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  • New and maybe have IC

    Hi everyone - I am hoping someone can help guide me. After what I assumed to be a myriad of either uterine or bowel type problems and many procedures (I had a laparoscopy, hysterosopy (but that was for a narrowed cervix), a endoscopy and a sigmoidoscopy), I am coming back with NOTHING! I have a history of UTI's but lately this pain has had a clear urinalysis.

    Here are my symptoms and I hope you can help:

    Slight bloating in the lower area (below belly button)
    Sensitive in that are when I lay down on my stomach
    When I have to pee - I HAVE to pee
    Sometimes a weird feeling/pressure when I urinate
    Before my period - oh boy - things are not fun
    Right now I have pain that feels like glass is cutting me or things are poking me in that area
    Pressure at my rectum


    My diet:

    I do drink coffee and teas (I know not good for IC but i didnt know I might have this)
    lots of whole foods, fish, veggies, nothing white, fresh fruits (I do make smoothies and am wondering if strawberries and blueberries are ok?)
    I exercise regularly too

    Supplements I take:
    Folic Acid
    B12
    b6
    Fish oil
    NAC from time to time
    Vitamin C
    Multivitamin

    I am trying to find a urologist in this area -- wondering what they do to determine this? Also - are there health risks associated with this? Structural damage to the bladder? Cancer Risk? I am 31 years old and am kinda worried...

    If anyone can please help me understand IC and what at a glance I should NOT be doing based on the above, that would be great. Also is there anything I can do to CALM this feeling down? I drink water like a man woman so I am doing that but anything else? PS - I came across a few videos suggesting valium, etc...no way. So anything OTHER than drugs - would be helpful. I am not willing to take any of that no matter what my pain is like.

    Thank you,

    Jaime

  • #2
    Wow, your symptoms scream endometriosis to me. What was the results of the laparoscopy?

    Have you tried to tweak your diet at all? Just eliminating the coffee and tea could help so much -- at the very least not put even more pressure on an inflamed area. And the Vitamin C...that could totally be contributing. Even if it's buffered or whatever. Maybe try and ditch your vitamins for a week and see if that makes a difference.

    All of your symptoms could be the result of Chronic Pelvic Pain rather than specifically IC. It's all kind of semantics at this point, though. It's all tied together and while you might have pain in one area it might be referred pain coming from another place entirely -- something akin to neuropathy of the pelvic area.
    Mom to two littles (remissions while pregnant/breastfeeding)
    Sufferer since mid-90s
    Finally dx'd properly much later

    Comment


    • #3
      Thanks for the reply. So are these NOT symptoms of IC?? I am sitting here half laughing and half crying because I really dnt know what to do anymore. Lap revealed no endo -- I obviously would know that's be the issue hence my suspicion of IC. Ugh - so frustrated.

      Thnx for the reply.

      Comment


      • #4
        I didn't mean to imply that it's not IC. What I meant was that all of these symptoms and even all of these conditions (IC, IBS, Endometriosis) that cause pain in the pelvic area are now thought to be related to each other in some way or another. The thing is is that no one seems to know what's causing it exactly, or why some people have different symptoms, or why some treatments help some sufferers but not others.
        The reason I immediately thought endo is because of the pain worsening as you get close to your period AND your rectal pain. But that's kind of the old way of thinking. Nowadays docs who specialize in chronic pelvic pain wouldn't be so quick to label it endometriosis, especially with the clear laparoscopy. And for what it's worth, I had horrid pain with my periods practically forever yet my first lap showed minimal endo and my second showed absolutely nothing.

        Your best bet is to find a practitioner who will listen to you and encourage you to be your own advocate. Someone that won't balk at giving you pain medication if you need it or roll their eyes if you want to discuss alternative/holistic options.

        Check out the International Pelvic Pain Society for docs. They'd be your best bet rather than going on the long, frustrating journey of popping from one urologist or gynecologist to another.
        Keep laughing if you can. It sucks -- and being stressed about it only makes it worse. Easier said than done, I know.
        Feel free to PM me if you want to commiserate or whine. Support is good.
        Mom to two littles (remissions while pregnant/breastfeeding)
        Sufferer since mid-90s
        Finally dx'd properly much later

        Comment


        • #5
          hi - thanks for writing back. So DO you have endo? Do you have children?

          All of what I read about IC suggests that symptoms can worsen prior to your cycle - is that true? I am actually very concerned that you say they "scream" endo.

