LUPRON/Endometriosis - Need Help Now

Discussion in 'Fibromyalgia Main Forum' started by pawprints, Dec 8, 2008.

  1. pawprints

    pawprints New Member

    HI:

    I am just recovering from having my right ovary removed on Friday. They thought I had cancer, but luckily not.

    However, they found endometriosis. I never knew I had that and am it shock because it is one more thing to deal with.

    I am a 47 year old with CFIDS. I meet with my GYN on Thursday and need to make a decision. She did not take out the uterus as she wanted to be conservative. Now she is offering me a Lupron shot for the next 6 months.

    I am exhausted from surgery but need input about what to do about Lupron and the endometriosis and little research brain right now. The side effects sound horrible, but I know I can't let the endometriosis grow.

    Please can anyone share with me their experiences, what questions to ask , etc. I need some clear thinking right now.

    Thank you in advance.
  2. mom2many

    mom2many New Member

    It was awful, I really went crazy. I was afraid I was going to hurt or even kill my kids, they were just newborn, 1, 2 & 3 years ago. I only did the one shot and the 1st week I felt drunk the whole time and than by week 2 I was feeling "off", just not well feeling but than by week 3 I was "crazy".

    I didn't do my 6 months of shots so the dr wouldn't do the surgery on me.

    I have also read the suicide rate is high on Lupron.
  3. BeansMom

    BeansMom New Member

    But I will also post here - I took it for 6 months in 2007 and had little problems - just the hot flashes, vaginal dryness, and loss of libido. (It came back :))

    I didnt' feel differently emotionally - in fact, I think I felt better b/c my pelvic pain was lessened. I did have issues sleeping just b/c of the hot flashes..
    I had my laproscopy in spring 2006, then did the 6 months of shots in early 2007. I had opted not to do Lupon right after the surgery b/c I thought it was going to be too bad - but my pelvic pain came back quickly, so I opted for the Lupron and have since felt pretty good (atleast as far as the pelvic pain is concerned).

    I don't know anything about the suicide rate or anything like that...like I said, I felt fine other than the hotflashes. I think there are some OTC remedies like Black Cohosh, etc.. to help with the hot flashes.
    I kept clean nightgowns by the bed in case I got sweaty/hot, some nights I slept nude. kept a fan at work on my desk and at home...kept an icepack in the fridge at work..I would put it on my chest or back or head just to give me a cool burst when I got hot.
    Just read as much as you can and talk to your doctor. I was scared to death to take it and didn't..then my pain came back. It was enough to make me take it - and I'm glad I did. But, this is a personal decision and everybody is different with meds! Good luck to you - I hope I helped some.
  4. pawprints

    pawprints New Member

    I have worked my self into a frenzy thinking about the side effects of yet another medication.

    I am going to keep hoping for more responses and then try and make a good decision for me.

    I am just scared of these meds.
  5. munch1958

    munch1958 Member

    I took two shots of Lupron and called it quits. The hot flashes were terrible and the
    Va-Jay-Jay dryness and burning were unbearable. I felt very depressed on it so I'm not surprised the suicide rate is higher in those taking it.

    I had better results with Danazol which is a form of testosterone. It does produce menopause like Lupron but not so severe. Others that I know liked Lupron over Danazol.

    My best result was to seek out a surgeon that will remove the endo. After that I became pain free for the first time ever. Mostly Reproductive Endocrinologists have the experience in removing endo that you are looking for.

    You might want to contact the Endometriosis Association (endometriosisassn.org) for more info. They have several books that you can get from the library. Any book by Mary Lou Ballweg is excellent.
  6. pawprints

    pawprints New Member

    Question...since I am older, 47 and close to menopause and never knew I had the endoetriosis...why is its removal so important?

    I will look into the options you mentioned. Would you be willing to tell me about the pain?

    Maybe I just ignore it because I am in pain all the time. I don't want any more bad symptoms.
  7. pawprints

    pawprints New Member

    Question...since I am older, 47 and close to menopause and never knew I had the endoetriosis...why is its removal so important?

