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  • #31
    woke up with weird feeling

    tuazmom- have you gained weight with this drug? It seems like every drug for IC and related conditions has weight gain side affect. I woke up this morning with heaviness and tingling/numbness/pain down there. First time that has happened. I was really feeling so much better lately too with my symtoms. Not crippling pain but definite discomfort enough that I had to take advil for it a couple of times.
    I pray it goes away, but what if it doesn't!!!

    Comment


    • #32
      Weight gain with Lyrica

      Yes, I did gain weight, about 15 lbs, but it was all worth it.

      Comment


      • #33
        I have said this elsewhere (may be even in this thread) but i find this to be the most psychologically devestating part of this disorder
        At times i struggle to not get a knife and stab or cut my genitals off!
        I live with ice between my legs and much as it hurts, it relieves someof the intensity
        i could scream and wish to grow huge talons (like wolverine) and scratch the walls to bear witness to the pain i feel
        i want my girl bits to be clean and sweet and have pleasant sensations, not this overwhelming annoying irritating mind blowing throbing and aching that interferes with my sanity
        when i had acute pancreatitis attacks every week, i was put on morphine injections 4 hrly around the clock for 7 months. During that time, i forgot about this condition as the morphine obscured it. When the condition was dealt with and i asked to be taken off the morphine, i endured not only withdrawals but the return of this condition with a vengence and even though the docs tell me acute pancreatitis is the most painfull condition they know, i would endure it gladly in place of this (at least there is some respite between attacks)
        I am loathe to ever recommend narcotics to anyone but i have to admit that they DO reduce these sensations remarkably.
        Sadly i do not believe any doc would prescribe them for this because they have no idea what we are dealing with. When i was given the diagnosis of chronic pancreatitis, i was GREATFUL!!! Finally i would be given some pain relief and though i could deal with the chronic pancreatitis, i could no longer live with this clitoral pain. I had contimplated suicide, i saw no other way to stop this pain that was ruining my life and relationships. I admitted this to doctors (not the suicide part, the fact that i needed the relief much more for my clitoral pain than for my pancreas) and they dismissed me so i feel so strongly for those of you that have no other RECOGNISED pain conditions that give the doc the reason they need to prescribe you the relief you so need and deserve
        I am crying for you,

        Comment


        • #34
          Clitoral Pain

          Hi to all, so sorry to hear of your pain, but at least we have each other. I thought I was the only weird one with this problem. It feels like I'm being electructed down there and the clitoris is the worst.
          I had a doctor tell me that the bladder and clitoris have the most nerves in them than any other part of the body. The major nerve from the pelvic region feeds right through the clitoris. It is a major nerve highway. No one understood why it happened, but for me, all this began after a vaginal hysterectomy 10 years ago.

          I believe it is from inflammed nerves that get "turned on" and can't be turned off. Most doctors think it actually is programed into the spinal column - hard wired, if you will.

          I do hope you all find some relief. I know some anti-depressants help, as well as Neurontin or Lyrica. The morphine never really helped me.

          When I search on the internet for "clitoral pain", almost nothing usable comes up, just a bunch of porno stuff. I guess the best resource is the Vulvodynia or Pelvic Pain website.

          I wish there was more understanding and compassion for this pain. I always told the doctors, "If your penis hurt like my clitoris hurts, you'd have some compassion and some idea of what this is like".

          Comment


          • #35
            is this usual?

            I am wondering (since this feeling is new to me), if this is just another symptom of the IC pain. I had 2 cups of Bengal spice tea the night before this pain and sensitivity started so should I suspect this or another culprit in my diet. I really am not that careful with food so much except tomato sauce. I don't drink caffeinated beverages and pop, but now I wonder about that spicy tea! I guess I am still sort of learning what my triggers are really. I am not on any meds as of yet as I consider my IC fairly mild compared to some of the ladies (and gents) here.

            Comment


            • #36
              Spices are a big trigger for me esp cinnamon....
              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


              • #37
                ***It amazes me that there really are so many of us out there with this rotten problem! I thought no one would reply when I posted this thread.
                ***Last night I felt well enough to excersize--big mistake. The treadmill set everything off again. Today I saw the gyna for a follow-up. She has increased my gabapentin to 600mg a day, and I can go up to 900mg a day if I need to. I hope I won't have any side effects from this dose. Already I am very tired-and my eyelid twitches now and then ( this is on 300mg a day ). I am willing to try the higher doses though. I would give anything to be able to enjoy some days without my vagina in the forefront all the time. My mom is coming for a visit soon and I would like to enjoy her and not cry all day long.
                ***When I was a little girl--I was so happy to be female. Never-never could I have dreamed something like this could happen---for no reason at all! Nothing has happened to me to pinpoint this to. I went into menopause early--age 35--verified at age 39. This whole thing is insane!
                Love to you all!
                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


                • #38
                  I am feeling a little better today. Just a little itchy now but at least not experiencing that throbbing discomfort that I had yesterday. Must've been the tea I drank. The first ingredient was cinnamon, then cardamom and ginger. Seems so unreal that herbal tea could make you feel so terrible.

