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Living with extremely large hernia

Posted , 44 users are following.

sharon28194
sharon28194

Hi,I had a c section 4 yrs ago which has left me with an extremely large ventral hernia,I also suffer with asthma and severe anxiety. I've left it for this amount of time as it's up to now only given me back ache and was worried about my daughters care while I was getting better,now I've been told that the ct said it contains all my intestines which makes it high risk of complications ,problem is now it's really starting to cause me pain I don't want to leave my daughter with out a mum but don't want this for the rest of my life,I'm 46 yrs old and my hernia is the size of 2 large melons ,please any advice would be appreciated x

3 likes, 95 replies

95 Replies

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  • lesley118
    lesley118 sharon28194

    Posted

    Hi Sharon, this sounds horrendous!!. I have a sliding Hieitas Hernia and it makes my life a misery. They never really explain anything to you and just throw drugs your way and hope that they work. I get constant pain under my ribs and round my back, and my stomach bloats so badly i look pregnant. If there is something that can be done then do it?. You cant live like this!!. I'm 44 and a mum of 3 girls, it worries me sick everyday that it's something worse than just a hernia, it stops me from going out or being social. And they have said there is nothing more they can do for me!!!. Have they offered you anything?
    • Teri1027
      Teri1027 lesley118

      Posted

      OMG...i have the same thing, same feelings to, not sure which my hernia is, just found out last week. but i'm a mom of 4, 42 years old. and my stomach looks like i'm 5 months pregnant, it pushes against my ribs and hurts around my back also. i gained 20 pounds in 2 months, and i never gain weight, i thought it was b/c i started a birth control pill, but i stopped it and now  i seem worse. i find out soon what came back on my cat scan and blood work and more about the endoscopy last week. i don't wann live like this,, i look disgusting. 
  • mfigueredo
    mfigueredo sharon28194

    Posted

    Sharon, I know that the type of hernia I had is different from yours (hiatal hernia (part of my stomach was up inside my esophagus causing burning acid reflux all the way up my esophagus and into my throat). I am 31 years old and am pretty health otherwise. My doctors kept trying to keep me on medication for the longest time (that's how they and pharmaceutical companies make money). They told me that surgery is a last resort - that I do believe. I tried every medication, I tried eliminating almost everything from my diet and still nothing helped me. I HAD to have surgery, and I am glad I did. So far I am one week past the surgery and no big changes - still seeing the reflux but will be seeing my doctor for a followup in two days. Get the surgery!! Mine is risky too as it is close to a lot of important arteries and is in a difficult area to reach. I lived in pain for 3 years - it was NO LIFE at all. The least you can do for yourself is try to see if you can fix this issue. Please check out my blog for the whole story http://my-hiatal-hernia-repair.blogspot.com/ and good luck!
    • Teri1027
      Teri1027 mfigueredo

      Posted

      i just read some of your blog, that's scary. and you're so thin, if you saw my stomach youd think i was pregnant. it's ridiculous. how are you now?
    • barbara01
      barbara01 mfigueredo

      Posted

      Hi Mfigueredo....I have been on the couch for a year and a half now.  I have been to 9 doctors and they all say to stay on the couch or they said "Live with it!"  I need to go back to work.  I have to get better.  Today, my best friend found a web site with a picture of a girl with a large football on her chest!  THAT IS ME!!  I cannot eat anything unless I lay down for a few hours or I am in extreme pain.  None of my doctors have given me a diagnosis but I know I have a hiatal hernia.  What is the treatment for this and how can I convince my GI doctor that I have it?
  • sharon28194
    sharon28194

    Posted

    Thank you both so much for your replies smile the first consultant I saw advices me to leave the hernia well alone but I got so upset because I feel like a freak that he made an appointment for me to see another consultant,the second consultant wants to operate but said it's very very risky,which worries me so much,my anxiety is caused by the hernia and this has triggered eating phobias and medication phobia,my eating is improving but I won't even touch a paracetamol! Which isn't very helpful when it comes to pain relief 
  • sharon28194
    sharon28194

