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anyone had these embarrising symptoms

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  • #16
    thanks mary ill go read that now. and maybe ill ask my doctor if i can go on that drug next time i go. are you a christian? i do believe in pray myself so thank you so much and i know God will heal me of this im not giving up hope. thanks so much for your help i appreciate it.

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    • #17
      shelley thanks for the post [img]smile.gif[/img] yes kind of pins and needles there but more like when you panic and get that cold and hot flush that is more what i get. but after sex i have like nerve jolts go down my legs from my clitoris lol i think i have a very sensitive vulva. so did you have exactly what i feel for years i cryed thinking i was the only one feeling this worse feeling and sooooooo embarrising. well ive learnt not to be so shy as before to get some help from this. i do sleep much better now but if i woke up and walked around i would want to pee and then after peeing i would get worse again. so i dont move in bed lol. if i pee and sit on the toilet and keep the urethra open kind of it helps a bit but i dont do that because it makes it worse when iget off and then i have to orgasm because i dont know what to do with myself. im so glad other girls know this is not a nice feeling and im not a weird sexual person lol.

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      • #18
        shelley are you okay now with this. and how long did you have this fowl feeling for? was it everyday mine started out only at night and now its all day every day [img]frown.gif[/img]
        hey my friends are emigrating to new zealand next feb. two hours from auckland. is it nice there to live? is it like aussie?

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        • #19
          Mary F.
          how can I send you a private? can I email you?

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          • #20
            Hi Debbie, I know exactly what you are feeling. I have had this uncomfortable, irrating feeling for a long time now. I also live in Australia(Perth)
            I feel like my uretha is inflamed and burning all the time, its especially worse after I urinate. I have tried everything, anibiotics, anti-depressants,underwent a very painful cytoscopy, all to no avail.It doesn't sound like IC, it sounds like you have "urethritis", a bacteria bug in your uretha, which is hard to detect,with normal urine samples. Try visiting a natropath, or homeotherapy, they will give you some herbal treatments or try asking your GP first, and see what he thinks,I know there is a antibiotic "Doxycycline" which is supposed to be very successful. I feel so much better, I thought I was going to have to live with this unpleasant feeling forever, there is help out there, I pray for us all! Take Care [img]smile.gif[/img]
            Jodie

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            • #21
              Hi Debbie,
              Tomorrow I see my P.T., and will ask her about your symptoms, and also find out if she knows anyone in your area you could see. She is very good at what she does, so maybe she would know someone. [img]smile.gif[/img]

              Yes, I am a Christian, and my faith has really pulled me through some tough times. I believe very much in the power of prayer!

              Let me know how you are doing, please.
              Mary <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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              • #22
                to mary thanks so much for helping me again. let me know what she says okay. yes im a christian as well and believe in prayer but i am going through a hard time wondering why this is happened to me and taking so long to be healed but then i know i have to trust God on this one. how are you? do you have much symptoms now and i cant remember but did you feel the same symptoms as me? thanks again

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                • #23
                  jodie hello neighbour. i havent been to perth in 20 years love to visit there again. so how long did you feel like me for? was it everyday? and when you urinated did you feel like you had to orgasm for relief. i might be pregnant now so i cant go on drugs. i have been to tons of doctors and they dont know what to do only give me a antiboitic that doesnt do anything. and did you feel exactly the same as me. do you have a bloated stomach? love to hear from you again.

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                  • #24
                    Hi Debbie,
                    I couldn't see the P.T. today. I was actually in the car and on my way, when traffic came to an actual standstill and we moved like snails!! I was hoping to still get there, but up ahead they closed the road completely! [img]frown.gif[/img] I have NOT had a good day! I called my P.T. and told her to call me to reschedule. She is always slow getting back to me. Turns out I heard on the radio later that there was a bad accident up ahead. By the time I would have found an alternate route, it would have been past my appt. time. I'm sorry I can't help you today. Could you call your Physical Therapy Association and ask them to recommend someone who specializes in pelvic floor therapy? Tell them that the person should also do "internal work," meaning that she would manipulate your muscles internally. I have found out that some P.T.'s who say they are specialists in this field do not all do the internal work.
                    Hang in there, and let us know how you are feeling! <img src="graemlins/lmao.gif" border="0" alt="[lmao]" />
                    Mary

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                    • #25
                      Hi Mary A.!
                      I sent you my e-mail address last eve. Did you get it? This is all new to me, too. I just started posting in late August of this year. I'm hoping to hear from you soon! Do you know how to send a private message? You just click on the letter with the two people shaking hands. [img]smile.gif[/img]

                      Hope you are feeling well, and I look forward to hearing from you soon! <img src="graemlins/hi.gif" border="0" alt="[hi]" />
                      Mary F.

