Adhesions spoiling my life

Following 2 caesarian deliveries 30 years ago, a fall down the stairs and lifting heavy furniture I have suffered intermittent pain from adhesions for the last 5 years and it now rules my life. The doctors at my surgery don't seem to know anything about adhesions and they don't show up on ultrasound either, so I'm thinking I would have a consultation with a private surgeon and see whether he will take me on under the NHS. Adhesions haven't actually been diagnosed - I've been doing my own homework and am aware of the difficulty in being taken seriously by my own GP. Can anyone tell me the best way to go about this and the likely costs involved. Does anyone know how much adhesiolysis would cost privately? I feel desperate and depressed. . . .

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  • I suffered aheadions after my c section nearly four years ago I had to fight for nearly two years to be taking seriously I think it was a&e that took me more seriously as that seemed to get the ball rolling for me I ended up having my aheadions cut away but deep down down I'm glad that I had a lap as only way mine were dignosed I think u should go back and c your gp and demand to be refered to gynaecology don't think no crap u know ur body and u know when something wrong

  • Nicolahunny

    Thanks so much - I've been going to the docs for years on and off - A&E twice as well and absolutely nothing shows up on scans. I feel really embarrassed/negative, like I'm making it up and attention-seeking. I've mentioned adhesions several times but just get blank looks. I'm sent me for blood tests which come back normal except for cholesterol and they fob me off with statins :(. And the pains really play me up. I will do as you suggest but haven't much confidence in the outcome.

  • I had the same blood tests clear one scan showed ovarian cyst my husband even lost the head at my doctors he said unreal how u can treat my wife like that said bout time u got ur finger out and refered my wife to gynae to which they did I had years of being branded a hypochondriac I mean seriously xc

  • I am so sorry to hear this and I do hope things are improving for you from the age of 16 I had severe pain over the years the pain got worse I was lucky to have my 2 children but I was still suffering with pain I was never sent for any scans and then I had a miscarriage and I was sent for a internal scan and finally found out I had endometriosis I had laporoscopys but for me made no difference to the pain some years passed I was 46 when I had a full hysterectomy I do not for 1 second regret having op but they dident get all the endo and its very bad I went to see gp yesterday I am on 100mg gabapentine and I am also on tabs for painful bladder I wish you all well and it would be lovely to to get a reply x

  • yeah I was more bowel issues and feeling like my insides were being pulled always left side that got severe pain and the adhesions were on left side afecting my pouch of Douglas laprostopy not really made any difference to my pain but I feel second pregnancy is easing the Endo pain abit which I suppose is better than the pain iv have endured over the years I hope that things improve for you to xx

  • So sorry you are struggling. I also developed adhesions after my csection and it took six years of battling before I was diagnosed and offered a lap. I had countless scans and investigations with specialists but they were all negative. It was only when I saw an endo specialist that they did the lap and removed them. I had adhesions in my pouch of Douglas which had caused all sort of problems with my bowl and rectum. As soon as the surgery was done, my symptoms disappeared. It's incredibly frustrating when you know there is a problem and no one takes you seriously. Keep on fighting. You know your body and you know when something isn't right xxx

  • Did you have to go private or did you manage to get it done on the NHS?

  • The six years of investigation was done on the NHS but luckily through work I was able to get a private policy that didn't exclude all of my previous gyne and endo conditions x

  • I too had adhesions and scar tissue causing all sorts of pain. As I still had endo I went to bsge clinic and so glad I did as they excised endo but also separated and removed adhesions and scar tissue and then put in felt to stop more forming. I think it was called adept. That last stage is absolutely key from my research for an endo sufferer otherwise adhesions will just come back or more will be formed.

    I had previously had private surgery to burn off endo and remove adhesions and it cost about 3.5k but she didn't put any barrier in to stop more forming so pain just increased.

    Hopefully with a bit of research and questioning you can find someone to help but I think bsge maybe the place to start if NHS abd your gp refers you and if not at least go privately to one of their surgeons.

