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Dx: endometriosis, stage 2 = endo isn't the cause of severe pelvic pain

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  • Dx: endometriosis, stage 2 = endo isn't the cause of severe pelvic pain

    I had a laparoscopy two days ago and the ob-gyn said that she found stage 2 endometriosis and though there was 5% she couldn't get at, she burned out 95% of it. However, she said that stage 2 is mild and doesn't really have symptoms associated with it.

    So I am assuming that means that my severe pelvic pain is from IC. I will get a follow-up with her to go over surgery results (and to tell me how to get rid of the last 5% endo) in about 4 weeks. I don't know that I will get to have her ongoing - I only met her once before the surgery, in a 5 minute appt.

    I asked the pharmacologist if he could give me a copy of the urologist's report that had been sent to him. One line in it says, 'The bladder showed anterior displacement of the trigone suggestion of an extrinsic mass.' Nothing about any displacement or any mass was ever mentioned to me. He goes on to say "However the bladder mucosa showed no abnomalities. Thee was no evidence of squamous metaplasia or bullous edema. There was no tmors, plaques, or stones. Both ureteral orifices appeared normal. There was no Hunner's ulcers." So I'm guessing that all that latter info erases the concerns of the displacement and the mass? This report was from the end of February and I have seen the urologist since then. But I can't get another appointment with him for 2 months. I'm tired of feeling like I'm having to draw all these conclusions on my own.

    I have tried Uracyst instillations, rescue instillations, TENS, biofeedback, myofascial release, ranitidene prescription. Two years ago I tried Elmiron prescription. I asked the urologist if I could try amitryptiline (has another name that starts with E, I can't remember) - he said since I'm on wellbutrin, I should ask my GP if I could go on it. GP said she'd only be willing to prescribe it at 10mg. But everyone in ICN who writes about taking it, takes it at a considerably higher dose (I've read between 30 and 75mg?). She's not informed about IC so I did explain that but she said she will not prescribe higher than 10mg. So basically I feel out of hope, now. I waited for the surgery for four months in hope that it would offer an answer or some relief, as a last shot at quality of life.

    I have about a one year wait for a pain specialist. I am pretty much bed-bound. My GP says that it's time to accept that this is what my life will be like. But I can't work, have no income, and have now spent through almost all my retirement savings.

    I feel like I've come to my lowest point & the end of my options.
    Last edited by playethic; 04-20-2011, 02:30 PM. Reason: added re: amitryptiline
    Severe IC developed fairly quickly, autumn 2010.
    So severe that I was bed-bound & on 160mg/day morphine to cope with torturous pain levels, and unable to function other than hospital/medical appointments, for seven months. Then, miracle of miracles, something started working. I am steadily lowering the methadone dose level. I have been far out of that desperate nightmare hell zone for several months now and continue to improve.

    - Ranitidine (anti-histamine, H2-inhibitor) 300mg/day
    - Methadone 9 ml/day
    - Instillations:
    - 40ml Kenalog (steroid for inflammation) 2 x per
    week, along with rescue cocktail of heparin,
    lidocaine, sodium bicarbonate
    - 20ml Uracyst, monthly @ $100/per
    - Depo lupron injections for endometriosis, monthly @ $88/per

  • #2

    You wrote your report said:One line in it says, 'The bladder showed anterior displacement of the trigone suggestion of an extrinsic mass.' Nothing about any displacement or any mass was ever mentioned to me.
    Now I am not a medical proffesional so I don't know what this means, but just thought I would tell you on my long road to getting a diagnoses, I had cat scan which showed that my bladder wall was thickend, and the bladder enlarged. It said on the report that this didn't really mean anything, but they were looking for kidney stones and blockages, so it ment nothing in reguards to that.

    This was from the person makeing the report, this person only know a very little about your case, only why the test was done, not the whole picture of your symptoms etc that a Dr. uses for diagnoses. This person may not know what this means to your case. This is why it is often helpful to go over reports with a Dr. which I am sure you plan to do, I would take a copy of your report with questions specific to it to your next apps. with your uro and GP. Down the road this finding was important and gave a driection for investigation when other symptoms arised, it ment nothing to the person at the time, but it was a clue to my Dr.