          I am beyond miserable right now. I am sick of doctors, sick of forums, sick of adjusting my diet, lifestyle, sick of commiserating with people and getting nowhere, etc...and nothing is working - now I have the headache of a lifetime because I have had no coffee. I dont drink, I dont smoke - that was my last enjoyment in my life lol and now this?! I am not a happy person right now (clearly)

          So in my previous post I asked out they will determine IC, if there are any long term effects from it, and what the heck can I do???? I am a person of ACTION and want a solution asap. I live a very active lifestyle, am young, and am over this....already! lol.

          Comment


          • #6
            Hi Jaime. Lots of people with IC have other conditions that also cause pelvic pain. Although I had a laproscopy in 2007, endometriosis did not show up on it. I found out I had endometriosis in addition to IC after lab results came in from tissue removed during the laproscopic surgery. It must not always be easy to see. In any event, if you want to try some things to see if you can diminish the inflammation and pain you are experiencing, the IC diet is a great place to start. That made a big difference for me. It is true I missed coffee and wine and all those other acidic goodies I so loved, but getting out of pain was worth the sacrifice to me.

            You might also want to try gentle detoxing.

            If you haven't already done so, looking around on this website will help you find products that may provide some relief. I haven't been here for awhile and I'm still enjoying a 3+ year remission of IC, but i used to find Prelief helpful.

            I hope you are able to better pinpoint what is causing your discomfort and that you will be feeling better soon.

            barb

            Comment


            • #7
              I have or had all of your symtoms, minus the glass-like pain. I have VERY mild endo, my doctor says not enough to cause any of my symptoms. I also have IC... which has caused these symptoms.

              The feeling in your rectum was a big one for me... I have pelvic floor disorder along with my IC, and physical therapy DRASTICALLY improved my life. I had the potassium sensitivity test to diagnose me. My doctor didn't think I had IC, but didn't know what else it could be if it wasn't... so he did the test, and I had an instant reaction. Sure enough... once I started the IC diet and physical therapy... I no longer had an increase in pain around my period. So it wasn't the endo.

              If you don't want to take any medicine to improve your symptoms (I'm not clear on whether you're anti-meds or just anti-pain meds, I would recommend checking into the IC diet INSTANTLY. I would also stop taking Vitamin C- that is a huge flare-inducer for IC, and you can get your C through your diet. I know B Vitamins bother some people, but they don't bother me. I would stop your multivitamin if it contains C... which most do. As you'll see on the diet, blueberries are generally tolerated, strawberries are not. It also talks about coffee and tea.

              Do not worry about an increased risk of cancer because of IC. There is no correlation that anyone has found.
              Symtoms started July 2010.
              Severe pelvic floor pain only.

              2 time PT graduate!
              In medical remission since August 2011; able to eat and drink anything I want currently.

              IC meds:
              200 mg Elmiron in the morning
              100 mg Elmiron @ night
              Macrobid after intercourse

              03/11 07/11 01/12
              If at first you don't succeed: 07/26/2013!

              Comment


              • #8
                Thanks Barb - so what happened with your endo? I know my doc did an endometrium biopsy and it was normal. What "tissue" did he test?

                So what would you suggest in my case - get another lap??

                Good to know your symptoms have subsided.

                So I am still not clear on the "steps"

                *diagnosis
                *treatment

                Is there anything I should know when I go to the urologist Friday?

                Comment


                • #9
                  Originally posted by Jaimegurl23 View Post
                  hi - thanks for writing back. So DO you have endo? Do you have children?
                  Yes, two children. Yes, I do have endo.

                  Originally posted by Jaimegurl23 View Post
                  So in my previous post I asked out they will determine IC, if there are any long term effects from it, and what the heck can I do???? I am a person of ACTION and want a solution asap. I live a very active lifestyle, am young, and am over this....already! lol.

                  Right now they're going by symptoms to diagnose. Thank goodness, since up until recently they were only using a hydrodistension with cystoscopy to diagnose and that was excluding a lot of people (like me) who were suffering but no one would help. So that's one positive for you to consider -- if you can find a doctor who's on top of the latest research, you'll have found yourself an advocate rather than have to wait years and years like I did.

                  If you do approach this from a diet stand-point, as I did in the middle of my journey, you need to be patient and you need to be consistent. And you need to realize that while there's a specific diet being suggested, it does not work for everyone and it might only sporadically work for those it does help. This whole condition (or group of conditions) is confusing and frustrating. That's why you'll hear about sub par care from clueless doctors so often. Even doctors don't know much about it the why's or the how's.

                  I'm sorry I can't be of more help with giving you ideas on how you can get rid of this immediately. It's a lot more complicated than that. It's awesome that you want to be proactive and you SHOULD be proactive about it but there are no easy answers with this...
                  Mom to two littles (remissions while pregnant/breastfeeding)
                  Sufferer since mid-90s
                  Finally dx'd properly much later

                  Comment


                  • #10
                    Thanks MeResque...

