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very confused and lost

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top00104
top00104

I am 64 My knowledge is just common. I strongly believe in the body being whole. I am struggling with yes or no to a hysterectomy and salpingo-oophorectomy for my dermoid cyst on one of my ovaries the right handside one.I would very much like to hear from anyone about my concern. My operation is for the 30th of August 2016 (next Tuesday). I am not in pain at all but was told that the cyst is the size of a baby's head. I have asked the doctor to perform a bikini cut and remove only the cyst and maybe with the ovarie but he is reluctant to do a sub-amblical midline laparotomy. I am thinking of cancelling the operation if he dose not agree to my request. I do not know if I am doing the right thing.  I have a knee problem apart from that I am quite healthy no health problems or medications stronger than paracetamol. Apprfeciate your replies

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  • sheri44006
    sheri44006 top00104

    Posted

    I am 51 and had both ovaries a cyst and both tubes removed last year and a d&c and don't miss any of them. Love not worrying about ovarian cancer and I wasn't using any of it anyway. I was done with three tiny incisions and recovery was super easy

    • top00104
      top00104 sheri44006

      Posted

      I hace one cyst and the surgeon wants to remove my uterus the whole works. I wish they suggested treatment like yours which would have not made me wonder if it was for my well being or for organ examination I am glad for you but for me  it's maybe because of its size

    • top00104
      top00104 sheri44006

      Posted

      Glad to hear how yours went, I wish mine is as easy as yours  thnaks for sharing
  • JanieMac
    JanieMac top00104

    Posted

    Hi

    ​I can understand your concerns.  It does sound like the dermoid needs to be removed, and it will have damaged your ovary (I would imagine) beyond repair but why do they want to do a hysterectomy?  That would be my main question to them.  I had a 9x9cm dermoid removed plus ovary (as it was so damaged) but no-one mentioned a hysterectomy and I was 55 at the time.

    • top00104
      top00104 JanieMac

      Posted

      This I questioned the surgeon and he said it is for my safety the risk of whatever that may spread but he tokd me that it was not cancer so I really don't understand why a hysterectomy. Unless there is something that he isnt telling

    • top00104
      top00104 JanieMac

      Posted

      I dont understand either,  There is no mention of the ovary being damaged
  • sheri44006
    sheri44006 top00104

    Posted

    I did ask for a hysterectomy while she was doing the surgery but she would not do it as she said there was no need. Not sure why your dr wants to do it unless you are having problems
    • top00104
      top00104 sheri44006

      Posted

      I dont understand myself I am not suffering at all and the GP found  I quote (something not normal) after manually examaning my stomach, sent me off for a scan then decided surgery. If I have problems I would feel it,  wont I? I Have a knee problem and I maybe a little over weight, dont see the GP often I have a medical certificate for my knee every three months and the strongers medication I take is paracetamol. Thats my medical history.

    • justfromerica
      justfromerica top00104

      Posted

      Did they send you for more bloodwork at all?

      My cyst is 99% benign but they sent me for additional bloodwork and if they had suspected anything from that bloodwork, like the possibility of malignancy or borderline malignancy etc, they would be removing the cyst whole and probably all my reproductive organs as a precaution. My bloodwork all came back normal though.

      My only thinking would be they found something "off" in bloodwork they may want to remove more organs as a precaution. Not to scare you or anything, just generally curious if that would be the reason or not.

    • top00104
      top00104 sheri44006

      Posted

      I dont know but maybe theres something he isnt telling shouldnt be though. With all the questioning I did I still dont understand.
  • aged-too-fast
    aged-too-fast top00104

    Posted

    You are right to question this. And the problem is that you have no control once you are under anesthesia. I've been in your shoes and wish every day that I had listened to my inner voice and sought out a new gyn / surgeon. I would probably still be intact.

    A surgeon who has good cystectomy skills should be able to cut the cyst away from your ovary and save your ovary. The ovaries produce hormones our whole lives and removal of any part of the "reproductive" system (even one ovary) can permanently disrupt the entire endocrine system (the ovaries are endocrine glands). There should be absolutely no reason to remove your uterus based on what you've said.

    I cannot stress enough how my life has been shattered by the removal of my organs. Not only have I aged at breakneck speed, my bladder and bowels have never worked normally since. I have zero sexual desire and  orgasms are disappointing if/when they happen. The severing of the pelvis' support structures / uterine ligaments has destroyed my figure and is the source of back and hip problems. I've lost my zest for life and have to force myself to do things every day. I've even lost the strong bonds with my husband and children. HRT helps with the classic menopausal symptoms but this is much more severe than natural menopause. I don't even think "surgical menopause" is an apt label.

    Numerous studies show that removal of the ovaries does more harm than good when done for benign conditions. Of course, the younger one is at the time of surgery, the more harmful it is. But why lose any part(s) if it isn't necessary?

    Best of luck getting care that restores your health versus causing a whole new set of problems.

