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New here, bladder pain and Vulvodynia. Please help

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  • New here, bladder pain and Vulvodynia. Please help

    Hello to fellow sufferers,

    I hope you are not all in too much pain today.

    I could really do with some advice on the above conditions, I have been suffering from Vulvodynia for 7 months following a series of yeast and bladder infections. It has got to the extent where I cannot wear jeans and can just about tolerate underwear. I wash the area only using water or aveno wash, wear only cotton underwear, use sensitive washing powder and change my underwear twice a day. Sitting is so painful, the pain is with me 24/7 and what makes the whole situation worse is my Husband and I got married only 2 months before all this started. I am only 22.

    for the past 4 months I have been going to see a Vulvodynia and PBS specialist once a month. His method is Biofeedback and trigger point work as well as massage, tummy breathing etc. I am sure many of you are familiar with this type of treatment. This man is truly a godsend. He has helped me go from not being able to insert a finger to being able to progress to the largest size dilator and actually understands the pain we are in. However this has not reduced the amount of daily pain I experience what so ever, he said this should have been happening by now. Although I know how to control the muscles of the pelvic floor now, and can relax them, the pain just does not ease. Would anyone have any ideas as to why this might be? I use the biofeedback machine twice a day and practice with the dilators twice a day. I have taken up Yoga and do various stretches as per the 'Heal Pelvic Pain" book by Amy Stein... To no avail. I also take 20mg of Endep for the burning pain that seems to have spread to my feet and right arm. This works extremely well for the feet and hands but has done nothing for the Vulvodynia. I am travelling to Adelaide (South Australia) from Qld to commence some intensive therapy with the man I see on a monthly basis next week and am scared it will not help ease the horrific pain.

    As of about 3 months ago I have been experiencing bladder pain and frequency with little warning. The Endep seems to work for the ureather pain for the most part but the frequency is getting worse. I also experience rectal pain and little warning when I need to go to the toilet.

    I can not express my frustration with the medical profession enough. In just the first 3 months I saw 6 Doctors and 4 Gynaecologists before I got a diagnosis of Vulvodynia. I have finally found a doctor that is willing to prescribe the Endep for me and actually believes that Vulvodynia is a medical condition...Most of the doctors told me I either had yeast or it was in my head.

    I manage to have sex with my Husband on occasion, stretching with the dilators helps but he feels frustrated with this as we have to do 'warm ups" before. It is in no way a pleasurable experience for me, but doesn’t cause agonising pain. Before this all started we had a wonderful sex life....I fear this condition may tear us apart, despite him telling me every day he loves me and will never leave.

    Someone please tell me there is an end to my pain. I do not know how long I can live like this. No sex drive, constant pain 24/7 and even worse at work (sitting) needing to go to the toilet all the time....It just seems to be one thing after another....no progress, just going backwards....

    Someone please give me some advice that I don't already know. I am sick of being told the same things by doctors.

    Sorry for the long post I am very distressed.

    Thanks,

    Claire
    TMJ Dysfunction 2009
    Vulvodynia and/or PFD 2010
    IC, based on symptoms alone 2010.
    PCOS March 2012

    8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

    Currently using: IC Diet...pain meds as needed
    Medications / treatment tried and discounted:
    Fluconazole 150mg 1 per week for 6 months (yeast)
    Endep 25mg - 4months
    Lyrica 75mg - 2 months - FLARE
    Oxytrol patch - I think this caused retention.
    Countless creams, lotions and potions.
    Cystoprotek - no change in symptoms
    PT - for 1 year
    Various herbs and supplements

  • #2
    Welcome, have u seen a urologist yet? they can diagnose you with IC. It is usually done with a potassium sensitivity test or a cystoscopy and biopsy done under anesthesia. IC can cause VV and people with IC can also be prone to UTI's and yeast infections. There are people with IC who are prescribed elavil for IC and for VV and find that it helps some. Also lubricants may help. If u browse the site u can find lots of info for treatment options. good luck
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

    Comment


    • #3
      Hi Claire,

      Sorry you're in such pain! I don't know if this is info you already know or not but for the VV have you looked into a low oxalate diet and are you taking calcium citrate with meals and mucinex daily? Do a little research into this by googling VV along with these topics, it has helped alot of people with VV. Has anyone suggested lidocaine gel? One of the theories of VV is that people who have it have high levels of oxalates and the diet, the citrate and the mucinex (brand name) lower those levels.
      I had VV symptoms for about 2 years and now they are mostly gone. My gyne would just say everything looks fine...it was annoying. I was more tender, like it hurt to be touched. Yours sounds much worse. I had a hard time sitting too and riding a bike was out of the question. Inserting a tampon hurt also.
      Trying these might help you too.
      Maybe others with VV will chime in here.
      Last edited by cmclien; 02-12-2011, 10:09 AM.
      Cindi