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                      • #26
                        Mary A.,
                        My profile shows that you didn't read my private e-mail to you. I checked my own profile, and my default for receiving private mail showed
                        "No," and I just changed it to say "Yes." Have you ever done a private e-mail? I haven't. Sorry about the confusion! I am very new at this!
                        Please check your profile, and make sure that it is set up to receive, or we may never be able to talk to each other privately.
                        Thanks! [img]wink.gif[/img]
                        Mary F.

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                        • #27
                          Debbie, My worst problem was the pins & needles but I sure used to get those embarrassing symptoms too, on and off, with the pins & needles. It's comforting for me to know that someone else experienced this too, and it wasn't just me going nuts with this awful disease. I suffered with this neuropathic pain for about 8 or 10 yrs, during which time I had young children to care for. Luckily the IC didn't develop until after our 3 kids were born, but was tough with 3 under 5, when it struck.
                          Like you, I always feel worse just after going to the toilet (burning, irritation, pins & needles.) That feeling was driving me crazy.
                          5 yrs. ago I was convinced I would be miserable with these symptoms for the rest of my life, and now I've found 3 medicines that work for me, so who knows what lies ahead in the future for you. Never give up hope of feeling better.
                          We live in a little country town, 7 hrs. drive south of Auck. I've visited Auck. a few times but don't know it all that well. It's quite warm, compared to the rest of NZ, but it does rain a lot.
                          Neurontin might be worth a try later but I'm not sure about taking it if you're trying to get pregnant, or during pregnancy.
                          I hope this helps
                          Shelley

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                          • #28
                            so shelley after you peed did you have worse burning and worse feeling to orgasm badily. ive learnt now only to pee when i have a really full bladder and the burning has died down abit. i drink heaps of water and cant handle it if i dont have urine in my bladder. boy you had it alot of years. NO!!! im not giving up i cant handle to live like this forever and i wont. so what is neurontin? and what other medication where you on? and what doctors did you have and did they take you seriously?

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                            • #29
                              Debbie, I'm like you in that I feel better if I hold on a bit and wait until my bladder is properly full before I go. That usually prevents burning or doesn't make it as bad.
                              My doctors, both GPs and Uros., tried to help me but didn't know much. I found out about Tagamet from our National Support Group, which is is probably why it's the most common treatment for IC in NZ. It has helped a lot of patients here, some of them so much so, that it's all they need. Neurontin is specifically for neuropathic pain (pins & needles, burning, throbbing and shooting pains like electric shocks.) Amitriptyline helped a lot with pain too and also with urg/freq. I never had the urg/freq. too bad tho., unless I was flaring.
                              It's really that mix of Neurontin/Amit. that helps me the most. I used to be such an exhausted chronically ill mess until I found medicines that helped me.
                              I found out about Neurontin and Amit. on the ICN message bds. etc. Neurontin is so new here that I was the 1st person who ever asked my chemist for it and the warehouse had never even heard of it! I'm sure you'll be able to get it in Australia tho.
                              8-10 yrs. was a long time to be so ill, with no support or hope of getting any better. I had a couple of suicide plans in those days but really glad I didn't do it.
                              Shelley

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                              • #30
                                oh shelley im so glad you didnt go ahead with your suicide thoughts. ive been very down at times but i have God to talk to and cling on to. but its still been hard. i wonder if i could take those while im pregnant. im so glad im not the only one i used to get so down thinking i had the weirdest body and even thought of cutting my clitoris out thinking that was blocking and back flushing infections in my urethra. if i peed all the time i would be a real reck. i know in myself when its safe to pee and one doctor said holding onto alot of pee is bad for your bladder but dah what do i do about it he didnt know. have you been on macrodactin that is what most doctors tell me to go on but did nothing in a few months of trying it. im so glad you are feeling better. do you get those orgasmic feelings still or is it gone? thanks so much for talking to me i appreciate it.

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