Living With Adhesions - Support Group

[JohFlow]

Anyone out there living with internal adhesions post - surgery?

I have had extensive adhesions for three years following surgery and later 'keyhole' adhesion seperation. Adhesions seem to be almost a 'hidden' disease despite being so common. There are few avenues to follow for long-term and effective pain relief/remedy. We may look 'normal' on the outside; yet experience extra challenges on a daily basis.

Please share your stories or views on the subject. Hopefully we can support each other.

[chocoluvva]

Have you heard of massage to break down scar tissue?

I'm sorry I can't remember the name of the technique to link.

I briefly looked into this after a couple of admissions for post-surgical complications as a result of abdominal adhesions. Mine must be very slight though as I now only get occasional slight bother.

[JohFlow]

Thanks for that Chocoluvva (nice name!). Yes; I agree that massage may help loosen more static adhesions in some cases (I am also a qualified holistic therapist). It is more useful on adhesions which are relatively new (as these tend to be more elastic and also those that are close to the skin surface/within reach to manipulate. Deeper adhesions seem to be less responsive I'm afraid. A good therapist can advise and give an idea of chances of success. Response seems to be very individual.

There is also another side to the massage thing - in that it helps the body to relax. This is turn can help with pain related to stress (a common symptom of abdominal adhesions like ours).

How do you deal with the 'ocassional slight bother' that you have with your adhesions now?

[chocoluvva]

I stay as upright as possible for as long as possible, have nothing to eat or drink concentrate on trying to relax then take some strong soluble codeine and go to bed.

[JohFlow]

Sounds like you have found some coping strategies for your type of pain Chocoluvva. Not easy though is it?

I have two types of pain - a low, dull pain that is there constantly (heavy and griping) and then a sharp, stabbing kind which stops me in my tracks. Unfortunately we have not found a painkiller than can reduce pain enough for me to return to a good quality of life. Tried Gabapentin, Lyrica and other nerve/pain blockers.

The next stage for me is a pain management clinic. Do you have experience of this?

I did ask at a local hospital about the break- up of adhesions by radiowave. Radio pulses are put through the body in the hope of loosening scar tissue. I was told that it could be tried experimentally and it is not usually used on adhesions specifically. There is a possibility that it could help but no guarantees. As it would be a private procedure (and I'm financially broke) decided to pass this time.

How have you found reactions of doctors/consultants to your pain?

[chocoluvva]

It hasn't been severe very often so not really an issue. I was admitted to hospital as it was causing a partial obstruction.

I'm sorry, I'm not really a suitable person for you to talk to. I've had a a few abdominal issues: food intolerances, IBS, but more significantly a load of treatment (involving surgery obviously) for bowel cancer which complicates matters.

Are there any online forums?

I really sympathise with you. Chronic health conditions are depressing.

[JohFlow]

Well my adhesions are wrapped around my bowel, I'm milk intolerant and have IBS so there are some similarities. I have been warned that I may have to return to hospital for bowel surgery in the future.

I've very sorry to hear about the bowel cancer. It's difficult to know what to say in the absence of information about your situation. I hope that the surgeries (in some way) have helped with your condition and that you are on the road to recovery. As you suggested; sometimes recovery accelerates and sometimes things are more tedious. I hope that you have good support eitherway.

I will leave it with you if you want to continue on this forum. We do not need to be totally similar to support each other. But if you decide to move on; it's been lovely chatting with you and you can come and find me anytime in the future. All the best eitherway x

[chocoluvva]

Thank you JohFlow - I think my adhesions are nothing like as bad as yours. I had the first sudden onset of extreme pain and sickness two months after the surgery and one other less extreme bout of the same eight months after, but since then only much less severe pain which feels the same but has always resolved quickly without intervention so I'm very hopeful that I won't have more episodes of it.

I really sympathise - it's so disappointing when you're in the minority of patients who have complications. I have so many food intolerances you wouldn't believe it - it makes even having a healthy balanced diet more or less impossible. Worryingly, I seem to be becoming intolerant to more and more things....

What are your symptoms.

[JohFlow]

Yes it is disappointing that you are in the minority of patients. I have been fortunate enough to be seen a top gynae. expert in London and he describes my complications as 'the highest end of unlucky'. He went on to tell me that I would not work again until the pain is moderated (I refuse to believe that one!).

My adhesions developed after gynaecological surgery for ovarian cysts. After over half of my fertility equipment was removed and the remaining space became occupied with the adhesions. My organs were totally knotted up/together with them. My keyhole procedure was able to remove some of the adhesions but not the rigid ones around my bowel. I was told to remove them all completely; I would have to be fitted with a colostomy bag.

