Message about endometriosis for Tandy (and others)

Discussion in 'Fibromyalgia Main Forum' started by ohmyaching, Jul 17, 2003.

  1. ohmyaching

    ohmyaching New Member

    Hope that menopause will be the end of your problems, in my case my ovaries were removed and I have to try to balance hormones to maintain bone loss. That's not as simple as
    everyone assured me it would be.
    If only I knew back when I as twelve what I know now. I may have been able to avoid
    endometriosis. I had painful periods from day one. My sister had them too, but she was
    given birth control pills when she was young to help regulate her hormones. I wasn’t given
    any hormones and I wonder if that is why she never developed endo like me. It would
    seem that using natural progesterone cream in opposition to estrogen at the first sign of
    trouble might just prevent endometriosis. I want to open the window and shout to every
    woman in hearing distance, “You don’t have to go through what I did!”
    Unfortunately once you have endometriosis it is tricky to control. Dr, Lee’s book, “What
    Your Doctor May Not Tell You About Premenopause” tells how to control
    endometriosis with progesterone if you still have your period by inducing a
    pseudopregnancy state which, if I understand it correctly, fools the body into thinking it’s
    pregnant and doesn’t need to start the monthly build up of endometrial tissue that you
    normally have with your menstrual cycle to get ready for ovulation. Because I’m in
    surgical menopause that wouldn’t work for me-no more cycles. What I need are directions
    to regulate my hormones to prevent bone loss and offset the effects of estrogen dominance
    at the same time not causing my endometriosis to be affected.
    If you can find copies at your local library of Dr. Lee’s books concerning estrogen
    dominanace,“What Your Doctor May Not Tell You About Premenopause” and “What
    Your Doctor May Not Tell You About Menopause” I would encourage you to read
    them. The titles do a disservice to these books because they are about so much more than
    menopause. I also would encourage you to obtain a copy of the Endometriois
    Association’s Newsletter Vol. 17 Nos. 1&2, 1996 about candida and endometriosis. The
    newsletter outlines the Association’s three part treatment plan for endometriosis that
    consists of:
    1.Treating candida and eating an anticandida diet(no sugar, no yeast or fermented foods
    and eat complex carbohydrates
    2. Having your hormone levels checked and treating any imbalances.
    3. Testing for and treating allergies.
    In this newsletter Mary Lou Ballweg, the Association’s president, tells of her experience
    using this treatment and gives you an idea of what to expect. You often get worse before
    you get better, but in the end most people are happy they made the changes. It appears to be the best treatment method they have found for endo.
    You used to be able to buy copies of these past newsletters from the Endometriosis
    Association. Lately they are cashed strapped and have hidden their light under a bushel, so
    to speak, trying to get money by not sharing any information unless you join their
    organization. Kinda sad since one of their goals is to educate. You can check to see if they
    still sell these newsletters on their website without being a member.
    P.S.For those of you who haven’t read my post Autoimmune and FM you can read about
    my struggles with estrogen dominance and CFS in my profile.
  2. tandy

    tandy New Member

    For all your help, and suggestions of the books!!I will see if I can grab one at the library~ What a stinking nightmare my life has become!! I'm sure can relate! having a few DD to deal with sure is pushing my limits!! I could just cry,if I let myself!But i fight it!!every dfamn step of the way!!it just sux that Drs. are'nt available to help us!!Most don't want to take the time because we're too "complex"?????? Thats the way it seems to me.
    Anyway...thanks alot.....If I should have any more questions before,during or after the books,I'll holler for ya!!!take care :)
  3. dolsgirl

    dolsgirl New Member

    after I had a vaginal tubal ligation at age 24. Not hard to imagine how the lining of the uterus(the endometrium), got into my abdominal cavity...also that's when I had the spinal anesthesia, which gave me a spinal headache and no he didn't do the spinal patch as they didn't do that then. I've had headaches ever since. By age 30, the endometriosis had spread to cover my uterus, ovaries, bladder & part of my colon. It can spread to any part of your body. I did go on the high dose hormones to suppress it & I gained 30 pounds from the danazol & ended up with a complete hysterectomy (ovaries too), at age 30. I've been on estrogen replacement therapy ever since. I will not give it up. The study that scared the entire nation of docs and females last August was actually representative of 1/10 of one percent of the women using estrogen replacement therapy. Alot of women suffered because alot of docs immediately took their patients off it. We need it to keep our vaginal, urinary tracts working as they should in addition to alot of other things, like being able to absorb calcium. Just my 2 cents worth. dolsgirl
  4. tandy

    tandy New Member

    Thanks for your input here too!!! I have a question since I'm heading for a hysterectomy myself.Any regrets on having the surgery??did they get it all(endo)?I also have it on my bladder and colon,and they suspect adenomyosis too.(thats where the endo has invaded the muscle wall of your uterus,and the only cure is a hysto.)I just would hate to have such a major surgery and still feel alot of monthly pain!! I read on a supoport board for Hysto-sisters that some woman still have pain after their organs were yanked,and then have menopuasal symptoms on top of it!!!YUK! Just wanna do the right thing is all.So i'm asking your opinion~ Thanks!! :) How are you doing thses days??
  5. pieface

