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Hi, everyone, finally discovered the cause of my bladder pain

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  • #16
    Hi Lori
    Another question--did you have any cysto/hydros over the years and if so what did they show? How much were you distended? Were biopsies taken?
    Thanks

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    • #17
      Hi, Briza, the only biopsy I had was with the very first hydrodistention/cystoscopy and the sample of tissue taken did not indicate endometriosis. So the first urologist believed he saw IC. He saw a very vascular bladder with the petechial hemmorhages.

      The second urologist did another hydro/cysto and believed he saw endometriosis of the bladder but did not take any tissue samples.

      The last urologist to do a hydro/cysto felt it was IC. The last time I had one of those was about five years ago now I guess. Have not been back to a uro or urogyn since then. I just don't talk to any doctors anymore about this stuff.

      I don't know how far the distentions were or any details beyond this.

      Blessings, Lori

      Comment


      • #18
        Hi Lori

        Hi Lori,

        Was the endometriosis inside or outside your bladder? I had it really badly on the outside. It was removed 8 yrs. ago and they asked me if I had had bladder issues. Back in 1996, I was diagnosed with irritable bladder syndrome, not IC. I was given bladder relaxers for 4 mos. and cured. In 2002, I had the laproscopy surgery as I wanted children and could not get pregnant. Once inside, they discovered stage 3 endo. They removed it all and said I'd have no more bladder issues. In 2004 I had IVF and delivered a son. No bladder issues. In 2006 I conceived a baby girl on my own, again no bladder issues. In the summer of 2009 I was at a park with my kids and had some sort of allergic reaction. I broke out in a rash all over my body. I was told I had scabies at urgent care and treated for it, but it got much worse. Went to my own dr. and told that this was a severe allergic reaction. I was given prednisone. About 1 week later, I thought I had a UTI. Urgent care lost my culture and I was given macrodantin which did nothing and then Cipro. I then was put on Detrol LA for all of 2010. Last summer I got worse. I had tests run with a uro. He told me I had permanent nerve damage from my endo surgery. I called my surgeon. He said "no way". I found a new uro who then diagnosed me with IC. I've been on Elmiron and the rest you see below. I am still struggling and wonder if the endo came back or if yeast is to blame too. Just curious about what you've suffered with IC and if it's all gone now after your surgery. My main symptom is frequency that won't ease up. Constant feeling of having to pee. Thanks for replying, [email protected].
        Michellexoxo
        Hugs to my IC pals!

        -Michelle
        Wife and mom of 2 kiddos (11 & 13). I am 51 years old
        Diagnosed with IC in October of 2010 after a severe allergic reaction. I was 43 years old with a 3 yo and a 5 yo.
        Elmiron instills gave me 2 full months of total remission until January of 2011
        Started Elmiron on 10/22/2010 (200mg twice per day)
        Started Elavil 20 mg. in 2/2011 - 8-2012
        Started 25 mg. Hydroxyzine in July 2011 - 10-2012
        Prosed DS as needed for flares (generic is called Hyophen - much cheaper and works but I prefer Uribel)
        Tums with any possible caution foods, now I take nothing but Hyophen if needed
        Started running in February of 2011, yoga in 2012 to current
        Lost the constant "urge to pee all the time" feeling in April 2012 after starting Detrol LA (took 4-6 weeks to kick in)
        No longer using any supplements
        Current meds: 200 mg elmiron - that's it. I eat pretty much anything. Stress triggers flares!

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        • #19
          Hi, MMarsh, I'm so sorry for the problems you have had with endometriosis and bladder irritability problems.

          I don't know if your endometriosis has come back, but I know the doctors have told me that unless my ovaries were removed, that the endo could always come back. That's a big part of why I had my ovaries removed too.

          In fact, for me, there were two previous surgeries to remove a whole bunch of endometriosis, and yet when they opened me up this time, I was just totally filled with it again.

          I'm told the endometriosis responds to estrogen and the primary source of estrogen is the ovaries. That's why the doctors often recommend the kind of surgery I had, for bad endometriosis.