      Gelnique for frequency/urgency - works great
      Macrobid after sex
      Prilosec, continuous birth control pills
      synthroid .088mg, mucinex-d, restasis

      Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

      Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

      IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
      AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
      AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
      Great treatment flowchart on page 19 of the pdf

      Comment


      • #4
        Hi Claire,
        So sorry you are going thru all of this. I see that you are already taking a low dose antidepressent, are you taking anything else? Like the others said there are other treatments for vv. If does sound as if you have some other things going on as well though. Are there any specialists in your area? It is hard to find treatment here in the states, not sure what it is like where you are.
        I have the book you are referring to, I wanted to tell you about another book that is sold on this site as well. It is called Ending Female Pain and it is by Isa Herrera, I have that one too. I love it, it is a new book and she is a therapist in New York City.. She is excellent and has a lot of tips and other ideas for things you can do to help yourself. From reading her book and what you have said about your condition, I would say that you would benefit from her techniques. I can't say enough good things abou this book, I love it!
        I hope that you are able to find some relief soon. I am sorry I don't have any great ideas to share with you. Just know that you are thought about.

        Keep us updated on your progress.
        Sandra

        I just wanted to add that with the buring spreading to your feet and hands that sound neurological, have you seen a neurologist? Perhaps they could help you with your pain. I would persue all avenues if you are able to do that. Especially since your pain seems to be spreading through your whole body.
        Link to the patient information, everything from What is IC? to Disability
        http://www.ic-network.com/patientlinks.html

        American Urological Association Clinical Guideline
        Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
        http://www.auanet.org/content/guidel...ent_ic-bps.pdf

        Comment


        • #5
          Originally posted by cmclien View Post
          Hi Claire,

          Sorry you're in such pain! I don't know if this is info you already know or not but for the VV have you looked into a low oxalate diet and are you taking calcium citrate with meals and mucinex daily? Do a little research into this by googling VV along with these topics, it has helped alot of people with VV. Has anyone suggested lidocaine gel? One of the theories of VV is that people who have it have high levels of oxalates and the diet, the citrate and the mucinex (brand name) lower those levels.
          I had VV symptoms for about 2 years and now they are mostly gone. My gyne would just say everything looks fine...it was annoying. I was more tender, like it hurt to be touched. Yours sounds much worse. I had a hard time sitting too and riding a bike was out of the question. Inserting a tampon hurt also.
          Trying these might help you too.
          Maybe others with VV will chime in here.

          First off to claire... It's horrible that you are going through all this. I hope that you can find something that helps take away at least some of your pain! I'll keep you in my thoughts and prayers.

          To cmclien
          Thanks for posting. I'm wondering now if I have vv. More on that in a sec. The calcium citrate... is it acidic?? It sounds really similar to citric acid... which causes me a ton of IC pain. I'd really like to try it though if it might give me some relief.

          Last month during the beginning of my cycle, I had horrible, shooting, stabing pains in perineum and surrounding areas that seemed to correlate with my cramps (my cramps are already usually incapacitating). I was literally sobbing and couldn't walk. This month, I thought maybe taking a laxative before things got bad might help... and I was hoping it just wouldn't happen anyway. It did happen and laxatives did not help as far as I can tell. I've been dealing with excruciating pain every time my cycle starts for years, and with this new symptom, it's just the last straw. I'm to the point where either my husband is going to have to get me pregers if he wants kids, or I want to get a hysterectomy... like ASAP. The only problem is I'm mid twenties, so not sure if I can find a dr who will do it since I haven't had any kids. Add to that I'm married and my husband doesn't want me to get a hysterectomy... and no idea if I can find someone willing to do it.

          Anyway, thanks for posting. If I have VV, it sounds really similar to yours. I don't have any burning, it's just extremely tender/sore, and hurts on contact. Tampons are torture... but I can't really live without them or I'd have to pretty much just live in the bathroom for a few days.

          These are the days I wish I'd been born a guy.