My symptoms are a mix of bowel, ovarian and adhesive pain. Dull, heavy aches (like strong period pain) constantly and then sharper, stabbing pains intermittently. Because my gynae. and bowel are located closely in the abdomen; problems with one seems to set off the other. I too get nausea with the pain and slow bowel transit. I also get very tired and hot flushes on bad days.

My intolerance is to milk - nothing major but it does set off IBS. I get headaches, nausea/vomiting, become very bloated and toileting is difficult. I think dairy is a fairly easy one to find food substitutes for.

Are you in contact with a dietition/consultant about your increasing intolerances?

[yamsareyammy]

I am confused by this thread, and probably not much help.
I actually think adhesions are rare. I have never met or heard of a rl person with them.

I am confused because, it was eventually discovered my pains were from adhesions. The pain started about 10 years after appendix surgery. I had the pains for about 4 or 5 years before it was sorted out what I had.
I then had an operation which removed the adhesions [of which I had many according to the surgeon].
But extremely luckily for ne, that has sort of been the end of the matter.

Except that when I had a knee injury I was told at the time I could have adhesions inside again. Which doesnt appear to have been the case, or maybe, not the case yet enough to give me pain.

[orangeflutie]

Hi I'm watching this thread with interest as I've been experiencing pain in my left and right hip, lower back and sometimes down my left leg.

I've had three laparoscopies over the last three years to remove ovarian cysts, endometriosis and my left ovary. I'm currently in the process of being referred for physio and back to gynae.

It's possible the pain I'm getting now is from adhesions. I find it often gets worse after meals or after but not during running.

I'm due to go for an ultrasound next week but am aware if the pain is from more endo or adhesions, the scan won't reveal anything. The only way to find out it would seem is to have another laparoscopy which will cause new adhesions to form but at least I might find out what's causing the pain.

[BreadAndJamForFrances]

Hi...I have adhesions and exactly the same pain and symptoms as JohFlow.
I had a C-section in 2002 and another in 2003 due to breech babies. Whilst I was being sewn up after the 2nd I was told I had a large number of adhesions.
The second C-Section was not sewn together properly and was an open wound on 1/3 of the scar. I asked to be taken back into hospital to have it re-sewn, but was refused. It eventually healed after 8 weeks but by 3 months I had developed a large hernia. This was operated on 6 months later, by which time it was the size of a large grapefruit and very painful.

I was given a hernia repair using mesh, but this was only sewn on three sides not all four, so the mesh moved and 9 months later I had a massive repair operation where as much mesh, scar tissue and adhesions were removed as possible, but, some of the mesh has attached to my bowel and cannot be removed without taking bowel with it, so has to be left.

My muscles have been pulled together tightly and overlapped to give strength, but this means that I get pain if I reach up, sit or lie with my hands above my head, or lie flat for more than a few minutes. I cannot lie on my left side without pain, and will never be able to lie on my front again as it is incredibly painful. Each time I cough or sneeze or stand up quickly, I get an awful ripping feeling which takes my breath away. I also get random stabbing pains, a constant, dull, throbbing ache and waves of pain. It is worse when exercising, eg. walking uphill or putting washing on the line. I cannot carry shopping bags, vacuum the carpet or reach things of a shelf without a lot of pain and I worry that the hernia will come back.

Last year, after lots of investigations with doctors who didn't believe I could still be in pain 8 years later, I was referred to pain clinic. I was diagnosed with Neuropathic pain, nerve and muscle damage. I have been taking Lyrica which has helped some, but only a small dose as I was getting very tired on it (just diagnosed with diabetes though, so probably not the Lyrica after all!) and Versatis pain patches which numb the scar. These have been brilliant and really work on surface pain, my clothes used to feel scratchy and uncomfortable against the scar. I am now on the waiting list to have steroid injections into the scar to try and stop the pain completely. I really hope this will work, I hate taking tablets and would love to feel normal again.

Also, I need a hysterectomy but cannot have it because the consultant thinks I would end up with more adhesions, and more pain, which he will not risk.

I am feeling pretty fed up about this, especially with my recent diagnosis of type 2 diabetes.....I had no health problems before the C-sections, now I also have IBS and rattle with the amount of pills I take each day.

I am glad to have found this thread, I have never heard of anyone else with similar problems to mine. I hope everyone finds a treatment that works for them

[JohFlow]

Welcome 'Yam', 'Orange' and 'Bread and Jam' - excuse my rubbish humour lol but sounds like a perfect summer pudding

Thank you so much for your comments.

Yam - Adhesions are a common reaction to surgery (varies with surgery - but can be up to 90% in some cases) , infection or illness. Some people are very lucky and do not have any internal attachments which cause pain. Others (like us) can have anything ranging from a little intermittent pain to really debilitating symptoms which can affect quality of life. Some people's adhesions do not seem to get worse over time. There are some medical experts that refer to 'Adhesive Disease'. This generally refers to having adhesions with possible worsening/change over time. With the latter re-admission to hospital is unfortunately common.

