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severe abdominal and back pain 20 years after hysterectomy-adhesions? severe abdominal and back pain 20 years after hysterectomy-adhesions?

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  #1  
Unread 12-13-2007, 01:24 PM
severe abdominal and back pain 20 years after hysterectomy-adhesions?

Hi, I'm new here and joined in desperation.
I had a total hysterectomy with ovaries removed almost 20 years ago. For 19 years I've suffered with what our local quack insists on diagnosing as IBS but it isn't. For the past 4 years I have been bedbound for 9 months and ended up in a wheelchair with agonizing back pain and constant diarrhea. Every morning I have to go instantly and every time I faint from the pain. I can go up to 10 times in 4 hours leaving me with terrible abdominal and back pain all day. I have no life because I never know when it will hit so bad. Some days I just manage to potter about the house; others I can't move at all.
A gynae has finally suggested adhesions from the hysterectony; a sigmoidoscopy suggests tethered bowel but the local UK surgeons are terrified even to mention the word adhesions. they are still using saline here to avoid them and have never heard of the up to date adhesion barriers.
I have insisted on an appointment next week with a surgeon elsewhere who comes highly recommended for adhesions but I'm terrified. I didn't have endo but I'm certain that I do have adhesions and tethered bowel and nerves. I'm fully aware of teh risks of adhesion surgery but I simply can't carry on living like this. It's not living at all.
I don't have a single Christmas decoration up nor any presents bought , even for my son because I've simply been in too much pain to leave the house. My GP won't even bother to visit me when it's bad because he hasn't a clue what to do. I'm taking oxycodone every 3 hours but it doesn't even touch the pain. The only benefit is that sometimes it makes me constipated so I can't go; so I don't get that much pain.
I'm in tears typing this after 4 years of it and I can't stand it any more. Can anyone please help?
Has anyone had adhesiolysis that has worked?
  #2  
Unread 12-13-2007, 02:17 PM
severe abdominal and back pain 20 years after hysterectomy-adhesions?

I am so sorry you are dealing with so much pain!

Severe adhesions can be removed and can decrease pain. But adhesion surgery can allow for more adhesions so we do have to be careful when making the decision to have a surgery to look for and remove suspected adhesions. We do have several Adhesion Resources you can read through. The more you know the better able you are to make the right decisions for you. And the more knowlegeable you are, the better questions you can ask of your doctor.

Have any of your doctors been a gastroenterologist? IBS can cause horrendous pain and if you have IBS and adhsions involving the bowels, you could be having horrific pain with any bowel movements. A gastroenterologist may be able to help you forumlate a diet that is as gentle as possible on your system to help minimize the pain you are experiencing. Constant diarrhea can also be contributing to a decrease in your health.

I have a gastroenterologist as part of my medical team and working with her has helped with some of the pain. I am currently scheduled for laparoscopic surgery in January and will be having lysis of adhesions done during the surgery. Obviously I am hoping it works! I have tried to find a meticulous careful surgeon to do this surgery as the skill of the surgeon can make a huge difference.

I do hope your upcoming appointment is successful! I would suggest taking a list of all your questions and concerns, all medications you have tried successfully and unsuccessfully, results from any and all tests that have been done, and also take a journal detailing your pain and how it is affecting your life. (You might find ReliefInsite’s online pain diary helpful.)

Also, has any of your doctors suggested a medication that targets nerve pain? For pain involving nerves I have been given a different pain medication from what I normally use to treat pain.

Sending lots of S and best wishes your way!
  #3  
Unread 12-14-2007, 07:23 AM
severe abdominal and back pain 20 years after hysterectomy-adhesions?

Thank you very much for your kind words. Yes I have seen a gastroenterologist in the past but not in the last 4 years. I used to get bowel urgency on a morning when my son was small. He's now 20 but I haven't had that problem for years. I discovered that I must stay on a low fibre diet. However 4 years ago I developed horrendous spinal pain. Numerous neuro surgeons thought I had the T12 nerve trapped but couldn't find where. I was given gabapentin for the nerve pain and almost committed suicide on it. It was terrible. I spent 9 months bedridden. I've had every scan you can imagine but no treatment other than alternative therapies. Various doctors have suggested adhesions post hysterectomy, C section and laparoscopy. I had a huge ovarian cyst which necessitated the hysterectomy. I took HRT for 10 years but have been off it now for 10 years. I couldn't tell whether the spinal pain was coming from a nerve trapped in the abdomen. The only thing that usually eases the pain is oxycodone. Pregabalin does nothing at all. I tracked down a surgeon experienced in adhesion surgery but my GP would not send me to him until now. From last Christmas I have been fainting every time I have a BM which thanks to the constipation from the oxycodone is only once a week but I can never tell when. |Whenever the bowel works on its own, the pain is unbearable and rips up my spine- never in my abdomen. I do wonder if everything has dropped. I have a mild bladder prolapse that they won't treat and a tiny urethral prolapse. The nerves to my bladder wall were cut when I had the hysterectomy so I have to use abdominal muscles to squeeze to empty the bladder which must be pulling on adhesions and other organs. If my bowel is full I cannot pass water. It feels as if, when I lie down, something ****s off the bowel or paralyzes it then when I wake up , the very second that I move, it just goes crazy and everything falls out.
I have done lots of research on adhesions and wouldn't let my local hospital near me. Getting any treatment in the UK is a nightmare and takes many months but I can't stand this any longer. I had a really bad bout yesterday and today I still have horrific pain in my back.
  #4  
Unread 12-14-2007, 12:58 PM
greatgray