          The endometriosis was mostly on the outside of my bladder I guess, but I haven't had a cystoscopy for so long, it's hard to say if any was inside or not. But the outside of my bladder was full of it, and sure enough, just like your doctors said, I did have bladder problems! And it was because of the endo! At least for me it was.

          It's only been a month, so maybe it is still too early to know for sure, but ever since the endo got removed I felt like I received a totally brand new bladder. No frequency issues at all, no UTI feeling like I used to have all the time several years ago.

          I'm glad to be rid of the endometriosis.

          I sure hope that you will be able to find something that works for you as well, and I hope your doctors can help you with what path to pursue!

          I hope for healing from bladder pain, for everyone here.

          Blessings, Lori

          Comment


          • #20
            Endometriosis

            ICLori

            I am glad you finally solved your problem. It's truly amazing what can be brewing inside us without our knowing.

            Here's my endometriosis story: I was about 41 and started having really bad periods, also a feeling of pulling on one side of my abdomen. To make a long story short, they opened me up and saw a tremendous amount of endometriosis. It was inside and outside the uterus, but they didn't give me particulars as to where it was outside the uterus. I assumed they removed all they saw (the incision was huge). When they took it out, my anemia went away. I had never suffered any symptoms of endometriosis.

            My frustrating IC case is queer because I do not have any dietary issues. I also have nothing which triggers my pain. It is constant, with occasional really sharp stabs of pain. The only thing that helped the pain was a hydrodistension and that only helped for a week.

            Another queer fact: when bladder is manipulated there is pain only on one side of bladder. If I am lying in bed, this side is very tender when pushed down while other isn't. I have been told this one sided thing isn't typical of IC. I had the hydrodistension and there were no glomurations. I was pain free for a week after the distension. Oh Joy!!! then woke up at 2 AM feeling like a saber was being thrust through my bladder.

            Now I am wondering whether it's possible that some of the endometriosis was either "left" in the 1st operation (hard to believe as it happened in 1991) or that it grew back (also hard to believe as I have been in menopause since they took both ovaries out).

            Once again, glad your rid of your IC pain. You may also find as I did that your energy level goes through the roof.

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            • #21
              Annie-I'd add to your quote on the bottom: "Never trust a doctor with a filthy lab coat hanging on the back of his door."

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              • #22
                I am so happy for you

                Lori, I have followed your story for years and just happened to drop in today and read your post....That is wonderful newsabout your discovery and I hope your story helps others find solutions.Fran

                Comment


                • #23
                  fluffersmom a question on one side pain

                  I am too glad for anyone that can figure out what causes their IC and fix it. Fluffersmom, you said that you've heard one sideness is not typical but most of my pain is on one side. Only very rarely does it switch or the bladder has to fill up to pain being all over. I always think this points to something anatomical, but no urologist even seems interested in exactly where my pain emenates from. I am diet sensitive but not as much as some on this forum. Just curious who gave the information about IC not usually being one sided? When I press on left side I feel pain but usually not on the right side. Thanks.

                  Originally posted by Fluffersmom View Post
                  ICLori

                  I am glad you finally solved your problem. It's truly amazing what can be brewing inside us without our knowing.

                  Here's my endometriosis story: I was about 41 and started having really bad periods, also a feeling of pulling on one side of my abdomen. To make a long story short, they opened me up and saw a tremendous amount of endometriosis. It was inside and outside the uterus, but they didn't give me particulars as to where it was outside the uterus. I assumed they removed all they saw (the incision was huge). When they took it out, my anemia went away. I had never suffered any symptoms of endometriosis.

                  My frustrating IC case is queer because I do not have any dietary issues. I also have nothing which triggers my pain. It is constant, with occasional really sharp stabs of pain. The only thing that helped the pain was a hydrodistension and that only helped for a week.

                  Another queer fact: when bladder is manipulated there is pain only on one side of bladder. If I am lying in bed, this side is very tender when pushed down while other isn't. I have been told this one sided thing isn't typical of IC. I had the hydrodistension and there were no glomurations. I was pain free for a week after the distension. Oh Joy!!! then woke up at 2 AM feeling like a saber was being thrust through my bladder.