    I will look into the options you mentioned. Would you be willing to tell me about the pain?

    Maybe I just ignore it because I am in pain all the time. I don't want any more bad symptoms.
  8. victoria

    victoria New Member

    Do go to the Endometriosis Assoc.'s website, they were immensely helpful to me over the years.

    I was dx'd in 1982 with severe endometriosis when endo had only been officially recognized for 2 years... no surgery then other than the laparoscopy to 'see', but put on birth control pills for 6 months.

    I was really scared it would come back (I would get random cramping pain for 5-6 hours that was worse than labor) and wanted to have children anyway ASAP, so I didn't want to take any of the other treatments available then (or now). So, I looked into candida on a nutritionist's suggestion.

    For some reason the candida diet + nystatin worked, and I was particularly helped by continuing to avoid especially all yeast & mold foods (especially cheese, bread, and wine) besides sugar. I have known personally several other women helped (symptoms relief) by that diet; and the Endo Assoc. at least used to report a high percentage were helped with pain levels by sticking to a candida diet. I haven't read their site or info in a long time now... I'd found them about 2-3 years after being diagnosed.

    I had an ovarian cyst in 1994, and had another laparascopy to remove it - but the cyst had disappeared by the time the surgery date arrived. I went ahead anyway even tho I just knew it was gone (since that pain disappeared) as I wanted to check on the endo and by then laser surgery was available. Again I was still 'severe'... the doc lasered what she could, but I know there's lots more that she couldn't reach.

    I was strongly advised then, at 42, to have a hysterectomy as I'd had my kids, but didn't... as long as I followed my diet, I had no unbearable pain. Also my organs for some reason have remained move-able. A recent ultrasound because of a bad UTI/colon infection didn't show anything either.

    If you are not having pain directly from it, I don't see why you need it lasered - as they can only go so deep with it and it can get all thru the torso/under & around organs, even in the thighs. Or exactly why you need to take lupron necessarily if you're not having obvious symptoms...

    again, tho, I haven't kept up with the latest so you would be doing yourself a favor by contacting the Endo Assoc. They have a lot on their site, and there are also knowledgeable volunteers available to talk/discuss your options with you.

    I am now past menopause, and don't have any problems. The only upside of having endo is that you're estrogen dominant, and I didn't have any obvious symptoms of menopause. I still try to stay off the yeast/mold foods however... but don't seem to get any reactions when I do eat any.

    So for what it's worth, if you're not having pain or obstruction from it, you may want to see what other options you have. That said, some women do not have symptoms until even as late as 70 or 80 years old. Again, the Endo Assoc. is the best place to go to get informed and up-to-date opinions.

    Hope that helps... let us know what happens. A high percentage of those dx'd with endo also have CF/FM/ME. They've also linked it with dioxin exposure.

    all the best,
    Victoria
  9. elliespad

    elliespad Member

    I don't have Endo but wanted to pass this along to you. My (ex) Chiropractor used to take VITEX for Endometriosis. Don't know if it worked longterm or how long she stayed on it.

    Also, DoctorYourselfdotcom talks about using Selenium, and some other nutrients for Endo.

    And yes, I too have read that Endo may be related to Dioxin exposure.

    I wish you well.
  10. I am going through almost the same exact issue,

    In February 2007, after leaving my gynecologists office, being FED UP, with her & her previous colleague, failing to treat an ovarian cyst, for SIX AND A HALF YEARS (that we were *aware* of it being there- FOUND- by a GASTRO, who ordered an abdominal CT scan- in Sept 2000!!!)

    I literally went through ALL THOSE YEARS (except about 1 1/2-2yrs, where i just GAVE UP on it all, due to the stress, and already seeing 5 other doctors *routinely* at that time!)

    But, otherwise, went through YEARS of sooo many birth control pills, and then ANOTHER (*$#&*ed ultrasound, EVERY 6-12 WEEKS. then MORE PILLS, MORE ULTRASOUNDS..over & over and OVER.

