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  • Help my mom...IC vs. PFD

    My mother lives in SC and had been dealing with an IC diagnosis for almost two years. She's have a hard time finding a good doctor who has experience with the condition. Recently she traveled 5+ hours to Winston-Salem, NC where she met Dr. Albertson who she thought great. Sadly, she followed-up on that appointment with a faxed note including some questions. Dr. Albertson (2 weeks later) has yet to respond. She suffers from chronic migraines. She was told by Dr. Albertson that she has pelvic floor dysfunction. My mother is a great lady. She's confused and frustrated and her family wants to help her. Can someone advise on how you can find a knowledgeable doctor? Can someone share with me the differences in IC and PFD? Any thoughts on the top 3 tips I can share with my mom? Any help you can give would be much appreciated.

    Thanks, a son who wants their mom to feel better

  • #2
    I don't have a lot of info on PFD vs. IC, since my doctor is pretty sure I just have IC, but I know there have been several posts on the boards regarding just this subject. If you search under the PFD area I'm sure you'll find a lot of information (and I'm sure someone more knowledgeable will also reply to this post -- the wisdom of the posters here have given me SO much good info!).

    My "top 3" tips might vary depending on the symptoms -- there are a lot of different symptoms that go with a diagnosis of IC. However, I'll tell you what's helped me -- (1) Elavil! I was worried about going on it a little bit because of the side effects, but it has truly given me my life back. I'm able to function pretty much normally and rarely have pain/frequency/urgency anymore (and if I do, I can usually trace it back to something I ingested, which leads me to) -- (2) The IC diet. I'm not terribly diet sensitive, but there are definitely foods that I cannot tolerate, including citrus, processed tomato, processed soy and sodas. Some people are able to manage their IC by diet alone, which is great. I was not really able to tell what foods were my biggest triggers until I got my pain under control with the elavil, since I basically hurt all the time before. Now it's becoming more clear. (3) Exercise. When I was in a lot of pain I found that early morning exercise, with lots of water during the workout, really helped me manage my pain.

    There are lots of other tips I have for flares, such as 1 tsp of baking soda in a glass of water (for burning), a hot bath, "portable heat" such a the bed buddy or stick-on thermal heating patches and drinking lots and lots of water.

    I have to tell you that reading your post almost made me cry -- what an awesome son you are! We hear so many stories from people with families who get impatient and don't understand, it's so great to see a son like you. Your mother is a very lucky woman to have you. My son is only three but I think my having this disease has already helped him become a compassionate person, I hope he grows up to be just like you :-)

    Reading the info here would really help your Mom as well, it's done wonders for me. Try to encourage her to come to the boards, I think she will be glad she did. Welcome to the ICN!

    Comment


    • #3
      PFD involves a lot of problems in the pelvic floor area - that is the area between the legs. There can be a lot of constipation and problems with bowel movements. Also a weaker than usual urine stream. There can, also, be a feeling of having to urinate more often and it can cause a feeling of menstrual cramp-like pelvic pain in the lower abdomen.

      Comment


      • #4
        Hi,

        I too want to comment on the fact you are a great son to be concerned. I have three boys 14,16,18. Go to the website below, and see if she can find a doctor closer. It will help alot. I go once a week right now trying to get PFD & IC under control and it would be very hard to go 5 hours. I wish you the best of luck..

        http://www.ichelp.com/AskTheDoctor/p...nregistry.html

        Then click on the top where it says IC Questions.
        Then go to Physician Registry and fill out the form and they will e-mail you back with dotors in your area.

        Hopefully she will find someone closer.
        Meds on now:

        dextro 10mg

        5000mg Vitamin D- when tested, I was sooo low.
        Compound Hormones- Had hysterectomy when 24, ovaries out 37

        At night:


        4mg Zanaflex- Fibro & PFD
        plendil- Raynalds

        I have Fibro, IC, IBS, PFD, Raynauds.

        Tried:

        Past Meds
        Lexpro- changed to Cymbalta for better pain relief –off both
        Ultram – three times a day. Helped , I was tired of always being so tired.
        Elmiron-took for a year-
        Topamax-Did not need anymore since on dextro.
        Atarax- did not need anymore

        Pictures: Hubby & Me, Ozzy, My three Sons!!
        What a proud Mother I am!!



        .

        Comment


        • #5
          Thank you!

          Thanks for all your help. I'll collect all these resources and share your words of encouragement with her. I'll also see if we can find a doctor closer... Again, thanks!