                  Now I am wondering whether it's possible that some of the endometriosis was either "left" in the 1st operation (hard to believe as it happened in 1991) or that it grew back (also hard to believe as I have been in menopause since they took both ovaries out).

                  Once again, glad your rid of your IC pain. You may also find as I did that your energy level goes through the roof.
                  I got IC in 1970! I was not diagnosed until 1991. I've tried many drugs and therapies but I tend to only resort to drugs when in a flare because when I am not in a flare (from being good on diet), I suffer only from small bladder volume (like about 7 ozs.) and peeing will relieve the discomfort. When I am feeling relatively normal, I say to myself I am glad I am not on a drug. When I am in a flare, I say, why am I not on a drug! I've recently have been trying to solve my connective issue problems in general. I look to diet and herbs mostly unless it gets really bad. I still think there is great hope for each individual finding a path to healing and there are many.

                  Comment


                  • #24
                    Hi Lori,
                    I don't know if you remember me but I was on the forum a lot during the time you were talking about the Cyclosporine, etc. It has been a long time since I've been on the boards but I was so happy to see some "familiar faces" and to hear your good news about hopefully getting to the root of your problems. I wish you continued success and good health!
                    hugs,
                    Janie

                    Comment


                    • #25
                      May I ask what were your symptoms with Guillain Barre Syndrome? I've explained all my symptoms to my Family Doctor. Weakness, can't stand for more then 15 minutes, no appetite. It's like my life is fading away each more every day. Either he has no ida what to do or thinks I'm blowing it out of reality. I don't know where to turn. Are these symptoms of some people with IC ? I've had IC for about 6 & 1/2 years I believe. Hug, Ziggy

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                      • #26
                        HI ICLori,

                        I've been reading your posts about endometriosis and IC. I have an appointment to see my doctor. I was wondering if you could please read over my symptoms and give me your thoughts:

                        -When I have my period, I have a large discharge of blood. I'm sure it's abnormal as I have to change my feminine napkins at least once every hour.
                        -When I'm on my period, I have incredibly sharp shooting pains up inside my rectal area. It's so painful that I have to stop and I can barely breath. I've given birth to 3 kids, and I would compare this pain level to those of the pain levels when I'm in transition. Rather incredible!
                        -And, of course, I have IC. Grain-free and oxalate-free seems to be helping. But the IC diet (acidic foods) doesn't necessarily make me feel better.

                        Anything here sound familiar to you in your experience with endometriosis of the bladder?

                        MP
                        Diagnosed with IC since 2008. What I'm doing: 1. Reduce Stress (Sleep...10:30 bedtime MAX 2. Diet: Free of Grains, gluten, soy, dairy, eggs, some nightshades, and I avoid foods on IC list when possible, although IC-list foods don't bother me as much as these other things do. 3. What do I eat? At first the garbanzo bean pattie was my staple (http://tinyurl.com/bddoas4, look for my post). Now I'm on the Auto Immune Profile diet/AIP (Google 'Paleo mom AIP' for more info). 4. IC THESIS: IC is for me and many of us, a systemic issue. I'm looking into Hormone probs, Food intolerances, Leaky Gut, Candida, and oxalate issues. 5. Chronicle of my journey: Read about my ongoing learning here: http://www.weallseeic.blogspot.com I kiss my family every day. Stay positive everyone. I know we can beat this! IMPORTANT UPDATE ABOUT MY USER NAME: I had to redo my registration/username because I messed something up on my original registration (Something to do with my signature? HTML codes? Blah blah blah. Donna and I tried to figure it out, but alas, we decided the best thing I should do is just get a new userid. My new user ID is minharopaola+

                        Comment


                        • #27
                          Originally posted by minharopaola View Post
                          HI ICLori,

                          I've been reading your posts about endometriosis and IC. I have an appointment to see my doctor. I was wondering if you could please read over my symptoms and give me your thoughts:

                          -When I have my period, I have a large discharge of blood. I'm sure it's abnormal as I have to change my feminine napkins at least once every hour.
                          -When I'm on my period, I have incredibly sharp shooting pains up inside my rectal area. It's so painful that I have to stop and I can barely breath. I've given birth to 3 kids, and I would compare this pain level to those of the pain levels when I'm in transition. Rather incredible!
                          -And, of course, I have IC. Grain-free and oxalate-free seems to be helping. But the IC diet (acidic foods) doesn't necessarily make me feel better.