It is of concern to me that some people can suffer with adhesive pain for years before it is recognised and treated. Some doctors do believe that the relationship between adhesions and pain is tentative, but if you ask sufferers there is little doubt in their minds. Pain (in medical fields) is generally associated with stretching/distortion of organs via adhesions or nerve tissue being enmeshed in the scar tissue.

Orange - aren't scans rubbish at finding adhesions! Nothing showed up on mine. Felt like a bit of a waste of time when I was already bothered. Laparoscopy is better (as you say) for seeing but it not without its complications. Sometimes knowing what is causing the pain (and consequently getting it treated) can reduce some of the pain by way of reduction in stress or separation of banding. Good luck with your scans and hopefully treatment is around the corner.

Bread and Jam - Sounds like you have had a tough time. And yes our symptoms are similar. I can't help feeling that you have been let down in your treatment and subsequent pain management. Have you made your feelings known to your healthcare providers? Since your operations seems that your quality of life and mobility is more restricted (same here). Are you able to work?

I have found Lyrica good for about 75% of my pain - but had to come off it because it made me as 'thick as concrete' . I thought I was a little left of centre on it ; but my family said that I was more 'full left' lol. I've made my mind to tolerate some of the pain rather than miss out on family life. It difficult when you have to make a choice between being pain free and being available for those around you.

I think there are plenty of men and women with similar symptoms to ours. It shouldn't feel like a taboo. I hope that we can continue to support each other here.

[yamsareyammy]

Again, not sure if my experience is of any use to anyone else.
Mine were on the inside, so to speak, of my appendix scar.
In my body, attached in a large mass to the scar under the skin? Not sure of that makes sense or not.
The surgeon was able to get rid of the ball of adhhesions, from what I can remember of what he said.
He did say that I was a susceptible person for this to happen.
I do feel, that if the pains were to happen again, from any other surgery I have had in my life[3 other operations for various things, all in the general tummy area], that I will recognise what they are eventually, next time.

The 4 or 5 years of pain were not pleasant. I was still able to work, but they ranged from, nearly needing to go home, to fleeting. And varied in where they were to, very much so.
And varied in hardly getting them one week, to being a right nuisance for much of a week.

I think, also, it gets that some people stuggle to believe you. They think, well how can a pain be so variable in nature.
Fortuneately for me, once I was pain free after the operation, they didnt have much choice but to believe me.

So sorry to hear that others have it so much worse than I did.

[JohFlow]

It does make sense Yams.

You make some pertinent points.

If I may; I would like to pull two ideas out of your comments and ask the group....

1.) Are you worried that your adhesive pain will get worse/re-appear if you have been recently treated?

2.) What effect does this worry have on you?

3.) Do you believe that the variable nature of adhesive pain makes it more difficult for others to empathise/diagnose you?

Thanks

[orangeflutie]

JoFlow yes I do worry that if it's adhesions causing my pain, they may get worse. For this reason I asked my doctor to refer me back to gynae as well as physio as the treatment process takes so long.

And the last question I totally identify with. The pain I have moves around sometes on an almost hourly basis and varies in severity. Some days it's so slight I think I must be making a fuss about nothing and others days it's back with a vengence and I have to resort to heavy duty painkillers. I've seen my doctor twice in the last months and described to her how the pain moves and varies and it definitely makes diagnosis a problem. When I first saw her I worried that she thought I was making things up because of the inconsistencies.

[yamsareyammy]

Could have or should have added, that I think I ended up seeing a consultant, cant remember if it was the same one each time, 3 times in total.
On the third occasion, both of us were fed up with the situation.
Basically he or she said that there was a 50% chance of the pain being due to adhesions.
Did I want to be opened up to find out, even though the chance of it being that, was 50%.
I said yes.
This happened 25 years ago. Not sure if everything would be the same nowadays.

[orangeflutie]

*sometimes

[CleverlyConcealed]

Sorry that you are struggling with adhesion pain JohFlow (and everyone else)

I had adhesions following bowel surgery as a baby; I was plagued throughout my teenage years and had several hospital admissions for partial bowel obstructions. These usually resolved after a period of no food and ng tube/sip/suck treatment.

In my twenties they led to a full bowel obstruction which needed open surgery to resolve. I was pretty sick and had a 10 day hospital stay. Since then (touch wood) I've been fine, just the odd bout of pain but no admissions - had 3 successful pregnancies too with no problems.

My surgeon said that I am always at risk of them recurring as if your are susceptible to adhesions then there's nothing that can really be done to prevent them. I get a bit panicky over any stomach pain and tend to go with a 48 hour fast if I get any pain, though my adhesion pain is such a specific pain that I know immediately what it is.

