Total hysterectomy scheduled with da vinci--looking for any advice

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by herbqueen, Apr 17, 2013.

  1. herbqueen

    herbqueen New Member

    Hello all- I'm in the fibrl/chronic neuro lyme category. I've been having increasing pelvic and abdominal pain for over a year when they discovered a complex ovarian cyst on my right ovary 5 cm. The day before my surgery which was april 5 the ca -125 numbers came back at 854. During the laproscopic surgery there was no evidence of cancer and washings were also benign. I was diagnosed with stage IV endometrosis, large uterus (also lining thickened with small growths), chocolate cystmost likely on right ovary, small cyst on left ovary. I'm 51 and not in menopause and don't seem to e close The Doc is recommending totaly hysterectomy which is scheduled for May 2 with the da vinci. I'm debating whether or not to keep cervix. I did have an abnormal paps 3 years ago due to uterine polyps, last 2 pap smears have been normal. On hyster sisters it seems there are nightmare stories especially with the fibro folks --what are folks experiences here? It looks like the lord has given me another experience to grow stronger. The dr is recommending lupron shots for 3 months (which I am not going to do) and no hormone therapy to quiet endometrosis. I'm hoping this will make me better/stronger w/o the monthly cycle which usually makes symptoms worse too and too much loss of blood. I did try progesterone creme for 6 months which did help the bleeding but not the pain. Any advice? Encouragement? Thank you so much ladies!
  2. Hi there, I wish I would have seen your post earlier, haven't been on here for awhile, I had a total hyst done at the age of 32, I am now 46, the first thing that happened was a lot of pain on my left side, had a cyst on that ovary and was full of fluid, cyst was removed and fluid drained, then I started bleeding 24/7 a couple of yrs later, severe pain, dr went back in to find severe endometrosis, he lazered what he could in the uterus, said it could stay gone forever or return at anytime, well it was good for 3 months then started up again and also the left ovary was acting up again, went in and did a total hysterectomy, ovaries and uterus, was put on hormones, the pills didn't to that great for me at that time because I was so young my body needed more estrogen, so I took the estrogen shots every 3wks to keep me balanced, did the shots for about 2yrs then went back to the pills, have been fine ever since, but I do want to say it took a good yr for the hormones to get balanced, at that point in my life I had not been diagnosed with fibromyalgia, in my situation I have to say doing the total hysterectomy was the best thing I ever did, no more periods, no more pain, I never regret doing it, well actually I didn't have a choice, I hope things work out for you on whatever you decide to do,God Bless

    Sunfloweryellow
  3. Hi there, I wish I would have seen your post earlier, haven't been on here for awhile, I had a total hyst done at the age of 32, I am now 46, the first thing that happened was a lot of pain on my left side, had a cyst on that ovary and was full of fluid, cyst was removed and fluid drained, then I started bleeding 24/7 a couple of yrs later, severe pain, dr went back in to find severe endometrosis, he lazered what he could in the uterus, said it could stay gone forever or return at anytime, well it was good for 3 months then started up again and also the left ovary was acting up again, went in and did a total hysterectomy, ovaries and uterus, was put on hormones, the pills didn't to that great for me at that time because I was so young my body needed more estrogen, so I took the estrogen shots every 3wks to keep me balanced, did the shots for about 2yrs then went back to the pills, have been fine ever since, but I do want to say it took a good yr for the hormones to get balanced, at that point in my life I had not been diagnosed with fibromyalgia, in my situation I have to say doing the total hysterectomy was the best thing I ever did, no more periods, no more pain, I never regret doing it, well actually I didn't have a choice, I hope things work out for you on whatever you decide to do,God Bless

    Sunfloweryellow
  4. onedaysoon1959

    onedaysoon1959 New Member

    Hello,
    Being very new here and this being my first post please excuse that it is after the surgical date you had scheduled. How are you doing? I do know that the Da Vinci method is less invasive than the total abdominal hysterectomy I had done March, 2009. I hope surgery was a great success for you. I had had some menstral issues from the age of 11. But after my auto accident which caused physical problems for me and a year later was diagnosed with fibro on top of them. I ended up having an endometrial ablation, more biopsies, etc until we made the final decision that I was not putting myself through another ablation surgery when there was medical evidence for a full hysterectomy. My doctor agreed but felt that if we were going to do it, both ovaries & tubes were coming out too not just the uterus and cervix. I had not gone through menopause and there was a concern that I would have to take HRT which I did not want to do by adding more medications into my system. I did okay for a number of months, then had to have surgery related to damage from my accident (done Aug 2009). It was a few months later that I began having major mood swings in the blink of an eye, night sweats were awful and had been having hot flashes before the hysterectomy but they were worse.
    So, I talked to a naturopathic doctor and went the herbal route and the bonus was that he was also my pharmacist so he knew my medication history. I used the herbal HRT's for a couple of months and haven't had to use anything since!! No night sweats or hot flashes to really speak of since then. I'm here if you ever want to chat.
  5. jaminhealth

    jaminhealth Well-Known Member

    back at about age 40, FM didn't hit me until 61....Thinking back, my worst issue is that I came out with a horrible sciatic nerve condition, which has been with me over 30 yrs...

    I have been taking DHEA for about 10 yrs at least and that hormone keeps me vital, don't look anywhere close to my almost 75 yrs....

    Anyway, I wish you the best possible outcome and stay positive...surgeries are hard on us. But it could be quite
    positive for you.....sounds like you gotta do it. jam
  6. herbqueen

    herbqueen New Member

    Thank you jamin! I love your spirit! Did you take any hormone replacement at the time or other than the DHEA? I 'm not that worried about the vanity part-I just want to be healthy. But a small part of me does want to keep looking good. I had heard that it causes skin aging-

    That's a bit discouraging on the nerve issue-- did you ever try yoga for it? I have hip /some sciatic but find yoga really helps. Though between the exploratory laprocopy and now scheduled surgery I won't be doing that for a while- have to visualize it I guess!
  7. jaminhealth

    jaminhealth Well-Known Member

    close to my alternative healing world, and did try that "bad" Premrin at a point and had to get off it, my breasts got hard as rocks...thinking back.

    I've done everything over the yrs for the sciatic issue and it's not with me in a bad state all the time, but it flares up and I stretch it out, etc....advil is one of my best friends...