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  • Please szee my new post.. I have the same thing.. tried lots of meds...

    these creams from a new urogyn worked for me aftera week or two! And they aren't invasive or $$.

    Good luck..
    Kim..

    Comment


    • Thanks Debe2, happymom, and heavenly7 for your concern of my health. I just hald 1/2 of my thyroid gland out.

      Deborah Bush
      I have IC, the IBS, Heartburn, High bloodpressure,thyrod problems, depression and clorties pain.

      Comment


      • i've read this thread before and wanted to cry for all of you, and i thanked my lucky stars that i didnt have this kind of pain.

        BUT, 2 DAYS AGO, I GOT THE THROBBING PAIN (IN A VERY EMBARRASSING AREA TO TALK ABOUT) AND ITS DRIVING ME OVER THE EDGE!

        seriously, I took so many meds yesterday trying to calm it. NOTHING worked. extra neurontin, extra tramadol, etc. NO releif. seriously, i'd take bladder burning over this hell. right now i feel like i'm being stabbed there. its kind of like being painfully aroused, but not in a good way. its obnoxious and i havent slept for 2 days. i dont know what to do. i missed work yesterday and i cant keep missing work because my clit hurts! can you imagine telling somebody that?!

        I think it was triggered by PT, well...PT done by me. Basically i tried to mimic the massages that she does for pudendal neuralgia, and i think i hit the nerve. because right after my do-it-yourself massage (right where the pudendal nerve comes up through the muscles) i got this pain. i'm hoping it will calm down, because seriously, this is not something i can live with. i'm at wits end.
        diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
        frequent UTIs
        No frequency, just urgency and pain!


        tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

        Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

        TENS may help a little

        Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

        fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

        Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

        Comment


        • Nicola B......I know exactly what are you are going!!! As you know I have been there and gone through the sleepless nights sitting up thinking "what the hell is going on with my clit"!!!

          yes the way you describe it "painfully aroused" is also how I would describe it!! Horrible strange sensation which drives me insane!!!

          I also get it worse after sex/or any type of massaging "down ther" and my doctor said that it stimulates the nerves which makes the pain/throbbing sensations appear worse!

          Eventually it calms down...trust me it does! I'm not saying it completely goes for me but now I am taking my meds etc I can hardly tell its there....untill I end up getting aroused again then I'm back to square one.

          Now first thing you need to do is speak with your doctor (an understanding one) who will offer you various meds which are for this type of pain and it will help!!! I take Elavil and gabapentin together and its amazing how well it works.

          ARe you taking either of these? you will typically need a less dose than you would usually need for IC.x
          Started with symptoms 2004 after a severe infection.
          Was diagnosed with IC Feb 2006 after cystoscopy.
          Diagnosed with vulvodyina and PN in july 2006.
          Dignosed with ME and IBS Oct 2006.
          Currently taking Amytriptaline 50mg, regular pain killers and birth control!
          Also doing IC diet and regular use of heat packs.
          Still struggling with IC and controling my symptoms so looking for some help

          also recently had abnormal pap, CIN III and just had LEEP done 2007

          Comment


          • elavil made me gain 15 pounds quickly, and then the neurontin made me gain another 5 pounds, so a total of 20 pounds since i started my meds months ago and i have being dieting too! Its too bad because elavil did work pretty well. Neurontin worked less, but i'm still on a small dose. whenever i increase the dose, i bloat up and gain weight. I already have a slow metabolism and i cant make it worse! especially becase the meds made me gain without even eating more, so i know its messing with my metabolism.

            i only had this new pain for a couple of days, i'm hoping it will calm down because its horrible!

            i want to try lyrica but since i tend to gain weight on these drugs, and lyrica is a big weight gainer supposedly.

            i know it seems vain, but if i gain weight, my already horrible depression will get worse. I've always had depression and self esteem issues with my looks and i cant risk being more depressed than i am. Depression is almost a worse torture than this physical pain! i'd only take a weight gaining drug if it CURED the condition.

            thanks for the suggestions. i think i need to see a pain specialist.
            diagnosed IC Jan 2007 (though i feel i've had it mildly for years)
            frequent UTIs
            No frequency, just urgency and pain!


            tramadol 50mg twice a day. this stuff works good for nerve pain!!!! (update, i'm down to mostly one pill a day now!)

            Physical Therapy. if you have pelvic nerve pain or muscle pain, its worth a try. it helped me with the constant burning.

            TENS may help a little

            Cystoprotek might be helping as well. i'm getting better as time goes on and this could be why.

            fish oil, herbal teas, skullcap (might try passionflower for nerves) I'm not very diet sensitive.

