Yes, advanced endometriosis may cause pancreatitis!

I'm in my late 50's now, but have probably had endometriosis since my first period (age 16). Unfortunately, although I was diagnosed early, there were simply NO treatments more than 40 years ago. I was infertile. Later in my 40's after undergoing YEARS of chemically-induced menopause, I started having MULTIPLE surgeries (both laparoscopies and exploratory laps) for resection of endometriomas in my retroperitoneal space--(BEHIND your peritoneum), for the same in my right sciatic notch which caused me to have a profound right foot drop, etc. Later, as it advanced into my heart and lungs, I got sicker and sicker. I started on daily Lupron in 2000 and am still using it daily. I am at Stage 4 and now have documented endometriosis in my urethra (requiring multiple and painful dilations), my bladder, my ureters, in the pole of my left kidney, in my common bile duct, my gallbladder (now out), my appendix (removed 'incidentally' during one of my many exploratory laps), in my now removed uterus, ovaries and tubes, my PANCREAS requiring me to use the strongest DIGESTIVE ENZYMES-(-CREON)--ON THE MARKET, my Sphincter of Oddi, Ampulla of Vater, my gut which has EEG-proven constant seizure activity

(EATING ANYTHING IS VERY PAINFUL) . I've also developed mega-colon, meaning that my colon doesn't empty without quite a bit of help--I use massive amounts of mag-citrate, preferring NOT to use too much Senna, etc., as eventually the receptors on which many of these types of drugs work on, eventually stop responding to the drug(s). I've also developed heart problems & severe asthma, both felt to be related to my endometriosis and most recently was found to have endometriomas in my salivary glands, putting my already decaying teeth (from Lupus' Sicca Syndrome) at further risk.. When the disease becomes Stage 4, it is considered to be a disease of the small vessels as well a disease of insulin sensitivity (I've developed Metabolic Syndrome which is correlated with advanced endometriosis--this syndrome includes Type 2 DM (check!), can cause sleep disorders (check!!), as well as fibrocystic disease of the breasts (check!!). Some ALSO consider that anyone with this much involvement is also considered to have an autoimmune disorder. I was previously diagnosed with Lupus (SLE) and APS--anti-phopholipid antibody syndrome (a subset of Lupus) which may cause strokes and/or blood clots--I've had two strokes and two pulmonary emboli. Nonetheless, despite the ENORMOUS amount of pain which I tolerate with the help of good medications and a wonderful doctor, I am aware that between the Stage 4 Endometriosis and the Lupus/APS, my lifespan is likely to be shortened. I've learned to adjust to my 'new normal' and to keep going. What choice do any of us really have?! I am now a MEDICALLY RETIRED physician, but they will never be able to take away my degree!! Hope this information is helpful to someone!!

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  • Hi, Alex1818.

    Thanks very much for shearing this with us. It is very important for us all to look out for potential health intervention needs and discuss this with specialists/gps.

    I am 43 with severe Eendo, and now investigating to see where else Endometeriosis has spread, especially Kidney/ureter.

    Alex1818, are you in menopause yet? I wondered if menopause will alleviate your condition?

    You must be frustrated especially when you have so much knowledge and yet not enough medical intervention for your condition.

    And I like you saying 'adjusted to new normal, keep going' and this is something people can learn, I know is it not the best but when we cannot change the situation, learn to live with what we have is important to embrace our life...

    Thank you, and keep posting! x

  • I am very confused by your post as you say you have been on Lupron for 15 years yet have no ovaries. As you will be aware Lupron is only effective at shutting down oestrogen production by blocking the GnRH receptors on the pituitary to shut down FSH, LH and ultimately ovarian function. It isn't effective at shutting down oestrogen produced in post menopausal endometriosis that has very large amounts of aromatase and oestrogen receptors in the endometriotic cells themselves in order to be self-proliferating by direct biosynthesis of oestrogen from cholesterol. I'm sure you will also know that Lupron should never be taken for longer than 6 months as it can cause any number of severe long term adverse effects including many that you have described and including death - there are many litigation cases for the effects of this dangerous drug.

    Since Lupron can severely affect bone density I'm not sure why you would choose to take it when aromatase inhibitors would be far more effective for post menopausal endometriosis and have no better or worse effect on bone density than you already risk.

    Endometriosis is already an autoimmune disease due to allergy to oestradiol, in common with autoimmune disease in general. Unfortunately many women with endo risk other autoimmune disorders.

  • You are absolutely correct in your assessment of the long-term risks of Lupron. However, IF (as a woman s/p TAH/BSO) Lupron is used ALONG WITH an adequate and safe estrogen compound, the devastating effects that you described can be mitigated. In my case, my DEXA/bone density measures, etc. have actually IMPROVED over the years I've been on Lupron. In addition to a compounded phytoestrogen (1.5%)--½ ml/day transdermally, I also use Miacalcin [salmon calcitonin] NS, Vitamin D, and several other mineral, Vitamin B, and multivitamin compounds. So, unopposed, YES, I would've experienced the bad side effects you mentioned. But, 'opposed' with the phyto-estrogen, my hypothalamic-pituitary system seems to be in good function along with yearly assessments of bone density and bone health. Thank you though, for pointing out what I neglected to include--the absolute importance of NOT using Lupron unopposed long-term. I actually asked my dr. (who is one of the top researchers on advanced endometriosis in the world)--two days ago, about this very topic. He DID verify my comments and stated that of his many patients on long-term Lupron, (w/o ovarian function), that he had NOT seen any of the horrific side-effects (we all get, at a minimum--bi-yearly complete blood/other appropriate testing profiles done) of long-term Lupron use. Yes, use beyond 6 months IS controversial. However, done with every attempt to mitigate, it can actually help tremendously. At least in my case, I feel that it has been a lifesaver, despite the metastic nature of my particular case. The fact is...I already had disease in almost ALL of the areas that I spoke of in my last post BEFORE I went on Lupron. The physiologic (not anatomic) side effects have just naturally progressed as a result of WHERE the lesions sit (not amenable to surgical resection). Thank you for your articulate answer to my previous post.

  • Someone left a reply that long-term use of Lupron may cause a myriad of terrible side effects. THIS IS TRUE ONLY IF it's use is NOT accompanied by the use of an opposing estrogen (assuming that you have lost your uterus, ovaries/tubes and/or are in menopause--either chemical or physiological). My doctor was one of the pioneers here in the United States in researching and using long-term Lupron. I am also on Miacalin (salmon calcitonin) nasal spray, Vitamin D (2000 U daily), a multi-vitamin (with iron--I've had a myelodysplastic syndrome which has left me chronically anemic; most women should NOT assume they need iron and just take it. It can actually increase your risk of heart disease.) My DEXA studies and bone profiles are actually BETTER than they were 20 years ago! So, YES, I agree that LONG-TERM use of LUPRON can be VERY detrimental UNLESS it is opposed by a sufficient dose of estrogen. I happen to use a compounded Phytoestrogen, "Tri-est" in a 1.5% preparation--½ ml (7.5 mg) on my wrist/day.

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