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For my Girlfriend...(soon to be fiance)!!!

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  • For my Girlfriend...(soon to be fiance)!!!

    My name is Brad...I'm trying to find out others input so I can help my girlfriend, Summer, cope with IC or at least symptoms of it.

    She had a Urologist from age 14-24 (now) that recently dismissed her due to "not following medical procedure and advice"...This is BS b/c she and I have spent over $5,000 on medication and pain management doctors over the past year...We both feel that the doctor dismissed her due to not knowing the problem and not being able to address the situation...anyways, he diagnosed her with IC due to frequent urination/bladder pain/kidney pain/cysts on bladder/bladder holding 5 oz. of fluid...this diagnosses was about a year ago. He dismissed her a month ago and we have been seeing another Urologist now to try and figure things out, so far this new urologist has perfomed a test to photo the bladder and also to test the volume of the bladder. Well, the results of the test were "all normal - including bladder volume"...completely different from what the other urologist told her. There were, however, 15 or so bumps inside the bladder that appear to be abnormal...he informed us that these were "air bubbles within the bladder"

    I guess my main questions are:

    1 - can these bumps be attributed to "air bubbles"?
    2 - does the bladder return to normal state over a years period and heal itself of cysts and volume retention?
    3 - What is the cause of this lower back pain? her first urologist said it was due most likely to kidneys (i thought kidneys were in the upper torso)...her new urologist says it may attributed to IBS or gall bladder.

    As you can tell, I am completely lost in all of this...I just know that her old urologist said she had IC and needed Elmiron, Detrol LA, Prelief...etc etc etc...and her new urologist says that bladder/kidneys are normal and she just needs to hold back the urge to urinate.

    Anyways, any advice/help will be greatly appreciated.

    Thank you in advance!


  • #2
    Well from my understanding the dr can better diagnose her if she has a bladder cysto/hydro..If she has cyst, well they are very painful!! and I dont think they heal by themselves.
    Also have you looked up PFD- pelvic floor disfuntion..This can cause retention and back pain..

    You should also check out the IC handbook. You can get some of your answers there to.. Below is the link... Keep asking question the more you both know about IC the more she will be able to get it under control..


    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:

    Diet Reference Sheet:

    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.


    • #3
      Good grief... it sounds like you two have been through hell and back!! I want to tell you how happy I am to hear that you are standing by Summer throughout all of this -- you truly are an angel and she is lucky to have someone so supportive in her life!!

      First of all, I have never heard of "air bubbles" in the bladder. This is a very weird thing for a doctor to say. Second, doing just a cystoscopy (the thing where he took pictures of her bladder) in his office often will not diagnose IC. IC tends to "hide" from that kind of cysto -- usually, urologists who are truly looking for IC will do what is known as a cystoscopy with hydrodistention -- this is done under anesthesia in the operating room. During this, the urologist can stretch the bladder to a point that would be horribly painful if the patient were awake -- but this act of stretching can get the bloody spots (glomerulations), irritation, and possible ulcers that characterize IC to come out. This is how I was diagnosed.

      There is also another test called the potassium sensitivity test, in which a potassium-containing solution is instilled into the bladder via catheter -- if it causes a flare-up of symptoms, the patient is considered to have IC.

      You can read more about these diagnostic procedures as well as other IC treatments Summer has not tried in our Patient Handbook -- This handbook also has the IC Diet in it. If Summer is not already on this diet, I encourage the two of you to try it -- many ICers say this step alone helps the symptoms tremendously!

      Finally, it sounds like this last urologist is being just as dismissive as the first -- it may be time for a third opinion. I know it stinks to have to keep going to new doctors, but many ICers have had to go to lots of them before an accurate diagnosis and good treatment plan is achieved....

      And... encourage Summer to come to the boards herself We'd love to have BOTH of you as part of our community

      *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.


      • #4
        WOW, It really sounds like you both been threw alot. I agree you are doing a wonderful thing helping Summer. If you have IC stress is one thing you want to avoid. Im sure your a true god send to her.
        I too have IC and was diagnosed with having a cystoscopy with hydrodistention. It took me over 10 years to get a proper diagnosis. If you feel that your doctors is not doing his or her job, dont feel you have to stay with thats doctor. I had to change a few doctors, and it is worth it.
        I also have never heard of having air bubbles inside the bladder. The only true way i have heard of geting the diagnosis is the the cystosscope. Before I could getany of this done. I did not have any insurance also. My doctor made me go off from work, and go to the what we have here is the family Independant Agency, where you can qualify for medicaid. With this you can get out patient surgies, and medicantions. The only real problem to get it is that you have to be low income...or put on medical leave, or not working. Im sure every state is differant for its exact guide lines, but it might be somthing which would be a benifit to have at least for a while till the proper test can be done.
        I have a lot of medicantion i have to have also. But some of it is not covered. So i go threw a patient assistant program to get my Elmiron. This program you can many types of medicantion all you have to do is ask your doctor for a form and its very little to fill out and they fill out also.
        Here is the number for the program you can ask for your own self if you can qualify...800-625-6227. It is the johnson and johnson health care system inc,patient assistance program. This is how i get my Elmiron other wise i not be able to get it.
        Some other advice which my uroligist tell me just last week, Never hold in the urine! if you feel you have to go ,go! last week, my bladder has spasims, and became "paralized" i could not pee the whole day long. So the doctor say to me as soon as you feel you have to go, dont hesitate go as soon as you feel it.
        And for your Gf to have a small bladder, well, unlesss its been streached out from the cystoscopy with hydrodistention, its not likly to streach out on its own. I cant imagin how she is feeling with cysts and all this. I too have lower back pain. for years and i was told it was also a symtom of IC.
        Has she ever been check for any other conditions, such as Endometriosis, or the PFD,pelvic floor disfunction. These things can also cause lower back pain.
        I have had my gaul bladder removed years ago. If it is the pain from that she would also be experianceing vomiting. and pain up front just upper part of the ribs. and high up on the back. Lower back is more likely to be the kiddnes.
        Another helpful site is it has a lot of info about Ic and related issues and if you dont wish to buy the ic-handbook, you can find it most likely at your library. I found a copy in mine and i have a small town.
        With IC, most of us experaince other abdominal conditions, such as IBS, constipation, and just in general lower abdominal pain. I think its rear for any of us to not have at least one of these issues along with it. If IBS is an issue, medication is out there, or well a good high fiber diet is best. I tried some IBS meds and had bad restions to them. So now i am stuck eating lot of apples, and high fiber cereal, and breads. If you can manage to get bread with 2-3grm of fiber each piece its best. Ceareals, oatmeal is good if you can tolorate it, and cold cereals, try to get at least 5 grms per serving. Also eating an apple with each meal helps.. just depends how much you need the extra help.
        I wish you both best of luck, and I hope some of the info we all can give to you will help you find some answers. This Forum is wonderful, everyone is very helpful, and they all lend a great strong shoulder when we have times of an emotional brake down. Keep us in mind when you need to just let it out or have any questions. and please have Summer come on here also, its a good outlet and she too can get her own answers possibly answered.
        Wish you both good luck, dont take crap from any doctor.If your not happy with your treatment or diagnosis, dont except it till your sure its the right one. Remember the Doctors work for you, not vice versa! Be strong with them.Some times you have to just say hey i want this test done or that test done. I have had to litterly say I want you to do this...and the say ok we can do it.
        Take care the both of you!!!

        Current Conditions:
        IC,Feb 06

        Prenecious Anemia
        Stomach Ulcers
        Acid Reflux
        Low Blood Sugar

        Gaul Bladder-1996


        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