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How many people here with IC have Endo as well?

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  • #1

    How many people here with IC have Endo as well?

    Curious how many people here have Endometriosis.

    I have IC and I'm worried I may have Endometriosis as well.. I've had a lot of bladder irritation, occasional pelvic pain with my IC but lately I've had something different. My IC is controlled now with Elmiron btw. I'm usually functional and able to go places now.

    I have a history of irregular periods pretty much since I started at age 11. The irregularity has only gotten worse as I've gotten older. By 18 or 19, my periods were coming every 2 months or so. I don't really know the symptoms of endo but 2 of my cousins have it and one has had a hysterectomy.

    Anyways, I got my period four days ago and I've had mild aching pain around my ovaries and spreading out to my lower back. Enough that I haven't wanted to leave the couch. Ocassionally my ovaries have felt prickly/pokey. The pain isn't in my bladder, though my bladder has been a bit irritated lately because of my period (nothing too bad).

    I've had cramps before that range from mild to severe but I don't know.. this pain is different. Usually cramps come in waves for me. This is more like a continuous dull ache (as in most of the day for several days) and it's lasted 4 days! Way longer than any cramps I've had in the past. :/ I don't know... I'm going to make an appointment to see a gyno. Haven't been in years but my gen. practioner keeps urging me to go cause of the irregular periods. I've gone about 2 years ago when I was in full IC flair and wasn't on meds to control it. I got an ultrasound and a pelvic exam (no papsmear, I'm a virgin). The results didn't show anything at the time. I had a bad experience with that gyno (rude, pushy, and insensitive) so I haven't been to back since. I don't usually have very heavy periods, just spaced 2 months apart. I've even gone 3 months without a period before.

    I don't know, what do you all think? Care to share your experiences with getting diagnosed with Endo? I mean, this could be something entirely different but the last gyno didn't think I had PCOS or anything like that. Her findings were inconclusive.

    What I'm trying to find out is what does Endo feel like/what are your symptoms?
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  • #2
    I've never had endo, but I know we have members who have. Hopefully some will respond.

    Donna
    Stay safe


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    • #3
      I have endo as well as IC. IC developed while I was on Lupron to treat endo.

      I went for years with no diagnosis of endo even though I would pass out from pain during my periods. But finally in 2002, after about several years of pain and about 6 years of trying to conceive, I found a dr who wanted to check for endometriosis. And he found it. I've since had 3 surgeries to remove more endo lesions (they do come back in some of us), Lupron (which is when I developed bladder problems and was diagnosed with IC through a cystoscopy), and finally the pill. I've been on the pill now since 2007 and feel a lot better. I still do have pain, but it's not like it used to be.

      So in my case, the endo came first, then the IC developed while I was in the menopause caused by Lupron. I often wonder what my bladder will do when I go through real menopause. I fear it might get really bad like it was when I was on Lupron. Currently, the flares are controllable for the most part if I follow the IC diet and avoid stress. I still flare from time to time, but I can usually pinpoint the cause to something I ate.
      ~holly

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      • #4
        I had endo from 25 to menapause

        Originally posted by Godsgirl89 View Post
        Curious how many people here have Endometriosis.

        I have IC and I'm worried I may have Endometriosis as well.. I've had a lot of bladder irritation, occasional pelvic pain with my IC but lately I've had something different. My IC is controlled now with Elmiron btw. I'm usually functional and able to go places now.

        I have a history of irregular periods pretty much since I started at age 11. The irregularity has only gotten worse as I've gotten older. By 18 or 19, my periods were coming every 2 months or so. I don't really know the symptoms of endo but 2 of my cousins have it and one has had a hysterectomy.

        Anyways, I got my period four days ago and I've had mild aching pain around my ovaries and spreading out to my lower back. Enough that I haven't wanted to leave the couch. Ocassionally my ovaries have felt prickly/pokey. The pain isn't in my bladder, though my bladder has been a bit irritated lately because of my period (nothing too bad).

        I've had cramps before that range from mild to severe but I don't know.. this pain is different. Usually cramps come in waves for me. This is more like a continuous dull ache (as in most of the day for several days) and it's lasted 4 days! Way longer than any cramps I've had in the past. :/ I don't know... I'm going to make an appointment to see a gyno. Haven't been in years but my gen. practioner keeps urging me to go cause of the irregular periods. I've gone about 2 years ago when I was in full IC flair and wasn't on meds to control it. I got an ultrasound and a pelvic exam (no papsmear, I'm a virgin). The results didn't show anything at the time. I had a bad experience with that gyno (rude, pushy, and insensitive) so I haven't been to back since. I don't usually have very heavy periods, just spaced 2 months apart. I've even gone 3 months without a period before.

