Endrometriosis

Hi all I have stage four endrometriosis and a stuck bowel, fibroids, three level disc disease, which now I'm disabled. I went to see my gyno again after 2 years off injections to stop my pain which it has done and no periods, but now I cannot have anymore due to the injection making my bones weak. So now have been put on waiting list for full hysterectomy removal off ovaries and womb. But my biggest issue is my bowel being stuck to my womb, I have been told there's a chance I could end up with a bag, which scares me to death. I told my gyno I was scared and he said he was too which hasn't helped me, but I won't no till I come around from surgery if I have one or not, I'm 39 can't have children, and have three level disc disease so now am disabled, which his concerns are me lying on the table for such along time in surgery that I will suffer even more with my back, I'm already on 140mg of morphine a day and on 1200mg of gabapentin too, I don't no what to do go through with it or been in agony again without the injection, which I no I couldn't cope with as it makes my back in more pain. My husband says don't do it but I no he's scared but I don't want to live in agony anymore with this as well as my back, but I'm so terrified of this damn bag, Anyone had this done or have any advise for me please many thanks, it's going to be around April 2013 pre assessment in January. Why do us women have to go through so much in life and our men get nought.

6 Replies

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  • Hi,

    I have not experienced being told that I could potentially need a colostomy so I will not pretend to understand how scared you are but I really felt for you reading this.

    I looked online to find some support that may be useful to you

    ostomylifestyle.org/

    This is a website all about living well with a stoma bag and there is a helpline manned by people who have had the surgery on this page ostomylifestyle.org/content...

    I hope this is useful to you and I hope you won't need to have one.. but if you do I hope the info and support of that specialised charity will help you feel less scared and alone.

    Crystal

    xx

  • Omg thank you so very much, I will look into this, but hopefully won't come to this. But am so grateful for your help it means a lot to get support, many thanks again natalie

  • Hi Natalie,

    My bowel is stuck also I had an operation and was told there was an 87% chance id have a stoma bag, like you I wouldn't know until after the operation, they managed to remove part of my bowel and it was a good join so I didn't need to have a stoma.

  • Wow that's excellent news god I bet you were scared I no i am, but hearing that from you has been wonderful thank you so very much for your kinds words, lets pray I get away with it too, I hope your now ok. Thanks again Natalie

  • Hi THANKYOU for your reply, wow I'm really sorry your going through this too, it's awful, I don't no when I could speak to him again before it happens, as I have spoke to him about it, and he's already told me there's a slight chance of me having a bag, I don't think I can put a stop to it as its my womb he's taking away and my ovaries, if I said stop it would mean the hysterectomy wouldn't go ahead, which I have to have done as I have stage four endrometiosis, if I can speak to someone before then yes I will say to them about stopping if it gets that bad, but to be honest I don't think I have much choice as I said its stuck to my womb and that's what there taking away, but THANKYOU for your advice, he told me it would be reversible too so I think he knows it will most prob come to that. I'm sorry your in pain but my problem with pain was more my endrometriosis than my bowels. Thanks again and I hope one day you won't be in so much pain.natalie

  • Hi Natalie, I am a year older than you and have already had 2 surgeries (2002 and 2011). I was lucky I was put on depoprovera injections for 3 years so managed to have a baby in 2007. However in 2010 the pain was unbearable and I had a surgery in 2011. They removed the cysts but they did not touch the rest. Similarly to you I had the endometriosis between the bowels and apparently it was massive. I asked my consultant to remove it but he said I could end up with a bag and I was horrified and did not agree. I did not do anything and now I have an 8 cm cysts which has to be removed early next year.

    I am also in agony because of the pain.

    However, I found out from my sister (who suffers from endometriosis, too) there are pills available in Austria, Germany, dennmark, finnland, France, portugal, sweden, Italy, hungary, poland and Norway which stop the pain and decreases endometriosis. They are called Visanne/ Visannette or Visabelle. I do not know if they are available in UK. But i know they work. My sister's cysts decreased from 4cm to 1cm after 3 months and she does not need further surgery for the time being. I am starting my first pill today.

    My husband is a GP and i have asked him toche k if they are available in UK. I have gotine from my sister. Hope it helps. Xxxt

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