            Went OFF elavil and nortryptiline (worked wonders, but didnt like the weight gain)

            Comment


            • Deb Bush,
              So thankful that you do not have thyroid cancer. Hope you have a smooth and pain free recovery.
              Miss Bessie

              Galatians 6:2 - Carry each other's burdens, and in this way you will fulfill the law of Christ.

              Hebrews 13:2 - Do not forget to entertain strangers, for by doing so some people have entertained angels without knowing it.

              Proverbs 4:23 - Above all else, guard your heart, for it is the wellspring of life

              Comment


              • Nicole B,

                I am so sorry to hear about your new pain. I tried Lyrica and then switched to Neurontin due to stomach trouble. Neurontin works much better for me.
                I am currently going to physical therapy to treat this pain. My physical therapist has a theory that my prudendal nerve is irritated around the area of my hips. Is this where the "prudendal nerve comes through the muscle" or are you talking about a different location. My nerve pain has been more manageable after a few treatments in which my therapist focused on the hip area.
                I have also felt much better after seeing a pain specialist. I highly reccommend it. Hugs!

                Happymom

                Comment


                • IC symptoms and stuff I've tried

                  Hello to all of you.
                  I have read all twelve pages of posts in this thread over the past few hours and they all sound so familiar. We are a desperate lot, IC sufferers, and we fall prey to all sorts of hopeful sounding cures, no matter how unlikely they sound. The earliest symptoms I remember came when I was about 8-years-old. I had surgery to remove an ovarian cyst in 1967 and I was catheterized. That's when my bladder problems started in earnest. I only really had symptoms during a flare up at that point. Sometimes I would be driving and all of a sudden the pain, urgency and frequency would become so bad I was sure my head would blow off. I would stop, go to the restroom, get back on the freeway, 5 minutes later it would be back, just as intense as before. I was diagnosed, finally, in 1994 at UCSD hospital by C. Lowell Parsons. I could not wear jeans or anything tight over my abdomen or tight in the crotch. Parsons instructed me to catheterize myself every morning and inject bacteriostatic water and heparin. I did this for two years and then stopped 'cause the catheter hurt going in more than I can say. Any touching in the clitoral/urethra area is going to cause pain and many of you are describing going through things that could very well make your symptoms worse. The pudendal nerve is nothing I know much about ... except that it is located in the pudenda. I am skeptical to tell you the truth. For the most part it sounds like drs on a witch hunt because they have no idea what to do or how to treat IC. Many drs., urologists, family doctors, ob-gyn, etc., would rather be shot at sunrise than have to try to treat an IC patient. I have read only vague references to diet in this thread. I was the most pain free when I ate mostly broccolli (sp?), chicken and brown rice and drank nothing but water. Most foods are IC triggers. All acidic foods (some foods start out as alkaline and turn acidic by the time they reach your bladder) will hurt you, sugar will hurt you, either refined, raw, or natural sugars in excess. Therefore, alcohol will hurt you. Fruit will hurt you except for pears and blueberries. Chocolate and tomatoes and tomato paste/sauce. And on and on. Check out ******* website, ***** ******* is the acupunturist who has studied IC patients for 10 years. Her diet is restrictive, but hurts the least. The real trick is staying on it and not dying from boredom. SHE started me on herbal combination for two weeks that included omega 3's, golden seal and one more that I don't remember at the moment. I will check and get back to anyone who wants to know. If I had stuck with the diet and the herbs, I may have done better than I have, but maybe not. Different things work for different people. Like I said, all of us are desperate. Still looking for that magic bullet. Sex is very painful ... I think saliva is particularly irritating. When I first reported intense pain in clitoris/urethra, my fam doc said I must have urethral herpes. Thanks doc. Herpes attacks nerves and nervous system. It is not herpes, it is an IC flare. I'm gonna' go out on a limb here and say that it has nothing to do with the clitoris at all, but instead is horrific pain in the urethra. IC affects all ... bladder, urethra, plus sympathetic pain in back, thighs, hips, abdomen and on and on. It is a debilitating, depressing, disease. My husband encountered a urologist in the hot tub at the resort where our sailboat is slipped about two months ago - she was in town for a convention of urologists - he mentioned his wife had IC. Her reply, "tell her not to give up yet." Ah yes, if not yet, then when? Seriously, lots of research being done now, but not nearly enough. We now know kids can get it. Lots of men have it although many more women.