                          Anything here sound familiar to you in your experience with endometriosis of the bladder?

                          MP
                          Whoa, I was going to make a very similar inquiry, and hope that Lori came back (not only to answer my questions, but to update us on how she's doing now as well!)

                          [WARNING: T.M.I. AHEAD--not that anyone that has been on the boards for more than a day is squeamish at this point)

                          My period hasn't always been this way, but for the last 4+ months or so

                          -I start passing dark brown blood(?) for two days before heavy bleeding begins
                          -Very heavy. Changing the pad every hour for at least 2.5 days; used to be able to get away with 4 or so hours even on the heaviest days
                          -Excreting more clots than usual, and passing them even on the lightest, "end" days of the cycle
                          -Menstrual discharge seems to give off a "stale cigarette" or "nicotine stain" smell; at least that's what I picture when I detect it (like this whole thing isn't unpleasant enough as it is)
                          -Have always had horrific sharp "period pains" directly over the front of the bladder; usually only one spell of this sort of pain per period and usually shortened by 800mg ibuprophen
                          -Sharp rectal pain that makes me stop in my tracks, but not with every period (I've always had this, and never even questioned it as abnormal until I read the post above...o_O)

                          Until very recently, I just assumed my body was changing and this was "the new normal." My cycles have always been longer than most (7-9 days), and I've sought birth control in the past just to knock some of the PMS down a few notches, but it always made me ill and I never carried on with it, accepting the terrible pain and eating up to (but no more than) 800mg of ibuprohen per day as needed during my cycle to cope.

                          I will certainly talk to a doctor about this (my next appt is with a urologist; could they answer my questions, or are they not a "qualified period doctor"?), but any additional insight from anyone here would be appreciated. My IC was diagnosed via symptoms alone, and I guess it's denial more than anything, but I'm praying that endo. on the bladder could be the answer to my years of frequency and urgency the just recently started hurting the hell out of me. But I'm sure everyone prayed for that same thing at some point!

                          Let's all keep each other updated. And hope Lori returns to share her insight as well as her progress report! We're all wishing you well!!
                          "Diagnoses"
                          Vestibulodynia, endometriosis (dx via symptoms only), IC (dx via symptoms only), PFD, uneven legs, pelvic muscular dysfunction

                          Present Treatments
                          EMDR Therapy Dec 2013-June 2015; Mindfulness Style Meditation early 2014-Present; External PT Dec 2013-Dec 2014, daily exercises at home; Intervaginal PT March 2015 - Aug 2015 Chiropractic Mar 2014-June 2015; Therapeutic Massage Apr 2014-April 2015; cut caffeine out of diet; I lost my health insurance Sept. 2015!

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                          • #28
                            Hey Tectonic! I just responded to you in another post. Hi!

                            Honestly, your symptoms kindof freak me out. Not because of what they are (they're similar to mine) but the fact that they have recently changed! The one that is most strange is the stale cigarette odor and the change in color. Could you perhaps seek out a URO-Gyno? That was key for me because mine can make a lot more connections to my feminine parts than a regular uro can. I can relate to the huge amount of menstrual discharge. Way too much!

                            I hate to make you change doctors...but it would be worth considering.
                            Also, to note, I think it's important to see the doctor WHILE you're on your period. The hormones from menstruation make your overall issue worse (be it a cyst or endo), and that helps them in ID-ing the issue.

                            Finally, did you have an appendectomy? I had a strange appendicitis years ago. It would 'leak' then it would seal itself back up. I'm wondering if it was related to endometriosis. As far as I understand things (and someone correct me if I'm wrong), endometriosis kind of reminds me of a cancer (benign of course), but if it 'gets onto' some tissue, it will grow and damage that tissue. Perhaps it's related to my appendctomy? Then it gets on my bladder. Hello IC?

                            Finally, I've had the shooting rectal pains (which are always connected to my bowel movements...like gas or actually going to the bathroom) ONLY during my periods. Hmmm...

