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Endometriosis UK
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Adhesions - what type of pain?

Can you please describe the type of pain you get with adhesions?

I had adhesions notes and removed during a lap but my main pain is vaginal so I gather the adhesions aren’t really relevant?

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Pain is so different to where the adhesions are. The pain I have starts with bloated and physically you can see the whole abdomen extend by at about six inches almost as if I was pregnant, then I feel that if I opened my bowels it may clear but pain then becomes like a burning pain almost as if it is cystitis and but does not go away with plenty of fluids and then throbbing pain in the tummy and start to feel sick and vomit and cannot go tot he toilet. This is when I panic and take Senna but I now find that it makes it worse because I feel as if my whole tummy is going to come out of my bottom. Sore to touch and almost as if my whole body is inflamed. This extends all the way to my heals and find I cannot sleep, sit down, or lie down , so I walk around without any sleep for days, the only pain killer that helps is predisnolene and tramadol and I stop eating and stay on sugary fluids, my weight goes up , but I do not care because I am in so much discomfort. I have npw learn to recognise the symptoms so usually will take predisnolene and tramadol and then go for CT scan usually private. I find I difficult to get the doctors to accept the symptoms that it is a sub acute bowel obstruction until I have had a ct scan to show it, and true enough it always shows a dilated area in the bowel and a narrowing. I do not blame the doctors because my adhesions are usually where the bowel surgery was. They symptoms of burning, usually the Dr will say is urine infection so I go through weeks of trial and error. The magnesium Glycinate has most definetly made the stools softer and easier. Sorry for the answer being so long, it takes along time to find a Dr that understands the symptoms as most Dr want text book symptoms and the symptoms are so difficult to describe. This time my symptoms worsened 14 weeks ago, and now find that the obstruction may have also caused a cytocele which is possibly causing the burning at the bottom. So the colorectal surgeon offered surgery for the adhesions but with additional symptoms I am now going to have a colonscopy and be seen by gynae for the cystocele. It does not get easier but from my own experience our bodies feel pain when something needs to be looked at otherwise I am sure I do not want to be fat , I want to live a healthy complete life. This stops me from walking which is my main exercise, stops me doing breathing exercises because each inhale increases pain and stops me from watching TV or reading as I cannot concentrate with the constant pain and stabbing burning symptoms almost like a knife twisting and turning in my pelvis. The only thing that keeps me going is that I am still self motivated so each minute I am comfortable I work hard and find ways to keep my mind as active as possible.

I do hope you will get relief soon, problem shared is problem halved but do seek medical advice we are all unique and remember as my hubby says to cheer me up that you are still a special person and there is always that one special Dr that will get to the bottom of your pain.

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X indy I.m exactly the same!! I.m so depressed over it! I've had an ostomy for 7 years although I hate it is thought it would be the end of all my pain& suffering sadly my bowels are totally ruined!! I dread it every time I need a poo😢 they say it's a combination of radiation damage & 2 other major surgery.so I've had! Burn like he'll from pelvis bowel AND vaginas. I.m at my wits end😢😢

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Dear missymo, I know how hard it is and it seems to be never ending, I do think you need to search for a really good general surgeon as they usually will understand the pain the adhesions can cause. I used to and still do get very depressed as my head wants to carry on as normal and my body wants to shut down. But please remember that once adhesions are removed you will notice the difference, It was purely by chance that my adhesions were discovered when I went into hospital with a bowel obstruction. I then paid privately to see a gynae who told me to see a colorectal surgeon and I have not looked back as once he had done the ct scan again private he was then able to remove the adhesions and you know I could not believe the difference for over 18 months I could go anywhere, eat and drink anything and if I had not had another bowel obstruction I would have thought I was cured forever. But our bodies are such that if your body makes adhesions it will carry on trying to heal itself from infections and surgery. The only way I get through some days is to resign myself to the fact that soon there may be some stem cells therapy that will help to allow our intestines to fully recover. Please try and get pain relief from your GP if you are in UK and once the pain has subsided you will be able to thin clearly and then look at the triggers, i.e. did you lift something, and feel something or push large furniture and suddenly feel it in your abdomen. My recent episode started with moving a three seater sofa by just a foot to vacuum and immediately I felt like a stretch in the right side of my tummy just under the belly button. I backed off put the vacuum down and by the time I sat down I had that bloating instantly and the burning came back. I immediately took tramadol and predisnolene. So sometimes I have blamed all this on what I have eaten and paid lots of money for herbal treatments but now I know that until the adhesions are removed again I will suffer and then of course apart from t he cost the risk of surgery losing blood during the surgery and the long process of recovery mean I will lose the best part of a year of my life. But if it gives me 5 years of pain free living I will be happy.

In other words I know it is awful but do go and see a GP, get pain relief and be referred to a consultant or ask GP if he can organise a CT scan to see if it is adhesions then you are better informed to see why you have this awful pain. I really feel for you. Call me paranoid but there must be some form of pain relief even if it is a nerve block.

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Thanks x indy. You have to be in it to know how bad it is don't you??😢😢 I. My going to pull out the stops& fight to get this sorted out. Xx keep well.x

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Well done , you will get better and you will get there, all be it is slow but evenutually we have to thin there will at least be pain free, especially as on the surface we have to smile and get through the day and night and we look so well for others but inside we are in a lot of pain, my consul said he could see I was drained with pain , but to an untrained eye it is jus a bit of a bad day. Keep smiling.

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Sorry forgot to mention you may also feel pulling and tugging in your abdomen or pelvis with the adhesions, although that is not painful it can be like a stabbing pain that goes when you move. I usually feel that when I go up the stairs, or if I suddenly turn to the right

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