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    Hi everyone;
    Well i wanted to thank the one who had give me the name of the type of doctor for PFD the Urognecologist. I contacted my family doctor the next day, and she had found one. Of course its in the univeristy of Michigan Hospital. Which i was to go a few months back, but i cancled it because i lost my job, and cant aford to drive back and forth(4hr drive there and back).
    But I had gone into my family doc yesterday because i have been haveing swelling and really bad cramps for like 2 weeks now. I had not been able to get into my ob/gyn, which on monday the nurnse was so rude to me, i am not in a rush to go there as it is.
    So yesterday at the family doc, she did a pelvic exam, ohhh my god i am still in pain from it. she was pressing on my stomach to see where it hurt, then she didnt find it so she said show me where it hurts then, so i did. Dumb idea in a way. She press so hard on it, and i jumped litterly off the table. Then she did it again. I cant belive 2 times. like one was not enough. i yelled it hurt so bad. She asked if i had any cysts. Well i do but its on the left side. And the pain is on my right side. SHe said well you just cant have a simple diagnosis can you. Nope never have never will i supose.
    But ohh my god my side is hurting so bad, can hardly walk around the pain is like now wraped around my hip, and leg, where she pressed was like upper pelvic. I have had this pain in this one spot for 10 years now. No doctor ever tell me why. It is always there and if pressed on, its 10 times worse.
    I had gone to see her for the swelling i been feeling in the vaginal area, but she said she didnt really notice it. Which i dont know how she cant. Maybe its so subtle that i can just feel it i dont know. I still feel it.
    I feel my whole body is just falling apart its unreal how everything is like this. I just want to be fixed and thats it. there seems to never be an answer, and a cure for it or way to fix things for good. For being 33, i am so runned down, no energy, im lucky to be able to walk in a store without haveing to stop cos the pain starts up.
    I am courious too, have anyone with IC and Endo, Had a hysterectomy, and felt better with both the Endo and IC. I am to a point to where i just cant stand it. I am not even married, and no kids. So knowing my luck, about the time i do a hysterectomy, then iw ill meet a guy who wants kids and then i say i cant then he will leave. thats how my luck always goes. SO its why i have been holding off saying just do a hysterectomy.
    thanks for letting me vent. This last 2 weeks, i have had so much stress and worry, i just do not know what to thinka ny more about anything.
    take care everyone.
    stacy


    Current Conditions:
    Endometriosis,1995
    IC,Feb 06
    IBS-C

    Prenecious Anemia
    Stomach Ulcers
    Duodenitis
    Acid Reflux
    Low Blood Sugar
    Hypothyroid
    Migrains

    Surgeries
    Laporoscopy-1995
    Gaul Bladder-1996
    Laporoscopy-2005
    colonoscopy2005
    cysto/hydro-2006
    cysto/hydro-2007

    endoscope-2007

    Meds:
    Elmiron,100mg 2am 2pm
    Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
    Elavil, 150 1pm
    Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
    Prilosec,20mg 1am 1pm
    Zoloft,100mg 1 pm
    Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
    Reglan, 10mg, 1 3xday with meals-for duonditis
    Ultram 50mg 1 every 4hrs as needed for pain
    Pyridim,100mg as needed
    Vicodin 5/500 as needed for pain
    Heating pad
    Ice Pack
    Arthritis Pain Equate brand 650mg usualy 2 at a time
    Stool softeners w/stimuli, 2am 2pm[/COLOR]

    Hopefuly no more gets added to the list!!!

    I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
    Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
    My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
    When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
    Dont forget to take care of you!
    Take care

  • #2
    Hi stacy.
    I am sorry your doctor visit caused you so much pain. My gyne says she is sure I have endometriosis. I am not jumping to have no laproscopy though as I am not going to make myself any worse, and any type of abdominal surgery is always a risk.
    Have you ever tried birth control pills. I know that my sister-in-law uses them to keep cysts away and my gyne said they sometimes will actully shrink the cysts. It is just an idea.
    I am also 32 years old and I feel like you do, like my whole body is just breaking down. My dad who is in his 60s is in better health than I am. That is pretty sad. And NO, I would not rush into a hysterectomy. Did you know that 5 out of 10 hysterectomies performed are not even nessasary? I would leave that as a very last resort. It can makes things even worse from what I have read as far as IC is concerned. Try other routes first.
    I hope you feel better soon. Big hugs.
    Jen

    Comment


    • #3
      Hi Stacey,
      I have heard that having a Hysto can make things worse with your IC..I agree with Jen about the birthcontrol, that is what has helped my Endo..
      I am sorry you are having to go through this, but with the right meds it will get better...((((((((((((hugs)))))))))))
      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


      • #4
        I know what you mean about feeling like you have a swelling. I used to tell doctors I looked red and sore and they would examine me and say nothing is wrong. And I would feel like saying but can't you see what I see? In the end for that type of pain I think, it was a combination of doing the diet, cutting out smoking and drinking, acupuncture and doing things like practically boiling underwear when washing, using very eco friendly washing liquid, leaving my business and after 10 years and now at 40, having slightly less hormones - I am feeling much better with that. Having said that a ct scan has just shown up something pressing on my uretha and I will find out tomorrow but think its a cyst or ulcer. Don't rush into hysterectomy. Also I tried reducing painkillers to reduce chemicals in body and I find mega doses of disprin/asprin helps the type of pain without me sufferiing afterwards and seems to inhibit the ulcer/cyst slightly. Cannot explain why.

