Announcement

Collapse
No announcement yet.

Is there any correlation between IC and endo?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

  • Is there any correlation between IC and endo?

    I was diagnosed with IC in December of 2006 at the age of 18. As hard as it was to believe, the hydro and cystoscope showed that I had it. Luckily I found this site and it has helped me a lot! Nobody knows what we go through! I have noticed that there seems to be a trend that several people who have IC also have endo. I recently talked to my gyn to see if he thought that I should be checked for endo as well. He said that he hasn't heard of any relationship between endo and IC but if I wanted to be sure then he would do the laparoscopy. What are the differences in the symptoms with IC and endo and would it be worth the laparoscopy to find out?

    Thank you for all the support!
    God Bless!

  • #2
    I have Endo and the differnence is that the endo only hurts really bad when its that time of month and yes it kind of feels like IC pain but I am on continious birth control pills so I never have a period, but even though I dont have a period still around that time of month I still have some cramping..IC pain to be is more of a sharp burning feeling right below my belly button.. Hope this helps

    Ronda
    Hugs
    Ronda

    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:
    http://www.ic-network.com/handbook/

    Diet Reference Sheet:
    http://www.ic-network.com/diet/icndi...tsheet0909.pdf

    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.

    Comment


    • #3
      I supposedly had my endo taken cleared up, but I still have all the cramping and all. So I thought that the IC had cramping also, but maybe my endo is active as well as the IC.
      http://www.TheCraftyEwe.etsy.com

      Comment


      • #4
        I don't know if there is a correlation or not but it seems if a person has IC they usually have something else chronic as well. Some people have a long list of health problems. Many people believe that both IC and endo are autoimmune which may be why a lot of us have both. I know that endo is herditery because my mother have it and so do I. Some people have said that IC is herditery as well, thank goodness my mother doesn't have IC, I don't know if I would wish this on my worst enemy!
        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
          I didn't develop IC until after I had a hysterectomy. It's very possible to have both IC and endo, but I honestly don't think the two are connected.

          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


          • #6
            I believe there is some correlation (just my opinion) between having IC and Endo. I have both. If you Google IC & Endo you will find they call them the Evil Twins.

            Comment


            • #7
              According to my urogyne IC mimics a lot of things including endo,UTI as well as yeast infections. My IC manifested itself with "walking farts" so I was originally treated for colon and rectal problems...who would have thought they would be connected? My urogyne said he had seen my combiantion of symptoms maybe 20-30 times in his career (IC specialist and sees 100's annually)
              You just never know
              TREATMENT: PRN lidocaine/heparin Home Instillations since 2004
              My Helpful Hints for Home Instillation: http://www.ic-network.com/forum/show...985#post309985

              Institute of Female Pelvic Medicine (J. Dell, My MD) http://www.mypelvicmedicine.com/index.asp
              Thank you for allowing me to share my experiences and offer support. Your physician is the only one to give you medical advice. I hope sharing the information from this site will help you and your physician develop successful management of your IC.
              I post to encourage and offer total support for rescue instillations.
              Find me on facebook: L. Clark Thomas
              Louann

              Comment


              • #8
                A large amount of patients have both and do know of some patients with IC that believe their IC was caused in part to a hormonal imballance.

                I have both endo and IC and I know of some doctors believing there may be a connection but other than huge correlation in symptoms, both often being bothered by hormones, and the large number of patients with both there isn't a definate connection (that we know of) like there is some other things like PFD.

                I have heard of something called the fibro 5...fibro, endo, IC, chronic fatigue syndrome....so are they often together yes but the reason why is not known.

                I have Endo and the differnence is that the endo only hurts really bad when its that time of month and yes it kind of feels like IC pain but I am on continious birth control pills so I never have a period, but even though I dont have a period still around that time of month I still have some cramping..IC pain to be is more of a sharp burning feeling right below my belly button.. Hope this helps
                I guess it is different for everyone but my endo pain was pretty constant...just worse around period...same was true for my IC pain. sharp burning pain is more PFD to me....but to describe a difference in the pain....endo is cramping somewhat sensitive to the touch if you pushed on it like a bad brewse would be where as the IC was more sensitive to even a slight amount of pressure like a balloon that could pop in me.

                HGC is right, they are called the evil twins.

                My own opinion is that there is a connection between many of these things and that finding it may be the sollution to getting some relief...can't wait for the multiple illness study!
                Faith, Hope, and Love,
                Katrina


                I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                IC 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.
                or find me on facebook http://www.facebook.com/kat671?ref=profile
                Be the Miracle! & Pay it Forward!

                [email protected] please contact me...I am here to help!

                Comment


                • #9
                  I have been diagnosed with both and I would have to say before my hysterectomy the pain from the endo was "crampier" than my IC pain, shot down my legs alot more and felt like Freddy Kruger was flexing his fingers in my belly.