                    Well it IS sort of interesting what happened last night...

                    I had no symptoms all day (my period is due in a few days) and then I come home to cook dinner....

                    I made chilean sea bass with LOTS of lemon and garlic and kale and tomatoes. I also had a good amount of gluten free chocolate chip cookies. I had a pretty rough night. That is when I found this board. So then, I take my vitamins before I went to sleep -- I took fish oil, vitamin C, and B6 and my multi (which also has C) and went to bed -- had to sleep with a heating pad on me because I was in so much pain...

                    I should mention to the board that my previous hysteroscopy and lap were because I had a DnC and the doc (an Ashermans specialist) wanted to check for scar tissue. My uterus was fine - good lining, no scar tissue, etc...just a slightly narrowed cervix, which he addressed during the hyst. The lap was to check for endo (because I had 2 blocked cycles) although I had both this specialist and another in LA suggest that that would NOT be likely as I A)just was pregnant and B)only had 2 blocked cycles and that is not enough to cause endo in such a short amount of time. I just want to give you a clear picture of why I had what I had and what I have been told, etc...

                    Well I took a look at the diet - ya know, there is a lot I am already following (with the exception of some citrus like the lemon and the coffee/tea of course)....I have a ripping headache right now...ugh.

                    I am open to certain meds but I am a more holsitic person. I am DEF not open to pain meds. No way. To each their own, but its not for me personally. Depends what the meds are and why, I am open. I also have fibromyalgia and so many people take medication for it. I don't. I manage it through a healthy diet, sleep, meditation and things like that.

                    Comment


                    • #11
                      Thanks for the help. OMG tell me about incompetent doctors!!! I had a whole other gyno situation where that was the case - its scary really! UGH!
                      I have a doc appt on Friday (which is when I am sure I will get my period of course lol) and hope to get some more info. :/ Thanks again.


                      Originally posted by MamaZ View Post
                      Yes, two children. Yes, I do have endo.



                      Right now they're going by symptoms to diagnose. Thank goodness, since up until recently they were only using a hydrodistension with cystoscopy to diagnose and that was excluding a lot of people (like me) who were suffering but no one would help. So that's one positive for you to consider -- if you can find a doctor who's on top of the latest research, you'll have found yourself an advocate rather than have to wait years and years like I did.

                      If you do approach this from a diet stand-point, as I did in the middle of my journey, you need to be patient and you need to be consistent. And you need to realize that while there's a specific diet being suggested, it does not work for everyone and it might only sporadically work for those it does help. This whole condition (or group of conditions) is confusing and frustrating. That's why you'll hear about sub par care from clueless doctors so often. Even doctors don't know much about it the why's or the how's.

                      I'm sorry I can't be of more help with giving you ideas on how you can get rid of this immediately. It's a lot more complicated than that. It's awesome that you want to be proactive and you SHOULD be proactive about it but there are no easy answers with this...

                      Comment


                      • #12
                        PS - what is pelvic floor disorder - how do you know if you have it and also what is the potassium test?

                        Originally posted by meResque View Post
                        I have or had all of your symtoms, minus the glass-like pain. I have VERY mild endo, my doctor says not enough to cause any of my symptoms. I also have IC... which has caused these symptoms.

                        The feeling in your rectum was a big one for me... I have pelvic floor disorder along with my IC, and physical therapy DRASTICALLY improved my life. I had the potassium sensitivity test to diagnose me. My doctor didn't think I had IC, but didn't know what else it could be if it wasn't... so he did the test, and I had an instant reaction. Sure enough... once I started the IC diet and physical therapy... I no longer had an increase in pain around my period. So it wasn't the endo.

                        If you don't want to take any medicine to improve your symptoms (I'm not clear on whether you're anti-meds or just anti-pain meds, I would recommend checking into the IC diet INSTANTLY. I would also stop taking Vitamin C- that is a huge flare-inducer for IC, and you can get your C through your diet. I know B Vitamins bother some people, but they don't bother me. I would stop your multivitamin if it contains C... which most do. As you'll see on the diet, blueberries are generally tolerated, strawberries are not. It also talks about coffee and tea.

                        Do not worry about an increased risk of cancer because of IC. There is no correlation that anyone has found.

                        Comment


                        • #13
                          Pelvic Floor Disorder: http://www.pfdnetwork.org/what/index.html#disorder

                          Potassium Sensitivity Test: http://www.ic-network.com/whatisinte...stitis/PST.pdf

                          Some doctors do not do the PST any longer. I liked it because it gave me the definite answer I was looking for. My gyno immediately instilled a soothing rescue solution afterwards, and I did not have prolonged pain following.
                          Symtoms started July 2010.
                          Severe pelvic floor pain only.