    pieface New Member

    Dearest Dolsgirl,
    I know exxxxxacetley what you are going thru! I started early menopause at the age of 30, did not know it until a 85 year old lady caught on to the way I felt. I had endomitrios also. If your Doctor is good, everything will be o.k. BUT PLEASE don't let him talk you into getting pregant to take care of it temporarly{ a baby is a life long item }it will be worth the surgery to get taken care of, before it claims other organs in your body.
    I have been free of pain and enbaresment for 3 years, and love it. Hormones are great but cause other things, opt for progesterone cream several months before and calcium viactive chews and you will be fine. GOOD LUCK
  6. tandy

    tandy New Member

    I'll reread this tomorrow.For some reason the fog is so thick I could cut it with a knife tonight!!! I read your reply,and just looked at the screen with a "What?" (puzzled look on my face):/ lol its either that or I'm just plain ole dumb....er...? Thanks......This endo crap is consuming me!!the fibro sure is'nt being to nice either! Take care~
  7. dolsgirl

    dolsgirl New Member

    "Endometriosis is primarily due to estrogen dominance. Estrogen makes cells grow while progesterone makes cells mature. When the estrogen dominates during your cycle it then produces too many cells and some of those cells start to grow in places where they should not be growing. These cells then act like uterine lining cells."

    The above is a quote from Ralph's post.

    I think your information in this paragraph is way off. Endometriosis is when some of the lining in your uterus, your endometrium, gets into another area of your body where it does not belong. It bleeds in that area when you have your period, it does thrive on estrogen, but they think it gets into the other areas by going back up through your fallopian tubes. Endometriosis isn't "primarily" due to estrogen domininance. It's because part of the endometrium is where it shouldn't be. dolsgirl
  8. franners

    franners New Member

    for years.... Docs said I was too young to have a hysterectomy (was 26) had two children and was done with the "prego" phase of my life.. I had two c-section deliveries and a miscarriage by age 22.. My boy's are 19 months apart.. Do not regret them being close together either.. BUT I finally had my total hysterctomy four years ago (36) and have not been feeling right since.. I was on premarin 0.625mg for a long time , then there was a mix up at the pharmacy.. My meds were called in and after a week of the pharmacy saying no the weren't and gyno with yes they were.. I hadn't had any.. I was feeling better.. I now do not take estrogen replacement, BUT do take a higher level of magnesium, zinc, 1500mg of oyster shell a day to help combat bone loss. I do feel better without estrogen.. MY ovaries were completely covered as well as my uterus and was on my bowels and abdominal lining (I really believe it has something to do with the surgeries we have.. I had not received any estrogen replacement until the day of my hysterectomy.. so, I guess my body wasn't missing what it already did not have..
    I am doing fine without this, and do not feel that it has anything to do with my fibro ( my opinion) hense I am feeling better with out it..
  9. ohmyaching

    ohmyaching New Member

    Dolsgirl,
    I used to think that endometriosis was caused by endometrial cells growing outside the endometrium (and still do), but knowing that men have gotten endometriosis makes me wonder where their endometriosis came from. Men, to my knowledge don't have endometriums. In both of the cases that I know of the men were being given estrogen supplementation. I believe that this helps support the theory that estrogen dominance leads to endometriosis.

    Franners,
    If you have had your ovaries removed you need to take some hormones to protect your bones or else your bone density takes a nose dive. Taking vitamins that are good for bones like calcium is okay but in order for these nutrients to get into your bones I do believe you need hormones. Osteoporosis is a nasty thing. All of a sudden your bones can start breaking just from the weight of your body.
    At best estrogen helps to maintain your bone density, but not always. There can be some loss with estrogen. Progesterone increases minerals in bones repairing losses (to some extent). The hard part is balancing your hormones so it doesn't effect your endometriosis. Can't offer any advice there since that is a problem I am presently struggling with.
    If you read the book I mention at the top of this post, it offers some info about hormones.
  10. franners

    franners New Member

    But not for heavy smokers.... I am one who has a two pack a day and have been struggling to quit but only hit the stick again.. Two many smokes and premarin make my probability of heart attack or stroke even higher, so.... they aren't for me.. No hot flashes and do my thing with the suppliments.. I am fine in that way and bone density tests show me as such.. But thank you for your concern..
    Fran
  11. trasestry

    trasestry New Member

    A year after my daughter was born, I began having terrible abdominal pains. The doc I saw back then, just "brushed me off" giving me motrin. At one time I had a whole purse full of prescriptions for Motrin. Eventually, I had picked up a different insurence plan from work, and was able to make my own appt with a gyn that specialized in endo. I was finally diagnosed. Then one day, he left the area, and I had to start all over again. Many times, I almost lost my job, because I wasnt able to work. There were many times, I had to go to the ER, because the pain was so bad. I was rupturing ovarian cysts. The pain in my legs started, and all my docs blamed the endo. Well, I finally had a hyster. this past Jan. The pain in my legs just got worse. But everything else is gone. The doc. left a portion of my one ovary in, so I, hopefully, wouldnt need any hormones. Knock on wood, so far, I dont. Endo is a terrible disease as well. I am wondering if and how the endo and fm are related. I have been seeing quite a bit of people with both. Good Luck to you, you are in my prayers. I know how terrible of a disease that is.