Hi,
I am so sorry to hear of the chrinic pain you are in, I live in Ireland and I know how hard it is to get help when things don,t go according to the book, I will throw a few question to you, have you tried getting the nerves blocked, or a tens machine for the back pain, I went to see a PT here 2 months ago and she told me that I need to get the ilioinguinal and genitofemoral nerves blocked, As I was left in a bad way also by our health system and they are not interested in helping as it would mean them saying that they did something wrong, they left a piece of cottonwool inside me, and it was there for 4 weeks and it did a lot of damage, so I know what it is like to have chronic pain 24/7.
What other medication have you been on, I take DF118s, which give me a headache and then I take solpadeine for that, I have tried lots of other types over the years, but nothing works, I have the pain in my lower right hand side, my back and have dreadful scaring underneath, so I find it very hard to sit, mind blowing pain.
Besides cutting the nerve in your bladder, did anything else go wrong, had you any big infection,? it does not seem right that you are left like that, and for so long, it is 6 and half years for me, and I have felt every day of it, Like you I don,t think I will find any help here in Ireland, or no one I know of or would trust, I would have to go out of the county I live in or go over to England, I had a big repair job done over there,
As for the bowel thing, you must be worn out with it,when your bowels are giving trouble they drain the energy from you, It is a long time to leave you like that, I am so sorry to hear your story, and although I am in constant pain myself I hate to hear of anyone else in it too, as I know how it takes over your life, your time is spent just trying to get through each day.
I hope the new Dr you are going to see can offer you some help, after this long you deserve it, It is not a lot to ask for , is it, I wish you well,
and look after yourself,
Dolo1
  #5  
Unread 12-22-2007, 10:20 AM
severe abdominal and back pain 20 years after hysterectomy-adhesions?

I tried to get an appointment with an adhesion surgeon recommended by UKAS (UK adhesion society) but he'd retired from teh NHS. he did recommend a colleague and I saw him last week but I was mortified when he said that adhesions cannot trap nerves. He did agree that they can be agonisingly painful though and has asked for an abdominal CT scan ASAP. I think I'd be happy for him to operate if it comes to that but never anyone here in my home town.
Wishing a Happ Christmas to everyone in the hope you can all remain pain free over the holidays.
  #6  
Unread 12-27-2007, 07:20 AM
greatgray

Hi greatgray,
I am glad you went to the Dr and I hope you get your appointment for the CT scan very soon, maybe you will at last get some answers? at the end of the day you have to trust some Dr to care enough to help you,
I got a TENS machine last week and it actually makes the pain a little less, have you tried one? I am also going out of my County to have a nerve block done, I was talking to the Pelvic Floor Theripist this morning and she said it works for 80% of people, Thats another thing you could look into, as for your bowels, do you take something to stop you going so much, I remember my Family Dr telling me to stick to a low fiber diet, and no vegetables that grow above the ground,
I really hope you get some hope when you see the Dr after you have your scan,
Let me know how you get on,
Look after yourself,
Dolo1
Dolores
  #7  
Unread 01-02-2008, 03:28 AM
severe abdominal and back pain 20 years after hysterectomy-adhesions?

Thanks for yoru reply. I used a TENS machine for many years for fibromyalgia but had to stop because it irritates this nerve that's trapped and makes it far worse. I'm still waiting for the appointmant for teh CT scan (as I am for an emergency gynae appointment that was supposed to be done within 2 weeks of Dec 4th).
As to the bowels, I can't take anything to slow it down because the opiate pain medication I take causes constipation and I can't afford to make that any worse. But even with that I still get these uncontrollable bouts of spending 4 or 5 hours in agony in the bathroom. I do eat low fibre. It's a bad thing when you have to try to stay deliberately constipated in order to have any quality of life!
Still waiting- everything stops here over Christmas and New Year.
  #8  
Unread 01-02-2008, 08:12 PM
severe abdominal and back pain 20 years after hysterectomy-adhesions?

Greatfrey,
I am sorry you are going through this. I would suggest when you see your specialist again, discuss the issues/findings you had with the neurosurgeon and the medications. While adhesions do not trap nerves, you may actually be dealing with more than one problem. When I read you first message, the first thing I thought of was spine/neurology type problems. It is certainly worth talking to him. There are other medications that are available and other treatments. Good Luck.....my thoughts are with you.
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