                  I know all this could be worse, but I can't help but still feel sad. My life has been really changed. I find myself struggling to make family dinners now as there seems to be so little I can eat the same as my family. I really miss going to Tim Horton's ( coffee shop). You take these things for granted. Same goes for sex. I used to take that for granted and complained that it was too available. I didn't have a huge sex drive then, but now it is really diminished. Who wants to when it is misery during and after!!!
                  Better days ahead!!! Just felt like a little rant

                  Comment


                  • #39
                    Called to schedule Gyn appointment!

                    Hi Everyone,
                    Pain is back. I am so miserable I ask my husband if he would just shoot me but he said he could not do it. He said he would shoot himself before he would me. I told him the only thing that keeps me hanging on is God because I don't want to do something that I may not be forgiven for. I am so desperate right now. I did call the Gyn to get an appointment but got the stupid voice mail but I am waiting for them to give me a call back. I hope I can get in soon. I also have an appointment to go to Uro February 8, 2007. I went to sleep last night with a heating pad between my legs at least I was able to sleep awhile last night. I am going to talk to the two doctors and see if I can get into a pain management clinic for long term pain care. Well I guess I will talk with you all later. I hope between the two doctors I can get some relief. Love you all. Thanks for all the support.

                    Broken_Smile

                    Comment


                    • #40
                      Oh dear Deb2, exercise is a big no no to me!! Any type of exercise gives me a huge flare and I dont know why!!
                      I really hope you get some relief soon and feel better for when you mum comes to see you! I know how frustrating and horrible it is as I feel exactly the same! I just sometimes wonder "why me", but I spose we need to try to stay positive
                      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


                      • #41
                        broken_smile, you hang in there and try to find somme strength to keep fighting!!
                        We need your support so you have to keep fighting and dont let it beat you. you deserve to have some relief and I really hope these doctors help you. It's amazing how many of us suffer with these symptoms isnt it. I thought it was just me!
                        Well maybe we were supposed to help each other through this girls?!

                        take carex
                        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


                        • #42
                          Bless your hearts

                          You know, it breaks my heart to read these posts which is why
                          I don't check in very often these days.

                          My impressions is that so many of you are young ladies and it is so
                          sad to me that young women are suffering so much.

                          I have lived with numerous bladder/vulvodynia issues for decades and
                          in part because these issues have only been openly discussed in recent years.
                          Until I found this site, I had no idea that what was wrong with me
                          could possibly be treated although like the rest of you a "nearly normal" life
                          most of the time is not a normal life. The array of meds we all take
                          help most of the time but don't cure.

                          You can live with the constant pain, depression and anxiety but it takes
                          a toll. You become old before your time, you turn inward and become
                          isolated.

                          That is why, even though it's hard to read these posts I rejoice in the fact
                          that here is a place that women can find solace just in knowing that they
                          aren't alone as so many of us thought we were for a very long time.
                          GardenLady

                          Comment


                          • #43
                            ***Doing the 400mg of gabapentin now. Working myself up to 600ma and then 900mg if I need it. Today if I lean on it wrong or touch it it feels like a knife is being stuck in it ( the clitorus ). I also feel a constant, constant, constant dull rapid vibration going on--someplace in there--I can't even tell where anymore. I have about had it. This is never going to end! I don't think the gabapentin is working ---I don't even believe I have this nerve thing. My dr said I don't need an ultrasound coz nothing could be pressing on the clitorus coz it's bone there. But I think I need a ct scan or something. Something had to be going on in there. My first dr wanted to do the ct scan--but I didn't want to have to drink all that barium--it is so awful. But maybe I have to. I am sooooooooooooooo unhappy. Sorry everyone. I have no place else to cry anymore. My husband no longer wants to hear it.
                            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


                            • #44
                              Doctor Appointment February 1st!!!

                              Hi Everybody,
                              I go to the doctor today at 5:00 pm. The doctor is OB/GYN I don't know if he can tell me anything or not but I pray he can do something to ease this clitoral pain. I must be aggressive in letting him know how bad this is destroying my life. Everybody say a prayer. I will let you know if I find out anything. If can give me medications or something to help with awful pain everyone here will know all about it. XOXOXO

                              Wishing everyone a pain free day!!!

                              Comment


                              • #45
                                ***Good luck to you Broken Smile!! I hope you find an answer! Please do share with us whatever happens! I am still waiting for the gabapentin to kick in fully!
                                Hugs!
                                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

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