    Posted

    Mfigueredo your so brave ,what is preventing your surgery lesley118?
    • lesley118
      lesley118 sharon28194

      Posted

      They won't operate, they don't seem to care or listen!!!. It will and is gradually getting worse and I'll end up at A and E!!!. It's the only way these days!!. I agree with the advice you have been given on here, looking at your picture, you really can't live like that. Look up the best surgeon in your area and put your foot down, they can't refuse you xx
  • sharon28194
    sharon28194

    Posted

    This is a photo of it I'm skinny apart from this, it's making me so depressed just don't know what to do anymore x
    • mfigueredo
      mfigueredo sharon28194

      Posted

      Sharon, I am so sorry that you are having to deal with this discomfort, and with the stress of trying to make a decision on what to do. If the doctor you are seeing isnt giving you the answers you want, find someone else! You need to be with a doctor who has your well being in their best interests. These doctors have to know that this is no life for you. I understand that it is scary and dangerous - but is it worth the stress and pain of every day that you have to go through? Please get a second opinion from another doctor. I live in the U.S. so I go to websites like HealthGrades.com and check out reviews for Gastroenterologists.

       

    • Guest
      Guest sharon28194

      Posted

      I think you are being treated appallingly by being left like that, your Doctor / s should be ashamed of themselves neutral
    • barbara19819
      barbara19819 sharon28194

      Posted

      Dear Sharon - I look very similar to your condition...I went for a CatScab and was told by the hernia surgeon that I had to live with it - go and get a couple of abdominal wraps...if they were to operate the intestines have spread so that in putting the skin back together would mean pushing all the intestines up and not allowing me to breathe so I would more than likely wind up on a ventilator the rest of my life........HOWEVER...I was consulting others and told about some really good hernia repair doctors in NYC...there are a couple in particular that will accept cases that other mds' will not.  If you first get a bypass and have to wait about six months - ther hernia can get repaired if the intestines shrink; which they usually do - OR - some intestines can be modified (it's done every day) -cut down and the room can be made.  I'm going for a second and third opinion.  Don't accept the first one...find a good bariatric surgeon who also does hernias.  Let me know how you do!  Best of luck....Barbara J.

    • paula61141
      paula61141 barbara19819

      Posted

      Dear Barbara, Please let us know what happens, your news about finding a Doctor that takes patients no other doctors want is news that gives us hope. I was told my 7 hernias were repairable but that there was nothing he could do to them to keep me from looking 9 months pregnant for the rest of my life. .please keep us informed.
  • sharon28194
    sharon28194

    Posted

    Thanks mfigueredo ,I think I may go and get another opinion as I'm really not comfortable with what the consultant told me,I'm in the uk and even though the nhs is free the doctors are far from helpful ,I'm so pleased for you that your agony is over with n I wish you a quick recovery x
  • Loretta50
    Loretta50 sharon28194

    Posted

    My hernia is a little different, mine is near my breast bone in the chest area and causes me discomfort due to my Gerd...which is the next phase for acid reflux disease. I'm not sure that I can assist you with your dilemna. As far as the anxiety, I was recently put on paxil and I haven't been on it long enough to see the affects yet. Some people say it takes about a month, and I have only been taking it a week. I hope some of the others can assist you wth your situation.
    • lesley118
      lesley118 Loretta50

      Posted

      Do you have constant pain with your hernia Loretta?. Mine sounds the same as yours and I also have GERD!. On a bad day my whole diaphragm bloats out and I feel like acid is attacking all my mussels!!. Terrible bloating too, I look pregnant!!!
    • Loretta50
      Loretta50 lesley118

      Posted

      Certain foods I eat really irritate my gerd. Chocolate, mint, milk, red sauces, and spicy foods. I have given those things up as well as carbonated soda. I have constant pain in my sterum area of my chest. Sometimes the pain is sharp. I am currently on Omeraprozale and a protonix pump inhibitor mine is so bad. I have realized I am getting older and changes are going to develop and I just have to adapt as well as possible to the situation and try and enjoy the rest of my life. I wish you luck.
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