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  1. #1
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    Lightbulb Pelvic pain/Endo/IC/Etc: Helpful Links, stories, therapies...

    I wanted to update this post, since the Mods were kind enough to combine the 3 threads we had on Endo. SO, here are the links I have so far:


    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/

    Sallie Sarrel's FB Page for Endo PT:
    https://www.facebook.com/pages/Endom...25680694168812
    [FONT=Verdana, Arial, Tahoma, Calibri, Geneva, sans-serif]~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~[/FONT]


    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****

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
    Original Posts:

    Just wondering how all the COTH Endo sisters are doing? I'm currently trying to get my 4th surgery (for Endo) but I'm really wanting to have it done by an Endo Specialist, which has been hard with Ins. Grrrr.... So, while I wait, I alternate between Ultram, Toradol, and Advil (though I try to stick with the Advil). I am unable to take narcotics due to SOD. Anyone else?

    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....
    Last edited by Freebird!; Nov. 13, 2012 at 02:47 PM. Reason: updated the OP, since the threads were combined. :)



  2. #2
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    Yep! Though after my first surgery and an ablation at 14 (yes, you read that correctly), coupled with the Mirena IUD (on my second), I have been doing phenomenally well! I was on chemo quite young and they had an impossible time managing my symptoms which is why they agreed to such an aggressive course of action, but it was absolutely the best thing for me. My symptoms now are very mild and I haven't bled in almost 10 years. As far as I'm concerned, that's the best possible outcome! Best of luck, OP, endometriosis is no fun!!
    Nine out of ten times, you'll get it wrong...but it's that tenth time that you get it right that makes all the difference.



  3. #3
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    Assuming you're talking about endometriosis? Has your doc ever mentioned Lupron injections?



  4. #4
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    I've had surgery for it twice and over the past few years I've been going back and forth between having a hysterectomy. I probably would have done it already if I had the downtime - but my job has been very demanding and I just can't (or won't) take the time off.

    I'm of child-bearing age, however I do not plan to have kids - and one of my tubes had to be removed due to all the damage so I bet I couldn't get pregnant even if I wanted to!

    The second surgery helped a lot, but between the endo and the fibroids I really would like to do something more permanent. And apparently I am not a candidate for the ablation due to some other health problems.

    So I just deal with it.

    Over the years (been going on since I was 16) I have wrecked my stomach on NSAIDs and can't really tolerate Advil anymore. I make do with muscle relaxers and Tylenol, but sometimes I am still in severe pain. At least it doesn't last as long as it used to, but it sucks that there's not much I can do about it.

    I work with doctors and one of them is a specialist in imaging of endo and fibroids. She's a strong proponent of using MRI to help the surgeon with a plan. Let me know if you want more info on that!

    My plan is 99% sure that I will have a hysterectomy - when I can find the time (and nerves!)

    Best of luck to you!



  5. #5
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    Satin - I've been on Lupron, but it has horrible side effects, and does nothing to cure or really even treat Endometriosis. Right now I'm wanting a specialist who will Excise the Endo, instead of just Ablating (burning) the Endo - which is what most Dr's do. Surgery with a Dr. who specializes in Excision Laps is the best chance for a "cure" Sadly, there is probably about 100 Dr's who do this, word wide. Very sad.



  6. #6
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    I am a former endometriosis sufferer who only got substantial relief from a full hysterectomy at age 40. I still have adhesions that are painful from time to time, but the surgery was they best thing I could have done for my quality of life.



  7. #7
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    I have a Facebook Endo group if anyone cares to join: https://www.facebook.com/groups/yayaendosisters/



  8. #8
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    I was diagnosed with endo at 17 (in 1999), after 2 long years of trying to convince my doctor that the unbelievable pain and beyond excessive bleeding I was experiencing every month wasn't "just bad cramps"- which was his diagnosis. (oh, the joys of having a male GYN ). He finally relented (I say "relented," because I don't think he actually believed that things were as bad as I was telling him); and referred me to a fertility specialist.

    Thankfully, even though that GYN was a little more than slow on the uptake in terms of listening to his patients; the specialist he referred me to was just A++ incredible: Dr. DiMattina of Dominion Fertility in Arlington, VA. At the time of my first surgery (in 2000), he was the only doctor in the DC/Metro area (and if I remember correctly, the only one [or one of very few] on the East coast) who was certified to utilize the specific laser needed to treat my "personal brand" of endometriosis... I think it was the Nd:YAG Laser, which was the preferred choice for me specifically (as opposed to the C02 or KTP-Argon lasers), due to what the pre-surgical sonograms/ultrasounds were showing- large, deep, and extensive lesions; as well as some ovarian cysts.

    Both surgeries were diagnostic hysteroscopies/laparoscopies; with the potential of becoming operative depending on what the laparoscope revealed. During both surgeries, the scope confirmed the presence of the endo lesions; and in both surgeries, the lesions were ablated by laser.

    During the first surgery (when I was 18), large endometriosis lesions were found on my right ovary (which incidentally was about half the size of my left one), inside my fallopian tubes, and on my pelvic floor.

