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  • Pelvic pain but NOT frequency...anyone?

    Hi again!

    Does anyone have general discomfort in lower abdomen without the frequency and/or painful urination?

    That's my complaint and haven't officially been diagnosed yet other then with ovarian cysts and uterine fibroids. Still trying to sort it all out. I see a urologist who specializes in IC on March 1st.

    This sight is SO helpful!

  • #2


    Yes, there are IC patients who have ONLY pain as their main complaint. So, I would go ahead and see the urologist to be sure.

    IC is weird; some have only frequency or frequency/urgency; some have just pain, some have the whole can of worms... it's different in everyone, and that can make it hard to diagnose right away. Hang in there and let us know how it goes And if you have questions, ask away.....
    ****
    Jen

    *Diagnosed with severe IC in 2004
    *Also diagnosed with PFD, fibromyalgia, chronic myofascial pain, IBS, migraines, allergies/asthma, dermatographism
    *Kept trying a million different treatments for all these things until I found what works, and I am doing okay these days with the help of a cocktail of medications and the InterStim, which was first placed in 2007. [I have had 2 revisions - one in 2010 when my battery died and had to be replaced, and one complete replacement (lead and generator) in 2012 after a fall on my stairs caused my lead to move.]
    *Current meds include Atarax (50mg at night), Lyrica (150mg twice a day), Xanax (0.5mg at night and as needed), Zanaflex (4mg at night), hydrocodone (10/325, every 6 hours as needed), Advair, Nasonex, Singulair (10mg at night), oral contraceptives, home instills containing Elmiron and Marcaine (as often as I need to do them).

    **I am not a medical authority nor do I offer definitive medical advice. 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.

    Comment


    • #3
      My symptoms are pain and heaviness, but no frequency or urgency. I was diagnosed with IC, so I know for sure there are different symptoms for different people.

      Comment


      • #4
        Mine can vary, sometimes I just have pelvic pain and sometimes I have frequency and urgency. I'm having a ton of pelvic pain at the moment, the fun never stops
        Christine



        I have been diagnoised for 6 1/2 years now. I have taken a long break from the ICN but really miss helping out my fellow IC patients and want to get back into posting.
        1st hydro 4/07 showed no visible signs of IC but tons of mast cells in all my biopsy samples which did prove IC.
        2nd hydro 4/13/09 showed dark purple glomerulations and I had a capacity of 450 cc's. This hydro proved that my IC had progressed.
        I have tried every oral medication as well as rescue instills and DMSO.

        I have been lucky enough to see Dr Hanno, the top IC specialist in PA who has told me due to the fact that I have not responded to any "standard" treatments that I have a severe, end stage case of IC with a horrible quality of life (didn't have to tell me that last part!)

        Proud wifey of Shane, mommy to Griffin, and step-mom to Logan and Gage
        Also proud mom to the best Bullmastiff on earth, Claus

        Comment


        • #5
          Possibly..

          ....endometriosis? If you're not experiencing u/f or painful urination and have a history of uterine fibroids and cysts, I would think endo could be a possible reason for the pain you're experiencing. Do you have any burning at any time whether you're urinating or just sitting? Endo is a tricky thing, as it mimics IBS, IC, etc.. My Gyn is looking into another lap. surgery because I have that 'old familiar feeling'. Even though all my female organs are completely gone (finally), endo can still grow on other organs. I hope you don't have it, but just suggesting you ask your doctor about the possibility. Best of luck to you....and prayers!

          Danita
          Dani


          -Bladder surgery to correct reflux-'68
          -Terribly painful periods, [email protected] 13 (most likely due to endometriosis, no dx then)
          -4 gyn surgeries since 2003 to remove cysts, ovaries, endometriosis and uterus
          -DX'd w/I.C. before 3rd gyn surgery, but sure I've had it since childhood
          -Gastrointestinal allergies to nuts and shellfish - {I would like to know if there is some connection of gastro allergies to I.C.?}
          PTSD (sexual abuse by teenage boy when I was 4 and s. abuse by adult male who was friend of my Dad's - my parents still don't know)
          -DX'd with IBS in 2000
          -Rhabdomyolysis in 2001 (has not returned)
          -DX'd with Eosinophilic Esophagitis (Asthma of the Esophagus) 3/07
          -DX'd with TMJ in 2000-wear splint
          -Hydrodistention and Cystoscopy w/ biopsy of tissue in bladder-2003
          -DX'd with Epilepsy -2000
          -SSS (Selective Sound Sensitivity)-wear earplugs most of the time to screen out certain noises
          -DX'd with Fibromyalgia (2006)

          Medications:MS [email protected],Hydrocodone-10/650:up to 4day,Levothyroxine,Soma,Clonazepam,Vesicare,Keppra (anti-seizure),Flovent FHA 220mcg (swallowed for E.E.),Elmiron,Instillations-5+per week for flares,Lidocaine,Cysta-Q,Prelief, Dulcolax,Baby Aspirin(for FM),God blessed me w/2 boys: Devin-14 and Logan-9, Jim, my husband of 18+ years who sort of understands what I.C. is...still working on educating him!, my springer spaniel "Wookie" ('cause he makes sounds like 'Chewbacca' from "Star Wars" when my son plays with him) and the most important 'medicine' of all...PRAYER...because ONLY God knows the answer to why we are all going through this awful I.C.!

