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Pelvic pain/Endo/IC/Etc: Helpful Links, stories, therapies...

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  • Original Poster

    #21
    Jen - have you considered having surgery with an Endo Specialist who can excuse the Endo? I have a FB Endo group - just search YaYa Endo Sisters. Excision is really our best chance for relief. I'm trying to get surgery with a specialist myself.
    The Equine Wellness and Nutrition FB Group - Come join us!!
    https://www.facebook.com/groups/equinewellness/

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    • #22
      I think I found your group! I have just had the surgery with my regular ob, she was able to remove some of the endo and adhesions, but could not get everything because it was attached to organs. She's of the opinion all the girl parts need to come out, second option was the Lupron. I opted out of both for now and right now I'm on LoLoestrin and Endovan, so we shall see how that goes.
      Only dead fish go with the flow.

      http://tommybluefoot.blogspot.com/

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      • Original Poster

        #23
        I added you. I also added a link to our group, in my Sig line.
        The Equine Wellness and Nutrition FB Group - Come join us!!
        https://www.facebook.com/groups/equinewellness/

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        • Original Poster

          #24
          Endometriosis Sisters - Helpful links, as well as some FB Groups:

          There is a thread on the Off Topic Forum, but I wanted to start one here, since it very much hinders my ability to ride, and some days even care for my horses. I have had 3 surgeries for it, 6 months of Lupron, BCP's, pain meds, etc. and am now trying to get an excision Lap with an Endo Specialist. We shall see....

          I'd love to hear from any other Endo suffers out there, but in the mean time, here are a few helpful links:

          FB Endo Groups:

          YaYa Endo Sisters: https://www.facebook.com/groups/yayaendosisters/

          Another GREAT FB Group, this one has a few Endo specialists that will answer questions, and discuss technical stuff:
          Endometropolis:
          https://www.facebook.com/groups/endometropolis/

          The Endometriosis Research Center’s (endocenter.org) Diet & Nutrition discussion FB group
          https://www.facebook.com/groups/ERCDietGroup/

          Endo Warriors FB Group: https://www.facebook.com/groups/357101627681980/

          __________________________________________________

          Informative Websites:

          10 Myths about Endometriosis:
          http://endo-update.blogspot.co.uk/20...ths-about.html

          Dr. David Redwine: (until he recently retired, he was one of the BEST Endo specialists out there. His website still has some awesome articles)
          http://www.endometriosissurgeon.com/

          Great website for the newly Dx:
          http://www.angryuterus.com/

          This Org. is NOT funded by any drug companies, and is just a wealth of info:
          http://www.endocenter.org/

          For general information on all things Endo-related:
          http://endometriosis.org/


          ****Updated 11/13/12
          Last edited by Freebird!; Nov. 13, 2012, 02:36 PM.
          The Equine Wellness and Nutrition FB Group - Come join us!!
          https://www.facebook.com/groups/equinewellness/

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          • #25
            JenLS I hope this helps, I do not have endo but a whole host of other undiagnosed pelvic issues for 8 years now which end with me being crippled from constant pain with no apparent cure. I did internal therapy with a well trained therapist and it makes a huge difference! It's no more painful than a normal real massage but it does take a bit to get used to the idea. I was severe enough that I was being treated 3 times a week and if it wouldn't have been over kill I would have gladly done it every day. I was able to work my way down to once every other week and now I only need to have normal massage therapy every so often. I have not been diagnosed with endo but unfortunately have every "wonderful" symptom of it.

            Having said that, I would also find a new doctor. No good doctor dismisses alternative therapies, they are valid and proven and while it may not help everyone, neither does medicine! Your doctor should be focused on helping you find relief not lining their own pockets. Just my opinion, they may be decent but they should not be so dismissive.

            ETA - Just saw your comment regarding the pain afterwards. Personally it feels nothing like an ob/gyn appointment. If the therapist is good, she'll take her time so your body can adjust to everything she's doing. My first appointment kind of felt like we didn't do much but she explained that she did not want to over do anything given what we were working with.
            The one good thing about repeating your mistakes is that you know when to cringe.

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            • #26
              Oh, I had one surgery to remove a large cyst and adhesions... and it was back in under 6 months. So I had everything taken out 10 weeks ago and life is good, good, good again. So one way or another - it will get better! Glad others have been able to answer your actual question :-)

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              • Original Poster

                #27
                JLMet - have you been seen by a true Endo specialist? As in one who excises the Endo? Because if you haven't, then I would still highly suspect Endo as the cause.

