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Do any of you not feel any pain in your bladder but in your vagina?

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  • #16
    I guess I will start the instills, I was hoping not to have to do that I hear they are painful. My doctor says they can be, but he thinks that they help. He says that his other patients who do them smell bad afterwards for about 24 hours. Thank you, at least now I have a plan!

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    • #17
      Testing for IC

      Hi,

      I have been suffering from all the symtpoms of IC for many years but it recently got very bad to the point there are nights I get up at night up to 15 times to pee and continue to have a bothersome urge to keep going. I have pelvic pain that lasts long hours. I am able to ignore it at times but it keeps me up at night. The Dr. I saw delayed testing for IC because he said "he hates to diagnose this disorder" So he kept me on antispastic medication for people with incontenence for an entire month. I have been feeling very sure I have IC and after I went back to the Dr he agreed it very likely is. He performed a test where he introduced a catheter inside the bladder and tested some liquids. If it burned it would be IC. It did not burn. He said the likelihood of it being IC is lower. However that is not what I have been reading on the internet. He plans to do a cystoscopy next. I have read this is a difficult thing to diagnose. I don't have symptoms of any other disease. I have read there are no effective treatments for it though and that is scary for me. I am terrified this thing gets worse. I have intermittent symptoms. It worsens with stress or when I'm constipated. I have IBS too. I have pain in my clitoris at times, inside the vagina. It feels like burning at times. I feel a painful pressure in the clitoris and at times the pubic bone. It some times feels like the bladder is being pulled inside. Symptoms worsen when I am scared or panicky. So if anyone could give me infomation about diagnosis and treatment I will be very grateful. Oh! and I am sure it isn't a bladder infection. I have had several of those done in the past two years and they are always negative.
      Thanks everyone.
      Clia

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      • #18
        don't give up

        Your reactions to being frightened is very normal - I was petrified and didn't believe that I would find something to put IC at bay for most of the time (I still have some periods of flaring - but I really can deal with those).
        I have IBS and had the vaginal, clitoral, bladder, urethral pain, even pain from the interior of my legs to bottom of feet). My doctor thought I had an IC variant (not the worse he saw - pity anyone who felt worse than me at that time)....anyway, Elmiron (much higher dose at 600 mgs x day vs 300 mgs which provided minimal improvement) and an antihistimine 75 mgs x day - felt like a drugged out zombie ( but which I believe helps deal with the mast cells in the bladder and stress - stress triggered mine badly seemed to do the
        trick. For most of the time (still have some minor flare ups) I'm down to 200 mgs x day Elmiron and 25mgs a day antihistimine (atarax or generic brand).
        HAVE HOPE - many people with IC finds something (might not be my combo of meds.) that will help them. At present, yes, it's not "curable" but can be managable for most people. I give thanks to God every day and send my hopes/prayers for your being able to obtain relief...MANY people do find quite a bit of relief, and it doesn't progress. Be encouraged!

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        • #19
          same pain

          Hi Clia,

          I also have been experiencing the same pain, exactly how you describe it. This morning I broke down crying because I can´t take anymore!! I have to take Ultram 50mg for the pain and I´m sick of taking pain killers every day, I´m afraid of getting addicted to them. I had a hysterectomy and hydrodistention 4 weeks ago and have been miserable ever since. I don´t know if it´s part of the healing process or what. Does anyone know about how to manage this pain.
          Please help!!!
          Mo

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          • #20
            Hi Moca

            I am so sorry you are in so much pain. I can identify. About four weeks ago I fell into a deep grieving mode. My Dr hadn't diagnosed IC yet but I read so much about it I felt very certain it was. I coudn't sleep well at all. I would wake up constantly. If I was lucky I would sleep two hours at a time. I was miserable and thinking about death a lot, I would think about becoming completely disabled. I thought I was going to lose my home, my car, my independence. My Dr said there is no treatment for that. So I kept hearing that in my head. He said most insurances do not like to take patients with this diagnosis. I was ****** at the Dr and terrified on top of being in constant pain and having unbelievable frequent urges. I have been feeling somewhat better. Not perfect yet. I am thinking I might switch Dr's because I don't like this one's attitude. He really hasn't been all that supportive. I do hope you find the treatment that will work for you. You will be in my thoughts. Send me messages whenever you need support/talk and practice loving yourself, taking the best care of yourself.
            CLIA

