Anyone w/ cfs/fm & endometriosis?

Discussion in 'Fibromyalgia Main Forum' started by Trini, Dec 10, 2002.

  1. Trini

    Trini New Member

    Anyone out there w/ this wonderful combo? Do tell cuz I can't seem to find anyone with this common ground and I know there must be somebody.

  2. Trini

    Trini New Member

    Anyone out there w/ this wonderful combo? Do tell cuz I can't seem to find anyone with this common ground and I know there must be somebody.

  3. BonBons

    BonBons New Member

    I have CFIDS and had 2 surgeries for endo - a TOTAL hysterectomy (1984) and 5 years later, lap surgery for more and adhesions. I went through similar trials then, getting docs to believe it was recurring (as I do now, knowing I have CFIDS and just finding a doctor who MAY think I have it). Every single doc I saw said I couldn't have it, I had the surgery. That was way back when the endo assn. (wonderful group) found a link to candida as well, which I also had all the time. I'm not even sure they got it all the first time. when I woke up from the first surgery, the doctor and I had a fight because he insisted on injecting me with Premarin. (I was very, very sick; ordinarily I back down from authority) The good news is that a very kind, thoroughly educated chiropractor treating me for neck and back problems realized my severe pain and recurrence. He did all the footwork calling in the very best people for me to see. When my second surgery was done, the doctor looked me in the eye and said "your pain was very real". No sh-t. That same chiro died later of a brain tumor, but I will never forget his kindness to me, and pray for his family still. You are not alone. BonBons
  4. kellym

    kellym New Member

    add Hahimoto's to it. There are many on this board who feel the same as we do because they have the same problems, so you'll never be alone!
    Kelly M
  5. Shirl

    Shirl New Member

    Hi Trini, welcome to our world. I am just dealing with the Fibro, so will let the others that have all three share with you, just stopped to welcome you to the board.

    Shalom, Shirl
  6. karen55

    karen55 New Member

    I had endometriosis for years, but at the time, did not have fibro, or at least I was not aware that I did. I was only recently diagnosed with FM and CFS. And I honestly cannot imagine how I would feel now with the CFS and FM flaring like it has been, if I still had endometriosis. I had several surgeries for endometriosis and finally had a total hysterectomy, but the idiot doc who did that particular surgery did not bother to check around in my abdomen for endometriosis, so he closed me back up minus ovary, tube, uterus and cervix, but left the endo, AND gave me a delestrogen injection the very next day. 3 months after my surgery I was still bleeding, still in a lot of pain, and this doc kept me coming back for alternate freezing/burning of the *scar line* where he removed my cervix. I went to someone else, there was a growth there, that was causing the bleeding, and lo and behold, I still had endometriosis. He took me off of all my *female* hormones, and put me on some *male* hormones for several months, which made me feel really bad and depressed, but it got rid of the remaining endometriosis. And as I posted on another post, my only regret was that I didn't have the hysterectomy sooner; I would have had about 6 or 7 years without that additional pain. I urge you to get some treatment for the endo if you can. You will feel better.
  7. tandy

    tandy New Member

    Do I sound excited??!! I wanted to welcome ya here.
    I have the combo!!When one acts up-the other does too!!It is great huh??LOL I'm 39 yrs old,and betweeen the 2 illnesses.....I don't know if i'm coming or going!!!They wreck havac on me!! I've had a few surgerys for the endo,(the latest being this past August)but Its still there.I feel the pain and take injections of depo.I should have the Hysterectomy but I'm a chicken s**t!!So here I sit with FM and endo~ gotta love it!! I have a few bad disks too and IBS.If you need someone to chat to...let me know and I'll get ya my e-mail. Take care~
  8. Jewelz

    Jewelz New Member

    Hi trini,

    Im not battling the cfs, but have the fibro and endo together. I wish you best of luck with all three combinations. I couldnt imagin with 3. My two alone is really not the prettiest site. It can become very overwhelming with the pain.

