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new here, Q about urethra sensations

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  • #16
    "educated on this condition that is" I didn't mean educated on this education. lol see what sleep deprivation does to you?

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    • #17
      My urologist said they don't sedate or put you under for a plain cystoscope. He said that distension he would... so I asked about pain. He gave me Lortab to take before the scope. He also said he'll numb the opening and the entire urethra. I'm still scared because my gyno barely touched the urethra on a pelvic exam (and that really hurt). I really tried to push for anesthesia, but my uro is the only doctor in the practice in town that uses a numbing gel on a regular basis... the other docs say deal with it! So, in that sense I'm glad I have my doctor... but it was my understanding that scopes to look in office are always done awake...
      [SIZE="1"][B]Be well, Alyssa :hi:[/B]

      [

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      • #18
        I have a new confusion now.....the urologist that I went to who gave me my diagnosis was so sure that I had no UTI when I went into him last Tuesday. He said that he would take a sample by catherization anyway, but he was sure it would come back negative as that was my history. Well, no it didn't.....his nurse called and said I do indeed have a UTI. And after a couple of the pills, I'm feeling better already. This is the pattern that was occuring before I went to see him. I would get UTI symptoms, bo to my primary care doctor, get a test which would come back with a very small number of bacteria in the urine, they would prescribe antibiotics and it would clear up only to return in 2 to 3 months, after which I would take more antibiotics. I went to the urologist because I was having too many UTIs. The urologist, after reading the records from the primary care doc said I really never had UTIs because the bacteria count in the cultures were only 1/10 of what they would be for a UTI diagnosis, and during my initial visit, the urologist seemed to have the IC diagnosis even before he saw me. He did not listen carefully to me when I would try to answer his questions, and would cut me off in mid-sentence with his own answers. So, I always questioned his diagnosis. Then he did a cystoscopy under anesthesia and was quite worried about my lower bladder capacity. The thing is, I've not read the report about what he actually saw in my bladder and last Tuesday when I went in to discuss alternative treatments, he announces that he saw some "bleeding" in one part. This is news to me because he never mentioned this before! I did go for a second opinion and that urologist said I had a 50-50 chance of having IC. I've never had real pain, but just a very uncomfortable feeling of urgency and pressure. So, now I'm totally confused.
        I will be 64 on April 15th. Disagnosed in January 2007, but must have had it for quite a while. Bladder capacity while sleeping is 700 cc. I also have Fibromyalgia, IBS with fissures at times, which are painful. I take Flexeril 10mg at bedtime; Diovan for blood pressure; Levoxyl for thyroid. I have agreed to do "rescue instillations," but haven't started them yet.
        Nancy

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        • #19
          For born2swim

          I have had several cystoscopies in my uro's office and, while they are not fun, they aren't horrible either. They do use a numbing gel that makes it much easier. I have found that if I concentrate on relaxing it really helps.

          I wouldn't even consider going to the expense and risk of general anesthesia for a cysto. Hydrodistention does require anesthesia and is done in a hospital.

          Donna
          Stay safe


          Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
          Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

          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

          Sub-types https://www.ic-network.com/five-pote...markably-well/

          Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

          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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          • #20
            The first urologist should have taken some pictures of the bleeding. I would ask for copies of that and show it to your new uro. My urologist thinks that IC is "iffy" as a diagnosis. He thinks there are people with IC, and have it bad... but those that must use hydrodistention to see it (pin point bleeding), he thinks that if you stretch out any organ like that, you will see pin point bleeding (healthy or with IC). He said IC would look different though. So, maybe that first uro is in the same mindset?

            Antibiotics. I have never had a UTI in my life. My urologist took a double take because most women have had at least one before. So, I've had probably 10 urine cultures since Feb, and no UTI. My gyno 10 days ago gave me an antibiotic and pyridium and said avoid bladder irritants, and it does seem to help. I can't believe it, but it seems to help. My period came and just killed me, but I was given Valium to help my pelvis rest and relax and that helped too. I actually feel like I can exercise today!