        I don't know, what do you all think? Care to share your experiences with getting diagnosed with Endo? I mean, this could be something entirely different but the last gyno didn't think I had PCOS or anything like that. Her findings were inconclusive.

        What I'm trying to find out is what does Endo feel like/what are your symptoms?
        I had endo too. Heavy periods, bad cramps, but when my period started I would get stabbing pains in a certain spot. Sure enough the gyn-ob would do a laporoscopy and find a lesion exactly where that stabbing pain was. That was just my experience, yours may be different due to where the endo lands.

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        • #5
          I have endo as well. Had severe pain and heavy, irregular periods as a teenager and have been on birth control since my late teens for that and ovarian cysts. BC has definitely helped with all of those symptoms. I had a vulvar vestibulectomy and cysto/hydro last year and my doctor decided to do an exp. lap. at the same time too, and sure enough I had endo. But I had suspected for years that I had it.
          Sarah

          Dx: IC, fibromyalgia, PFD, chronic pelvic pain, vulvodynia, endo, ovarian cysts, pelvic congestion syndrome, Vitamin B12 deficiency, hypothyroidism

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          • #6
            I'm also concerned that I have endo. I was dx'ed with IC 3 years ago via cystoscopy, but I've been in remission. However, I've recently had a bad flare and the pelvic pain seems to run more like endo symptoms (with my first round of IC I had more urethral/urge issues). My mom had endometriosis (which makes me 6x more likely to have it) and while I never had a formal diagnosis, I had a difficult time staying pregnant and had to be put on Prometrium for the early stages of my pregnancy. I spent so much of my younger years on birth control that I rarely had painful periods, but I've been off of those for the past few years, and I'm starting to wonder... I have an appt. with my uro and my GP (for a pelvic) on Monday. I hope we both find answers! (((Hugs)))

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            • #7
              The only way to prove you have Endo is for the doctor to do a lapo. My doctor wasnt going to do it because I didnt have the "classic" symptoms but he did and sure enough I had endo, the tissue was smaller then a pencil eraser but it caused me so much pain! What helped it stay away for so long is I was on birth control since 15 (due to menstrual issues back then) and went on the Implanon and was on it for over a year when we finally did the lapo. Birth control helps treat it because it regulates your hormones which keep the Endo at bay. Talk to your doctor about how much pain your in, keep a log of ANY spotting, bleeding, how long it lasts, where the pain is, etc.
              ~~ Marie ~~

              Diagnosed with IC December 7, 2007
              Diagnosed with Endometriosis December 7, 2009 (12/7 is not my lucky day )
              Also suffer from IBS, Insomnia, Anemia, and year round allergies to everything in nature with a side of Avocado

              Medications that have worked:
              Atarax 50 mg daily
              Flexeril 10mg as needed
              Valium 10 mg as needed
              Elmiron 100mg 3x week in bladder instill solution
              Pyridium (can’t remember dosage) as needed

              Treatments that have worked:
              4 Pudendal nerve blocks once every 4-6 months
              InterStim implanted August 10 2010
              Pelvic Floor therapy

              Medications that haven’t worked:
              Elmiron, tried it orally for a year with zero improvement
              Elavil, I gained 20 lbs, constantly in a mind fog, drowsy. tried it for 6 months and had enough
              Ditropan
              Celebrex (for menstrual pain)
              Doxepin (for sleep)
              Nortriptyline
              Mobic
              and there are a few others but I can’t remember them

              Treatments that didn’t work:
              Hydrodistention landed me in the hospital for 3 days, couldn’t void at all and had SEVERE pain. Sent home with a foley for 4 more days along with pain meds until I could finally void.

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              • #8
                I have endometriosis, adhesions, ibs and interstitial cystitis. It's often hard to tell what is causing the pain, so treating the pain is difficult.

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                • #9
                  Me too! (Jumping up and down with hands waving) I was diagnosed FINALLY in 2000 after years of crazy tests on everything else. The only way to get a diagnosis though is a lap as stated above. I had a hysterectomy in Aug for Adenomyosis and after 2 previous laps I was found endo free...whoo hoo! Depending on the experience of your gyn they should be able to make an educated guess, but with the ic it will be hard. One of the BEST endo docs in the world is in Atlanta (I noticed you were in FL). I went to him right after my diagnosis. He will look at your records and give you an opinion, but you need documentation of your symptoms first. Even if it isn't endo your should be checked...sounds like something is up.

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