need to hear anyone's experience with fibroids

Discussion in 'Fibromyalgia Main Forum' started by loto, May 1, 2009.

  1. loto

    loto Member

    I went to see my gyno today, and he did exam and biopsy and seems to suspect uterine fibroids. he says according to my symptoms and the fact that my uterus is enlarged, he is suspecting this. Going to have an ultrasound to confirm in a couple of weeks. I'd like to know if any of you have had this, and what treatments you had done. I know it depends on the size of the tumors and the severity of the symptoms, but I just would like to hear from experience. thanks
  2. Shananegans

    Shananegans New Member

    My mom had fibroids and I know it caused a lot of menstrual discomfort for her. Excess bleeding and horrendous cramps, lower back pain and even pain in her legs. She ended up (after a year of trying different things) having a partial hysterectomy where they just removed her uterus and left the ovaries so she wouldn't have to worry about hormone therapy.

    She is doing wonderful now! And she healed from the hysterectomy within a month and a half at the most. I wish I could remember what they had tried before the hysterectomy but sorry I cannot.

  3. BeansMom

    BeansMom New Member

    I only have one - it was found when I had a laproscopy for endometriosis.

    Mine is on the *outside* of the uterus..sitting on top like a hat! It is fairly small and my ob/gyn that did the surgery said to remove it would cause more issues as they are just is a lot of bleeding, etc.. when removed.

    It doesn't bother me much - but my uterus is retroverted (leaning back) so some months when I'm on my period the uterus will enlarge and push forward..and when that happens the fibroid pushes right against my bladder and also my pelvis, causing some pain. I can feel it under the skin like a little ball. It scared me the first time I could feel it, I didn't think it was the fibroid - I thought I had a tumor or something!

    If yours is inside the uterus (forgot what that type is called), it can cause your uterus to enlarge a lot as if you were carrying a baby. Also can cause pain and heavy bleeding or bleeding between periods. I would say if you aren't having severe symptoms, to just monitor it to make sure they aren't getting too big.

    I think the Lupron injections sometimes are prescribed to shrink the fibroids so you don't have to have them surgically removed. I took Lupron for six months (it goes in six month intervals, one injection per month - I think you can do 12 mo consecutively though if necessary).
    I took them for endometriosis and they helped - have had rare pelvic pain since. However, they give you menopause like symptoms and some people REALLY dislike that and other side-effects. It's not a decision to make lightly. I had a lot of insomnia and nightsweats and hotflashes with it. It sucked...but I feel better now.

  4. greatgran

    greatgran Member

    I had pain, heavy bleeding and was miserable for years with my periods. Finally a doctor told me I had fibroids and one was a biggie . I had been seeing an obgyn and he never mentioned fibroids was just trying to give me meds for the heavy bleeding and I mean heavy.

    Finally I got till I would flood and would go for weeks bleeding, my blood got so low they had to give me blood and did a DNC which did nothing . So I finally had a hysterectomy, a complete the ovaries and all . That was the best thing I ever did for myself. Of course that was years ago and there are so many new things they can do now that doesn't require a hysterectomy.

    Just my experience with fibroids, they can cause problems and some have them and have no problems. I think it depends on the size and location.

    Good luck,
  5. somelife

    somelife Member

    I had two in my uterus, one the size of a small grapefruit and one a little smaller. The symptoms I had was major cramping and pain. I had a total hysterectomy at the age of 43, started on hormone replacement and felt so much better until the onset of fibro.

    Good luck with whatever you may have done.

    God bless you.
  6. cynicaldog

    cynicaldog New Member

    I was diagnosed with uterine fibroids when I was 36. I'd had heavy, painful periods for most of my life (with the exception of the times I took birth control pills), and my cramping had begun to go from "painful" to "excruciating". I seriously contemplated asking my partner to take me to the emergency room a couple of times because my cramps were so bad I felt like I was being torn into pieces. When I finally went to a gynecologist the pain was so severe that I lived in dread of my period arriving. Even opioids, like oxycontin, barely made a dent in the pain. A pelvic ultrasound showed that I had one external fibroid which was larger than my uterus, as well as dozens of small fibroids within my uterine wall. The doctor felt that I might have difficulty carrying a child if I was to decide to try to get pregnant, and with this in mind I chose to go ahead and have a hysterectomy. I was in such a hurry to get rid of the horrible pain that I made my first doctor visit and had my surgery in the span of four weeks.

