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After childbirth did anyone's PFD or IC get worse?

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  • After childbirth did anyone's PFD or IC get worse?

    I have two children and after my second child my IC symptoms and painful intercourse increased ten fold. I feel like crap almost everyday. I have terrible burning in my urethra a couple of times a day. I can barely have sex it hurts so bad. I have always had issues with IC but now it's gotten really bad. I cant sit for more then 15 minutes. I go to the bathroom 25 times a day and twice at night. I have to take either advil pm or ambien to sleep because the pain is so bad. I am filing for social security benefits because my meds are so expensive and I can't work (I'm only 23). My husband is understanding but I'm going crazy. Luckily I have a wonderful doctor but I really need some advice. How can I make this better for myself? I do follow the diet and have for quite a while without realizing it. (I knew what bothered me so I only drank water and ate foods without a lot of acids) Please help! Did anyone else have worse symptoms after childbirth?


    Jessica

    Take: elmiron 2twice a day
    Cymbalta once a day
    Prosed ds as needed
    Lydocaine gel for sex
    Tramadol as needed
    Oxycodone as needed

    Diagnosed with severe IC April 2011

    Suffered for 8 years without a diagnoses
    I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

  • #2
    Jessica,

    There is a lady who works with my specialist who used to suffer Vulvodynia and IC. Her IC was very bad she had to cath to urinate. This started off just as Vulvodynia but progressed to IC after her first birth and both conditions got worse again after her second. She thinks it is because she tore badly with both causing more pain and irritation thus feeding the fire.

    She is now 90% just with PT alone! I think she is a miracle though. She does still follow the diet but no more meds!

    Have you tried PT?

    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

    Comment


    • #3
      I have not tried physical therapy but I have my two kids all of the time and my husband works full time and goes to school. It's very difficult for me to do something two to three times a week like that with my kids. They are 6 and 2. The older one is at school during the day but the little one is always with me. I am hoping the meds will start to work (I was recently put on cymbalta) but if they don't then I will explore physical therapy.

      Jessica
      Take: elmiron 2twice a day
      Cymbalta once a day
      Prosed ds as needed
      Lydocaine gel for sex
      Tramadol as needed
      Oxycodone as needed

      Diagnosed with severe IC April 2011

      Suffered for 8 years without a diagnoses
      I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

      Comment


      • #4
        Claire,

        Quick question. How do you and your husband deal with your vulvodynia? I am finding that is the most difficult hurdle to overcome. What things work for you?

        Thanks,
        Jessica
        Take: elmiron 2twice a day
        Cymbalta once a day
        Prosed ds as needed
        Lydocaine gel for sex
        Tramadol as needed
        Oxycodone as needed

        Diagnosed with severe IC April 2011

        Suffered for 8 years without a diagnoses
        I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

        Comment


        • #5
          I am on the fence about wanting to give birth naturally or adopt.

          Part of me thinks maybe giving birth would stretch my pelvic floor muscles. Another part of me thinks being pregnant would be very painful.
          DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

          Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

          My Pelvic Pain Blog

          FB Fanpage for My Pelvic Pain Blog

          Comment


          • #6
            Jessica,

            It is hard to overcome! Biofeedback and pt loosened my muscles and gave me the ability to relax them so that sex became bearable, then I worked out the following for enjoyable/comfortable sex.:

            Warm bath prior to sex - relaxes pf muscles

            Vit e oil - i have added this recently and it is really helping with that raw feeling.

            vibrator and/ or trigger point work -I don't do the trigger points as much anymore it seemed to set things off for me but for most people it helps prior to sex, I am obviously a bit different) The vibrator helps me orgasm when used on my clit, once I have orgasmed everything relaxes and sex is comfortable.. No orgasm = tight muscles for me.

            'Yes" personal lubricant - bucket loads full

            Non latex condoms

            Lots and lots and lots of forplay - if your not totally into it it's not going to work, and by forplay, try to give touching down there (on you) a miss because you might tense up in anticipation of the pain. I touch myself only, hubby doesn't know exactly where it hurts.

            Prior to biofeedback and PT I was a mess. Couldn't even insert my little finger. It opened everything else up to me. Once I could see that sex was less painful I found was to relax the muscles further.

            I don't think you should attempt sex with out first learning how to correctly relax your pelvic floor. Sex will be painful until you can do that effectively.

            Sex by no means feels like it did prior to vulvodynia because the entire time I have to focus on relaxing my muscles. But i do get enjoyment from it.

            Vaginal Valium may help although I have yet to try it, some use it prior / post sex.

            Hope this helps, PM me if you need more

            Claire
            Originally posted by rosechild12 View Post
            Claire,

            Quick question. How do you and your husband deal with your vulvodynia? I am finding that is the most difficult hurdle to overcome. What things work for you?

