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  • "Diagnosis" of endometriosis

    Before I was diagnosed with IC, I was "diagnosed" with endometriosis. I have had painful, long, heavy periods since I started menstruating. I was on the birth control pill at the age of 16 for pain management, went off probably around 18, and was back on some form from age 20-21. I went off the pill because of migraines.

    I started having horrifically bad cramps again, along with periods that were abnormally heavy and long, so I went to my doctor. After a pelvic ultrasound, she "diagnosed" me with endometriosis and put me on Seasonique. I have been on this pill for about six months now, meaning that next week I should begin my second on-pill period (fingers crossed that it won't be nearly as awful as the last one).

    Now, I keep putting diagnose in quotation marks because I have read that the only way to truly diagnose endometriosis is to do a biopsy, and I have not had one. I mentioned it to my doctor after the first on-pill period went horrifically wrong, and she said that even if we did the biopsy and found proof of endometriosis, the treatment would remain the same, so there was no point in doing a biopsy if the pill was helping (which it has, except for when I spot/right before I'm due for a period/when I am on my period).

    But I'm wondering if maybe I don't have both IC and endometriosis. I thought for sure that since the cramps are most severe around my period that it must be endometriosis, especially because I have a completely different type of pain when it comes to urination. But an article I read stated that estrogen can aggravate IC, and that it's important to rule out gynecological syndromes before diagnosing IC, since it's really a diagnosis of exclusion.

    I guess what I'm wondering is if I should insist on a biopsy. I don't want to do it, obviously, but I'd rather get this right than be treating myself for something I don't have. I just don't know if it's necessary or not, and my doctor seemed very sure of her diagnosis.

  • #2
    If you have very long and painful periods the treatment for that is birth control pills. So, whether you have endo or not the treatment is the same. Are you worried that your BC pills will aggravate your IC? Many of us find relief from our BC pills for our IC. If you are worried about your diagnosis getting a second opinion might be a good idea.

    Wishing you the best,
    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


    • #3
      I have to say I agree with your doctor --- if the treatment seems to be working, at least give it a fair try before going to more invasive testing.

      Sending healing thoughts,
      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.

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      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

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      • #4
        Im getting a laprascopy next month. Ive had symptoms of endometriosis since I was about 13. I was dx with IC I believe in 2006. I have to kind of disagree with ur doc. Endo has four stages. the forth being the most severe and the first being mild. Birth Control is usually more effective for mild-moderate endo. people with moderate endo may be put on the depo shot and people with more severe endo will likely be put on Lupron to supress it. If I were you I would get the lap. If you do have endo they will usually remove what they can and Im being told that this may help the birth control to work better. So your dr is right that birth control will be used anyways but me personally I want to know what stage my endo is (if I had it) and what preventative methods will work better for me. Endo can return even if removed it really sucks but birth control or hormone therapy may help prevent it from returning. If ur doc refuses I would go somewhere else. By the way I have never heard of any doctor diagnosing endometriosis through an ultrasound. They can sometimes see ovarian cysts but usually not endo. but the choice is urs. If u want to try different birth controls to see if they work then its up to you. good luck
        Last edited by needsrelief; 02-22-2011, 12:01 PM.
        Diagnosed with IC October 2009- through bladder biopsy (no glomerations or hunners ulcers found, just irritation)

        I have moderate-severe IC

        Currently stopped taking all medications due to pregnancy

        Comment


        • #5
          diagnose and treat endometriosis

          Diagnosis

          by visualization; the likelihood of accurately diagnosing endometriosis increases even more when the specimen can be sent to pathology. I would look for a surgeon that is experienced in minimally invasive and complete surgical excision of any tissue causing pain. The old process of burning the implants just doesn't work. The tissue needs to be excised.

          Make sure your surgery papers include removal at the time of surgery. Another surgery to remove at a different time is costly.

          You really need to know if you have any organs bound by adhesions. My bladder was stuck to my uterus and was much higher in position than normal.

          Rule out endometriosis in and on the bladder.