        Comment


        • #5
          Hi everyone;
          I have acculy been on birthcontrol pills since i was 22 or so, To help with cysts. Since i was about 28, I had been placed on continuious BCpills, which it helps so much to control the pains. I still have a cyst in the same spot, which has never went away.
          I swear my body never responds to regular treatment to anything. Is always have to be drastic treatment. Like I keep getting bladder infections, ever month, or eery 2 months. the antibiotics would help for the one, but hten i keep getting them. So now i am on 6 months of antibiotics. Then when i saw a kiddney specialist, because there is a scar on my kiddney the CT scan showed that, he recommended maybe even going a year on an antibiotic. Just so that it keeps them a away for a long time.
          I try not to ever use the pain pills, i wait till its really bad before i will use them. Then tend to use only 1-2 days max and then just stick to motrin or so.
          The last time i had seen my real Ob/gyn, she has acculy mentioned a hysterectomy. She told me cos she did a laporoscopy in 2005, and at that time, she just said" i have an angery uterius" it was red and inflamed, and u can litterly see the blood vesels poped out on it. But she then said to me no endo. Then nov of 2006, she said she thinks i do have Endo and she missed it during surgery. in nov. I was haveing a lot of spotting, and constant cramping like i am now haveing so much cramping. So then i was back in Jan, cos still haveing the cramps, so she said ok now we are looking at a hysterectomy.
          So i am so confused. I dont want to end up making my IC worse. I cant stand the pains now.
          Thanks so much for your advice. I really need it. I am so confused right now with everything. And to many doctors, and no common treatment.
          thanks again
          stacy


          Current Conditions:
          Endometriosis,1995
          IC,Feb 06
          IBS-C

          Prenecious Anemia
          Stomach Ulcers
          Duodenitis
          Acid Reflux
          Low Blood Sugar
          Hypothyroid
          Migrains

          Surgeries
          Laporoscopy-1995
          Gaul Bladder-1996
          Laporoscopy-2005
          colonoscopy2005
          cysto/hydro-2006
          cysto/hydro-2007

          endoscope-2007

          Meds:
          Elmiron,100mg 2am 2pm
          Seasonique,1 night(helps control pain for Endo)Provera, 10mg 1 night
          Elavil, 150 1pm
          Flexeril, 10mg 1 night(was to be 1 am also but makes me to sleepy)
          Prilosec,20mg 1am 1pm
          Zoloft,100mg 1 pm
          Topamax 25mg 1am 2pmCyannobalamin(b12), 1 injection every 2 weeks
          Reglan, 10mg, 1 3xday with meals-for duonditis
          Ultram 50mg 1 every 4hrs as needed for pain
          Pyridim,100mg as needed
          Vicodin 5/500 as needed for pain
          Heating pad
          Ice Pack
          Arthritis Pain Equate brand 650mg usualy 2 at a time
          Stool softeners w/stimuli, 2am 2pm[/COLOR]

          Hopefuly no more gets added to the list!!!

          I wish the best for all of you and hope the days with pain are few. I wish you peace and calmness... for we all need it, with out it... the pain is worse.
          Try to take the best care of you that you can. When you are not happy with the care you get dont hesitate to get the help you need. Sometimes a 2nd opinion can give the calm and peace which you are seeking.
          My prays go to all of you. For I know there are many who are have many bad days and need a shoulder.. Always remember this site, for its made a huge differance to me and many people. Here you can find the the ear your looking for when you just need to vent.
          When your not looking for Im so sorry and I have no idea what can help you. Here we understand the pains the suffereing and most of all the Constant frustration. For anyone who needs it.. I will do my best to be the ear who can listen and help how ever I can. All my best to all of you.
          Dont forget to take care of you!
          Take care

          Comment


          • #6
            Hi Stacy.
            I am not sure I agree with the kidney doctor who told you to stay on antibiotics for a year. Unless he is meaning the low dose macrodantin or something which is like a prevenative more so than taking a regular strength antibiotic.
            Being on regular strength antibiotics for a long period can cause alot of damage to the digestive tract. I would tread carefully there. I know first hand what they can do. I had to take two rounds of antibiotics a few years back for a severe throat infection that would not go away. Well, they messed my stomach up but good. I actually believe that alot of my tummy issues are the result of taking antibiotics.
            I wish I had some better answers for you. Maybe someone else will chime in. I hope you feel better soon Stacy.
            Jen

            Comment


            • #7
              stacy some doctors just don't get, do they? Why would they push on a sport so hard when are already telling them it hurts there. That uro I saw last month did the same thing to me. OUCH to say the least. I am so sorry it happened to you too. I hope you can find some help and relief soon.
              ~Laura

              There can not be a crisis next week. My schedule is already full.

              March 2006 IC tested positive

              current treatments for IC:
              Zoloft 100mg
              Prelief
              tramadol hcl 50mg (4-8 per day)
              diphenhydramine (1 nightly)
              elavil 25mg, Just started Nov 11

              additional meds for pain if needed:
              darvacet
              loratab
              percocet
              tried Elmiron for over year and didn't see much of a change, gained weight

              Also take Lisinolpril for high blood pressure

              Other conditions:
              IBS '93
              depression '94
              stomach ulcers '95
              Mitral Valve Prolaspe Syndrome '01
              Migraines since childhood
              Chronic Fatique '03


              It's not the number of years in your life that matter but rather the life in your years.

              Comment

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