vulvadynia???

Discussion in 'Fibromyalgia Main Forum' started by bobolee, Jul 8, 2003.

  1. bobolee

    bobolee New Member

    I have been battling a sever UTI for several months. After 2 rounds of cipro a urine culture finally showed a staff infection. My Dr says this is very rare, but at the time I was having a severe FM flareup and the only thing I was able to do was go to warm water therapy. I also used the hot tub. I believe that is where I picked this up. Anyway, by the time I got the proper course of antibiotics, I was in terrible pain in my whole groin area. The UTI has cleared up, but seems to have triggered bladder spasms, and now I think I am realizing that I am having a bout of vulvadynia after much researching the net. I am very sore yet and tender. There is some burning at times. I am just uncomfortable sitting for any length of time or wearing anything but sweats or soft cotton shorts. Does anyone have any suggestions for relief of this condition??? I didn't know it can be part of FM. HELP!
  2. klutzo

    klutzo New Member

    You need to find out what is causing it. Sometimes there is an organsim there that can be treated. Sometiems it is just our extra pain sensitivity (or so they claim, I am not sure I buy this).
    Find a GYN who knows something about this (try a local University Hosp.) and have a deep tissue scraping done. Mine showed that I have mutated yeasts living deep in my vulvar tissue. I am about to embark on several more months of Nystatin treatment in hopes it will help.
    In empathy,
    Klutzo
  3. Mikie

    Mikie Moderator

    You need to find a gyno who is knowledgeable in this. In the meantime, don't soak in hot tubs or take baths. This can exacerbate the problems.

    Not to be indelicate here, but for women who have this who are sexually active, ejaculate from the male partners is irritating for this condition. Latex condoms can also irritate the condition. Withdrawal prior to ejaculation may help a lot.

    Love, Mikie
  4. kredca4

    kredca4 New Member

    I went through I don't know how many Doctor's trying to find out what was causing all the Pain and other symptoms I ws having.
    I found the Information on the website, printed it out, and took it to my GYN, at my Poke and Grope Physical. Even with her small hands, I screamed so loud I know they must have heard me. What I don't like, is when the Men go to the Doctor with their Pregrant wive's, and you know they saw you go in, and that Your the one Yelling, lol.

    I also have yeast infections when I take antiobtics, and that really makes it rough, then I have a Flare about 4 times a year with the Herpes. No wonder the Hubby can't touch me, poor baby, but he's a real champ about what is happening with me. SO far he show's no signs of Herpes, so we are wondering how I got it. I worked for a Medical Courrier, and I think I may have gotten exposed, through an accident I had at the Hospital in Pasadena, they were doing some Clinical studies back then, 18 years ago.

    I would give you some websites, but you probably have already been there, since you said you had checked around the internet.

    Good Luck to you,
    kredca4/sharon
  5. bobolee

    bobolee New Member

    OOOPs, I have been taking hot baths 2x a day! With the UTI, the urologist recommended it - can't win. What really drives me crazy is when I get a tender spot just from wearing jeans. I have tried vaseline, neosporin, etc. Little relief. I wondering if I should try the neosporin with pain relief. Has anybody tried it , or have a suggestion. I am FRUSTRATED. I try and do everything is am told, and it sometimes adds other problems. I think I would rather be a guy. (How about vagisil???? Does it help??)
  6. Mikie

    Mikie Moderator

    Soaking in baths can cause UTI's. It's easy for bacteria to enter the urethra.

    Anyway, there is some cream which will numb the areas where there is irritation. That is why you need a good gyno who knows this stuff. Good luck.

    Love, Mikie
  7. Lynda B.

    Lynda B. New Member

    I think some of the info you have above is not quite right but I do not want to dispute anyone. This is another disorder that can have individual symptoms depending on who has it. I have had it for years and do see the GYN that is considered a specialist in central Texas. She is not per say a specialist but all who have it go to her. She became a specialist because all of the gyns around here did not know what to do and she became very proactive and she sees almost everyone around town with this.

    I rather do this through a private e-mail. I will give you my e-mail address. I would feel more comforatable that way describing all of the things you can try to help. You just try one after another and I bet something will help. I can almost gaurantee it. It may not go away completely but I can at least provide you with some ideas for immediate relief.

    Also, please let me know you are from the FMS board or I will delete it since I won't recognize your e-mail address.

    I will delete my e-mail address in a few hours.

    Lynda B.
    [This Message was Edited on 07/09/2003]
    [This Message was Edited on 07/09/2003]
  8. Banka8

    Banka8 New Member

    I was having symptoms of vulvadynia 16 years ago just before I developed CFS. In fact I went to the doctor with pain in lower abdominal area and ovaries and bladder and I was prescribed Flagl (metrodyazonal) excuse my spelling of these meds I know they aren't right. It cleared up in a few days then I got the flu 5 days later and I haven't been well since. Anyway after that I would get infections all the time. In fact the pain started to go into my hip bone and it was very sore to the touch. I started to take Active B12 (Dibencozide.) They are tiny pink lozengers that you put under you tongue. The company Country Life makes them.
    I think it was more than a coincidence that I had this horrible problem for years and within two or three weeks of taking it my symptoms went away. I actually stopped taking it for a couple of months and my symptoms came back. Now I have one every day and I am pain and symptom free. I read somewhere that taking B12 can raise your immumity by 50 percent. But alot of people cannot absorb the B12 in pills because their stomachs lack something called intrinsic factor. So the lozenges are already partially broken down. By the way I didn't even know that what I had was vulvadynia until last week. I had never heard that term before. I didn't start taking the B12 thinking it was going to help my vulvadynia I just thought it would help my fatigue.

