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Mammary Duct Ectasia

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Mrs_Joan_M_Williams
Mrs_Joan_M_Williams

I have suffered from this condition for a number of years since the menopause and I am a 55 year old non smoker. My GP has been most helpful to me and referred me to local breast specialists but they seem very loath to do the operation Hadfields procedure as there is a possibility that not all of the diseased ducts will be removed at the time of the operation and the duct ectasia could return, and there is always the possibility of me loosing my nipples. At the moment I am taking antibiotics Doxycycline daily and pain killers dihydrocodeine paracetamol and diclofenic. Is there anybody out there who could recommend a good surgeon who is very au fait with this operation.

I realise this is a big operation but the way I feel today I could cut my own breasts off myself the pain is dragging me down and I am so frightened of anybody barging accidently into my chest, this can be a problem when my 13 month grandson is around. Also the problem is recurring to often. Can anybody help me or advise me. I would be so grateful.

0 likes, 3 replies

3 Replies

  • fiona16666
    fiona16666 Mrs_Joan_M_Williams

    Posted

    Hi there, I know its been some time since you posted and possibly you have managed to resolve the problems you have had but I wanted to let you know about my personal experience with this condition.

    I also live in the UK.

    I was first diagnosed with mammary duct ectasia back in 2004 following the birth of my youngest child, I was 33 and I would not advise anyone to consider surgery unless it really is your last resort.

    I had one milk duct removed and it was the worst decision I could have ever made. I was never given the option of antibiotics, only surgery.

    The surgery to remove the duct they felt was the problem over stimulated the other ducts and I ended up with a massive cavity in my breast which was being packed daily with 30cm of ribbon gauze for twelve weeks because it wouldn't heal. After multiple proceedures and its not any exaggeration to say it was over 10 in twelve months, I ended up with removal of all the milk ducts and nipple. Nothing prepared me for that.

    I was promised reconstruction but because of the state of the fatty tissue that remained, this has been extremely complex and complicated.

    I have had a tissue expander which was inflated every couple of weeks, a very uncomfortable proceedure, a breast implant. Ive had to have the implant removed because of the scar tissue and all the internal scar tissue excised. I have had nipple reconstruction and tattooing but in comparison to having your own nipple, this is far from satisfactory.

    My last hope is a bilateral mastopexy which I am hoping to have soon, just to try to give some symmetry.

    The whole saga has been going on for ten years and I have had surgery every year apart from last year

    Please consider all your options before embarking on surgery, I definitely would never have agreed if I had known what could happen

    • Quandryite
      Quandryite fiona16666

      Posted

      This is a horror story. (Don't need to tell you).  I pray that it was worth it to have more done, for symmetry.  More than a horror story, it sounds like one of the very real times where a lawsuit is in order, not for the money, (although some money for respite sure seems to be in order), to prevent further experiments like this on women.   I wonder how they made the decision to do it.   It does sound like first degree malpractice.
  • Quandryite
    Quandryite Mrs_Joan_M_Williams

    Posted

    I well understand your feeling like you want to cut off your breasts - although, doubtless, that would cause other problems.  I have, in addition to this chronic condition in my left breast,  heart disease, and costochondritis.  I've spent most all of today wondering:  breast?  heart? (I know it's not the costochondritis this time).  Then, who to see?  There really needs to be a medical speciality for women, and it isn't ob-gyn.  I've only found one ob-gyn who wasn't baby-centric.

    If you went through with the operation, I hope it helped you, but there is no way I'd submit to it.  If there was any doubt, after reading fiona16666's report...

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