                          2 time PT graduate!
                          In medical remission since August 2011; able to eat and drink anything I want currently.

                          IC meds:
                          200 mg Elmiron in the morning
                          100 mg Elmiron @ night
                          Macrobid after intercourse

                          03/11 07/11 01/12
                          If at first you don't succeed: 07/26/2013!

                          Comment


                          • #14
                            Hi there,
                            Uro's are all very different and even though the new guidelines show they should treat by symptoms, those are new guidelines and alot of them will still insist on cystoscopy with hydrodistention which is with general anesthesia. See my link below. You might want to read through the overview and print out the flowchart which shows diagnosis and treatments. The potassium test and the cystoscopy with hydro are no longer recommended to diagnose (just so you know).

                            Unfortunately there is no cure for IC only treatments which range from a variety of oral drugs which is considered first line treatment, diet, bladder instillations which can be very helpful for alot of ICers. If you don't want to take oral meds you could do the instillations once your diagnosed. Most doctors want to do an in office cystoscopy (mine did) which takes about 10 minutes and helps them rule out bladder cancer etc. It did not bother me but if you're in alot of pain it will be more uncomfortable. I think you said your appt is on Friday? Try and read up as much as you can, the pdf in my signature is very helpful I think for someone new. I got lucky and the first urogynecologist I went to was very helpful and reasonable, some are not so lucky and go to multiple doctors before finding one who knows much about the condition.

                            Glad you're starting to follow the diet. My doctor gave me a list that co-incides with the diet here and B vitamins are definitely on it as irritants. I'd stop all the vitamins for a week and see how you feel. Top foods/drinks that I just read again today are: alcohol, citrus and vinegar, spicy food, cranberry, coffee tea (rooibus tea is ok, chamomile and peppermint too), chocolate, tomatoes and tomatoe anything, sauce etc., carbonated beverages, spicy foods, vitamins, multi, C, B's, artificial sweetners.

                            Good luck Friday and let us know how it goes.
                            Cindi


                            Gelnique for frequency/urgency - works great
                            Macrobid after sex
                            Prilosec, continuous birth control pills
                            synthroid .088mg, mucinex-d, restasis

                            Supplements: Desert Harvest Aloe vera, Cysta-q, prelief, magnesium and calcium, Vit D, flaxseed oil

                            Diag Mild IC Jan 11 but have had symptoms for 25 years. Also have GERD, TMJ, IBS-C, chronic dry eye syndrome, hashimotos thyroiditis, non-allergic rhinitis.

                            IC Diet Link: http://www.ic-network.com/diet/2009icdietlist.pdf
                            AUA 2011 Guidelines to diagnosing and treating IC overview- http://www.ic-network.com/forum/showthread.php?p=571592
                            AUA 2011 Guidelines to diagnosing and treating IC PDF: http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                            Great treatment flowchart on page 19 of the pdf

                            Comment


                            • #15
                              Hello Jaime,

                              Welcome to the ICN, we are glad that you found us. I know that everyone that is responding to your posts has given you some good info. Unfortunately it probably sounds as if everyone is speaking a foreign language right now. In the beginning you will see a lot of things and terms that you aren't familiar with, you will soon be very familiar with them if you have IC though! I think if you go to this link
                              http://www.ic-network.com/patientlinks.html and start looking through the tabs you will be able to find a lot of information about IC, how it is diagnosed, treated, how to deal with it, along with a lot of other useful info.
                              Many of your symptoms do sound like they could be IC and yes many people experience an increase in symptoms around their periods. If you are wanting to follow a more natural path to help you if you do indeed have IC there are several supplements that are sold on this site that can be of help to you.
                              You can also go to this link this is the NEW American Urology Associations guidelines for Drs and patients for diagnosing and treating IC. http://www.auanet.org/content/guidel...ent_ic-bps.pdf
                              Please keep in mind though that even though these are the recommended guidelines not all Drs choose to follow them. Many Drs have found their own approaches that they feel are best for their patients. Just because a Dr doesn't follow them to the T doesn't mean he/she isn't a good Dr for you. By all means though if you are not comfortable with the treatment you are receiving look for a second opinion or even a new Dr.
                              I hope that you find some answers in the links I gave you. If you have anymore questions, please don't hesitate to ask. This can be very overwhelming in the beginning.

                              Take care and wishing you pain free days.
                              Sandra
                              Link to the patient information, everything from What is IC? to Disability
                              http://www.ic-network.com/patientlinks.html

                              American Urological Association Clinical Guideline
                              Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom
                              http://www.auanet.org/content/guidel...ent_ic-bps.pdf

                              Comment

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