    That's my two cents worth.
  9. bobolee

    bobolee New Member

    i was not home to get on the computer last night. I am very interested in what you have to tell me. Please resubmit your email address. I will check throughout the day.
    Bobolee
  10. Mikie

    Mikie Moderator

    Came from my daughter's experiences with this condition and the treatment from her excellent gyno who treats her. She also suffers from interstitial cystitis and suffered numerous UTI's growing up.

    This is undoubtedly like everything else we suffer from. What works for one may not work for everyone. The advice offered by our members is based on opinion and experience. It is not to be considered professional medical advice and that is why I always recommend people seek out knowledgeable docs.

    We often get a lot of advice when we ask because our members here are so caring. We need to decide which advice we will take and know that it may not work for us even if it has worked for others.

    Good luck with this and let us know how you are doing.

    Love, Mikie
  11. Shirl

    Shirl New Member

    This is totally out of the ballpark for me, I have no probles like this.

    But my daughter in law did. The very first thing the doctor told her was to quit using tapons, quit wearing tight jeans (or any tight fitting shorts or pants), no colored or scented toilet paper, perfumes, dusting powder (unless it was cornstarch based), no deodorizers on her or the toilet, no bubble baths, no perfumed douches (in fact he did not want her to douce at all during the flare up), no perfumed soaps, encluding her soap powders for her clothes, only cotton panties (white only and to washed them if they were new before she wore them), and no panties when she slept. Also what Mikie said about the sex part. He recommended no sex till it was healed, as the sperm is irritating, plus the friction caused it to be more sore.

    He recommended she wear dresses/skirts, and nightgowns, not pj's untill the infection cleared up. Her sheets had to be changed everyday also.

    This is a long list, but thats been nearly twenty years ago, and for some reason I remember it so well!

    His reasoning with the tight pants and shorts was that women who wear these type of clothing all the time stop 'air' from getting to their private parts, which causes bacteria to grow no matter how clean you keep yourself.

    But you do need to find a very good doctor in this field to help you as for medication.

    Shalom, Shirl
  12. kredca4

    kredca4 New Member

    Here's a few tips, try wearing Boxer's if you must wear underwear, I don't around the house, only when I go out.
    Then I use Lanacane Ointment, you can apply this directly on the genital area, also I sometimes use, Xylocaine it's a jelly and I think it's 2%, it will Freeze the area, helps to really Numb it that's for sure.

    Also Drink lots of water, I know I don't drink as much as I should, but then I would have the "Big D", and that's just as bad for me.

    I think it also depends on what is causing the pain problem , like some irriitanting the tender skin, like a recurring yeast infection, or an infection of the cervix, Inflammation again has a part in this Condition.

    I'm allergic to Rubber, elestaic, etc. so a condom would be beout of the Question for me, If one was needed. for

    Wow, I'm really running across a lot of our condition's, that are related to Inflammation. hmmm? Now here's another one that I had forgotten to add to my list.

    I hope you can see a Dr. that can help you, because this is not something that you want to let go untreated. It could have a lot of Cause's, once you find out, then you can start the Treatment that , hopefully will help you.

    Sincerely,
    kredca4/sharon
  13. Oh I really feel sorry for you, I had this same thing years ago. I went to several gyn's , specialists, etc. with no results . Finally I was sent by a internal med. dr. to a dermatologist. It was soooo embarassing to go to him for this problem. He did swab cultures and it came back ok. So he had me under those special lights they had for a few times, but the only thing that ever helped it was something called Acid Mantle cream. You have to ask the pharmacist for it usually. It is used for returning the skin to its natural acidity. It is very inexpensive (or was then) and all you do is use it sparingly several times a day after urinating. It saved my life, and sanity. It was horrible. Give it a try, remember use a little on the sore area sparingly. Also try and go without undies and air out the area if possible, when home alone, or wearing a nightgown, or whatever. Good luck!
    Fibrobutterfly
    [This Message was Edited on 07/11/2003]
  14. todayisagift

    todayisagift New Member

    I had this same problem too it was one of my first symptoms of FM. I had so much horrible pains in that area going all across my lower half it was unbelievable and at times excruciating. I went to the ER once and they did a Pelvic Exam and kept telling me I had STD's and I did not because I had only been with my fiance and we had only been with each other. Of course all the tests came back negative and my Gyn also did all the same tests and everything would come out negative. I had ultrasounds of my pelvis, abdomen. I had no cysts, no cancer nothing! The pains come and go, it used to be really bad but it has calmed down a lot I suspect from antidepressants and things like that the muscles are probably relaxed. I still have a lot of problems with itching at different times of the month. I too get a yeast infection whenever I take antibiotics and they would always give me diflucan. But now I will be itchy at various times for no reason and it will almost just go away but there must be a reason for it, is this related at all or does anyone else experience this?
    -Megan
  15. todayisagift

    todayisagift New Member

    I forgot to mention I also have IC as well, that was a big part of my pelvic pains. I tried Elmiron but it gave me migraines so I stopped it. My urologist wanted me to have a bladder distention under general anesthesia but his office never called me to schedule it and then it was time for me to go away on vacation so I didn't have time to get it done and it hasn't bothered me lately so I'm not gonna go through all that right now. It's a traumatic procedure.
    -Megan
  16. Bumping this up for Bobolee