High CA125-no cancer? stage iv endometrosis with ovarian cysts/hysterectomy

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by herbqueen, Apr 6, 2013.

  1. herbqueen

    herbqueen New Member

    Hi all- I'm back- I'm 51 years of age and menustrating still like clockwork!

    My story expanded from just dealing with ovarian cysts--I decided to go bio progesterone 6 months ago and try the modified gerson therapy for my fibro/neuro lyme and gyn issues ( cysts on each ovary, thickend uterine lining with small growths) TONS of pain.

    It got much worse over the winter and the fibro pain and new joint came like I'd not had in years. My symptoms had been mostly neuro lyme related last 6 years. I was dx'd with fibro 15 years but in last 6 years MS type symptoms-optic neuritis, numbness- got worse on various lyme treatments. Then the gyn issues reared there ugly head. My fibro/lyme has always worsened during my periods. My hemoglobin also was low and I thought it might be the vegan diet I went on /high raw but I was also having heavy periods too. The pain became much worse on gerson- I'm not sure if the coffee enemas were aggravating things (there supposed to help with pain-but not me) I was on gerson for 5 months.

    LOng story short. I scheduled surgery to have the one and possibly 2 ovaries removed for yesterday. On thursday my blood tests came back at CA125 was through the roof at 854. This is the cancer marker for ovarian cancer-though not reliable. I went into complete panic. It was normal a year ago and my gyn has assured me all along this is not cancer.

    In surgery yesterday she found no signs of cancer but did find stage IV endometrosis. She took some biopsies and decided to do no surgery since it was day facility and not the main hospital /not a place for more major surgery. She is recommending totaly hsterectomy with ovaries and will remove as much endometrosis as possible and 3 months of lupron shots. This seems very scary to me. But I also recently developed painful breast cysts--estrogen dominance seems to be a problem with me. Shouldn't things be getting better and not worse estrogen wise as I head into menopause. This is all so confusing. I read on wiki that hysterecotomy for endometrosis is only 40% successful? does anyone have any recommendations/experiences they would like to share? And of course I am still concerned about the CA125 which I believe can me an indicator for other issues. That is a mystery. She is having it re-run at the same lab (qwest). Dang this life throws you many twist and turns-I go from MS scares to cancer scares--my doc still seems quite confident there is no cancer but she can't explain the ridiculously high ca125. She said higher than she has seen on any of her ovarian cancer patients. I'm stil wondering if just taking the ovaries and leaving the uterus would be wise for structure purposes? I'm thin and try to be very active. The uterus is large and I think covered in endo-but I've not had a chance to talk to her about what she saw since she talked to my husband after surgery and had to leave before I was alert.
  2. herbqueen

    herbqueen New Member

    What was your history of endometrosis- I never had any major pain (aside from my monthly periods)until developing the ovarian cysts- the past 1.5 years. Did you have major symptoms? Did you have the cyst removed and did it help significantly? What age did you go through menopause? I'm concerned it could be along time for me since I'm 51 and still very regular each month. It is tough since I have many neurolgoical symptoms and now the fibro pain an dnew joint pan returned this winter. Thank you!
  3. sunflowergirl

    sunflowergirl Active Member

    Painful periods from the time I first started....age l0. Then an xray showed a cyst on my ovary when I was around l9. I had to go in about every 4 months for a check on it and the endo. By the time I was 24 the doctor had to remove the cyst. And he told me I had a lot of endometriosis and I should try getting PG as it was hard to stay PG when you had it. Once I had my first child at age 27 the menstrual cramps went away......my body was probably just waiting to hit me with FM. When I had my 3rd child at age 30 he told me I had just a piece of an ovary left. The other one had vanished from the cyst being removed. And I had my last period at age 40.

    I've said this before.....I got a defective model!
  4. Annesse

    Annesse Member

    Everything you are experiencing can be explained. There is a connection to endometriosis and CFS and fibro. According to a study conducted
    by researchers at the National Institute of Child Health and Human
    Development, the George Washington University, and the Endometriosis
    Association, women with endometriosis were over a hundred times more
    likely to have chronic fatigue syndrome than the general population of U.S.
    women (NIH, 2002). Hypothyroidism was seven times more common and
    fibromyalgia was twice as likely in the women with endometriosis.