                  How many of you have tried keeping a food diary? It will help you figure out what triggers flares. Sex most always causes flares unless it is so gentle that it hardly makes an impression at all. Every time my husband and I have passionate sex, I tell him I am going to pay for this and so are you. Flare ups cause irrational and fierce pain, irrational and unpredictable behavior as you try to cope an no one understands. 5% lidocaine, right into the tip of the urethra will numb (after horrible burn) for a while and give me some relief, often enough to let me go to sleep. I regularly take 20 to 40 miligrams of oxycontin every twelve hours, 350 miligrams of soma at bedtime to help me sleep, 50 mgs of atarax (hydroxizine) at bedtime, wellbutrin for depression. Have been taking Gabapentin for about two years, but I am considering weaning off the drug. It never helped my IC pain, but I thought it helped my back pain. Now I think it only makes me gain weight and gives me suicidal thoughts. Read more about the gabapentin lawsuit and bad effects of the drug to make up your own mind. I will be turning 60 next month, so I will have had this disease for 52 years give or take. Elmiron was no help. I am going to try msm gel after reading this thread, also freeze dried aloe vera. IC causes inflammation of the bladder, congestion of the bladder and abdominal cavity. When sinuses drain, it can help. Warm bag filled with barley or corn or whatever placed on abdomen will help to draw congestion/inflammation if you stand the weight of the thing. Sometimes yes, sometimes no. This helps with migraines too if you place it over your face. Please, please, please, no more ice. Ice only aggravates the pain and as soon as you take away the ice the pain returns with a vengeance. Warmth brings healing to area by increasing blood flow. Although, periods can cause worse IC symptoms. It may be that I am wrong about the clitoral thing, but I have lived with it for a long, long, long time. I have been on a flare up for about 24 hours now, so I am going to put this down and try to get some sleep using lidocaine. Opiates help, but they do not always work. Flare ups are on the ceiling kind of pain. I always say it takes some time and drugs to come down off the ceiling and get the pain settled down to almost bearable. Sleep is great, no pain when I am asleep. Depression, lack of energy, having a job is difficult. I could not live with the pain all day everyday and my dr. gave me mscontin and then oxycontin. Soma relaxes the pelvic muscles. Anything that will knock you out, especially around bedtime, is a good thing. Used to take vicodin, but too ineffective and too much acetominiphen (tylenol). I expect to wake up later to you all telling me I am nuts, but I had to share my story. I have good support from my husband, but he gets frustrated and loses patience sometimes. My fam. doc is good now. He pretty much lets me control the pain, etc., within reason. Have been taking 20 mgs of oxycontin for about two years. Sometimes, when pain is horrible, I take 40 mgs. I have found that 20 mgs. time release often does not last twelve hours, that's why I have him prescribe two 20 mg. every twelve hours. When flare ups occur, it helps, but no amount of it will dull the pain for more than a few minutes, sometimes 30 minutes if I am lucky.

                  I love my sailboat. It is the only hope for me now. I forget about my IC while I am out on the water with the wind in my hair. Now if I could just get that sensation all the time. I can, it's called cruising, which we are planning. Could be after awhile even that won't work, but I don't want to think of that now. Love to all of you.
                  Dorothy

                  Comment


                  • IC symptoms and stuff I've tried

                    Hm, site won't let me post anything from a different site I guess. I don't know, but the url for acupunturist in la who has studied IC patients is *******.com. If this doesn't show up I will try to find a different way. Google IC and acupuncture, maybe it will come up. Shoot, no good, I can't get website address to you. ******* is name.
                    Last edited by Nirvana; 09-20-2007, 05:16 AM. Reason: misspelling

                    Comment


                    • Donna has kindly re-opened this thread because I know it is a comfort to all of you that post here. If there are any problems please let Donna, Jill, me or any of the moderators that there is a problem here.

                      Thanks Donna!
                      *IC-- Summer 2004; PFD--October 2005
                      *Fibro--Fall 2000; CFS-- Fall 2000
                      *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                      Total Abdominal Hysterectomy--adenomyosis--9\08

                      04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                      Comment


                      • Nirvana: I'm sorry to hear how much you are suffering and for such a long time! I just want to say that clitoral pain can be a totally separate issue from IC. It can make you feel the need to urinate frequently and urgently--but it is not the urethra causing it. I'm not saying it can't be the case--but for me it is not. I don't have IC. When I have the pain it is in the clitoral area and inner lips only--for sure! Vulvodynia can be a part of IC--or a whole separate issue. Luckily for me I have been pretty much pain free for a few months now. Either the gabapentin is working-or it 's getting better on it's own. I'm not willing to go off the meds yet to find out--not after I was hurting for so long. I have read everything about the drug and I feel it is quite safe. I would rather be drug free--but there you go.
                        ***As for the IbS and Tip thing--I just thought the person was off on some strange rant and so I ignored these posts. I doubt the posts were meant to offend--I just thought they made no sense and had little to do with our problem.
                        Debe2
                        PS Does anynoe know what the rating on these threads mean??? I asked before but got no response.
                        Premature ovarian faliure 1996-age 39
                        Put on ortho novum 7/7/7 and premarin cream
                        Began HRT Feb 2006
                        Current meds:
                        Estrace oral: 0.5 twice a day
                        Prometrium 100mg bedtime
                        premarin cream for vulva
                        vagifem
                        Aciphex 20mg
                        diflucan monthly-stopped this July 2007-fingers crossed!!
                        gabapentin 900mg-so far

                        Comment


                        • Originally posted by Nirvana View Post
                          Hm, site won't let me post anything from a different site I guess. I don't know, but the url for acupunturist in la who has studied IC patients is *******.com. If this doesn't show up I will try to find a different way. Google IC and acupuncture, maybe it will come up. Shoot, no good, I can't get website address to you. ******* is name.