[JohFlow]

Welcome Cleverly,

Thank you for your comments

Sounds like fasting works preventively for a few in the group with bowel complications. I find that hot, sweaty, bloated, nauseous feeling naturally makes you want to give food a break anyway.

Well done to you for continuing with you family despite the interventions that you have already had. It's lovely to hear that you had three healthy kids. Doctors are not sure of the status of my fertility and that leads me to question whether any want for further children outweighs the potential risks. It feels a very personal/womanly question to resolve. Indeed, I think that there is a massive area around the affect of adhesions on fertility and how women feel about themselves if their equipment is either partially or totally non-functional. Would welcome comments from anyone who is willing to share..

This idea of not being able to prevent adhesions (whilst probably true) does not sit comfortably with me. I sometimes feel that I am subjected to pain because I can do nothing to prevent it. Like Orange I feel sometimes that adhesions can be a like a ticking time bomb. There's something subtly intimidating about something invisible lurking. I am ever hopeful that something will be found that will help others in our situation. Thousands of people a year develop troublesome adhesions - surely there is enough demand to warrant research and new treatments(?)

Yams - pain is usually a bodily warning that needs looking into. 50/50 is an odd ratio to try to make a decision on- but in your position; I think I would like to know too. Many of us are blessed with intuition. Sometimes we 'just know' when things aren't right. Even in the absence of medical proof.

What Orange say about support when pain varies is very interesting. Pain itself is sometimes inconsistent. It shifts levels and migrates. Its also difficult to actually see (unless you are doubled over). Its difficult to measure with scientific accuracy. I find my relationship/tolerance to it seems to change regularly too. Sometimes I thank the pain for stopping me moving in a way that will hurt. Sometimes I swear at it -for the hag it is! I too have received the 'are you sure?' eyes when describing the character of pain. I'm not sure what training doctors/nurses generally get in dealing with pain. Hopefully; someone can share light on that question?

[CleverlyConcealed]

I feel ( and yes I get what you say about instinct) that my adhesions were actually helped by my pregnancies. You know that thing about having excess stretch in your ligaments etc when pregnant? I really feel that it helped my adhesions and they settled into a less troublesome bond. I'd had some fairly major knee problems in my teens too due to ligament damage and scarring which almost completely resolved, spontaneously during pregnancy and I'm sure it's because my body found a new 'give'. Does that make sense?

Also I was very lucky that despite having long-standing bowel adhesions that they didn't seem to affect my fertility. My stomach scars are fairly shocking though, lumpy and overgrown in places and I expect that's reflected on the inside. It makes sense that adhesions relating to gynae procedures would affect fertility more than bowel even though they are close neighbours so to speak.

[JohFlow]

I wondered if pregnancy could have that affect on adhesions too Cleverly. Interesting that your knee may also have been affected simultaneously - but also makes sense if weight-bearing increases (as would be naturally expected in a healthy pregnancy).

I have bowel adhesions too.

Were your scars infected before they healed? Sometimes that leads to lumpy/keloid scarring on the outside ; but it could also affect healing internally. There is somewhat of a medical link between infection and over-proliferation of adhesions internally.

[yamsareyammy]

In my case, I decided I had nothing to lose.
I did to the extent that all surgery carries a little risk. But apart from that, I figured that even just opening me up,[tmi], they might find something, even if not the adhesions.
And quite frankly, at that stage, me especially was running our of hope.

Yes, I know that I am always at risk of adhesions.
It was described to me as flotsam and jetsom floating around inside me that finds a scar to stick to inside, and then the mass inside just gets larger as more material adds itself on.

Am I frightened of more. No. But I am aware, like you, that it can strike again.
One of the first things I moght do, is try to track down the surgeon I had many years ago. Though it would be likely that that person has retired by now. But they may have trained someone else up.

[JohFlow]

''bump''

[LovelyBath]

Hi, I just wondered how everyone was getting on with their adhesions? I had an open surgery to remove them and a section of boerl over a year ago. I'm slowly starting to get pains again and hoping it doesn't develop into anything further.

[Artistic]

I've had adhesions in childhood. Am not sure if adhesions led to surgery for me or the other way round. I've had 3 major bowel surgeries up to the age of 15, but nothing after that. When I had DC1 I was very keen to not have a c-section as I didn't want to 'wake up' the sleeping demons. luckily i didn't need it. Now pregnant with DC2 & praying that I get away with a vaginal birth this time too.

My surgeon had advised me that more surgeries lead to more adhesions, and if the person is not in pain then a surgeon (who may be operating in an area) should let the adhesions 'be' rather than try to remove them.

Has anyone had a recurrence of adhesions only because of c-section, with no problems before that?