Complex ovarian cysts- anyone go through this? How did gyn surgery affect?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by herbqueen, Aug 21, 2012.

  1. herbqueen

    herbqueen New Member

    Hi everyone-

    I was diagnosed with a 5-6cm complex cyst on my right ovary and a 2 cm complex cyst on left. Also thickened uterine lining and a few small growth there as well. I had polyps removed 3 years ago. I'm 50 and still regularly menstruating. I'm wondering about hysterectomy, ovarian cyst removal , etc etc. and effect on your fibro illness. I have alot of numbness and neuro symptoms so worried about the effect of surgery on that- and in general how my body will handle it.

    I've been trying alt therapies to no avail. I'd like to at least keep one ovary for hormone reasons.

    I read that progesterone cream might help with complex cysts? i.e estrogen dominance. Thoughts?
  2. Marta608

    Marta608 Member

    My experience with cysts was with a dermoid cyst years ago. There seemed to be some urgency in removing it, so yours must not be the same kind.

    I do know that I had a total hysterectomy when I was 40 and was very relieved. The rest required with surgery might help, not hurt.

    I'm sure there will be more helpful answers yet to come.

    Good luck.

    Marta
  3. herbqueen

    herbqueen New Member

    Marta- how old are you now. Did you take HRT? Did you have issues with sex drive or other health issues?

    I have a neighbor whose mother had a totaal hysterectomy at 40 and she is now 94 and healthy. I read that removing the ovaries increases your risk of other cancers, stroke, and heart disease and dementia-but I know that is not always the case given the long healthy life of my neighbors mother!
  4. Marta608

    Marta608 Member

    Ha! I am old. I'm 74 and healthy EXCEPT for CFS/ME. A big exception there.

    At the time, I was scheduled for a partial hysterectomy but the night before my surgery my doctor came to the hospital to see me. He'd been on vacation and was "just checking in", he said. But he BEGGED me to have a total. I agreed and, when the biopsy was done, a cancer cell was found in one ovary.

    The hormone adjustment was frustrating - I had to wait two weeks before I could begin hormone replacement - but I've never been sorry I chose as I did. My sex drive was stronger than ever once I didn't have the monthly pain and long periods with blood clots. TMI?

    I say find a doctor you trust, if you can, and take their advice.

    Marta
  5. Hello there, hope you are having a good day, still a newbie here, but wanted to share with you my experience with cysts & TOTAL hysterectomy, from the start as a teenager my periods were terrible, always had to miss the first day of school, terrible cramping, flooding,throwing up, on the heating pad at a very early age 12, thru the years it just continued on the downward spiral, early 30's, started having periods between periods, blood clots, alot of pain, gyn put me on birth control pills(even though i had already had a tubal after 2nd kid), they helped for 6 months, maybe, changed gyn's, knew there was something going on that dr was not trying to figure out, 2nd gyn, first visit, told me there were 2 things going on, right off the bat, i had a scopy thru the belly button(cant think of the name right now to much fibro fog) lol, left ovary was full of fluid and horrible endemetreosis, dr drained to fluid off ovary to try and save it and scraped out the endemetrosis, he said the endemetrosis could back anytime, well it did 3 months later along with severe pain again from the left ovary, also bleeding 24/7, clots, got scheduled for surgery, all said and done at the age of 32 had a total done, best thing ever!!! it took maybe almost 1 yr to find the right estrogen for me, tried 2 diff pills, since i was young my body was requiring more estrogen than if i were older, so i had estrogen shots every 3-4 wks, my sex drive was amazing lol, after fighting for so many yrs with terrible pain and periods, hubby was a happy man lol, after a yr of shots , tried estrogen pills again and had great luck, still on them, as the fibro is concerend i was having symptoms then but didnt know what it was until about 5yrs ago, if it were me in your shoes i would do it, i have alot of things wrong with me, and in chronic pain everyday from them, and the fibro, but maybe taking one problem off your body may not be a bad thing, sry to have written so much, i hope you can find some answers that will suit you and your body, having fibro is enough for us to deal with and our other issues, but when your girl stuff starts putting more stress on our bodies i say get rid of it, one less thing for your body to deal with, good wishes to you
    Kim
  6. sorry forgot to tell you i also did have cyst on my both my ovaries
  7. FaithHopeCure

    FaithHopeCure New Member

    I had a complete hysterectomy (both ovaries) out when I was 35. I had severe endometriosis, cysts and fibroids. I had three laparoscopies and then finally had it all taken out! I was fine when I was on the pill but whenever I was off the pill then all the endo pain would come back. I had to stay off the pill to try to get pregnant and the scare tissue was so bad that it was on my colon, pancreas, ovaries were attached to my adominal wall and uterus was attached to my coccyx with scar tissue.

    I had to use a surragate mother to carry my son (my genetics). When my son was one years old I had the hystectomy because my insurance would not cover the lupron that kept all the cysts, fibroids and endo from growing.

    After the major surgery and hysterectomy to get endo disease off my my organs I went into major menopause. It was hell! I was put on estrogen shots, the birth control pill and then bio-indenticals. I am now 45 and finally don't have menopausal systems although I still use bio-identicals both progesterone and estrogen.

    I tell you my story because I had a severe case of cysts and other diseases. I had no choice and menopause was a complete nightmare. My fibro issues went haywire! I would try the progesterone first, it may balance things out for you. Good luck!
  8. 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.