            But what does that mean? Did I just have a subborn UTI? Is the urethra being numbed help? I'll still have an in office scope to make sure there isn't a urethra problem (I still have a bad urine stream and trickle).
            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

            [

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            • #21
              bladder symtoms

              Can anyone tell me how many of the doxyclycoline you are on. I have never ttried them and I was told they are terrible on your body and hard to digest. I am new also. well sort of and don't know half of what I should do on a computer so please look past my computer dummyness. but hey I'm trying. I wanted to tell you I really think I have just about tried it all.. I have been diagnosed with ic for nearly 30 years now. I wanted to tell you I have learned that ibuprophen is awful and so is asprin product. I have heard that blueberry extract herbal helps with the calming of the bladder. I am sure going to try it. Also it helps me to get a spray bottle and every time I pee I spray myself with the cold water and wipe carefully, It seems to leave you feeling somewhat better. As for the pain, I burn even when I am not going to the bathroom. It is awful. I have also found that a half teaspoon baking soda in a cup of water calms the burning. not tasty but it has helped. I am praying that Someone will come up with an answer for all of us with ic. I have had it a long time and The desire of my heart that the younger women will get an answer rather than to suffer with this as long as I have. I wish the doctors were more caring or something about the pain. My bladder has gotten to where it feels like a big heavy raw burning ball in my right side and low backing feels as though it is breaking. I am researching a natural item right and I am trusting God that it really might be helpful. Please get back with me, if anyone of you might want to do more. I do much better on the telephone than on this computer. I have free long distance calling so if you would like I would enjoy just speaking on the phone. I hope this is o.k. with this forum site to say because I sure would not want to do anythuing wrong and not be able to get on this site. I would like to know if anyone has a spouse that might have prostrate problems as, some have told me that they think it may be connected with sex. Hope everyone who reads this has a great day and even though I know you don't know me and I don't know you that there is one that knows what all of us are going through. God. I am praying for all of you. .Be blesssed. I so enjoy getting messaging from anyone who will listen. It is quite a terrible thing to feel like you are the only one going thru all this.


              Have a blessed day,
              Sandy marie[email protected]

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              • #22
                Well, I was put on something other than Doxycycline for my urethra. I took Doxy for a couple of years though (for acne). I don't remember any issues, feeling sick, getting super infections, or anything else. It worked like a charm on my acne and once I stopped, the acne never came back.

                I'm new to all this (still not diagnosed with anything yet, and IC is just one of many things that could be going on). I've been miserible since November, but for years I would always have to pee a lot right before my period. They don't think there is any connection, but how I'm feeling now is not normal. I'm doing a bit better with my antibiotic, pyridium, baths, heating pads, and Valium for my period. I'm trying the IC diet and it is very hard. I have most "bad foods" out of my life, but I do eat a cheat thing here and there and don't notice any flare ups (nor do I notice an improvement with the diet).

                I'm hoping they can ID the problem soon. I hope that you can find the right treatment to get you feeling better!
                [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                [

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                • #23
                  Born2swim and sweetpea,

                  I have that same achy bruised feeling. I've been on the forums fro a few months and no one has described that bruised feeling as well as you have. I literally feel like I've been kicked in the crotch really hard. Now that I'm on my period it's twice as bad as usual, and of course the bladder feels worse now too! This achy pelvis problem is so hard to deal with. I can't even tell anyone about it. When I'm feeling bad, I'll tell my friends "my bladder really hurts today", but its much harder to say "my vagina aches all the way from my public bone to my tailbone". The only person I've told about this secondary problem is my mother. I don't have a urologist right now, but I guess when I do get an appointment with one I'll have to tell them.

                  I'm not new to IC like you are, but it almost feels like I am. I got IC when I was 15, and luckily when I had my hydrodistention, it magically went away within weeks. I stayed on my amytriptyline and hydroxizine just in case of anything, but I really felt 100% okay!

                  I had a flare up back last May, but I thought it was just an undetected UTI, and it went away after a week. Then I started feeling it back again this November, and it hasn't gone away.

                  I want to give you girls hope though. If my IC went away for so long, so can yours. And I think stress has a lot to do with it. I'm totally convinced that if I hadn't messed up and gotten myself so stressed out, that my IC wouldn't have come back now.

                  So good luck with your hydrodistentions, and hopefully they will even put you into remission like it did for me.

                  If you have any questions about the hydro, or the meds I have tried, feel free to ask me

                  ~*miz_sunshine87*~
                  19 y/o student, salesperson, fashionista, future high school teacher. <3 to sing and travel. Dream job= cruise ship entertainer
                  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                  My IC story- diagnosed at age 15 (Feb 2004), after approx. 6 mos of symptoms. Went into near complete remission following hydrodistention and introduction of meds. Feeling so good that I started skipping meds (bad idea). 1 week flare (May 2006). New flare November 2006-present.
                  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                  My triggers- I'm not sure about food triggers, just started IC diet but so far doesn't seem to be doing much. Stress is a big trigger for me though. Both flares this year came during stressful times. I think that stress reduction will help me immensely (last flare went AWAY during vacation in Mexico when I was drinking margaritas like they were water;P).
                  ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
                  Start of IC symptoms- Summer 2003 (after a UTI)
                  Dx- February 2004, after hydrodistension (ouch!)