    Best of luck

    bsge.org.uk/centre/

  • Thanks Marcia71 x

  • My understanding is that surgery will cause more adhesions so it's not recommended. However, there is a specialist massage available which can help. Have a Google, loads of people do it all over the country. You can self massage too if you prefer. That would be the route I would go down if it were me. All the best

  • Yes I did try this once and it helped but I couldn't quite manage to get it to work again. I'm a bit scared to give it a good rub in case it has the opposite effect. Has anyone else had good results? Thank you x

  • hi can you please give a little more info on massage many thnx x

  • Thank you all so much for writing - it really does help to know there are others out there. But what a bloody life when you have to convince a doctor that you're not just putting it on. Mind you I have thought it was other things, like a hernia and even (God forbid) cancer when the intense knife-like pains stopped me from walking for 2 days. It started after my first caesarian and sex was very painful, so painful I don't know how I was able to get pregnant again so soon (it happens). Another caesarian and then - silly me - a fall down the stairs a day after I came home from hospital. And it's gone on from there really. Sometimes it doesn't take much - like reaching up to get something off the top shelf - and then bam! - intense pain for over a week. It does die down though, but still have constant period like cramps front and back. And then there's the bloating and not peeing much - and then it's the opposite :) I thought it could be a hernia because of the stinging pain in lower groin, radiating down my leg - I sound like a right old whingebag but - oh my word - it does get you bloody down doesn't it? Is there instant relief after the lap? I read that sometimes it's done twice in quick succession to stop them forming again. Can anyone tell me what happens to the bits that are cut off? or are they just snipped and left in situ? Sorry to be ghoulish . . . There's not a lot of information available.

  • There is a bagel endo centre in London obviously I can't recommend as already had hands slapped but they sound clued up and it's nhs they also do private

  • I'm London based and wonder whether any of could recommend a good/first class laparoscopist? I'm thinking of approaching for a private consultation and then asking my GP to refer me.

  • Hi adhesions is a tricky one as they can come back and/ or the surgery to remove them can actually cause them. I don't mean to depress you but I have been in same situation lately. I found the adhesions were hurting because they were being pulled on by my bowels even if I was just a tiny bit constipated. Lactulose really helped 2 to 3 times daily and probably a laxative as well. The treatment is a lot more expensive anything from about 5000 to 10,000£ but maybe have a consultation? But it hey can come back but if they are disabling ( for instance I swear mine caused a blockage and I ended up vomiting and collapsed) doctors didn't care. It may be best to treat them . It's a contradiction but actually staying away from codeine, tramadol, morphine etc does help the pain as theses meds slow the digestive tract and the pressure kind of builds up and the waste struggles to get round all the bends even more causing excruciating pain! Mine is all from endometriosis but I hear adhesions can also form from any surgery especially caesarean. It may be a different thing that they pull on or affect but getting a private consultation isn't too difficult and if your in the uk they can often spring board you onto nhs from there . Good look hope you get some help xxx

  • Thank you caroljae80 - very helpful info especially the cost to go private. I defo can't afford to go that route without a lottery win then!

  • What country are you on? I'm not advocating anyone in particularly to see privately but a consultation can range from 120£ to 350£ and then they can put you on nhs for the treatment free. I was just looking at doing the whole she bang privately as I wasn't really getting any speed from nhs and my job was at risk . At least following a private consultation they can get an MRI arranged for you on nhs which won't show adhesions in themselves but if they are causing a partial blockage or some obvious change in the location of your bowels a twist or something it will show. It seems something is on mine and doesn't feel happy when bowel is overly full or under pressure ( could still be endo on my bowel yet but it's certainly happier for being less full and softer stools for now anyway it's only been a couple of weeks. I was in agony from 17 oct 2016 after hysterectomy ( laparoscopic vaginal) until about 2 weeks ago when mr trehan suggested taking lactulose 3 times a day and stop all opiate pain killers morphine, tramadol, codeine which wasn't pretty in itself but I did it. Hope you get some help.