          Comment


          • #6
            My problem took a long time to be diagnosed because it was mainly pelvic pain.

            Last year I had a CT that revealed ovarian cysts, cysts & endo removed, IC suspected, then a hysterectomy in December. Still have pelvic pain after all that.

            The only times I have external pain (horrible clitoral!) and urgency/frequency is in the middle of the night if I drink wine or food with certain preservatives.

            My pain is getting better with exercise, massage, trigger point and meds but is always worse after urination (internal pain, not external) and after (not during) sex. I'm also trying out a systemic/intestinal candida treatment as that can cause abdominal pain and sometimes be mistaken or a cause for IC.

            I sympathize with you! Good luck with your treatments! PM me anytime!
            8/2007 - My constant bladder pain is now gone due to a surgery where the ilioinguinal and iliohypogastic nerves were cut. I still have IC symptoms but they are improving. It's still early to say, but I believe this solution will work permanently for me.

            Symptoms since 2005 - 24/7 abdominal pain, cold sweats, low back pain, vulv, etc.
            Surgeries: Spinal Fusion L4-L5-S1 10/97, Anterior spinal fusion L5-S1 9/05, Lap for Cysts, Endo 9/06, Hysterectomy kept cervix 12/06
            Meds: Morphine, Neurontin, Valium, Hydroxyzine, Vivelle Estrogen, Thyroid,
            Exercise & PT: All at least 4 times a week
            Whirlpool baths, Moist heat, Treadmill, Stretching, Trigger point, Yoga Positions; Ab & Pelvic Massage

            Comment


            • #7
              I do, but like another said, mine too varies (depending on diet and etc..). I started out just having like the burning, stinging, acid needles when I peed and thereafter feeling, and every now and then I had some back and abdominal pain. I also have problems with ov. cysts. I had surgery when I was only 17 due to cyst rupturing, blood trans. and all. My whole life I have had pain w/ that so when I had pain w/ this IC I just at first assumed it was due to that. Anyway, I didn't have the urgency problems until my 1st daughter was born. My x-dr, told me it was just because having a baby tilted me or some junk, but after my 2nd angel I started having a lot of pain, and the burning as stated above, that is when it seemed to get worst. I was diagnosed in nov. and and they tried a lot of things so now I will soon be taking Elmiron there is a video to watch with the pamphlet and stuff and it really describes a lot of the different symptoms and stuff. I didn't have any frequency though, hardly, until this month after my biopsy since the 9th that's all I've had is frequency and I have a lot of lower back pain too. I am optimistic though after being on this site that things will get better. They have to, cuz I just don't think I can stand to live with this kind of pain and it is really hard to enjoy your life and children when all you do is hurt.
              Mrs. Ridings


              I was on...
              Loestrin 24(to prevent period induced flares)
              Elmiron since Feb.'07 for a year and half
              Atenolol for Migraines(caused by elmiron) since June '07(Had to have the amount doubled)
              Tried Prevacid didn't work.
              Tried Axert for migraines didn't work.
              Tried Frova for migraines made worse.
              Atarax Feb.'07-Feb'08
              Used to take IBS meds of all kinds, now I use Yerba Mate guayaki drinks, eating lots of fiber and flax seed, and taking probiotics and added magnesium. My probiotics help w/ flares too.


              Now for the occasional flare related to stress, I take probiotic eleven and marshmallow root and it will make it stop and Im fine again. Otherwise I dont have many problems w/ my severe IC like I used to.Thank God!

              Find the good in all things and then
              anticipate the good so that you may enjoy it.


              (KJV)Psalms 37:
              3 Trust in the LORD, and do good; so shalt thou dwell in the land, and verily thou shalt be fed.
              4 Delight thyself also in the LORD: and he shall give thee the desires of thine heart.
              5 Commit thy way unto the LORD; trust also in him; and he shall bring it to pass.