                I started an Endo thread over in the riders with disabilities forum, and added some helpful links too. Go check it out - especially Dr Redwine's site.
                The Equine Wellness and Nutrition FB Group - Come join us!!
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                • #28
                  My ob/gyn did a full exploratory surgery when all other tests failed to show anything, she was fully expecting endo to be the cause but when she got in there I was perfectly clean. They did a d&c as well just to be sure (I have other things going on too) Do you think it's possible she missed it? I trust this doctor with everything I have, she's amazing and listens and knows me well enough to know that I never complain about pain, so when I finally gave in and admitted that something was wrong she took it very seriously. I never thought to question the results because she is really good. Just a little history (be prepared for a novel) I always had heavier than normal cycles but never any issues other than that. In 2004 I gave birth to our first daughter and that's when the issues started. The birth was uneventful, no issues at all. About 3 months after there was a slow onset of pain that gradually got worse, I kept thinking it was because I just had a baby and since she was my first I didn't really know what to expect. Along with this my cycles started becoming more and more frequent even though I was on bc, a year later I finally accepted that something else was going on and reported it to my doc, by this point pain was a 24/7 deep kind of pain (any kind of love life was impossible) and I was bleeding every day. She ran a whole host of tests, tried different bc methods, exams, x-rays, mris, ultrasounds, blood work, hormone testing which revealed that at the time I was 24 I was considered post menopausal (wth!) and the exploratory surgery which found nothing, she took a bunch of scrapings to try and see if they could find any trace of anything, along with the d&c to be sure that there wasn't anything leftover from pregnancy that was maybe causing problems. Every came up clean, my ob/gyn was choked up when she had to come to me after the surgery because she didn't want to tell me that they didn't find anything, she new the pain was real for me and she wanted so badly to give me a reason for it. She referred me to another dr who was supposedly a pelvic pain specialist. I say supposedly because this man only had one diagnosis on his mind. He said I had Interstitial Cystitis (a bladder condition_ which I was willing to believe because a lot of the symptoms for IC matched what I was feeling not all, but a lot. He was the one who started me with an internal massage therapist which made the biggest difference for me, he also had me doing weekly catheter injections of a cocktail of medications. The catch was that one of the meds was lidocaine which is a numbing agent so naturally after this process you would feel some relief, I finally realized that give what IC was and a lot of what I was feeling matched, the main symptom (bladder problems) I did not have and that the catheter medications never did as much for me as the internal massage did. He insisted I had IC but advised that I go to a urologist for the proper testing (it was only shortly before that they finally had approved testing for IC) The urologist scoped me and informed me that I was right and there was absolutely no sign of IC, he sent the results to the so called pelvic pain specialist who would not reverse his diagnosis of IC for me. This pissed me off since at the time I was being denied insurance for pre existing conditions and they needed him to reverse the decision in order to give me insurance. I never even blamed him for saying IC because it did fit a lot of what I was feeling but when you have the damn test saying I don't then you need to own up to it and he wouldn't. Thankfully the urologist went to bat for me with the insurance companies and was able to have it removed for me. Fast forward a few years and I mainly just gave up because I wasn't getting any real answers, no medications natural or otherwise did anything to help the bleeding, and the only pain relief was getting constant massages. Someone recommended that I try a pain management doctor to at least get me some control, so last year I did, she was wonderful and was actually able to find me a medication that helped with the pain enough that I could get sleep, nothing helped during the day since I didn't want to be drugged up but at least I was getting sleep and able to have a small love life with hubby. Of course that's when I became pregnant again (which we wanted) and had our youngest back in April again with no complications, I was good for about 3 months after and sure enough the pain slowly came back and as the months go on, the bleeding is slowly increasing as well. I scheduled for a back injection with the pain management doctor on 11/20 to see if that helps but I'm the kind of person that wants an answer for why, I don't care what the treatment is but I would like to know the reason for all of it because it is incredibly frustrating. Now, knowing all of that, even though they did exploratory surgery with the expectation of finding endo but not, do you think it's possible that it is the case and it was somehow missed? I'm all for seeing an endo specialist, I just didn't bother because they did check for it.
                  The one good thing about repeating your mistakes is that you know when to cringe.

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                  • #29
                    OMG, what a timely post! I've been having pain on my right side for over a year now, and two ultrasounds, inside and out, have detected nothing. The pain starts at ovulation and ramps up until my cycle, then I have about 10-14 days of peace until it starts up again. My doctor has determined it is a form of endometriosis that is located on/around my right ovary. Short of opening me up and taking it out, there is nothing to do but wait is out until menopause. I'm 52 years old and still cycling regularly. It has seriously cut my riding down this summer, and I am ready for this to be DONE!!!
                    TypaGraphics
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                    • Original Poster

                      #30
                      I would check out those links, and find a Dr who can remove it. I hate to be Debbie Downer, but menopause won't necessarily make it go away. Getting ALL the Endo cut out is your best chance at being pain free, and they do it with a Lap, so no need to open you up. I certainly wouldn't just suffer with the pain.
                      The Equine Wellness and Nutrition FB Group - Come join us!!
                      https://www.facebook.com/groups/equinewellness/

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                      • #31
                        I have suffered from debilitating cramps for many years, but have never been diagnosed with anything.. doctors don't really ask me too many questions and just tell me take Advil and stop drinking coffee (yeah right). Thanks for posting this information- I thought this was something I had to just live with forever. I'm going to try to get more answers and see if something can be done.