    • top00104
      top00104 aged-too-fast

      Posted

      Many thanks for your reply I am sorry for what you had to to go through and how you feel now. I was afraid of exactly the same of how I would be after the operation. I was supposed to have the operation on the 10th of June but I decided to wait because I did not agree to the surgeons decision. I was not given any choice of treaatment then again I thought maybe because of the size of the cyst that is why they decided to operate. I am grateful to you for now I will ask the surgeon to remove only the cyst if possible. I was asured that he is a good surgeon and if he is that good then surely he can do it. But he did mention that he did not want to burst the cyst. By the way he told me not believe everything on internet. But I had questions for him even before I went on line. Again I thank you very nuch for all you have said this has helped me a lot and my mind is more relaxed now and I will be making some serious decision.
    • Fairy28
      Fairy28 aged-too-fast

      Posted

      I agree with evrything you've said here. Im in a similar situation to you and my body is a mess physically and mentally. Also surgical menopause phrase totally underestimates the severity of how disruptive this whole mess is. Second opinion definatley before any action 😥

    • aged-too-fast
      aged-too-fast Fairy28

      Posted

      Lou - I'm sorry you're also suffering. sad How long ago and at what age was your surgery?

    • Fairy28
      Fairy28 aged-too-fast

      Posted

      Hi there, I had a hysterectomy when I was 30,  ( 24 years ago ) leaving one ovary. Due to large 20 x 20 cyst I had that removed with an oophorectomy - it will be 3 years in October and it's been hell ever since. Although saying that the hot flushes are not as bad I have to say BUT so many other things have happened , so many other problems. Nightmare 😥

    • aged-too-fast
      aged-too-fast Fairy28

      Posted

      Nightmare is spot-on! It's a travesty that our organs are treated as disposable. sad Why is that true of women's organs but not men's?!

       

    • aged-too-fast
      aged-too-fast Fairy28

      Posted

      Forgot to ask - Are you on HRT? If so, maybe it's not the "best fit" for you. I was a complete "basket case" for 1-1/2 years post-op because the estrogen patch I was on was not giving me enough or consistent enough estrogen. And since HRT is so individual and most doctors are pretty clueless, I had to figure this out myself. Talk about adding "insult to injury!"

    • Fairy28
      Fairy28 aged-too-fast

      Posted

      You are so so right on all levels. I feel like ive been castrated - nothing left , all ripped out and left to deal with the crap left over. Although I guess life saving BUT I often wonder if there was another way, I wanted to cling on to that last ovary for dear life for obvious reasons but it's gone ! .......No im absoloutley not on HRT - my consultant was ' happy ' for me to go on oestrogen only but that meant regular mammograms and checks , he explained the risks so I thought ' no thanks havnt I been through enough '. Are you still on oestrogen?  How are you feeling in yourself ? ..... Ive actually just started counselling due to mega anxiety / health anxiety, panic attacks on the list goes on ! 😁

    • bobbysgirl
      bobbysgirl Fairy28

      Posted

      I sometimes think our cats get better treatment from the vet, than we do from our doctors! rolleyes

    • Fairy28
      Fairy28 bobbysgirl

      Posted

      Hi and yes I agree with that too ! Hope you doing ok 😉

    • sheri44006
      sheri44006 aged-too-fast

      Posted

      The other side of this story is feeling wonderful. I am sorry you had such a bad time of it but I am thrilled that mine are gone. Our ovaries put out very little hormones once we are in menopause and their are many natural things to take afterwards to stop the side effects. I take black cohosh, DIM. I finally after all these years sleep like a baby and look so much better. Wish they would have taken mine out earlier.
    • aged-too-fast
      aged-too-fast Fairy28

      Posted

      Lou - Castrated is the proper term although never used by the medical community because we'd say "NO WAY."  It wasn't life-saving for me because there was no cancer or other reason to remove my parts. I know your cyst was huge so it may not have been possible to save your remaining ovary which is a shame. The appalling thing is that my surgeon waited for the results of the frozen section. Even though it was benign he proceeded to rip out the rest of my organs. One reason I stress to push for cystectomy when possible is that not only can removal of one ovary impair hormone production, you are in a bad situation if something happens to the other one down the road.

      Studies have shown that estrogen does not increase risk of breast cancer but estrogen plus progestin does. So I don't understand the mandate to get mammograms if taking estrogen. Estrogen can make breasts more dense so mammograms can be more difficult to read.

      Yes, I am still on estrogen with no plans to stop taking it...afraid what will ensue since my symptoms were so severe when I wasn't getting enough. I am WAY more functional than I was when I wasn't getting adequate estrogen but I don't have the basic joy and zest / endorphins I took for granted and motivation is lacking. I could not even listen to music or read books for a couple years post-op because I couldn't enjoy them. Getting enough estrogen did bring me out of a deep black hole of depression, no anti-depressant needed. Keeping busy helps keep the sadness and regret at bay but they are never far from the surface.

      It's good you've started counselling. I went through a bit myself because I had to work through the awful betrayal by my gyn of 20 years. Plus I had to find a way to stop the ruminating and forgive myself for not listening to my inner voice. I went through a number of therapists because some just weren't helpful. Ironically, the most helpful one was the youngest and was still working on her clinical hours to get licensed.

      Best of luck to you. Please keep me updated on how you're doing.

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