    Good luck!!
  9. 2BPainfree

    2BPainfree New Member

    It's good to hear from some others who have the same problems. I have had 4 surgery for severe endo and adhsions....gutted "like a fish" as my 15 year old puts it (I'm 38) Picked apart peice by peice each time being reassured "this will fix it"

    Well.....even after a total hysterectomy I'M STILL HAVING PAIN!!!! Almost on a regular schedule. An ultasound last month (and an exam that made me just about "Fly" off the table) showed I have a blood collection in my lower abd, yet again. I have been trying to tell them the pain is specific for months but no one really listens....arrrgh!

    I suffer also with fibro and chronic fatigue. I've had to quit working because I can't function well half the time. I have a business out of my home and I have a terrible time even trying to do any of it (My poor husband comes home from work and takes over) So yes....beleive me I understand any pain and frustration you may be having!

    Susan B.


    Yes I have Fibro and now just recently Endometriosis.
    I'm supposed to go in for a total Hysterectomy sometime after the holidays. I'm curious as to how I will feel after the surgery. I wonder if it will relieve any of my Fibro symptoms, or make them worse....
    I will post info after surgery.
    Keep us posted...

  11. northwoodssue

    northwoodssue New Member

    House of blues and trini:
    I had fibro and endometriosis too and had a hyster at the age of 25!!!!! It was bad, to say the least. Wasn't dx'd with fibro til 6 years ago.
    As far as feeling better after surgery, I can only speak for myself and say a resounding YES, I felt much, much better. I felt so miserable with the endo that the relief from the pain was great!!!! I had to take replacement hormones, and am still on them, but that was a fair tradeoff to me! Just remember, they are taking away the baby carriage, but leaving the playpen. hahaha
    good luck!
  12. missvickielynn

    missvickielynn New Member

    Hi Trini!

    Welcome to the board!

    This subject has been discussed a lot here on this board in the last year. You might go to the top of the page and do a search on the board for endometriosis, and you will find lots of posts about it.

    I have CFIDS, FMS and several other (related?) conditions. I have spent the past year and a half going through menopause. I have not had a period since April or May.

    I had endo for many years, beginning in my late teens-early 20's. I suffered with incapacitating pain and IBS every month, which worsened over the years. I had ruptured ovarian cysts twice, but they were not treated. I used prescription and over-the-counter NSAIDs to deal with the pain. Of course, those drugs just barely helped the pain, and they worsened the IBS problems.

    I was so afraid of going under general anesthesia that I resisted even laparascopy for years. When it became obvious that I would have to stop using NSAIDs, I finally had laparascopy in 1986, and they removed my right ovary, which was one big endometrioma. It was 3 times the size of the left ovary. (They took laparascopic photos of my ovaries, tubes and uterus during the surgery.) The also found several fibroids on my uterus. They found no other visible endo in my abdominal cavity, or on other organs, so apparantly (and hopefully) it was confined to my right ovary. They also did a D&C.

    The horrible pain and other problems with my periods never came back after having that endometrioma removed. Then, having only one ovary left and being (then) 43 years old perimenopause began to occur pretty quickly after the surgery.

    For about 2 years after the surgery, I thought that my health was improving.

    It wasn' was getting worse....but I didn't realize just how ill I was with the other issues (CFIDS, FMS, Herpes Viruses, and others) until I had lived for a while without the distracing endo pain and IBS that came every month.

    But I must admit that, as ill as I am today, I really don't think I would be able to endure going through the endo pain again! I am very grateful that I do not still have that pain to deal with, in addition to everything else!

    There were some studies done, and reported on, this year, showing a definitive link between endo and other autoimmune diseases, including CFS. I am assuming by what you said that you have not read those reports. You might do a web search on "endometriosis and autoimmune diseases" and find the articles. If you don't find them, and are interested, I have two of them saved on my computer that I can send you in email (I could even just send you the links or the urls.)

    I hope you will tell us more about yourself and your experiences with this trio of ills!

    Wishing you pain-free days, and enough energy to do something you really want to do!