                        Comment


                        • #32
                          Originally posted by Freebird! View Post
                          I would check out those links, and find a Dr who can remove it. I hate to be Debbie Downer, but menopause won't necessarily make it go away. Getting ALL the Endo cut out is your best chance at being pain free, and they do it with a Lap, so no need to open you up. I certainly wouldn't just suffer with the pain.
                          Unfortunately, I have other conditions that make surgery risky for me, including Addison's disease and a neurological condition that makes my circulatory system weak and unpredictable. And did I mention I have MS? I've lived with pain for my entire life. Cutting something out will be a last resort. Thanks for the advice, though!
                          TypaGraphics
                          Graphic Design & Websites
                          typagraphics.com

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                          • #33
                            FWIW, I had an exploratory lap in June and they removed all the existing endometriosis at that time. I was back on narcotics by September. The surgery did not provide the relief my doctor and I had been hoping for.

                            There's just no one size fits all management. Unfortunately.

                            I think the best thing you can do is find an OBGYN/specialist experienced in managing endometriosis in a variety of ways. This way at least you are not pushed into a cookie-cutter approach to managing it and can figure out the best course of treatment(s) based on your lifestyle and reproductive needs/wants/wishes.
                            Halt Near X | Horse Bloggers - Blog Directory

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                            • Original Poster

                              #34
                              Oh, for sure HappyVagrant! Heck, Lupron really helped my symptoms, but it's the devil for some women.

                              Just curious....who did you have your surgery with? The hard thing about Endo, is that even if you have a Lap done by a specialist, you can still get adhesions down the road, even if the Endo stays at bay.

                              The thing that saddens me the most, is seeing how many misconceptions there are about ENdo, and how many Dr's go around telling their patients things that have been proven to be incorrect info - like Microscopi Endo, or that a Hysterectomy is a cure, etc.

                              Here is a great article that talks about Excision verses ablation and why the first one is the superior method:

                              https://www.endometriosissurgeon.com/ArticlesbyDrRedwine/Article2004SpringSummer/default.aspx
                              The Equine Wellness and Nutrition FB Group - Come join us!!
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                              • #35
                                This thread is very timely as we're having to discuss with my doctors what the next steps are for treating my endo.
                                Proud member of the Snort and Blow Clique

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                                • Original Poster

                                  #36
                                  YAY!!! I have an appt. with a Specialist for THIS WEDNESDAY!!! So excited! I guess I will find out then when my surgery will be. Here is his site for anyone looking for a Dr: http://www.thomasllyons.com/

                                  It's funny, because it's not the surgery I worry about, its finding someone to care for my two horses....
                                  The Equine Wellness and Nutrition FB Group - Come join us!!
                                  https://www.facebook.com/groups/equinewellness/

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                                  • #37
                                    That's great news!! Let us know how it goes!
                                    Only dead fish go with the flow.

                                    http://tommybluefoot.blogspot.com/

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                                    • #38
                                      Freebird!, glad you got your appointment. Hopefully it will go well!

                                      Originally posted by Freebird! View Post
                                      Here is a great article that talks about Excision verses ablation and why the first one is the superior method:

                                      https://www.endometriosissurgeon.com/ArticlesbyDrRedwine/Article2004SpringSummer/default.aspx
                                      It's unfortunate that he relies on theory and rhetoric rather than evidence.

                                      For example, this: "It is inconceivable that a surgeon can expect to completely and safely treat such a disease by shining a light at it or spraying electrons at its surface."

                                      "Shining a light at it" absolutely works in some types of surgeries -- LASIK comes to mind. Why incorrectly(!) mock an entire surgical technique rather than presenting facts and figures to demonstrate it is ineffective in this particular case? It's a huge red flag for me.

                                      Also, I'd love to know if the 41/67% "cure" rates he cites for excision surgeries were verified via follow-up surgeries or if they, like success rates for the two other techniques, were extrapolated based on symptomatic observation of patients later.

                                      I think it's an interesting article in terms of raising questions and spurring someone on to do their own research into the three surgeries, but on its own merits I don't think it's very convincing.

                                      Too bad he didn't include a 5-year comparison table of success following 1, 2, or 3+ of each type of surgery. "Success" would probably have to be defined as relief of symptoms vs. proof that the endo was eradicated, but that would still be more convincing (for me) than this mushy logic/rhetoric approach he took.
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                                      • Original Poster

                                        #39
                                        I think some Dr's preform "2nd look surgeries" as their routine method, and I'll try and find some studies with this method. There is nothing wrong with the lazer itself, other then the fact that once you burn the Endo, it's hard to send the tissue to pathology - something you don't need to worry about in Lasix surgery - its usually the hands using the lazer. Most Drs just are not trained to recognize the many colors of Endo, and most don't go deep enough, to remove all of the disease. Like an iceberg, what can look small on the surface, can be quite extensive down below.
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                                        • #40
                                          I realize he sort of gets to that point. It's how he gets to that point and how he proves it (or not, as the case is in some of his points) that I have issues with. Not so much the ideas as the presentation of the ideas, if that makes sense.

                                          I think the safest thing to say, now that I have read some of his other articles as well, as that I am definitely not part of his primary audience.
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