    I left, after this WITCH repeatedly REFUSED surgery... even after I went back after two years, and the cyst had GROWN .4cm, (which through a previous excuse of hers out the window of, "It's just a fluid filled cyst, it's not 'doing' anything" so, no surgery")

    After 5 mos on Zovia- which, caused me to bleed THREE WEEKS a month, instead* of ONE... another "ultrasound!"... and then flat out REFUSED- with NO REASON (through her NURSE, by PHONE CALL) surgery, AGAIN!

    All this time, knowing that my mother had endometrial cancer, (and now, mom's baby sis, just after my surgery in 07, had the same issue, a cyst- she has a total hysterectomy- and found out it was precancerous- her doctor* 'teared up!" and said "I probably just saved your life" and told my aunt, in his 30 yrs, she was probably only the SECOND woman, in which he had caught ovarian cancer before it had realllly reared it's ugly head)

    Anyhow, my FIRST appt with this new gynecologist... he was appalled- he did ultrasound- and even *I* saw severe* polycystic ovary syndrome, for *one*... the first visit, he *also* scheduled surgery, to remove my cyst (which, is a 'neoplasm' that is 'normally found at ages 30-50 yrs of age, and, (seldom-tg!) 'if left alone, over time, can turn malignant" (again, rarely)

    During the surgery- found out, that I too, have lots of endometriosis, in a not so great place, I guess.

    I did ONE depo-provera shot, and FOR ME- it was my LAST! It messed me up for way over 1 year! omg it was terrible.

    Unfortunately, i did notice immediately, that I was not as 'weepy' as I had been in previous months.. but that is IT for me, as far as that shot went.

    I already told him I would NOT take ANY MORE damned b.c. pills, they have caused me ENOUGH grief...

    And, no way in he** will I do Lupron- I agree- way way too many scary side effects.

    I too, saw on an Endometriosis site, a dietary recommendation, it's actually not TOO different from gluten-free type of diet,

    I wish you luck... I'm at a loss to, as to what to do.

    One thing about *not* treating- IS that, (my younger cousin was dx'd in her very early 20's, after numerous tries at pregnancy with her husband failed, as did shots, etc to increase chances/fertility)

    My cousin's endo was found, after an *emergency room* trip, in which, she'd been at home... weeing on the toilet... and literally fell over in screaming pain- her endometriosis was so bad by then, the doctor said he could only get about '80%' of it out...

    Apparently, she needs surgery again, my aunt says... :-(

    MSN's homepage, a couple of years ago, had an article, in which, they stated, (I do not remember WHO did the article, what research facility, etc)... but, that researchers now believe, that along with *diabetes*, that, *endometriosis* should be considered AUTOIMMUNE diseases.

    Makes sense to me? The body attacking itself, once again, basically.

    Another friend of mine, now 41, just had her 5th, and final laparoscopy, to have her only ovary removed, due to it's failure.

    She had problems since teens, fibroid tumors, then endometriosis, polycystic ovaries, etc... and, between the *scar tissue*, and the endometriosis, her BOWELS were so twisted off, she was in AGONY, actually *vomited* feces, at one time, and could not "go"..

    Those *may* be *SOME* reasons, of why, even though you are 47, and 'closer' to menopause...??

    Just a thought,

    Best wishes.

  11. victoria

    victoria New Member

    AAGAIOW, you had an ovarian cyst that was not treated? Those can burst and be life-threatening, happened to a friend of mine who ended up in the ER and then surgery.

    Another friend's doctor totally missed that she had an 8 pound ovarian tumor! She is a good bit overweight but not quite THAT overweight... a new doctor 'shadowing' her regular doc had asked if he could palpate her abdomen and found it!

    I asked if she didn't look pg even tho she is heavy, she said yes but had chalked it up to 'just' gaining more weight. (She has a lot of physical problems & chronic pain (I think she'd qualify for a dx of Fibro), and on several meds). She has had a hellacious time recovering from the surgery, still, 3 years later...

    I still find it inexcusable her doc didn't find it sooner, much less that the doc hadn't found it herself to start with. I don't know why she still goes to that original doc! (I'd have switched over to the new one!)

