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need help and advice before wednesday

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  • need help and advice before wednesday

    Hello to everyone
    I had a problem finding my way round the forum so forgive me please if I'm in the wrong place.
    In three days time I have my third cystoscopy, the second being under G. A.
    I have had a prolapse of a sort for three years and intense pain in right side under breast and the vagina feels as though a goll ball on fire is there ..I can stand for twenty mins max before gravity causes the lump in vagina to drop.
    I have seen everyone,sometimes more than once and had all imaging which shows nothing.
    I begged for hysterectomy in 2008 age 58 I was convinced it was a womb prolapse but was always told different. The hysterectomy was done and to no avail..the pain at the top of vagina was still there fact worse.
    The wonderful surgeon who did vaginal hysterectomy put me under G. A some weeks/months later for cystoscopy and showed a picture of a very angry bladder. His diagnosis was IC.
    I haven't followed any diet requirement neither do I have symptoms of urgency,frequency etc....but when all my problems started three years ago I was complaining of this lump inside the body and at the back of the clitoris.
    I was embarrased to talk about this personal issue as it borderd on a permenate sexual arousal. It must have been at that stage where the pain in the bladder and frequency drove me mad.
    My registered gp told me he was concerned at how many times I turned up at the surgery and I walked away in tears.
    Once the lump shifted it must have taken pressure from the bladder. However the pain with this lump dropping and causing a furnace heat in a very sore vagina is still unable to be seen or felt but then all of this is done lying down and it is on a pain scale of never under 7 and that's the best day ,only laying down helps so it must retract!!.
    It was a couple of months ago I jumped for joy when a letter came through from a gynie urologist and I had not seen one despite everything.
    At the consultation I had everything written as well as diagrams od human body where pain was...but guess what? he wasn't interested in any of that ..wouldn't even listen. His involvement was to find out why there was always blood in the urine. He knew nothing of this bigger problem neither did he know I had suffered twelve infections in 3 yrs and had never had one before.
    It has been suggested the "lump" could be a pudendal nerve problem and that fits in with my back and the fall I had....but what if it's not...sometimes I am convinced it is a prolapse of the bladder as sometimes the urine seemingly dribbles across something in the middle..a better way to explain is's like putting your finger under a running tap and the water still comes but with effort over two sides of the finger.
    So my biggest biggest fear is that some instrument may be inserted for the cystoscopy and perforate the bladder, and sometimes it happens after a b m, so could be part of the bowel ..I am really scared at having this cystoscopy in case something goes wrong with bowel or bladder being invaded. sorry this is long but I need some words od comfort or tell me not to go ahead or something ....I really need help as I am having nightmares about this...thank you for listening
    Last edited by ICNDonna; 02-27-2011, 01:49 AM. Reason: spelling corrections

  • #2
    Have you been checked to see if you have a cystocele? When I had one, if I stood up and viewed the area with a mirror, I could actually see the protrusion. Doctors sometimes miss these because they sometimes can't be felt when you're on your back on an exam table.

    The cysto should be okay --- and can be a very important exam.

    Stay safe

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    I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.

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    • #3
      Hello Donna
      it is indded an honour to hear from you I thank you for your time,
      I have read many of your post replies and amazed at your knowledge truly...I have been tested for cystocele and during vaginal hysterectomy I had rectocele repair, It is always considered that even with a cystocele would not explain level of pain I'm in despite pain control, I'm going out of my mind with pain and now with the worry of another cystoscopy. thanks for your answer
      love from Madi


      • #4
        need advice

        Hi Madi,
        I agree with Donna.
        I too have a cystocele and it feels just like a big lump in my vagina, and, it feels worse when I stand than when I am lying down. Also feels worse right before or after a BM. I did have a cysto/hydro, to DX the IC and it didn't seem to bother the cystocele at all.


        • #5
          thank you laurie, did your cystocele give pain really bad burning pain? also did gravity caUSE IT to drop? and when they do cystoscopy they insert a tube I think so how can that not penetrate the prolapse? I've had so many gynies say it isn't but they can't tell me what it is I'm so confused about this
          love madi