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            • #21
              Thank you very much Clia, you´ll be in my thoughts as well. I sometimes feel as if this condition is taking over my life. I found a wonderful doctor who is very patient and understanding, not to mention one of the best in the field. I live in Mexico City and he is in Houston, its not easy for me but whatever it takes to find relief from this terrible pain. As I mentioned before, he just did a hydrodistention and told me to go to pelvic physical therapy in a week, he promised it is going to make a big difference in my well being, I really hope so.
              Hope you feel better too,
              Mo

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              • #22
                HI again

                You live in Mexico CIty? So do you travel to Houston for treatment? Are you there on business? I am originally from Mexico City. Well you keep up the good work Moca. My IC is not as bad lately. I have flare ups. It is still hard to deal with. I wake up at night anywhere from 4 to 16 times. During the day I go up to 15 to 22 times. I have the burning, irritation, sharp pains in the vagina and clitoris and vulvar area. I am also having other symptoms with my intestines, my nasal passages and bones. These last symtoms resemble fibromyalgia. I seem to have issues with inflamation. I read there are people who have issues with this, these seem to be related to a genetic difference. Does anyone here have symptoms like these? Hope you feel better Moca

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                • #23
                  I´m so sorry to hear about your other condition (as if one weren´t enough!!). I hope you can get it all under control.
                  I travel to Houston only to see the doctor, I´ve been using all of my flyers miles in order for the trip not to be so expensive. Now I seem to be stuck in feeling the same every day, not better. I´m not sure anymore if the pain comes from my bladder (I do have ic) or the vaginal area just like you describe it and that at the same time gives you a sense of urgency.I go through the day feeling crappy unless I take my pain killer and I´m starting to feel as if I have to start getting used to this way. I called my doctor today and I haven´t been able to speak to him, he´s always busy so I talk to the nurse, but this time I said that I expect to talk to him tomorrow, pretty frustrating! It´s so much different here in Mexico, you call your doctor and he calls you back pretty soon. They say he´s one of the best with ic so I have to cope. To bad there aren´t any good doctors here for ic.
                  You said you lived in Mexico? For how long and how long ago? Maybe you know what I´m talking about regarding doctors.
                  Well, I really hope you feel better and I send my best,
                  Mo

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                  • #24
                    Hi

                    I am Mexican. I was born in mexico and lived there until age 13. I visit every two years or so. What is pelvic physical therapy. I am getting a cystoscopy tomorrow to see how bad the bladder is. I don't think it is too bad because I did well on a first test. However the pain tells me it isn't as good as it was a few years ago. Do you know if this thing tends to progress. I know there is no cure but I want to know if I could become disabled. Are you able to work?

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                    • #25
                      Hi,
                      I don't know if this will help....I was having a lot of vaginal pelvic pain. I felt like I did after having babies. Sort of like my bottom was going to fall off. Plus lots of vaginal burning and some deep pain as well. Finally had my hormones checked (hyster 2 years ago but kept ovaries) and found out I was totally in menopause. My estrogen was extremely low. Since starting the patch the vaginal burning and discomfort is going away. My gyno said that low estrogen can cause the whole crotch to feel miserable. So hormones really can add to the problem. Get them checked if you think that might be adding to your pain.

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                      • #26
                        Thanks for that information

                        I am going to see my Dr today. I will mention that. It could be hormones hah? I have had blood tests done in that past and they look normal but I'm not sure that they tested for estrogen issues. Are there other symptoms for that including the pain down there? I do tend to get facial hair, lip and chin. I have had light rays treatment for that but they keep coming back. I was told that is a hormonal thing. Thanks for the information.

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