    Your cousin's and your friend's experiences with endo are definitely good reasons to have surgery and/or try meds if one reaches that point. It sounds like you were getting really bad symptoms as well. I would have too, ultimately, if I had continued to have the 5-6 hour rolling-on-the-floor (literally) cramping I'd had, if I hadn't had such success with the candida treatment/diet. I was unwilling to do more than I did with the BC pills to start as I was trying to get pg, so nobody was pushing me immediately to do more than I did anyway at least to start with... and they didn't have laser surgery then.

    (I could always tell how 'good' I'd been by every period, depending on how bad the menstrual cramps were, including rectal and sacroiliac. It was excruciating at times when I was 'bad', felt like a poker being stuck up my rear so I have real empathy for your cousin; those consequences sure kept me from straying far from my diet. I also found that drinking pau d'arco tea or taking capsules of the herb helped immensely, but only works if one sticks to the candida diet really well. Of course other anti-candida things, like grapefruit seed extract, can work well too.)

    I really believe it or other alternatives are something to at least try, if possible, before using something like lupron, especially if one isn't having symptoms yet as bad as those you mentioned. Of course nothing is 100% helpful. Sad thing about surgery is they cannot get it all anyway, and it will come back if nothing else is done. It's also been shown that even after a partial or complete hysterectomy, the endometriosis can come back.

    Pawprints, it didn't sound like you are having any symptoms directly from the endometriosis (?) -- if so, I can really understand your confusion especially over what to do, if anything.

    I'm also not sure how many times symptoms come on after menopause, those seem to be in the minority from what I've read in the past; altho again I'm not up to date on the stats.

    Hope you find some answers, Pawprints....

    all the best
    Victoria

    PS: rather ironic endo IS considered autoimmune, right along with many other conditions including CF/FM/ME in some doctors' views...

    [This Message was Edited on 12/09/2008]
  12. msnova74

    msnova74 New Member

    Please please be careful with this med. It has very serious long term potential consequences.

    My friend took it for 5 years for endometriosis. 2 years after she had stopped, she found out she had an inoperable brain tumor.

    Her oncologist told her that the specific type of cancer that she had was a rare but potential side effect of lupron.

    She died 2 yrs ago.

    I tell you this not to scare you, but to tell you to look the med up not just in the US but in Great Brittan too.

    The thing was that she never had bad side effects from it.

    It is possible that her brain tumor was just a random coincidence, but. . .i will never know.

    T
  13. pawprints

    pawprints New Member

    to all my friends here. I didn't know where to turn and you all came through.
    I am still feeling rather ucky from surgery so will dive into this more a little each day.

    The diet sounds reasonable and I have decided to meet with my gyn but not do anything this week. Just too confused still.

    The way they found it was a CA 125 b/c I complained of bloat and pain. The cyst was suspected to be cancer and now is 99.9% sure it is not. Bioposy back on Thursday.

    My husband has been reminding me of all my symptoms that the endo could explain and how I should be happy to have a diagnosis. Unfortunately, I am down in the dumps b/c just another diagnosis with no good drug options. I'm having a pity party.

    I am sure this is all related to the CFIDS....I also have Intestial Cystitis. Yeah for me....a new disease to understand.

    Thanks again for everyone's help. I don't feel so alone now. I can give up sugar and bread if I have to...will check that out. Actually, I am not fat but went on WW because felt so bloated. It was the endo I guess.

    I'll check back with everyone when I know more about what stage and where it is , etc.

    Thanks for getting through this morning.

    Pawprints
  14. BeansMom

    BeansMom New Member

    I've heard about IC - ouch!

    I hope you find the right answers to your needs - even though I took Lupron with no problems doesn't mean everyone has the same symptoms -- looks like the majority of those here didn't like it!
    I agree, though, if you are near menopause and having no pain, no obstruction anyway - why do anything? Why pump hormones into your body for nothing?

