Basically, treatment is for symptoms. No known cure for IC. ( except LYME treatment!! )
PS .. Yes, there's a connection between IC and vulvar pain.. but thankfully not everyone gets both!
Posted by opus2828 (Member # 15407) on :
I have had similar problems and pelvic pain as well and have had treatment with a physical therapist who specializes in pelvic floor dysfunction.
I was told it could be bartonella causing muscle spasms and that was what was causing the pain.
In my case, it was from an unstable pelvic floor. The muscles of the pelvic floor went into spasm causing pain - vulvar, IC, pelvic, lower abdominal.
Sometimes, even lower back pain.
My pain did get worse after starting antibiotics.
My therapist said that if the colon isn't "happy" with the right bacteria, it can spasm and that can cause the pelvic floor to start spasming also.
I know this can be frustrating.
Good luck.
Posted by cantgiveupyet (Member # 8165) on :
opus- have you seen any improvement with PT.
pugs- I agree with opus, please look into pelvic floor dysfunction....also get tested by a gyn for yeast and other bacteria that could be causing the vulva pain.
Like opus my pelvic symptoms got worse with treatment and it was also found I had a vag bacterial infection going on.
Posted by pugs (Member # 20954) on :
Just letting you know I read and appreciated the above responses. I too think it is related to this illness and I am also considering seeing my gyn regarding this. Great support, thanks.
Posted by Lymetoo (Member # 743) on :
There are drs who specialize in the treatment of IC.
Hope we were able to help you!!
Posted by mojo (Member # 9309) on :
Dr. Deborah Metzer in CA specializes in treating both Lyme and Vulvodynia (vulvar pain). She feels that bladder issues are Bart related. She did a presentation last year at the ILAD's conference and my Dr. attended.
I have had vulvar pain since May, 2005, the year prior to being diagnosed with Lyme.
There are many causes of vulvar pain including: hormonal imbalances Gluten intolerance Lyme/Bart Pelvic Floor Dysfunction I/C Food Allergies yeast/mold
This is my absolute worst symptom - I am very limited to the clothing I can wear (I wear night gowns when I'm at home) and it's very frustrating.
I went from a 10 - and being in a fetal position by 6:30 each evening to a 3 or 4 by changing my diet. I drink only low acid coffee (this helped me overnight) and eat a more alkaline diet. More fruits and veggies, no processed foods, sugar, or white "stuff" NO sodas or sugar substitutes. The "low oxalate" diet did nothing for me.
Keeping my bowels regular is very very important for me, too, and effects my pain levels dramatically.
I pray that when I get my Bart under control I will get rid of this pain. I have "talked" to some women here that have overcome it with Bart treatment.
This past week I've been using an ice pack "down there" when I go to bed and this helps a lot. 20 minutes on and 20 minutes off.
Some other tips:
Only white cotton undies - if you can tolerate under pants. Use a non toxic (preferably) laundry detergent (not the Free & Clears that have tons of chemicals in them) Ecos is a good one. No bleach - or if you use bleach (I do) rewash items that come close to the skin) Use toxin free body products - shampoos, soaps, etc (or wash your hair separately from the shower). A very good soap is Kiss My Face Olive Oil.
I hope this helps!
Posted by cantgiveupyet (Member # 8165) on :
mojo- you mentions mold....do you mean mold in the home?
also those that recovered with Bart treatment....do you recall what abx they took that put them in remission.
I find that lidocaine in an acid mantle base really works wonders too...to temporarily numb the area.
Posted by mojo (Member # 9309) on :
You can have mold/yeast in your body, too. I think mold in the home is one way to get it. You can also get it from certain things in your diet (peanuts, for example). Not an expert with the mold yet.
One of the ladies did Rifampin for a while and I tried to find out what the others did but was unsuccessful.
Good idea on the lidocaine - I'll have to get some from my Dr.
Posted by mojo (Member # 9309) on :
TV show on tonight!
ABC's 20/20 Features Segment on Sexual Pain, Vulvodynia Friday, August 7, 10pm ET
Be sure to tune into 20/20 next Friday at 10pm ET, when Dr. Timothy Johnson, ABC News' Chief Medical Editor, will discuss the diagnosis and treatment of sexual pain disorders and vulvodynia with Andrew Goldstein, MD, and Amy Stein, MPT. Dr. Goldstein directs the Center for Vulvovaginal Disorders in Washington, DC, and New York City. Ms. Stein, a New York-based physical therapist, specializes in the treatment of pelvic and urogynecological pain disorders. The segment will also feature the stories of two women with sexual pain, as well as an interview with Christin Veasley, NVA's associate executive director, and her husband Melvin. To check your local listings, visit: http://www.tvguide.com/Listings/default.aspx. Posted by pugs (Member # 20954) on :
Thank you for all the great information. My ultrasound showed my uterus is tipped (whatever that means) and might be putting pressure on the pelvic floor???
This is happening way too much, something is goingon. THanks for the above I'll try and watch it.
Posted by cantgiveupyet (Member # 8165) on :
thanks mojo for that reminder on the show!!!
interesting about rifampin one i havent tried yet....but i do have mold here in my home....mine seems to be more pelvic floor triggered though so i dunno. frustrating trying to figure it out.
Have you tried injections into the skin itself.( i know sounds barbaric, but it has helped me a lot...marcaine and trameel)
get the lidocaine specially compounded in the soothing acid mantle base, i found that the ones CVS carries irritated me more.
pugs did it say the uterus was inverted(i think that is what mine was)
Posted by jennie08 (Member # 17351) on :
Hi Pugs,
I've got IC, too. It pre-dates my Lyme. You might want to research the supplement MSM for your IC -- mine has been "cured" or in remission since 2001 by using 6000mg/day for about three months. I haven't had a symptom since then.
Also, when I had vulvar pain brought on by a chronic yeast problem down there, my doctor had me applying Crisco to my girl parts and it worked great -- very soothing.
Kinda weird suggestion, but it helped!
I guess the Crisco was more for vulvar pain from irritation, not pain from pelvic floor dysfunction...
Best wishes, Jennie
Posted by mojo (Member # 9309) on :
The show ended up just making me angry! It was all about sex. How about the other waking hours when we are in pain but not having sex??? Of course I sent them a letter.
than Dr. Goldstein said it's "easily treated" and also the surgery is simple out patient with a 90% success rate (NOT). My husband asked me why I had to be afflicted with all the weird stuff that doctors don't know how to diagnose and treat???
The crisco sounds interesting. I use Emu Oil and that works well for me.
I haven't had any type of injection but I haven't been to a vulvar pain specialist in a while - I think I will seek out a new one. Since 2005 when I first got the vulvar pain there are more doctors in my area that treat it.
Coincidentally I have a "tipped" uterous too. Hmmm
Posted by cantgiveupyet (Member # 8165) on :
Mojo- the show made me mad too...they made physical therapy sound so quick and simple and it is not....and finding a good PT is so difficult.
does anyonelse have muscles stiffness just below the waist? All my symptoms with the exception of weight loss are below the waist.