  • Yep adhesions don't show on scans mri or ultrasound a scan is a fob off tool

  • I had several x-rays about 5 years ago which eventually showed adhesions blocking part of my bowel but I was starved in hospital and they only showed up on day 9 and then I was whipped down for surgery within the hour :/ Apparently you have to be totally empty for them to show and I'm totally covered with adhesions, my insides are scarred together with very little movement...persevere and insist on treatment, good luck :)

  • May I ask how they removed them and how well did it improve the pain for you ? Did it come back. I'm happy for you they found them and thanks for the info about being empty for them to show. I can't believe the way this whole thing has been put back on me as to blame and that I'm imagining it etc etc very soul destroying when your in pain hugs 🤗

  • The surgeon only removed the obstructing tissue as to remove the rest would be impossible :( i had open surgery too as keyhole is impossible for me, but it was a huge relief for about 4 years, it's niggling again despite him using a barrier gel, though he did say it wouldn't last forever and to expect problems in the future. The 4 years of no bowel pain has been great though :) I can understand your frustration and sadness, I can't understand the attitude we receive when we turn to the specialists for their help :( I would say persist though and insist on receiving help/treatment because it is out there and unfortunately I think a lot of it has to do with £££ ...i had a major car crash 14 years ago and when I go and see my gp their answer is always, "you were involved in a very serious accident, you will experience life long pain." No investigations for anything else and now I have a serious problem with a huge fibroid that will need 3 different surgeons to remove and even then they can't guarantee I'll survive the op - my husband flipped! If they'd investigated earlier it would have been treatable instead of fobbing me off. Hang in there <3 if you have to, pester the gp, specialist, keep ringing until they agree to help you it is your right to be treated, Best of luck and gentle hugs xx

  • Same to you and thanks. Get good advice someone who is realistic about the outcome of your op. No one should be faced with you might not survive the op. I wouldn't go with him or her I would not trust them . Hope you get some good help 🤗 ccxx

  • I wish you all the good luck and expertise in the world check everywhere do not risk losing your life because of these people giving up too easy. Hugs 🤗 xx

  • I hadn't expected so many responses - I feel so sad there are so many of us but touched that you have all reached out. xx

    My first caesar was an emergency but I was never told anything about adhesions - never even heard about them until I started having pains and started looking online - and yet they' seem to be part and parcel of any invasive surgery and doctors must be aware of this through their training, I wonder why they keep quiet about it. .

  • No problem we have to stick together ( pardon the pun). I believe there are new technologies coming out for adhesions I'm looking into them with interest. I'm not even a doctor or a nurse but I do work in a kind of medical profession albeit mostly environmental. But my passion is medical I think I should have been a doctor lol. But this endo and adhesions thing is so so difficult and so much rubbish practice criminal to let some of it go on don't ever have laser fortunately I never did but still Ive had a lot of problem and I was under mr trehan on nhs even we had our arguments but hopefully and 10 years later I apologised and said I didn't want my anger issues at the time to bar my way to good treatment. He wad very professional last time I saw him and helpful . All I would say is make sure at bare minimum go to s bage accredited centre London sounds good and I think things are getting better slowly.. forgot what the point was now lol of what I was saying but change will only come from pressure from the people . I too went into this thinking the doctor knew best to some extent yes some extent no. Ive basically ended up with a hysterectomy as the nhs didn't want to pay for gonadotropin agonists zolodex pro strap etc despite it still has the same effect on my bones. And Lot of less experienced surgeons do not look or know what to look for when endometriosis is on the bowel I quote an interesting website which backs this up I will have to attach as a picture as I can't find the website address on my print out and laptop broke recently.

  • Please try physio. I had horrific pain after hysterectomy and I had internal physio which isn't pleasant but it really helped. Even if you don't need internal, they can help with adhesion massage as well.