          Comment


          • #6
            It may be that the best way to get a response is to telephone her doctor's office. I know some doctors receive hundreds of emails every day and it can take hours they don't have to even read them all.

            I do agree that finding a doctor closer to her home would be good.

            Donna
            Stay safe


            Elmiron Eye Disease Information Center - https://www.ic-network.com/elmiron-p...mation-center/
            Elmiron Eye Disease Fact Sheet (Downloadable) - https://www.ic-network.com/wp-conten...nFactSheet.pdf

            Have you checked the ICN Shop?
            Click on ICN Shop at the top of this page. You'll find Bladder Builder and Bladder Rest, both of which we are finding have excellent results.

            Patient Help: http://www.ic-network.com/patientlinks.html

            Sub-types https://www.ic-network.com/five-pote...markably-well/

            Diet list: https://www.ic-network.com/interstitial-cystitis-diet/

            AUA Guidelines: https://www.ic-network.com/aua-guide...tial-cystitis/

            I am not a medical authority nor do I offer medical advice. In all cases, 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.
            [3MG]

            Anyone who says something is foolproof hasn't met a determined fool

            Comment


            • #7
              oh yes please do call them. I emailed my doc for an rx refill, and they told me that it never got received 7 days later. nor did they get the drug store faxes.
              As I was on the phone she looked in the email, and said omg it is here you did email me. I promptly asked about the 3 faxes, she went to look and told me that some one put them in her mail box.. gee imagine that one..

              So needless to say, the doctor most likley did not get her questions.
              'The will of God will never take you where the Grace of God will not protect you.'

              Comment


              • #8
                what a great son...

                i just have to say that reading your posts made me smile (NOT b/c your mom is sick!!). you are a great son and your parents should be proud of you. i hope my son is half as proactive and compassionate as you are when he grows up

                good luck to you and your mom!

                tracy
                (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                I'd like to be on House, MD as a medical mystery.

                Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                Connor & Mommy by the tree:


                Connor with Santa...so happy!


                I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                Comment


                • #9
                  Just wanted to let you know there is hope!! The main thing is finding a doctor that knows how to treat IC. I am 39 years old and I fought with IC for years not knowing what it really was. Most people go through 3 doctors before they finally get help. I had gotten to where I was walking like a 100 old person, because of pain and pressure, Now that I have a doctor that not only knows how to treat IC, she also has a heart full of compassion to see IC patients overcome this disease. I am now back to a normal life-with fewer and fewer flares. Just don't give up--there is a doctor out there that can help your mom. Give her plenty of support and love---she needs it.

                  Comment


                  • #10
                    Having worked in doctor's offices for many years I have to say that faxing the doc is one of the worst ways to get in contact with them. Unless your doc specifically tells you to fax them- don't. Unless there is a specific mechanism in place in their office to deal with faxed questions, that piece of paper will get piled in a heap with the tons of other info that get pulled off the fax each day.

                    Always ask your doctor "if I have any questions what is the easiest way to get in touch with you." Some prefer phone, e-mail, beeper, etc. My patient's know that if they want to speak with me directly that the best way to reach me is to page me shortly after office hours are over. That way I have plenty of time to speak to them without being interupted.

                    Tell your mom to call the doctor she saw and ask to speak to him or his nurse. If you speak to the nurse remember her name, so you can ask for her by name the next time.

                    You're a great son. Your mom is lucky to have you.
                    Gigi

                    Comment


                    • #11
                      Hi-
                      I think physical therapy is key; when she finds someone, they should be able to give her a regimen of pelvic floor exercises.

                      Also, in Dr. Moldwin's "Interstitial Cystitis Survival Guide", he mentions the importance of short, warm baths for PFD a couple of times daily for several weeks. If she's having spasms in her pelvic floor, he also suggests 2mg (maybe 3mg) of valium for that specific symptom.

                      Good luck!

                      Comment


                      • #12
                        If your mom is willing to drive to Winston Salem, she might look into driving to Greensboro to see Dr. Robert Evans. He's the absolute best doctor I've ever seen, for ANY medical problem. He's a great guy, a great doctor, and he's very up on the latest IC research, medications, etc. He's compassionate and he listens. It's worth the extra 30 minutes or so to go see him.

                        Your mom is very lucky to have such a caring, and concerned son!
                        *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


                        • #13
                          Thanks

                          Appreciate your suggestions.

                          BTW, she does see Dr. Evans...so it's good to know that you like and would recommend him.

                          I'll also pass on the other suggestion about the frequent warm baths... Hopefully we can find a physical therapist soon...

                          Cheers,
                          Ben

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