                          First of all to the board! We're glad you're here. I'm sorry you've suffered for so long! You seem to have a great attitude though and just hearing about your sailing trips makes you my hero!

                          The reason you can't post url's or doctor's names is because it's not allowed here as sometimes it's seen as advertising. It looks as if the system did it this time and since I've not been around much the past few days I'm thinking the system was upgraded to stop websites from showing up automatically.

                          Sandy
                          *IC-- Summer 2004; PFD--October 2005
                          *Fibro--Fall 2000; CFS-- Fall 2000
                          *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                          Total Abdominal Hysterectomy--adenomyosis--9\08

                          04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                          Comment


                          • Originally posted by Debe2
                            ***Pss I didn't know this thread was closed....was a post by IBS and Tip deleted? Maybe I missed something and that is why the thread was closed????
                            Debe2
                            There were just some questionable posts here but that's in the past now and I'm just happy you guys have your thread back. You guys seem to have become very close here!! Lets move on.
                            *IC-- Summer 2004; PFD--October 2005
                            *Fibro--Fall 2000; CFS-- Fall 2000
                            *MPS--Fall 2000; Crohn's disease-- 1997*IBS,GERD, *Migraines, hypothyroidism, GYN problems *Degenerative Disc Disease/scoliosis

                            Total Abdominal Hysterectomy--adenomyosis--9\08

                            04/17/09 Crohn's disease almost killed me with a combo of extreme constipation from pain medications. My bowel ruptured, I almost died from peritonitis and spent several days in the ICU then more in a private room on the floor. If you have any questions about severe constipation from pain meds please don't hesitate to send me a message.

                            Comment


                            • How common?

                              How common is it to have this problem with IC?
                              Daily Meds:

                              IC-Meds
                              Ditropan XL 5 BID, Elavil 50 QD, Elmiron 200 BID, Hydroxine 50 BID. As Needed: Bacofen 20, Prosed DS, Hydrocodone/Apap.

                              Other Meds
                              Adderal 10 QD, Remmeron 37 QD (I take 1 1/2 of 25 mg)

                              With the help of my doctor moving my meds around a bit by increasing this and decreasing that I have found a good combination of meds (for now and I pray a long time from now).

                              Comment


                              • Thanks very much for reopening this thread..

                                This is a very important thread to people who suffer with this problem, It is real and very disturbing feeling to have to suffer.. To me it has to be worse than having a broken leg or arm or any pain like that.. Its a constant throbbing arousal feeling with a wierd pain it is so disturbing it plays tricks on your mind.. People who have this can truly relate, when it is constant it makes you just want to go to sleep and never wake up..

                                So thanks for keeping this open, because the people here understand what I am talking about and we need each others support just like people with the IC pain, which I believe is a part of this..
                                Take care all
                                Hugs
                                Ronda

                                ONE Second, ONE Bite, ONE Breath, ONE Pill, ONE Minute, ONE Teardrop, ONE Hour, ONE Sip.. ONE DAY! I will Prevail from this disease! IC Hoping for a Cure!


                                Link to Patient Handbook:
                                http://www.ic-network.com/handbook/

                                Diet Reference Sheet:
                                http://www.ic-network.com/diet/icndi...tsheet0909.pdf

                                Meds For IC: Lyrica-25mg Glucosamine-500 MSM-500mg, Prosed Ds -When Flaring

                                Other Meds: Levlite- Continious Birtcontrol, Micardis-40mg for High Blood Pressure

                                Meds I have Tried:
                                Topamax,Tofranil, Elmiron, Atarax, Cymbalta, Elavil, Enablex, Detral La, Prydium.
                                Lexapro< Bad reaction to this med!
                                Intstills, could not continue them due to some kind of reaction after 3rd instill. Tasted the lidocaine in my mouth, tongue and lips went numb then went into what seemed like a panic attack. Shaking, racing heart, tingling face/head, blood pressure shot up..

                                Dx With IC in Nov 2006 with Hydro/Cysto
                                Hydro/Cysto Caused Bladder to Rupture.

                                Other Dxs-Vulvodynia,Fibro, Endo, IBS, HPV, Migraines, Spastic Colon, Mild Dysplasia.



                                ICN Volunteers are not medical authorities nor do we offer medical advice. In all cases, we strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

                                Comment

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