                  Hugs,
                  Barb
                  (Babs passed away in April 2009. We honor her memory and remember her fondly. - Jill O. ICN President & Founder)

                  [SIZE="1"]Proud mama of a gift named Lindsey who taught me through her autism what is important in life:angel:
                  :angel: IC Angel Volunteer Coordinator :angel:
                  :) Contact me via PM or e-mail if you would like to help
                  I have learned all about life in 3 words: It goes on! :D--Robert Frost
                  PCOS 7/85
                  RSD 7/94 :headbang:
                  Endometriosis 9/98 :toilet:
                  Antiphospholipid antibody syndrome 9/99
                  Kidney stones--too many to count
                  Factor V Leiden mutation 10/02
                  IC 6/03 :evilsmile
                  Deep Venous Thrombosis and Cellulitis 12/05 :loco: DVT and Greenfield Placed 3/14/08
                  "Spirit is an invisible force made visible in all of life"--Maya Angelou
                  "Ohana means family--no one gets left behind or forgotten." Stitch[/SIZE][/SIZE][/SIZE]

                  Comment


                  • #10
                    When my daughter was just starting her menes 12.5 yr old. she would get very moody and very painful cramps and would be in such pain that she said that if she took a knife and stabbed it in her stomach it would hurt less than the pain she is having. I asked her doctor then about this and they said PMS. to young for anything else. This went on for years moody and in pain. Then she was told she has IBS (2002) and Fibroymalsia which came after a car accident (2000) and now IC which showed up right after a car accident last year.
                    I now think maybe endomititirs and want to rule this out or in. She's been referred to a pelvic pain clinic at UCSF and maybe they will help.

                    Comment


                    • #11
                      Grr too young, grr! I was diagnosed with Ulcerative Colitis at age 10....some of us just don't need to get "old" or older to get sick.
                      Good luck!!
                      Faith, Hope, and Love,
                      Katrina


                      I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                      IC 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.
                      or find me on facebook http://www.facebook.com/kat671?ref=profile
                      Be the Miracle! & Pay it Forward!

                      [email protected] please contact me...I am here to help!

                      Comment


                      • #12
                        I sometimes wonder if in my case my endo actually CAUSED my IC. My endo grew through my bladder wall and they had to remove it from my bladder. I really wonder if that surgery injuried my bladder lining and caused the IC to happen.
                        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


                        • #13
                          Here’s a study that was done on this issue:

                          http://www.ncbi.nlm.nih.gov/entrez/q...&dopt=Abstract

                          From what I’ve read, not enough research has been done to determine what the link between endo and IC is. Most doctors chalk it up to the fact that both are autoimmune disorders.

                          I started having symptoms at age 12, but it took me 13 years and more than a dozen doctors to get my endo diagnosed. It wasn’t until an endo expert (only a handful of them in the US, despite what most doctors say about their skill) told me that his clinic regularly screens for IC during endo excision surgery, did I find out about my IC.

                          My personal feeling is that IC and endo (and the link between them) aren’t treated seriously enough by most medical professionals.
                          Allison

                          Allergies (Claritin)
                          Anemia (iron supplement)
                          Asthma (albuterol inhaler)
                          Bilateral hearing loss (hearing aids)
                          Chronic migraines (amitryptiline, midrin, special diet)
                          Chronic rhinitis and sinusitis
                          Endometriosis – stage IV (lapex surgery done by specialist 3/07; now pain- and symptom-free!)
                          Other treatments tried: surgery, 13 birth controls, Lupron (poison! ), and Depot Provera (the worst thing my body’s ever gone through! )
                          Interstitial Cystitis (Elmiron, Tramadol, Darvocet, IC diet)
                          Knee problems (ballet-related injury – no diagnosis 10 years later)
                          Scoliosis (>10 years of chiropractic treatment – none currently)
                          Seizure (4/03)
                          Surgeries: 6/95 – maxillo-facial surgery to realign jaw; currently have 8 screws in jaw
                          2/06 – laparoscopy with excision of endometriosis and ovarian cyst, appendectomy, hysteroscopy, D&C, removal of uterine polyp
                          3/07 – laparoscopy with excision of endometriosis, hysteroscopy, cystoscopy, hydrodistention, insertion of stent in ureter

                          Comment


                          • #14
                            Thanks Almaarit, very interesting research article on the evil twin endo and ic.

                            When my daughter 22yr. was to have her bladder biospy, we asked her urologist to check for endo, he consulted her gyn and the gyn said he didn't see the signs (???). so no laparoscopic to find her endo.

                            This article says that its very important for the the gyn and urlog. to work together as a team. "Through our study, we showed the high pevalence and association of ic and endometriosis."
                            Which came first, the chicken or the egg..... and why don't doctors know about this and look for it while they have their paitient anesthetied getting the bladder biospy?

                            I will present this article to her gyn and urologist and get their view on this.
                            Maybe it will help getting her help in this area...thanks

                            Comment


                            • #15
                              Thank you so much for sharing that link!!!
                              I find it hard to accept that most doctors caugh it up to both being auto immune disorders since I suspect many doctors will have difficulty believing that is for sure in everyone with IC but when it comes to finding a connection I get where more will say that!! I hope there is more research in the future!!!
                              Faith, Hope, and Love,
                              Katrina


                              I believe God is using me. He uses me for God. Things I gain from all my suffering are meant to help others. I hope I can help you too. Email me or start a chat if you like my help or anything. I CARE!Illnesses: IC,IBS, IBD, GERD, PFD, Epilepsy, Endo, Allergies, RLM,Rapid heart beat, low blood pressure,Gastritis,Gall stones,Tendonitis,migraines, Shingles, Prolapsed pouch,ext. fatigue (current problem) I have seen periods of remission and I have seen them end and return. At this time remission is over and working on getting it back!

                              IC 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.
                              or find me on facebook http://www.facebook.com/kat671?ref=profile
                              Be the Miracle! & Pay it Forward!

                              [email protected] please contact me...I am here to help!

                              Comment

                              Working...
                              X