    Has anyone realized how strange it is that Fibro and Endo go hand in hand? I was perfectly fine until I started with the gyn problems (cysts, pelvic pain, fibroids, endo) and then after my endo surgery it seems like the walls caved in on me and I was exhausted, sensitive to stimulus, and had all over body pain constantly..then the Fibro diagnosis. Weird, huh? I wish there were more info on the ties between these two things.

    And about having a cyst go untreated...I feel your pain..I deal with them every other month and every ob/gyn I've seen only wants to put me on the pill (which I cannot take b/c it makes my blood pressure really high) - so I deal with the pain and bloating. I'm wondering if I have PCOS? Most ob/gyn's think they are "harmless" - and maybe they are, but they can hurt like the dickens and cause a lot of swelling/bloating that isn't fun. Once a year would be fine, but 6-8 times a year isn't!!

    Good luck to you Pawprints. :)
  15. ETN

    ETN New Member

    I literally thought it was normal, having severe pain with my period since I was 11. I just thought that this is the way it was supposed to be.
    Then in 99/00 I started having severe abdominal pain and pelvic pain that was worse. They ended up finding cysts but told me it wasn't them causing the pain. I didn't believe them at all, that's ridiculous. I had a male gyno and loved him but come on. Anyway they told me they were simple cysts and that they would just die down. I know a couple of times I know they burst because I spent a number of times in the ER and whatnot.

    I was finally diagnosed with the endo. My first gyno (the male) never really treated it. This is when I started having all my other problems, fibro and whatnot.

    It wasn't until I saw this incredibly cool dr at UC Davis and I have been seeing her ever since. She basically told me that we could do a number of things. Lupron, hysterectomy....etc..
    I was way too young for a hysterectomy and just wasn't ready for that even though I had 3 children already. I was always hoping for a fourth. So I decided on doing the Lupron. I did it for 6 months and took 6 months off. It really helped me and I didn't have any side effects that I recall.

    I then went back on it after having a Dexa Scan to make sure my bones were ok because I guess it can cause bone loss. So I did it for another 6 months. After that time I ended up going on Norethinedrone and was on that for a couple of years. I didn't get my period and recently just stopped it because I am sick of taking pills.

    I am due to see her soon. I will eventually get a hysto.

    Oh I don't know who it was that said her friend was on it for 8 years, the lupron? From my understanding it is only recommended for a year? That's what my dr said. Wow that is a long time and terrible that she got a brain tumor, so sorry for you loss, that's terrible.

    Paw good luck and hope you are feeling better soon. Take it easy!
  16. ETN

    ETN New Member

    I literally thought it was normal, having severe pain with my period since I was 11. I just thought that this is the way it was supposed to be.
    Then in 99/00 I started having severe abdominal pain and pelvic pain that was worse. They ended up finding cysts but told me it wasn't them causing the pain. I didn't believe them at all, that's ridiculous. I had a male gyno and loved him but come on. Anyway they told me they were simple cysts and that they would just die down. I know a couple of times I know they burst because I spent a number of times in the ER and whatnot.

    I was finally diagnosed with the endo. My first gyno (the male) never really treated it. This is when I started having all my other problems, fibro and whatnot.

    It wasn't until I saw this incredibly cool dr at UC Davis and I have been seeing her ever since. She basically told me that we could do a number of things. Lupron, hysterectomy....etc..
    I was way too young for a hysterectomy and just wasn't ready for that even though I had 3 children already. I was always hoping for a fourth. So I decided on doing the Lupron. I did it for 6 months and took 6 months off. It really helped me and I didn't have any side effects that I recall.

    I then went back on it after having a Dexa Scan to make sure my bones were ok because I guess it can cause bone loss. So I did it for another 6 months. After that time I ended up going on Norethinedrone and was on that for a couple of years. I didn't get my period and recently just stopped it because I am sick of taking pills.

    I am due to see her soon. I will eventually get a hysto.

    Oh I don't know who it was that said her friend was on it for 8 years, the lupron? From my understanding it is only recommended for a year? That's what my dr said. Wow that is a long time and terrible that she got a brain tumor, so sorry for you loss, that's terrible.