    So it may mean something to someone trying to find reason for your pelvic pain.

    For your Dr. to say: However, she said that stage 2 is mild and doesn't really have symptoms associated with it. This is very subjective as is all pain.

    Some people experience pain with less of something than another person, maybe you will get lucky and your pain is from the endo and getting rid of 95% will improve your symptoms greatly, I will keep my fingers crossed for you.

    I often here people say they have had an ovarian cyst and they felt little to no pain, for me often a small one will cause me quite a bit of pain, likely from it's placement and my bladder enlargement and IBS. So for you infact your endo may have been causeing you more pain than the adverage person. This pain is real even if it is more than other peoples.

    As for your GP not willing to rx amitryptiline or edivil (sp). 10 mg may help you, everyone is different, try it at that amount. Look up things that you can find about how it helps with IC and doseage used, take it to your GP for her to read over, I always leave this kind of info for my Dr. to read later and ask about it at the next visit, keep a copy for yourself so you can keep straight what you have given to her.

    Your Dr. maybe be more willing to try a higher doseage after trying the 10mgs and then reading about it, or maybe it will help some and she be willing to let you try a higher doseage after a bit.

    Did she say she doesn't think it should be combined with Wellbutrin, that she is concerned about, ask what her concerns are, maybe they are well founded. Also it is said over and over again on this site that everyones case is different and what works for one may not for another.

    It sounds to me your gp if you are going to keep goiing to her needs to be better educated about IC, you can teach her by taking her info about it all the time, don't go over board at once just a bit at a time, hopefully she is receptive to this. If not maybe you will need to find a different GP who understands it better.

    I do know it is a frustrating process, be patient it all takes time, the best thing you can do for yourself in the mean time is to follow the IC diet.

    Good Luck MG
    My are with you all. May you all find a way to peace and joy in your lives.


    • #3
      MG is right, the lower dose of elavil might be very helpful for you, it is a start. Perhaps if you see some relief with it she might be more willing to increase the dose. I don't agree that you have to accept this as your life. I have been fighting this for over 3 years and refuse to let myself give up. Just recently I have been trying gabapentin and am finding that it is helping me a lot. Severe pain is my main symptom and it is getting better with the gabapentin. There is something that can help almost all of us, we just have to keep looking to find that right med or treatment that gives us our quality of life back, if not completely to a degree that we can live with.

      I know it can get very discouraging but hang in there, and don't give up.

      Link to the patient information, everything from What is IC? to Disability

      American Urological Association Clinical Guideline
      Diagnosis and Treatment of Intersitial Cysitis/Painful Bladder Syndrom


      • #4
        hi there

        i am so sorry to hear you are having so much trouble.
        when a doc says that just because its stage 2 endo that that can't cause you pain is just silly....
        my gyne told me that stage one or two could cause you as much or more pain than if you had more endo because when its just lil growths they produce more postgladin or something that causes the pain.....
        so don't believe that......if you have growths that act like endometrium in your uterus but its not in your uterus......yeah i think it will cause pain.....
        i think you should try some more docs, since i know how it is when all docs are taken (like in my city) i like to try clinic docs (i know its a pain) but sometimes you land on a really good doc that actually listens and it maybe worth the time.....
        there are good docs out there.....
        and they can point you to a good uro who will be able to help and not just dismiss you.....
        if you need to talk just send me a message and i will get back to you
        i am having some body pain troubles and now some stomach issues again....
        so i know how frustrating it is to try and deal with docs who don't listen.....
        take great care and hope you find a good doc
        Have dealt with chronic pain and gerd/ibs since '98 endometriosis, vulvodynia diagnosed 2000, ic diagnosed around 2004, chronic epstein barr-like virus 2011
        Hysterectomy/oophorectomy 2014 endo had destroyed everything
        Now dealing with recurrence and menopause in late 30s
        Other things--migraines, chronic hives, eczema, raynauds, congenital scoliosis, broke 3 vertebrae in middle of back when i was 16, heart defect (ventrical septal defect)