                  Current treatments- Amytriptyline (25mg), Hydroxizine (25mg), MSM w/Glucosamine (1000mg,3x/day), quercetin (500mg, 2x/day), trying to stick to IC diet, prelief as needed.

                  Previous treatments- Amytriptyline (10mg), Hydroxizine (10mg), Alesse (HBC)

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                  • #24
                    borntoswim,
                    have you read the handbook on this site about IC? or there is a good book by dr moldwin that is really good as a reference and readable too as tells you about symptoms, other conditions associated with it ie pfd, vulvodynia, /utis etc..and also tells you about studies and side effects.
                    Reading may help you understand your symptoms a bit better

                    It could be that the valium is also used for pelvic floor spasms so this could be helping you and also the IC diet and not taking bladder irritants can make a big difference in symptoms. antibiotics also have an antinflammatory effect hence they can help ICers a little.

                    I think more tests for diagnosis is the right way to go and hope you get to the root cause soon so that you can feel better.
                    It does seem that some of your symptoms ie frequency, worse before peroid, pain and urethral burning seems like IC, but sometimes it can be pelvic floor related or urethral

                    You can also get referred pain- sometimes it seems like the urethra is burning only but it can be the bladder as well. I know when my flares are realllly bad, my urethra is worse.

                    You could also try a tsp of bicarb of soda in water to help alkanise the urine and help burning and also flareups.
                    A heating pad is really helpful to those with pfd and most ICers - it helps relax the muscles and could very well help your urethra as you say hot baths help?

                    hope you continue to feel better!

                    ps amitriptyline is not only an antidepressant but in low doses is commonly used in IC for its sedative, pain relief and anti cholinergic properties. It is one of the main things that helped my frequency and urge although it took 2 years and development of pain to find that out!
                    IC diagnosis: Aug 2005
                    Symptoms: Urgency, urge and irritation and urethral symptoms
                    Flareup for 1 year til July 2007 (had constant urge and pain et al....)

                    Elmiron 100mg 3x daily April 2006 - present
                    Enablex 7.5mg nightly Sep 2007 -present
                    Atarax, Elavil 10mg nightly (Dec 2007)
                    Acupuncture - November 2007 - present

                    (Past meds for IC- Cystistat, Elavil 30mg, Ditropan, long term a/bs, Prednisolone, Cimetidine, Neurontin)

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                    • #25
                      I feel the "open" urethra feeling, too! Right now, in fact. It just feels like a pressure like urine is just creeping in there wanting to come out and I'm so scared I'll be incontinent because it just doesn't feel like it's really "closed" and held back. It feels like it will come out any second.

                      I have never tried an IC diet. I found that my symptoms flared reallly bad when I drank soda but I cut that out of my diet and eventually I guess hormones and other things (including masturbation) cause flares.

                      I am not dx'd with IC but man I have all the same symptoms of so many people here and have for YEARS. *cries*

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                      • #26
                        Oh man! Years like that? I started having symptoms in November and I just got the diagnosis today (IC). I saw an IC specialist (they heard how severe my frequency is and got me in within a week to see the PA). There realy isn't a question in her mind due to the tests she ran. I am now going to start treatments and hope I feel better.

                        I do have that "open" feeling, but I have never leaked (THANK GOD!)

                        The IC diet hasn't really made things better and adding things back didn't make things worse. I still avoid coffee/tea/splenda/fruit juice/citrus fruits.

                        I was told that hormones really cause flares because is stresses the body. My urethra hurts when it is physically bothered (when I had a physical exam, cystoscope, cath. foleys, and masturbation). This is frustrating, but I'm hoping now that I have a dx, the treatment plan for me will work! It's interfering with everything in my life
                        [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                        [

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                        • #27
                          Me Too

                          Hi There,
                          This is my first post and I am feeling really desperate so I'm sorry if I ramble or say horrible things.
                          I have a history of bladder problems but not been diagnosed with IC (yet)
                          5 years ago (I was 26) I had a lot of bladder pain which started off as cystitis, or so I thought. The pain continued with many changes in symptoms for about 2 years. Sometimes it felt like there was a hard lump inside me where my bladder is, sometimes it was that bruised feeling or urgency, or the feeling of constant bladder fullness. Sex made it worse and I started getting vaginal pain, probably from clenching up during sex from fear of the pain. I saw one urologist who gave me some painkillers and a muscle relaxant which helped slightly for a few days. I ended up going to gynocologist for the other pain and eventually got a lacoprascy to see if it was endometriosis.