  • Very interested to have this post pop up on my email. I've just returned home after 6 day stay in hospital for nasty virus but it was discovered my HUGE fibroid is preventing me from emptying my bladder. I have on average 650 + mls at any one time stored unable to be passed. I've gone from a size 10 trousers to 14 and they deem this acceptable :( I have a serious tummy full of adhesions after a major car crash 14 years ago, broke from head to foot down the right hand side of my body and my insides literally tore all over so they opened me up, stitched me up...you can guess the state of my insides now :( ...anyway, the gynae is very reluctant to remove fibroid as stuck to other organs, inc bowel, reckons the best outcome will be a stoma but i'm at a stage of acceptance now for this as the pain i live with in the meantime is just horrendous. The worst scenario is, well, I don't make it but after all these years of crap life it may be a blessed release :/ ...how do i proceed? Do i insist i'm given the op for removal and also to sort out the adhesions as it seems from reading you ladies's comments it can be done! I hope you all find some relief and solutions to your problems and wish you all the very best, and thank you for replying on this post otherwise i would have continued to feel very alone. xx

  • Your situation seems very complicated so I wouldn't know where to start really but I think sometimes even if you have the aroma bag it can be removed at a later date. I'm with u on the pain I sweR I was ready to end it at one point it was so bad . Keep asking keep pestering applying pressure on your health provider go elsewhere if need be, get private consultation if you can best of look looks forward to any updates whom your up to it hugs 🤗 cx

  • Oh My God, I an't imagine what you're going through susieblue, but there MUST be a solution You must believe someone out there can help you . . . it's finding the bugger that's the problem . . .

  • It is :/ ...just been told to expect up to 3 years wait to see neurosurgeon in Southampton after an 'urgent' referral from pain clinic at St Thomas'...had SCS fitted but removed emergency op as arms have started going numb...it worked brilliantly so no reason to not have it re-implanted, just all down to postcode lottery and £££ :( so an extra 3 years or chronic pain that can be helped immensely by the implant, just have to join a queue and get approval from a new Dr :( fuming doesn't begin to cover how I feel :(

  • Sorry to hear of that Susie blue. Sounds awful!

  • Hello, this is an interesting thread. Sorry to hear of your long term suffering.

    Can I ask if you have had a laproscopy to also check for deep infiltrating endometriosis say in utero sacral area or pouch of douglas. Also an MRI to check lumbar spine? It's just that your symptoms you describe sound similar to mine and I have both of these areas involved.

    If youve not had a lap to look at the areas youve got pain yet how could anyone the medical system say they have correctly investigated yet? Sorry to hear your getting what sounds like fobbing off.

    I have been told I probably have adhesions too, on top of endo & spinal stuff. I understand adhesions can come due to multiple surgeries. I have just ordered a gentle massage roller to try that someone on here recommended that had helped them with adhesions. Its a lighter touch than trying to massage area apparently.

    Where I am I have had to go privately to get any medical help. It has worked out costly but much better for me but over the years. It has got to a point where I meet a specialist and wont engage further unless they seem interested and competant. A good GP to help navigate has been essential for me too . They have helped me with pain management. If yours is not helping, you might ask for a refferal to see a pain clinic too, if it is interfering with your life.

    It is so hard dealing with doctors that give you blank looks and dismissive attitudes & I think this kind of treatment is found too often in public systems. Doctors in private areas seem more willing to treat patients as clients or consumers and to listen. Best of luck navigating& looking out for yourself. Hope you catch a break with it soon & get some relief too. 🌷🌷

  • I don't know what to do to be honest. I identify strongly with the symptoms I see listed here - the Mound of Douglas for instance - I'm sure I do have that because I've been celibate for the last 15 years as ANYTHING that goes up there is like a hot knife and I just cannot stand it. Even though I'm miserable about the symptoms, however, I see from what has been written here that a laparoscopy brings only temporary relief (and sometimes not even that) to a lot of women.

  • yes I went private to have full hysterectomy hat was over 10 yrs ago I was told by the consultant that there is no guarantee they would get it all and for quite some time I have been getting those horrible pains and its here again but I would like to say that I do not regret having the op as the endo was very severe by the time I got to surgery

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