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  • anyone had these embarrising symptoms

    hi i live in australia. i am a 38 year old married with two children. for nearly 3 years now everyday without a break i have had terrible high pitched nerve burning pressure in my urethra area. but the worse feeling is that i feel like im on the edge of orgasm all the time. the nerves are sooooo sensitive and my stomach looks bloated. i have been to hundreds of doctors of all kinds, physio, chiropractor you name it. had two cysto which was normal except the 2nd one the doctor said my trigone was bit red so he burnt the skin there which did nothing but give me a terrible uti. i have had 3 utis since this has happened to me which only makes my symptoms unbearable. i also have the urge to like pump blood to orgasm but it burns and feels terrible. also since i have had this i rip from my but every bowel action. do you think this is ic? im ripping my hair out ive been wanting to get pregnant for so long but have been waiting. im going to start ttc now because of my age. thank you for reading this.also i have written to dr larrian gillespie and she reckons its my lower back compressing on my nerves there but i have been to chiropractor for a long time and nothing

  • #2
    Debbie,
    sorry you haven't got a response yet. Usually we get and give responses in the same day but i've noticed lately that there hasn't been much conversation on the boards as there usually is. It's usually alot more active, i think it must be a busy time for everyone.
    I just didn't want to to feel forgetten.

    Anyway, i can't say that i have the same thing going on with me. It sounds really uncomfortable and i know it must be so hard to try and discuss it with your doctor. I would be frustrated, embarrased and tired.
    Of course you know i'm not a DR but it sounds like your nerves are having something going on with them. I know a girl from ICN who has derve pain and her DR prescribed Elivail. It's an antidepressant that is supposed to block nerve signals to some degree (or something like that)

    Ummmm, i could be WAY off but it's just a thought. Alot of times we have to get info from eachother and present it to our DR and they sometimes say "Maybe should give that a try then and see".
    good luck!!!!!!
    Nadia <img src="graemlins/hi.gif" border="0" alt="[hi]" />

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    • #3
      Debbie~


      I really dont know what to tell you cause I dont have those symptons either. I wish there was something I could tell you in order to help you. I do hope you get to a good URO and get on some good medication and get to feeling like your normal self. Best wishes and your in my thoughts.

      ~Alison~

      "We are tomorrow's past"
      -Mary Webb ( 1881-1927 )
      -Scottish Writer <img src="graemlins/grouphug.gif" border="0" alt="[grouphug]" />

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      • #4
        Hi Debbie,
        I see a physical therapist who specializes in pelvic floor dysfunction. I have mentioned that I love this message board, and then once in awhile I talk about problems that some of us have. I mentioned your symptoms to her, and she said that she "hears that quite often." She said that you need to see someone (she is talking a physical therapist) who would work with you to desensitize the tissues in that area. Is there anyone close to you that you could see? She was very matter-of-fact about this, so I know that this is not a problem unique to you. I know THAT doesn't necessarily make you feel better, but at least know that you are not alone!!! Keep us posted on how you are feeling, please!
        Hang in there!
        Mary

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        • #5
          There is at least one person who has posted about clitoral irritation --- hopefully she will see your post and respond.

          I do think it would be a good idea to mention this to your doctor; there are treatments available to help you.

          Sending healing thoughts,
          Donna
          Stay safe

          Have you checked the ICN Shop?
          Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

          Patient Help: http://www.ic-network.com/patientlinks.html

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          AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

          I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
          [3MG]

          Anyone who says something is foolproof hasn't met a determined fool

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          • #6
            Personally, I agree that it sounds like nerve irritation/compression. I would try a different chiropractor; they are NOT all the same. I have had the most help from those who use non-force techniques such as network chiropractic and cranio-occipital techniques. Maybe try checking online to see if anyone is in your area? Often dancers know who the best chiropractors and PT's are and they can be a good source of referals. Also I agree that trying Pelvic Floor therapy is also a good idea. In my case my back and pelvic floor were both messed up and just making each other worse; and both had to be treated together in order for me to get any better. I'm sorry you are having such a miserable time and I hope something works for you! beth_s

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            • #7
              thanks everyone for your responses. last night i had curry which i dont normally have and i actually got woken up with feeling like a uti was coming and this morning i had to drink sooooooo much water to calm it down. it feels like my urethra is infected allllll the time. i wonder if a physio will stop this inflammed feeling. im so glad i feel bit better. if i dont drink water i can guarentee that a uti comes that is what happened when i first got this. im going to start ttc next week when im ovulating and getting bit nervous about being preg but fed up with waiting soooooooo long. can i ask what does a physio do does she have to massage your vulva area how embarrising. thanks again everyone.

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              • #8
                to mary thanks soooooooo much for asking your physio for me. how can she desensitise the tissue there and can you ask if she has helped any girls get rid of this fowl feeling. can you ask her if other girls feel like they have an infection in their urethra everyday. thanks again i have two names of ladie physios to ring i get so embarrased having to see more people and discuss this problem. i get so upset when im waiting in the waiting room this is soooooo embarrising for me.