          Some women have extensive endo and adhesions that have bound the organs and are completely unaware because for some women they don't feel the pain.

          I would highly recommend that you research and find the best surgeon as possible that are up to speed in the latest technology. You can search these keywords. Laparoscopic Excision of Endometriosis Using CO2 Laser. I would have had a lot fewer surgeries if this was available to me years ago.

          I agree with Needsrelief "By the way I have never heard of any doctor diagnosing endometriosis through an ultrasound. They can sometimes see ovarian cysts but usually not endo." An endometrioma may show but ultrasound cannot pick up the small patches of endo.

          Wishing you the best.
          Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

          Thankful: For all the support and comfort I receive on this site.

          Comment


          • #6
            Originally posted by needsrelief View Post
            By the way I have never heard of any doctor diagnosing endometriosis through an ultrasound. They can sometimes see ovarian cysts but usually not endo.
            The ultrasound was to rule out ovarian cysts and other possibilities before she went with endometriosis. Since everything looked fine, she started me on the Seasonique.

            I'm just very frustrated because I know that it can take up to a year for your body to adjust to this pill, but I'm having a rough time with it. For 2/3 of the pack, I'm good. But once I get into the month when I'm supposed to get my period, things sort of fall apart. I start spotting two to three weeks in advance, and the spotting is more like a period. And I get cramps (not as bad as the actual period cramps, but still awful). I'm dealing with all of that right now, and it's just frustrating.

            There's no way I can get anything done until the summer. I'm 500 miles from my usual gynecologist, and until June and the new health care legislation kicks in, I'm not on my parents' health insurance, so I couldn't see her even if I was home.

            Comment


            • #7
              Coverage for young adults up to age 26 became effective on Sept. 23, 2010

              I just found this on a site about the new healthcare reform. I thought that it was already in effect. You might want to verify that.
              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


              • #8
                My parents' insurance company is giving my mom the run-around, but what they've told us is that due to paperwork or some other issue, I am not eligible to be covered until June. It's not a big deal, as I had to get student health insurance at my school to cover my rabies vaccines, so I am covered for prescriptions and emergencies. I just can't see my regular doctors until the summer.

                Comment


                • #9
                  Something to consider

                  Years ago when my doctor wanted to do a lap to verify endo ( I was 19) he sent me to a department ( I can't remember the name) within the social/disability office with a paper stating that I was unable to work because of my pain and that I couldn't afford the operation. They paid for the surgery. I grew up in an orphanage, so I didn't have any parents to help. I don't know if this program still exist in these troubling times, but It's worth having a discussion with your doctor.

                  Wishing you the best
                  Diagnosis: Endometriosis, IC, PID, PCS, PFD, PN/PNE, VV, fibro, Pelvic Adhesions, DDD, Hysterectomy at a young age. Unable to take estrogen, causes pain—extremely bad pain.

                  Thankful: For all the support and comfort I receive on this site.

                  Comment


                  • #10
                    Almost 2 years ago my ob/gyn told me I most likely had endo. I had the exploratory lap and had adhesions on my colon and under one of my ovaries in addition to fibroids that had not been noted on the ultrasound. They removed the adhesions and sent samples off for pathology. I felt better after my surgery but within about 4 months my symptoms started coming back. My doctor told me that was a bad sign that I should be having endo symptoms again so soon and if I wanted to have children I should hurry up and whenever I decided that I wanted a hysterectomy because of the pain to just let him know.

                    So I moved to another state and about a month ago I was copying my records to go to a new gyno here and noticed that the sample submitted and marked "endo" came back as "no endometrial tissue." I discussed this with the gyn here and she told me that it is not uncommon for endo or IC to be misdiagnosed as each other and that it is unlikely that I have endo at all (ANYTHING can cause adhesions, ie: infection, trauma, gastritis, etc...).

                    Long story short, if you wanna know for sure you need the biopsy and ask to have copies of your chart and results because you would be suprised what is sometimes in your record that you may not be aware of.