    During the second surgery (when I was 20), the endometriosis lesions were found not only on my pelvic floor and all the usual places inside of my uterus; but they were also found on my cervix, outside of my small intestine, and some other areas that I can't quite remember (the term 'cul-de-sac' keeps coming to mind, but I don't remember how that was related... I guess I should take a look at an anatomy chart- I don't even know what I have going on in there!).

    Anyway, by the time I had my 2nd surgery, the symptoms came back not even 3 months later; which was totally disheartening (as I'm sure all of you can understand). I was good for over 2 years after my first surgery; so I was honestly really surprised at how quickly the endo took up residence again. Dr. D told me that he was sorry that it reoccured so quickly; but that unfortunately, he couldn't perform yet another procedure on me so close to the previous surgery... I wasn't even 100% healed yet from that one.

    So he explained to me that my options were: Lupron (and he did detail the side effects; which I found absolutely horrifying); or continuous monophase birth control therapy, which meant only having a period every 3 months.

    I begged for a hysterectomy since they had already told me that I couldn't have kids due to the scar tissue in my fallopian tubes; and I didn't/don't want any anyway. But of course he made it very clear that that option was off the table (and honestly, no doctor would do that for a 18-19-20 year old female)... but really, now that I'm older and understand the implications of having a full hysterectomy (having to take HRT, etc.); and have learned the side effects of the HRT that would be necessary to take had I actually had a hysterectomy, I'm glad I didn't get it done. I now feel like the known HRT side effects (and even the suspected ones) would be just as bad, if not worse in some ways, than the known side effects of the Lupron; and I don't want to deal with that at 30... or ever, if I can help it. So in hindsight, I am glad that he refused to perform a hysterectomy on me. But man, when you're going through it- feeling all of that pain and agony... you lay there, curled up in a ball, wishing and praying like hell that your entire uterus would just push itself out, you know?

    Though he kept pushing the Lupron, because back then, Lupron was the newest, latest, "greatest" endo treatment; and was considered to be the closest thing to a 'cure' (albeit only a temporary one). I said, "hell to the no" to Lupron, and went with the continuous BC option. So he started me on Yasmin, which was later switched to Yaz; which is (at least for me) the best BC I had ever been on- monophase and low dose, which keeps my moods in check; extremely effective at reducing cramps as well as the length of my periods (to go from 7-8 days to 2-4 was like an amazing gift), is effective in the management of PMDD symptoms (which I do experience... or did experience); and on top of all of those benefits, it also VERY effectively managed to keep the endo from getting worse.

    Although lately I've been experiencing the endo symptoms again and could probably use another surgery; the BC option has kept the endo in check and therefore, my symptoms at bay, for over 10 years (I had my last surgery at 20, and I'm almost 31 now).

    I know that so many of you have/had it worse than I did; but I can't recommend looking into the continual birth control option enough, if its not something you've considered or done before.

    Before I was diagnosed with endometriosis, I would go through a Super-Plus in about 25 minutes, and the pain would be so unbearable that at times it would make me faint. When the pain didn't make me pass out, I was popping up to 12 Advil pills at a time (I know, I know... but the pain- I was so desperate). And even though the Advil didn't help much in taking away the pain; taking that much at one time did make me sleepy enough to at least conk out for a few hours to escape the torture for just a little while, which I was always grateful for. I remember every time I'd lay down during for one of those 'Advil Naps,' I'd send up a prayer/make a wish that I'd wake up and all of these problems would be gone.

    To those of you who are struggling with endo, my heart goes out to every single one of you; and my thoughts as well. I do know your pain, your frustration- everything. And I'm here if any of you ever want to talk; or just need someone who understands and has been there, to listen. I'm so sorry there are so many of you going through this horrible, horrible disorder.

    <3
    Quote Originally Posted by Martha Drum View Post
    ...But I don't want to sit helmetless on my horse while he lies on the ground kicking a ball around without a bridle while Leatherface does an interpretive dance with his chainsaw around us.



  9. #9
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    I think a lot of us are on Contiguous BCP's, which help ease the symptoms for sooo many women. I would urge everyone though, to really do your research, since BCP's do NOT stop the growth of the disease. I know, our Dr's have told us otherwise, but Endo has it's own hormone receptors - which is why a Hyst will NOT cure Endo, unless it is just in the Uterus, which is actually called something else. In some women, using progesterone Estrogen combo pill can actually make the Endo worse. I think one of the BEST websites is: http://www.endocenter.org/ Remember - our Gyns - even Repro. Endocrinologists have VERY little training in treating Endometriosis.



  10. #10
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    I also had to beg my gyn to at least do a laparoscopy because I couldn't convince him of the pain. I woke up with a complete hysterectomy because the endo was so bad that all my female parts plus my bowel and bladder were squished together and adhered (sp) to my right pelvic wall. My doctor had to bring in an oncologist who happened to be finishing up a surgery in the next door operating room because the operation was so delicate. I was 29 years old but to get rid of that pain was SOOO worth it.