            Thanks,
            Jessica
            Take: elmiron 2twice a day
            Cymbalta once a day
            Prosed ds as needed
            Lydocaine gel for sex
            Tramadol as needed
            Oxycodone as needed

            Diagnosed with severe IC April 2011

            Suffered for 8 years without a diagnoses
            I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.
            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


            • #7
              Originally posted by VCNJ84 View Post
              I am on the fence about wanting to give birth naturally or adopt.

              Part of me thinks maybe giving birth would stretch my pelvic floor muscles. Another part of me thinks being pregnant would be very painful.
              VCNJ84,

              I just wanted to let you know that pregnancy and giving birth is the most beautiful, self-fulfilling, and rewarding thing I have ever done. I love my children to death and I have step-children as well whom I think of as my own. I have to tell you though nothing compares to having a life inside of you and seeing that child breathe their first breath as they enter into this world. I love children and think that if you love children and maybe can't have children or just want more children adopt, adopt, adopt. Adoption is a wonderful thing and every child needs a family that loves and cherishes them however if you can have children and want them don't rob yourself of a wonderful experience because of a disease. This disease is horrible and I wish it never crossed my path but I would never give it the satisfaction of winning. If you want something go for it and don't let IC get in the way because then it has power over you. Nothing and I mean nothing should have power over you but you!! Children are a blessing in every color, size, and ability. Pregnancy and child birth are things in my life I will never regret and have added so much joy to my life. The happiest days of my life are my marriage, finding out I was pregnant, and giving birth (not necessarily in that order). Even though after my last child things have gotten worse they probably would have anyway and at least now I have a beautiful baby boy to show for it. (I had no issues with my first so you may not either). Please do not rob yourself of something so beautiful and special as that.

              Hope that helps a little message me if you ever want to chat,
              Jessica
              Take: elmiron 2twice a day
              Cymbalta once a day
              Prosed ds as needed
              Lydocaine gel for sex
              Tramadol as needed
              Oxycodone as needed
              Orthro Evra Patch continuously
              Diagnosed with severe IC April 2011

              Suffered for 8 years without a diagnoses
              I'm 23 and have always had issues but when I was 16 things got much worse. I saw urologists, pediatricians, and gynecologists and nobody had any answers it was either in my head or an infection. Finally found a wonderful doctor who diagnosed me with IC.

              Comment


              • #8
                Originally posted by VCNJ84 View Post
                I am on the fence about wanting to give birth naturally or adopt.

                Part of me thinks maybe giving birth would stretch my pelvic floor muscles. Another part of me thinks being pregnant would be very painful.
                VCN, I am right in the middle of this being pregnant right now. I want a child desperately but it is still frightening to think about what birth may mean for my IC. I suggest talking to your OB/GYN and discussing your concerns and options. Do some research about birthing techniques and see how you feel about those.

                I am looking into the option of having a C-Section. My OB and I are discussing this as a way to help avoid the strain birthing can put on the Bladder and Urinary tract that can often lead to issues with incontinence and pfd for many women after natural vaginal delivery. This may be something you would like to research as an option as well if that is your concern.

                If you are more concerned about pregnancy with IC, the best suggestion I can give you is what I did myself. Take your time. Do LOTS of research about medications, treatments, IC and pregnancy. Speak to doctors and actually assemble yourself a team of them who are specifically aware of your condition and your desire to get pregnant. Make sure they are all supportive and dedicated to working with you to keep you as comfortable as possible through your pregnancy and your baby safe. If a doctor makes you feel uncertain about your ability to get through it, that is not a doctor you want on your team! For me, I have my OBGYN, my pain specialist, and my Urologist working together with me. There are options out there for a mother with IC. You just need to give yourself a good team and lots of time to research things.

                Once you have your team and have done research on pregnancy safe options, then you should go on and pretend you are pregnant. Come off your medications and treatments that are not safe for pregnancy and get on medications and treatments that are. Remember some medicines are not safe for the first trimester, but are then ok in the second and third. So be willing to consider time frames and if you need to make changes to medicaations as you move through your pregnancy, try this as well. Make sure these treatments and medications work for you before you add pregnancy to it. Once you find treatments you know are safe and you know how long they work and that they -do- work to control your pain it will make you feel a lot more confident going into pregnancy!

                I will also add that I think adoption is a beautiful and wonderful option as well. One I also considered and may still consider for any further children. There are definitely many wonderful children waiting for homes out there with caring people. I think no matter what choice you make with this, you will be happy as long as you are true to yourself and what you want out of the experience of motherhood.

                Comment

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