                    On a side note, if you dont mind me asking, what did you need the rabies vaccine for?
                    Kerry

                    DVM-to-be

                    Current Diagnoses:
                    Solid thyroid mass (currently being investigated), Hypothyroidism, Hypersomnia, Mild chronic hypoglycemia, Interstitial Cystitis (unconfirmed), Uterine Fibroid

                    Things I have tried with success (although limited improvement, this is what I continue with):
                    glucosamine/chondroitin, chromium picolinate, probiotics, yoga

                    Things I have tried without success:
                    prelief, diet, NuvaRing, birth control pills, abstinence, profanity, crying, AZO (reduces the pain, but comes back 10 fold after stopping)

                    Things I was diagnosed with, treated for & then told I never had:
                    Endometriosis, Lymes Disease

                    Comment


                    • #11
                      Originally posted by critterfixer View Post
                      On a side note, if you dont mind me asking, what did you need the rabies vaccine for?
                      I'm a veterinary student.

                      Comment


                      • #12
                        Originally posted by nitheninny View Post
                        The ultrasound was to rule out ovarian cysts and other possibilities before she went with endometriosis. Since everything looked fine, she started me on the Seasonique.

                        I'm just very frustrated because I know that it can take up to a year for your body to adjust to this pill, but I'm having a rough time with it. For 2/3 of the pack, I'm good. But once I get into the month when I'm supposed to get my period, things sort of fall apart. I start spotting two to three weeks in advance, and the spotting is more like a period. And I get cramps (not as bad as the actual period cramps, but still awful). I'm dealing with all of that right now, and it's just frustrating.

                        There's no way I can get anything done until the summer. I'm 500 miles from my usual gynecologist, and until June and the new health care legislation kicks in, I'm not on my parents' health insurance, so I couldn't see her even if I was home.
                        I had laporscopic surgery when I was 14 and they found no endo. I have always had long, heavy and painful periods. When I am on BC they are shorter and lightner, now, but I have never taken sesoneque. I had an IUD put in in Aug and I had one period and now I dont have one. I still feel like cramping and pain like I do though, but not as bad. Without birth control I can't get out of bed and I wont have periods for 6-9 months and when I do its horrible!!!

                        I know for some people who have endo when they do the surgery I had they can remove the other tissue that is outside the ovaries.

                        I also too was just added back on to my dad insurance. I was kicked off when I turned 19 because I'm married. I paid for my IUD out of pocket. It was 800 dollars but well worth it.
                        Diagnosis: IC '09, vulvodynia '10, fructose intolerance '06, GERD '06, fibromyalgia '09, IBS '10 and TMJ '09, PCOS '11, genital herpes '12

                        Current Meds: Butrans patch, welbutrin, lamictol, geodon, xanax, aldactone, linzess, topimax, trazadone and diflucan as needed.

                        Meds tried before: Elmiron, elavil, antibiotics, welbutrin, cymbalta, prozac, nerve blocks, instills, nyastatin, flexerol, percocet, naproxen (which was what I was given for pain for years).

                        Comment


                        • #13
                          I have endometriosis and was diagnosed by lap in 2002. I was taking continual birth control pills only having a bleed 3x a year, did this for 8 years. Went off the BCP 1 year ago to try to get pregnant. My periods have gotten bad but they are regular and light. I have developed a new issue for the past 6 months. When my period starts, day 1 and 2 I have the worst time passing urine. I literally have to push and struggle to get it out, the stream is weak. This usually only lasts for afew days and then I'm back to normal again. I am really torn, not sure if this is endo on my bladder or if it's a form of IC or just some sort of pelvic floor issue. I do not have burning when I pee nor do I have urgency. I have been tracking my potty habits for the past 5 mths and I am peeing about 7x a day on average, never have to get up in the night. Just wondering if anyone else has had this and what the outcome was. I saw a urologist for a bladder infection about 6 mths ago when this all started but my cultures have been normal since ( maybe had 2 follow up's just to make sure ). I have not had any other urology diagnostic procedures. I'm just on day 2 right now of my period and it's horrible, I just want to have a normal pee!

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