    The doc then put me on Lupron for six months to "kill" any endo that might have been left. That stuff made me CRAZY! Horrible side affects. I couldn't remember stuff from one day to the next, crazy mood swings, just basically nuts. To this day, I wonder if the lupron did permanent damage to my memory because I still have real trouble remembering things.



  11. #11
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    Reese - that's interesting about the male doctor. Because I went through 3 different female GYNs who said:
    1. I was being a baby - it can't hurt that badly
    2. I was just trying to get drugs,
    3. Some people just have really bad cramps - you have to deal with it.

    It was MALE doctor who was the first one to believe me and actully do something to help me with it. I am SO grateful to him for finally helping me. He is even willing to do a partial hysterectomy whenever I am ready.

    Unfortunately I have tried Lupron, Depo, and every type of BC ever made, and they all made me worse. So I don't have a whole lot of options left.

    Has anyone else successfully treated endo with anything other than drugs or a hysterectomy?


    1 members found this post helpful.

  12. #12
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    PP - I hate to sound like a broken record, but getting the Endo excised by an expert is the best chance for long term relief.



  13. #13
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    Quote Originally Posted by PaintPony View Post
    Reese - that's interesting about the male doctor. Because I went through 3 different female GYNs who said:
    1. I was being a baby - it can't hurt that badly
    2. I was just trying to get drugs,
    3. Some people just have really bad cramps - you have to deal with it.

    It was MALE doctor who was the first one to believe me and actully do something to help me with it. I am SO grateful to him for finally helping me. He is even willing to do a partial hysterectomy whenever I am ready.
    I'm really glad that you had such a good experience with a male GYN... I don't want to come across as some man-hater or anything, but the male doctors I've had (especially WRT GYN-related matters; with the exception of the one who did my surgeries) have been just absolutely awful.

    I remember back when I was 19 or 20, I was referred to a GYN who was known for his specialization in endometriosis... well, during the exam (yes, with my feet in the stirrups and everything); he says to me: "you shouldn't be on birth control anyway. Men will just think you're a whore, you shouldn't be having sex, either." And this was after I told him that I was on the pill to manage the endo- not as BC. Regardless, I was so shocked by what he said to me, I was completely speechless. Not to mention completely mortified.

    If that were to happen to me now; the 31 year-old RTB would just kick him in the face while he was down there for saying such offensive things to me.
    Quote Originally Posted by Martha Drum View Post
    ...But I don't want to sit helmetless on my horse while he lies on the ground kicking a ball around without a bridle while Leatherface does an interpretive dance with his chainsaw around us.


    2 members found this post helpful.

  14. #14
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    Default Myofascial Release for Endo

    Has anyone here had myofasical release done for endometriosis? I'm looking at that as an option, but would like to hear from anyone who has already experienced it. Also have a question about how the work is done.

    I swear I'd seen a thread on it awhile ago, but I'm having no luck searching.
    Only dead fish go with the flow.

    http://tommybluefoot.blogspot.com/



  15. #15
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    They can do that for endo? I didn't know that.

    I've had it done for chronic pain/tightness/farked uppedness. Told the PT I thought it was hogwash...she kicked my ass for a while and WOW what a difference. Mine was done for chest, shoulder, arm, neck, face. Lasted for months...but I'm tightening up again.

    I was taught a bunch of stretches I could do at home to help keep things moving and those helped a lot too.

    Going back to Rheum doc this Tuesday and discussing going back to PT for a quick tune-up and having the hips, leg, heel done too.

    If Myo Release works the same for endo...I say go for it. Hopefully someone here's had it done and replies soon. maybe this bumping it up will help.

    Best of luck, endo bites the big one. It hurts like hell.
    You jump in the saddle,
    Hold onto the bridle!
    Jump in the line!
    ...Belefonte



  16. #16
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    Thanks MistyBlue

    I did find someone who specializes in the myofascial for endo. It's really expensive, and I thought the work was done on the outside of the body, but it's not...which sounds REALLY painful. Not that endo is pleasant, but I know how bad it hurts after a regular obgyn appt, so I can't imagine this. I also need a script, which my doc is not on board with as she says there are no natural/holistic/dietary/lifestyle changes/woo-woo cures for it - just surgery or Lupron Depot. Before I get too pushy about it I was hoping someone here could tell me if they've had any relief from the endo because of the myofascial work.
    Only dead fish go with the flow.

    http://tommybluefoot.blogspot.com/



  17. #17
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    Have you ever heard of Sally Surrel? She's on several Endo Facebook groups, and that's who you should talk to. I'll try and get the links for you.



  18. #18
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  19. #19
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    No idea about myofascial release, just wanted to say good luck and hope you are feeling better soon. (I suffered for a long time - had surgery in September and now that I feel better.... I'm beginning to realize how bad I really felt, and for how long.)



  20. #20
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    Thank you for the link freebird, and the well wishes outside_line. I had the surgery last month but they weren't able to get much because of the location of it. I was soooo bummed when I still had the pain, I'd really been hoping it would be the cure. Oh well, continuing on!
    Only dead fish go with the flow.

    http://tommybluefoot.blogspot.com/



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