    The increased risk for developing endometriosis is due to elevated levels of nitric oxide. Nitric oxide regulates vascular endothelial growth factor (VEGF), which is responsible for new blood vessel growth. Patients with CFS and fibromyalgia have elevated levels of nitric oxide. Here is a excerpt from my fibromyalgia book on the connection to nitric oxide, VEGF and endometriosis.


    "Angiogenesis has long been a recognized feature of endometriosis. Endometriosis is defined as the growth of endometrial tissue outside the uterine cavity. This excess growth pattern can lead to diverse symptoms, such as pelvic pain, infertility, and heavy bleeding. According to the National Institutes of Health (NIH) there is a “strong association” between endometriosis and fibromyalgia (NIH, 2002).

    Our next studies confirm the involvement of excess nitric oxide and VEGF in endometriosis.

    Nitric oxide synthesis is increased in the endometrial tissue of women with endometriosis.

    Wu, M.Y., K.H. Chao, J.H. Yang, T.H. Lee, Y.S. Yang, H.N. Ho. 2003. Hum Reprod 18(12):2688-74.
    “Greater amounts of NO and NOS are present in the endometrial tissues of women with endometriosis.”


    Increased nitric oxide in peritoneal fluid from women with idiopathic infertility and
    endometriosis.

    Dong, M., Y. Shi, Q. Cheng, M. Hao. 2001. J Repro Med 46(10):887-91.
    “To verify whether nitric oxide in peritoneal fluid is associated with endometriosis and infertility…An increased peritoneal level of nitric oxide is a common alteration in endometriosis, endometriosis-associated infertility and idiopathic infertility and may be associated with the pathogenesis of these diseases.”

    Vascular endothelial growth factor (VEGF)
    concentrations are elevated in peritoneal fluid of women with endometriosis.
    McLaren J, A. Prentice, D.S. Charnock-Jones, S.K. Smith. 1996. Hum Reprod. 11(1):220-3.

    “Active endometriosis is characterized by hypervascularization both within and surrounding the implant; therefore the presence of angiogenic factors in the peritoneal environment would be of great importance. Vascular endothelial growth factor (VEGF) is a potent angiogenic factor involved in both physiological and pathological angiogenesis. We sought to determine if VEGF was present in the peritoneal fluid of women with and without endometriosis, and to establish if differences exist between these groups. VEGF was present in all patients sampled. The fluid from patients with endometriosis contained significantly greater amounts of VEGF than controls…We suggest that elevated levels of VEGF in the peritoneal fluid of patients with endometriosis may be critical in the pathogenesis of endometriosis.”


    Here are some studies on the elevated levels of nitric oxide in CFS and fibromyalgia.

    Pall, M.L. 2002. Levels of the nitric oxide synthase product citrulline
    are elevated in sera of chronic fatigue syndrome patients. J Chro Fatigue
    Synd 10(3/4):37-41.


    The following study found that nitric oxide synthase (NOS) activity was significantly higher in fibromyalgia patients. Nitric oxide synthase produces nitric oxide.

    Arginase, NOS activities, and clinical features in fibromyalgia patients.
    Cimen, O.B., M.Y. Cimen, Y. Yapici, H. Camdeviren. 2009. Pain Med. 10(5):813-8.
    “We found that NOS activity was significantly higher…”


    Studies show that patients with endometriosis and CFS/FM patients have an increased risk of cancer. Following is another excerpt from my book.

    "Are nitric oxide and vascular endothelial growth factor linked to cancer also? Studies confirm that this is indeed the case. For instance, the following study found that nitric oxide and vascular endothelial growth factor are involved in breast cancer and that this involvement correlates with “metastasis and poor prognosis.

    Nitric oxide in breast cancer: induction of
    vascular endothelial growth factor-C and
    correlation with metastasis and poor prognosis.
    Nakamura, Y., H. Yasuoka, M. Tsuijmoto, K. Yoshidome, M. Nakamura, K. Kakudo. 2006. Clin Cancer Res 12(4):1201-7.
    “Our data showed a role for NO in stimulating VEGF-C expression in vitro. Formation of its biomarker nitrotyrosine was also correlated with VEGF-C expression and lymph node metastasis.”
    [This Message was Edited on 04/10/2013]