                            When I have my period, I always think 'Something wicked this way comes!"

                            ICLori come back!
                            MP

                            Update: Just went to my doctor today. They are scheduling a laparoscopy to see if I have endometriosis. They wanted to just give me birth control to put any POTENTIAL endometriosis under control. But I want to get to the bottom of this. If I have endometriosis, and if it's on my bladder, I want to clean it out. Once it's clean, maybe it will improve my IC. My awesome open-minded GynoUro thought that was a fair approach. Also, I read an interesting article from that doctor in SanJose Cali that MomW/IC went to (she discussed her endo in another forum). Here is a link to that article: http://vitalhealth.com/our-programs/...l-cystitis.php Very interesting. I keep getting that feeling that IC is not necessarily a BLADDER issue...it seems to me like it's a systemic issue...the problem is somewhere else, but the pain manifests in our bladder. Fix the source, and maybe IC will be fixed. Not sure...just rambling here.

                            I'll come back and update once I have more info on how my diagnosis goes for endo, and what I decide to do.
                            Last edited by minharopaola; 02-08-2013, 12:54 PM.
                            Diagnosed with IC since 2008. What I'm doing: 1. Reduce Stress (Sleep...10:30 bedtime MAX 2. Diet: Free of Grains, gluten, soy, dairy, eggs, some nightshades, and I avoid foods on IC list when possible, although IC-list foods don't bother me as much as these other things do. 3. What do I eat? At first the garbanzo bean pattie was my staple (http://tinyurl.com/bddoas4, look for my post). Now I'm on the Auto Immune Profile diet/AIP (Google 'Paleo mom AIP' for more info). 4. IC THESIS: IC is for me and many of us, a systemic issue. I'm looking into Hormone probs, Food intolerances, Leaky Gut, Candida, and oxalate issues. 5. Chronicle of my journey: Read about my ongoing learning here: http://www.weallseeic.blogspot.com I kiss my family every day. Stay positive everyone. I know we can beat this! IMPORTANT UPDATE ABOUT MY USER NAME: I had to redo my registration/username because I messed something up on my original registration (Something to do with my signature? HTML codes? Blah blah blah. Donna and I tried to figure it out, but alas, we decided the best thing I should do is just get a new userid. My new user ID is minharopaola+

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                            • #29
                              Hey Tectonic:

                              I just wanted to follow up with you...I just had my 'endo' surgery yesterday...but there was NO endometriosis. My surgeon found a hernia on the right side of my abdomen, and he repaired that. He said it could be the cause to the strange rectal pain during my period.

                              How are you feeling today? I hope you're doing well.

                              I wanted to invite you to my forum about grain-free eating. A few gals there who have started grain-free eating (Paleo or some other variation) are feeling better already!

                              Anyhow, if you'd like to join us, click on my profile link here on the left, and then you will find the forum under my 'recently updated posts'. The forum is called "On the Road to Remission through Grain Free Eating."

                              Hope this note finds you well! We can do this!!!
                              MP
                              Diagnosed with IC since 2008. What I'm doing: 1. Reduce Stress (Sleep...10:30 bedtime MAX 2. Diet: Free of Grains, gluten, soy, dairy, eggs, some nightshades, and I avoid foods on IC list when possible, although IC-list foods don't bother me as much as these other things do. 3. What do I eat? At first the garbanzo bean pattie was my staple (http://tinyurl.com/bddoas4, look for my post). Now I'm on the Auto Immune Profile diet/AIP (Google 'Paleo mom AIP' for more info). 4. IC THESIS: IC is for me and many of us, a systemic issue. I'm looking into Hormone probs, Food intolerances, Leaky Gut, Candida, and oxalate issues. 5. Chronicle of my journey: Read about my ongoing learning here: http://www.weallseeic.blogspot.com I kiss my family every day. Stay positive everyone. I know we can beat this! IMPORTANT UPDATE ABOUT MY USER NAME: I had to redo my registration/username because I messed something up on my original registration (Something to do with my signature? HTML codes? Blah blah blah. Donna and I tried to figure it out, but alas, we decided the best thing I should do is just get a new userid. My new user ID is minharopaola+

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