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                • #9
                  Hi Debbie,
                  I am sorry that you are not feeling any better.
                  I see my physical therapist this Thursday, and will relay your message to her then. As to this being embarrassing, just remember that these people are in the business of helping us. If someone can relieve your symptoms, that is what it is all about! This gal does mostly internal work on me, but I am so used to it that it doesn't even phase me anymore. If you DO go to someone, it gets easier the longer you go.
                  Have you tried Pyridium? Sometimes if I have some urethral sensitivity I take it, and it does help. I have found that if I am careful about what I eat and drink, the feeling goes away after a few days. Also, you might want to try keeping a diary of what you are taking. If the curry makes you feel worse, write that down. That may be one of the things you need to avoid.
                  I hope some of this is helpful!! It is very frustrating, I know. This is a wonderful place to get information and talk with understanding people who KNOW what we are going through!
                  Mary [img]smile.gif[/img]

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                  • #10
                    Hi,I've just read yr. post. I used to have similar urethral/clitoral pain like you, which in my case is neuropathic pain. I've found Neurontin and Elavil (Amitriptyline) keep it well under control. I take Tagamet as well.
                    Shelley

                    Comment


                    • #11
                      shelley hi neighbour in new zealand. hey i went on that drug anti depressant got up to 10 mg made me feel morning sickness and very tired got used to it abit but i only felt a little tiny bit better. im trying to get preg so ive gone off it cause the doctor said it wont get rid of it only take the edge off. how much are you taking and are you putting on weight with it which i was freaking out about. thanks for replying

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                      • #12
                        thanks mary. what is pyridium and is it a drug that you have to go to the doctors for? ive started to avoid tomatoes now and chocolate. if anyone touches in the vaginal area and touches the urethra then its terrible and i have a burning feeling and then have to orgasm for relief. this sounds sooooooooo stupid but its the worse thing i have ever felt and you feel not like a real woman but feel kind of ashamed having to touch there its so revolting to me. yes thanks for asking her again tell her its like when you are cold and hot flushes like when you panic but down there and it burns but heat makes it feel better and it feels swollen and pressure and infected. and feels like ive got a catheter or something there all the time. or like when you have your periods and you leave a wet pad there for a week and its rashed and burning inside the urethra. sorry bit hard to explain but only water calms it down the best. if its really bad then orgasm makes it burn more and the nerves are even more high pitched and want to orgasm again and again. also if i press onthe left hand side there must be a blood vessel between the clitoris and urethra that calms it down but then i feel like pumping that around oh bummer this is fowl. thanks so much for helping again i really appreciate it. i wonder if she knows someone in adelaide, south australia that would be good.

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                        • #13
                          Hi Debbie, You're brave to describe such embarrasing symptoms. I used to have them too but always too shy to describe them so accurately. It helped me to read your post and realise that I wasn't the only one, all those years ago. Do you get a pins & needles sensation with the burning and irritation? I had that too. It was my most annoying symptom b/c it kept me awake for hrs. at night. Do you manage to sleep ok?
                          Anyway I don't know if you can take Neurontin & Amitriptyline when you're pregnant or trying to get pregnant, but I can understand your concerns about side affects with Amit. Before I tried Neurontin I needed 75mg Amit./night BUT when I added Neurontin 300mg/morning and another 300mg about 5.00pm, I was able to cut the Amit. down to 25mg/night. The 75mg. caused rapid weight gain (2 stone), day time drowsiness and strangely enough, depression. The good news is, that Neurontin & Amit. work better for me together, than either of these medicines alone. Just my experience, but maybe it will help you.
                          I see someone mentioned Pyridium. I don't know about Australia but we definitely can't get it in NZ.
                          Shelley

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                          • #14
                            Hi again, I just re-read your post. Obviously Amit. is no good for you if you felt sick on just 10mg. You might do better on Neurontin.
                            Shelley

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                            • #15
                              Hi Debbie,
                              Pyridium is a urinary anesthetic. It works for me if I am having sensitivity in the urethra. I got it through my urologist. It turns your urine orange, so if you do get it, don't be surprised when you see the potty! I don't know if it would work for you, but it is worth a try, if you can get it. Also, I noticed the one posting tonight regarding the bacteria. It was headed "Everyone must read!!" I intend to see my urologist, and ask to be tested. Why don't you, too? Especially if you are trying to get pregnant, it might be really helpful. Even if a few of us would get long-term relief, OR A TOTAL REMISSION of our symptoms, this would be incredible!! I still will ask my physical therapist about your symptoms, though, and I will put you on my prayer list.
                              Hope you are feeling a bit better! <img src="graemlins/hi.gif" border="0" alt="[hi]" />
                              Mary

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