          Comment


          • #6
            Evalynn,
            It is not at all like citric acid. It is just a more absorbable form of calcium which is easier on the stomach, tends to cause less constipation if you have that problem too. The citrate part binds to the oxalates so your body can get rid of them. I think there are some people here who take it everyday too. Calcium tends to neutralize acid (think of tums, prelief, almost anything you buy for indigestion.) Unfortunately you won't know until you try. Have you taken calcium supplements before without problem? This is just a particular type of calcium that might help with for VV (citracal is the brand name but there are other generics, I only buy that one because I like the "petites" they are smaller pills.
            Maybe start a new thread on VV and calcium citrate and see who responds since this thread started out with a different topic.
            The funny thing is I could never pin point why I was sore, it kind of would come and go though it was mostly there. Now for months it has been mostly gone. Of course I guess thats true with the IC, why did it ever start?
            The recommendation is calcium citrate with each meal. This would replace your normal calcium supplement if you take one.
            Good luck!
            Cindi


            Gelnique for frequency/urgency - works great
            Macrobid after sex
            Prilosec, continuous birth control pills
            synthroid .088mg, mucinex-d, restasis

            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
            Great treatment flowchart on page 19 of the pdf

            Comment


            • #7
              Thank you all for your responses and advice!

              cmclien: I have briefly tried a low oxolate diet for about a month but I have not been strict with it, I did not use calcium citrate with it though....I have gone back to eating the occasional food with oxolate in it and note that it does not affect my pain if I eat the stuff or not...However perhaps I did not give it long enough to get out of my system? Lidocane and Xyolocane burn me. I know with some people it burns for a little then goes numb....I just burn Did yours simply go away because of the diet and calcium citrate or did you do other things as well?

              Sandra: No I am not taking anything else. I refused the Endep for months because the Vulvodynia specialist said it doesn't really do much for vv. I only started taking it because I developed bladder symptoms and the burning in the hands and feet. I didn't have this when I started biofeedback etc... I was a perfectly happy health 22 year old until I got a yeast infection! Thanks for the recommendation on the book. What teqniques does Isa Herrera use? In the Heal Pelvic pain book I have it mentions that pain from the pelvic floor can potentially enter the central nervous system "central sentersization" - Which my osteopath has diagnosed me with. Do you think this could be a possibility? I am due to see a Neurologist on the 21st March however I fear there is not much more they can do except fill me with another drug. I want to get to the cause of the problem not just treat symptoms. I find it very strange that I was fine before the vv started, now I have all these other things going on. Also a question on the antidepressant. Every time I get used to a dose every two weeks or so it seems the pain in my hands and feet comes back. Then when I up the dose it goes away again. I can't just keep upping the dose surely?

              Evalynn: I can't imagine having to be in such pain every month, that must be terrible for you. I am sorry you are thinking of such extreme measures to help your pain. I suppose though, when you suffer like this you will do anything. I am thinking of you.

              Needsrelief: no I have not seen a urologist yet. I am sure it is the same in America, but I just don't have the funds to keep going from specialist to specialist as they all cost money... I am told that the treatments for IC are very simalar to treatments for vv. In my case I believe the vv caused the bladder pain not the other way round as I had no bladder symptoms prior to vv. I follow the IC diet best I can and if I eat something naughty drink bicarb which settles it down abit. The clitoral and ureather pain are the worse kind of pain in the world...Like I have a toothpick stuck up there (sorry for description.) the endep seemed to be working well for this pain, but I think it is time to increase the dose again...

              I fly to Adelaide on Tuesday for my 5 day intensive treatment. I hope it will bring relief! I have been waiting and saving for this for months....Health Insurance does not cover it. If anyone is interested I am seeing Marek Jantos www.vulvodynia.com.au (read the case studies). Marek has helped a lot of people with bladder pain also. I hope and pray to get better with his help.

              Thank you all so much for your kind words, you have brightened my day
              TMJ Dysfunction 2009
              Vulvodynia and/or PFD 2010
              IC, based on symptoms alone 2010.
              PCOS March 2012

              8 month remission following the birth of my beautiful daughter Imogen Rose 25/12/12....currently flaring and hoping to get remission back, life without IC was amazing!

              Currently using: IC Diet...pain meds as needed
              Medications / treatment tried and discounted:
              Fluconazole 150mg 1 per week for 6 months (yeast)
              Endep 25mg - 4months
              Lyrica 75mg - 2 months - FLARE
              Oxytrol patch - I think this caused retention.
              Countless creams, lotions and potions.
              Cystoprotek - no change in symptoms
              PT - for 1 year
              Various herbs and supplements

              Comment

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