                          Now here's the funny thing,

                          There was no trace of any abnormality but after the surgery my bladder went back to normal, despite the fact that they did nothing but have a look rond in there.

                          I have had cystitis a few times since but short-lived and easily cured...until now.
                          I had a day at work where there were too many customers and I couldn't get to the toilet. I was bursting for a couple of hours before I could go and this happened 3 times that day. I work alone so it's tricky to just up and leave with a shop full of people, although I wish I had now!
                          I got cystitis that night as a result but this time It progressed into urethral pain and lower bladder discomfort, constant feeling of having to go and a tender bruised feeling. I had an ultrasound- all cleaar. Antibiotics from the GP, no result. Had the urine tested, no bacteria or blood but a bit more protein than usual.
                          Went to a urologist who said it's urethritis-more antibiotics. One Cephalexin a day for 3 months. It's been 2 weeks now and no improvement. According to what I've read online they should be making a difference by now. The only time it feels normal is when I'm peeing! 5 minutes after I go it feels bad again.

                          I've even gone for acupuncture and after one session I had 24 hours of relief.
                          The first 24 hours in 3 months where I have had any pleasure in my life.

                          I am so desperate that I'm thinking of faking endrometriosis symptoms so I go back into surgery as that's what fixed it last time.

                          This is really destroying my life. I used to have a healthy sexual appetite before this first happened but now I'm scared of sex as a result. I have a kind and loving partner (6 years) and we both agree that this is the only real problem in our relationship. He cheated on me once, the only reason being for sex and although I was devastated I can't say I blame him.

                          I am extremely depressed. Yesterday I flew into a rage and ripped all the kitchen cupboard doors off their hinges and smashed them up. This behaviour frightens me! When I'm driving I keep wondering if I could just keep accelerating and drive into a wall or a tree. I feel I can't stand to feel this way for one more minute let alone years as some of you seem to have coped with. I think you must be amazingly strong, I wish I was too but even more I wish this would go away so I could live again.

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                          • #28
                            Winnie29,

                            I am so sorry that you feel so bad! My doctors wondered about some type of urethritis and put me on Macrobid + Pyridium for a month and that didn't do a thing. They recorded my symptoms, did a cystoscope (normal), and then the potassium sensitivity test (strong positive for IC). So they dx'd me with IC after that. It took 6 months from my first symptom (I never had a history of bladder trouble). It takes time to rule out everything else, but ask if you can be tested for something else. They should have heard your symptoms, seen the blood in the urine, and ordered a cystoscope. If I were you I'd search for a urogynecologist. I have no idea how to locate one. Mine was referred to me and he is WONDERFUL! If my bladder doesn't improve by July with the IC meds, instills, etc, he'll do a lap. for endometriosis as well. I'm not the typical IC patient... but the thing is, IC varies so drastically!

                            Good luck! Definately get a second opinion! I would also ask for something for depression. Some meds actually help pelvic pain. Check out the anti-depressant forum here. See if you can request something, because you do seem to be upset. Who wouldn't be with constant pain? Also, try the IC diet and see if that helps!

                            Good luck!
                            [SIZE="1"][B]Be well, Alyssa :hi:[/B]

                            [

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                            • #29
                              Thanks

                              Thanks for the reply,
                              Feeling a bit better now. I'm mostly scared of it being IC as firstly I will probably have to spend ages finding someone who believes it exists and then if I do have it, the remedies sound fairly excruciating, inconvenient and expensive.
                              I'm not in a position to afford weekly treatments and there is NO WAY I could ever cathertise myself for those kind of treatments.
                              I went to a gyno/urologist and he seemed very thorough, asked a lot of questions but I didn't mention IC so I don't know if he will test for it. He also mentioned Trogonitis which is not only incurable but untreatable so I'm praying it won't be that.
                              I mentioned that the first time it went away (for about 4 years) after I had the lacoproscy. Well, a friend of mine who had also had a history of frequent cystitis and frequent urination just had a hip replacement and has had a huge improvement in her bladder strength (she was mildly incontinent on occasion).
                              It seems there must be a link to going under general anasthetic in some cases,
                              or a strange coincidence...

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                              • #30
                                I know just how you feel. You feel alone right and so scared and worried. We just all have to help each other. talk each other through it all.

                                i agree everytime i start feeling really bad i live on these types of sites. i follow them and talk to all my ic girls. it cant fix the pyhical directly but it helps you emotionally.

                                <3 feel better and good luck!

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