irritation, and burning. Caution: Use only as prescribed by your doctor. Overuse may result in thinning of the skin which will make your problem worse rather than helping it. Trichloroacetic Acid (TCA) may be used in some cases as determined by the severity of the symptoms you have. TCA is a chemical that is used to destroy small areas of the irritated skin allowing new healthy skin to grow in its place. Interferon Injections are used to increase your body's response to infection. Surgery or Laser is used to remove involved skin areas. This method is not recommended in our clinic. Helpful treatment hints:
A and D Ointment How it is used: Apply to the areas of discomfort. How it Works: Protects the skin, decreases irritation, heals, and soothes. Lidocaine Gel may be prescribed after initial treatment. How it is used: Apply to the areas of discomfort. How it Works: Numbs areas before intercourse. Caution: After applying, wait until area becomes less sensitive before intercourse. Burning may occur for a short time (5 to 10 mins.) after the gel is applied. Witch Hazel Pads (TUCS Pads) How it is used: Apply to the areas of discomfort. How it Works: Decreases burning and irritation after intercourse and urinating. Cleansing Bottle Pour plain luke-warm water over the vulva after urinating to remove urine from irritated area. Calcium Citrate Tablets How it is used: Take orally 1200-1800mg. elemental calcium every day. How it Works: Thought to decrease certain crystals in the urine which may cause burning. Cranberry Juice How it is used: Drink an 8oz. glass every day. How it Works: Increases the acid content of the urine to decrease bladder irritation. Limit High Oxalate Foods May decrease amount of oxalate crystals in urine. Oxalate crystals cause urinary symptoms such as the urge to urinate frequently or suddenly. Baking Soda Soak Soak in luke warm bath water with 4 to 5 tablespoons of baking soda to help soothe vulvar itching and burning. Soak 1 to 3 times a day for 10 to 15 minutes. If you are using a sitz bath, use 1 to 2 teaspoons of baking soda.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
Trails, what you posted from your doc hit me to a T; can't believe it!
Yes, you ladies are much to young to be saddled with this problem too! I'm 56. I know I can go back at least 20 yrs. w/severe pain there. Hysterectomy removing the huge cycsts didn't help either. Wishing EACH of you a life without that pain too!
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cantgiveupyet
Frequent Contributor (1K+ posts)
Member # 8165
posted
thanks everyone for your warm thoughts. Somehow from these posts i see im not so alone as i once thought.
klutzo- they did mention the vitamin E yesterday, i think i will try that. I tried crisco last nite and it didnt do much.
i will mention the boric acid. So far no yeast has been found...but i suspect something will be found when they look at the area under the microscope.
thanks again for all of your support
-------------------- "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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