    I opted for a supra-cervical hysterectomy, where only my uterus was removed and my cervix and ovaries were left intact. I had no health insurance and needed to pay cash for the surgery, so opting for this method gave me a faster healing time and I only needed to stay in the hospital for one night. My surgery was done with a spinal block and twilight sleep -- I was numb from the abdomen down from the time of surgery until about the middle of the first night. By the morning after my surgery I was able to walk around the halls of the hospital, and my doctor discharged me to try to keep my expenses down. I did great -- the day after I arrived home I was able to accompany someone on a short, 10 minute trip to the grocery store (I didn't carry or push anything, of course, and I leaned on the shopping cart, but I was up and mobile). 72 hours after my surgery I went out to lunch with family. I was discharged with vicodin but I didn't even use it: I took 800mg of ibuprofen and was very comfortable. I've had FMS since about 1996, and the period after my hysterectomy (2003) was perhaps the best I've felt since my diagnosis. Maybe it was just a mental weight lifted off me, I don't know, but I'm sure glad I had it done. My overall health seemed to improve for about a year before it started to go downhill in the FMS department again.

    There are lots of surgical options for treatment depending no whether or not you plan to have children. There's an online community called HysterSisters which provided me with tons of information so I could make a decision about what type of surgery to have.

    One last thing... if you don't have health insurance, or don't have full coverage, shop around and get cost estimates from different hospitals. I was given estimates from $14000 to $24000 for surgery, and the lower cost was actually at the nicer/newer hospital facility. When I was able to pay my bill within 2 weeks of my surgery I was given a 50% discount. My total costs were about $9500 for the hospital bills, the surgeon's bill, and the anesthesiologist's bill. Hard to believe that just one night in a semi-private hospital room costs $7500+!
  7. loto

    loto Member

    to all of you who replied! I have had lots of cramping since I had the exam, and I even started early. at least i think it's my regular period. i don't even know anymore, it's so abnormal. anyway, i'm going to see if i can get the ultrasound next week, since he told me he wanted to do it the week after my period. i just have a feeling it/they are big fibroids, because my lower abdomen is alway "pooched" out, like i am a few months pregnant! I don't want to have to have a complete hysterectomy, if possible, because of the hormone problems i hear people speak of after. i am 39 and had a tubal ligation 16 years ago after my second child, so that's not an issue with me.
    But, mostly, I just wanted to say thanks to all of you who had shared your experiences with this. I'm just totally at a loss, this year and last year have been so crazy for me, because I keep finding different things wrong with me!! And, then, on a different subject, this Friday I finally see a doctor to get a second opinion on my lyme test.
    I'm just glad I finally decided to go to doctors for the things I suspect aren't right with my health, because all the tests I've had done prove to me that it's just not all in my head, and i'm not a hypochondriac!!!!!!!!!
    thanks again, i'll keep you all posted on what i find out, and what my gyno suggests is the best treatment for me.
  8. Lau

    Lau New Member

    I am dealing with the decision of what to do/ not do about this also. Have been putting it off for many years, and actually I am glad I did. My gyn was pushing for a hysterectomy a couple of years ago, but I wasn't crazy about the idea and decided to hang in there. I did read that they usually shrink during/after menopause. Recently the bleeding has been worse and she (gyn) wants to do a biopsy. Then she said there was an outpatient procedure where the blood supply to the fibroid is cut off and the it shrinks. Not sure what it is called- possibly ablation/oblation? Anyway it sounded a lot less invasive than a hysterectomy and I am considering this procedure in the near future. Might be worth discussing with your doctor.