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  • New to here- Not to IC :(

    Hi! My name is Gina. I'm 20 and was diagnosed with IC in 08 but have been suffering since 14. Let me just say I have had a LONG journey to finally arrive at this diagnosis. I also have cylic vulvodynia, fibromyalgia, IBS, and fructose intolerance. I have always had women problems which include pelvic pain, pain with sex, heavy periods and irregular periods. When I was 14 I went to get a physical for swimming and found out I had a UTI. After this first initial UTI I could not get rid of them. Finally I found out most of the cultures were negative but I still took my antibiotics. This went on for 2 years. I've seen 20+ urologist and NONE of them diagnosed me with IC. I got my diagnosis from a gyno. Treatments I've done include: elmiron, no effect, elavil, no help, neurotin 3600 mg a day, NO HELP, hydroxine, no help. DMSO instilations, cystoscopy w/hydrodistension, PT with biofeedback (this helps a bit), pudendal nerve blocks x3, no help, and trigger point injections. Along with these meds for my IC i've taken cymbalta for my fibromyalgia and flexerol, creams for the vulva with NO HELP! I am at my wit ends right now. I'm in school full time to be a nurse practicioner in uro-gyn so I can help people like me.

    I have lots of questions maybe some of you can help with. When you have some of the related conditions to IC like fibromyalgia, and cylic vulvodynia how do you know whether its your IC or those things acting up? its so hard to distinguish!!!

    I found a new uro @ the university of michigan and she is WONDERFUL. I've only seen her 2 times so far. I also see a gyn is the vulvar clinic there.

    I am sooo thankful I found this forum. I was beginning to get suicidal because I feel crazy sometimes. Its a lot to handle. I also work full time and it is hard when people see me and I look fine but on the inside I'm not.

    I am going to give my meds another try and start taking them faithfully.

    As of right now I'm on:
    Elavil 75mg at bedtime
    Hydroxine 100 mg at bedtime
    Tramadol as needed
    Percocet as needed
    Neurotin 3600 mg a day
    Cystoprotek

    My symptoms are: severe pelvic pain, pain with intercourse, frequency, urgency, nocturia 5-7 times a night, IC belly (looks like im prego lol)

    How long does it take before the meds will have there theraputic effect? 3 months? Also for some of the older members who were diagnosed around my age, will my IC get better?
    Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

    Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

    Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

  • #2
    Hi, Are you trying the IC diet? I didnt see u mention it. Im a stubborn person but Im just now trying it. Alot of the medications that u have and are taking may render ineffective for u if u dont try the IC diet. its basically getting rid of spicy foods, citrus fruits and drinks, sodas, cofees, teas, condiments, and products with vinegar like soy sauce, pickles. ect. For alot of people it will reduce ur symptoms and help ur meds to work better. but there are some who are not diet sensitive. I would try it for at least a few weeks and keep a journal. I hear that elavil can help VV, or u might want to get a referral to a pain clinic. Also maybe u want to get screened for PFD and endometriosis for ur painfull intercourse. It can take 6-12 months for elmiron to work. those other meds like elavil, atarax, and neurontin usually take 1-3months sometimes good luck.
    Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

    I have moderate-severe IC

    Currently stopped taking all medications due to pregnancy

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    • #3
      I had a laporscopy in 04 and no endometriosis. I do have PFD. I dont necessarily follow my IC diet because I did not know about it until 2 weeks ago but the foods you listed I dont eat because of my fructose intolerance. I am trying to get to a pain clinic just dont know where to look.
      Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

      Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

      Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

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      • #4
        So glad you found us. So sorry you have been through so much at such a young age. I hope your new urologist can get you on a treatment plan that works for you. I will also suggest checking out the diet as described here. Feel better soon!

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        • #5
          So sorry Gina, but at least you know now what you have. Seems like the younger ladies tend to suffer more, but there are some who go into remission or get relief. Don't be depressed GF, and stay on your antidepressants. If one does not work within a few weeks, definitely speak with your doc. Please do not discontinue any meds without consulting your doc.

          It is difficult being so young and trying to achieve a career where you can help others when all you want is help for yourself. Do you have a counsellor you can talk with? Sometimes just having an impartial third party where you can pour your heart out helps. Your docs don't want to see you cry and are usually uncomfortable with that, but counsellors are used to it. May do you good.

          Take care of YOU, we need people like you who will take care of others. Wish you much luck, please watch out for yourself. Let everyone know how you are doing. Jill, wife of Bob

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          • #6
            Hi Gina-

            Welcome. Glad you have found better doctors. My best doctor is also at a university hospital. I have found there is much better pelvic pain care at these types of places than a typical gyno office.

            You should definitely give the IC diet a try.

            The weird thing about me is I have very few food triggers. So it may or may not work for you, it helps some more than others.

            Have given up alcohol except for a few cheat occasions like a birthday and am down to one cup of coffee a day b/c my bladder and these things are not friends.

            Wishing you pain relief soon.
            DX: IC, V, VV, PFD, Generalized Anxiety Disorder, PN (just chronic inflammation of the nerve, not an entrapment), Depression

            Current Treatments: Effexor XR, Gabapentin, Oral Valium, Methadone, Lidocaine, ice/heat packs, sometimes vaginal valium suppositories, Vicodin

            My Pelvic Pain Blog

            FB Fanpage for My Pelvic Pain Blog

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            • #7
              Hey Gina, sorry to hear you're suffering, I'm also new here and took the advice I was given, perhaps the meds I take you could investigate and see if they work for you

              This is what I am taking and it is working:
              Amitriptyline - 50mg morning, 50mg Night
              Zapain (pain killers) 4-6 pills a day - each pill contains: Codeine Phosphate 30mg and Paracetamol 500mg
              Atarax (anti histamine) 25mg - 3-4 pills a day
              Naprosyn (anti inflammatory) 500mg- 1 morning, 1 at night

              *Love & Hugs from the doll in the UK
              This is what I am taking and they work:
              Ciprofloxacin 500mg (1 after jiggy)
              Tramadol 50mg (1 or 2 pills) up to 4 times a day - Painkillers THAT ARE AMAZING

              *Love & Hugs from the doll in the UK

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              • #8
                Thanks guys! Its so nice to finally have people to talk with all of this stuff about. I do see a counselor to talk about stuff. I finally broke down one day and started crying to her and told her I wanted to die because I didnt know if I could live my life this way.

                I see some of you have vulvodynia? I see a specialist in the vulvar clinic and I dont think they are helping. I need some help I have horrible flares when its time to have my period!!!
                Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

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