    Paw good luck and hope you are feeling better soon. Take it easy!
  17. ETN

    ETN New Member

    I literally thought it was normal, having severe pain with my period since I was 11. I just thought that this is the way it was supposed to be.
    Then in 99/00 I started having severe abdominal pain and pelvic pain that was worse. They ended up finding cysts but told me it wasn't them causing the pain. I didn't believe them at all, that's ridiculous. I had a male gyno and loved him but come on. Anyway they told me they were simple cysts and that they would just die down. I know a couple of times I know they burst because I spent a number of times in the ER and whatnot.

    I was finally diagnosed with the endo. My first gyno (the male) never really treated it. This is when I started having all my other problems, fibro and whatnot.

    It wasn't until I saw this incredibly cool dr at UC Davis and I have been seeing her ever since. She basically told me that we could do a number of things. Lupron, hysterectomy....etc..
    I was way too young for a hysterectomy and just wasn't ready for that even though I had 3 children already. I was always hoping for a fourth. So I decided on doing the Lupron. I did it for 6 months and took 6 months off. It really helped me and I didn't have any side effects that I recall.

    I then went back on it after having a Dexa Scan to make sure my bones were ok because I guess it can cause bone loss. So I did it for another 6 months. After that time I ended up going on Norethinedrone and was on that for a couple of years. I didn't get my period and recently just stopped it because I am sick of taking pills.

    I am due to see her soon. I will eventually get a hysto.

    Oh I don't know who it was that said her friend was on it for 8 years, the lupron? From my understanding it is only recommended for a year? That's what my dr said. Wow that is a long time and terrible that she got a brain tumor, so sorry for you loss, that's terrible.

    Paw good luck and hope you are feeling better soon. Take it easy!
  18. wendysj

    wendysj New Member

    Pawprints,

    In 1999, I was 18 and diagnosed with severe Endo after three years of torturous pain. (Several trips to ER with back pain so bad I couldn't move my right side. I was also throwing up from the pain.) I was on Military insurance from my step-dad (Thank God.) and had the laporoscopy and Lupron shots for 6 months after. The doctors did a bone density test and made me take Calcuim while I was on the Lupron because it can make you lose bone density. Also, they would only do the Lupron shots for 6 months because they didn't want to risk bad side effects.

    I was still in high school (late birthday) and I went through menopause. Hot flashes and mood swings were a part of it. The mood swings weren't too bad. I was on Zoloft (10 mg) at the time too because of all the pain and anxiety I got from it. I could definitely tell a difference while I was on the Lupron though.

    This year, after 7 laporoscopies and Lupron, I decided to have a hysterectomy in January. That was a miracle surgery - for 4 months. Those 4 months my CFS went into remission too and life was wonderful!!!! Then all the pain, abdomenal swelling, fatigue, etc. came back. I was shocked and terrified and pissed because that was a big decision being only 28. I went back to my doctor (Dr. Mordel Atlanta, GA - He's fabulous!) and he said that 15% of people need to have the ovaries removed too. So I did that in July.

    Dr. Mordel made me try to Lupron shot again for 1 month to make sure I could handle the menopause syptoms before the surgery. (No sleep, joint pain, mood swings, night sweats, hot flashes - all of these syptoms can happen and the severity for all can vary for each woman.) I had hot flashes and sleep issues but it was worth it. The pain went away the 2nd week.

    That surgery was very difficult to get over because I was in a flare when I had it. I went back to work three weeks later though. It was difficult because of the fatigue and my bosses worked with me. (I was able to work from home the last to hours of the day everyday.)

    Whew... Long story.

    Anyway, I was letting you know that I tried it younger and now. It wasn't too bad for me. The menopause now isn't bad either (I'm on 10 mg Lexapro). You might want to ask them to remove everything and then Lupron isn't even needed!!!! It worked for me!

    OH! I forgot. Make sure your insurance will pay for it. It cost me $700 because I was supposed to get it through Express Scripts with my insurance and didn't... I got it at CVS.

    Good luck!

    Jamie

    [This Message was Edited on 12/09/2008]