              Comment


              • #8
                That's how it started for me almost two years ago: just pelvic pain. The frequency, urgency, and painful urination came several months later. It wasn't until I had other symptoms that I finally got an IC diagnosis, but I have heard of many patients who were able to with pelvic pain and pain after sex only. Pelvic pain is still my biggest complaint, even thought the others are bad as well! I do have PFD as well as IC, may be something you could look into....
                Hope you find some relief soon!
                Rachel
                DX's:
                IC; PFD; possible Fibromyalgia; IBS;

                Symptoms: Frequency, Urgency, pelvic and bladder pain, bladder and pelvic spasms, difficulty starting urination, weak stream, incontinence, vaginal and urethral pain

                I've Tried:
                three Hydrodistentions, various Rescue Installments; 6 DSMO treatments; Pyridium Plus; Proced; Detrol (patch); Elavil; Uricet K; Elmiron; Nortiptyline; Ultram; Allegra; Ditropan; Ditropan ER; Vesicare; regular Lidocain; Neurontin; Lyrica; and few more I can't remember!
                Currently using:
                Valium; Vicadin; Proced DS; Claritin; Buffered Lidocain; Cymbalta; Baclofen; Prazosin @ night (also on Prednisone and Adderall for my joint pain and severe fatigue)
                Heating pads; frozen water bottles; A&D ointment; Poise pads; IC dieter since 8/06; yoga; imagery & relaxation CD, Mindfullness, self healing CD's; hot baths; seat cushion; prayer
                I am 28 yrs old, dx'ed in '06, still trying to get my health undercontrol!!

                Comment


                • #9
                  Hey soccermom, one more thing. My pelvic pain didn't cause frequency or urethral pain until one ob/gyn (who suspected ic) really messed with the bladder during the pelvic exam. He was trying to cause a response and I have never gotten over it.

                  Ask your ob to be gentle in pelvic exams!
                  8/2007 - My constant bladder pain is now gone due to a surgery where the ilioinguinal and iliohypogastic nerves were cut. I still have IC symptoms but they are improving. It's still early to say, but I believe this solution will work permanently for me.

                  Symptoms since 2005 - 24/7 abdominal pain, cold sweats, low back pain, vulv, etc.
                  Surgeries: Spinal Fusion L4-L5-S1 10/97, Anterior spinal fusion L5-S1 9/05, Lap for Cysts, Endo 9/06, Hysterectomy kept cervix 12/06
                  Meds: Morphine, Neurontin, Valium, Hydroxyzine, Vivelle Estrogen, Thyroid,
                  Exercise & PT: All at least 4 times a week
                  Whirlpool baths, Moist heat, Treadmill, Stretching, Trigger point, Yoga Positions; Ab & Pelvic Massage

                  Comment


                  • #10
                    Soccermom,
                    I don't have frequency/urgency either. I suffer from abdominal and lower back pain, bladder spasms and urethral pain, retention, lack of ANY urge until post-void, whether it's a normal void or I have self-cathed, and severe PFD. I was diagnosed via the Potassium Sensitivity Test and later a cysto/ hydro. IC really is different for everyone.

                    Good luck with your appointment. Hopefully your doc can find out exactly what's going on and get you on a path to feeling better!

                    ~Claudia

                    "A heart is not judged by how much you love; but by how much you are loved by others."
                    ~ The Wizard of Oz

                    "If I ever go looking for my heart's desire again, I won't look any further than my own
                    back yard. Because if it isn't there, I never really lost it to begin with!" ~ Dorothy


                    Comment


                    • #11
                      My biggest complaint since this all began for me almost 3 years ago has been chronic pelvic pain. I also have trigger points and pain and extreme tightness along the right side of my back (thank goodness for a wonderful fiance who gives great massages) I currently am going thru my first flare with frequency and urgency!! b/c I never had those symptoms it took them awhile to pinpoint. After ruling out a million other things, my doctor began to see thru the questionaires at every visit, that I was suffering from nocturia (frequency at night). I never saw it as a symptom, b/c I think I have always been that way!! And as I have learned from these message boards - IC varies so much per person, it seems no sympton can be wrong!

                      Hang in there! I wish you all the best dealing with that pain!!

                      Comment


                      • #12
                        I have a little of everything, pelvic pain, urgency/frequency. My husband kids me when we go to Houston to visit my family that on the way we know every clean restuarant/gas station along the way! (I know the last thing I do before going to work and the first thing I do when I get to work is go to the bathroom -- as its easily an 1 hour drive-unless there is a lot of traffic or something holding us up and then its alot more).

                        Right now, I'm in the middle of having a lot of frequency, especially at night, the doctor has me on zanaflex and between that and my migraine medicine you would think I would sleep through the night- I think I sleep about the first 3 hours still and after that I STILL get up every hour or so and by Wed., I am too tired to even want to get up and go to work. Today is a State holiday for Texas ( Texas Independance Day) but we have to have some staff here, and since theres not too many people who knows what I do, I'm it.

                        Anyway, just hang in there, it does get better.

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