What does an adhesion feel like? heal... - Pelvic Pain Suppo...

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What does an adhesion feel like? healing? Any similar experience?

Amywoodx
Amywoodx

Hello everyone. On 21st September I had a laparoscopy for suspected endometriosis (none found) in which they found an omental adhesion to the anterior abdominal wall which was released by bipolar and scissors. They made two incisions, one through my bellybutton and one on my lower left side. I had not had any surgery prior to this so I was very confused as to how it formed.

About 2 months before I got the call to go in for surgery, my pain started to get better and I started to feel a lot more normal. Then I went for surgery and I feel like I've taken a huge leap backwards to when it all began.

My pain is bad, every day I get the same sensation of having a bad gut infection or stomach bug, I constantly feel like I need to go to the toilet today however when I go nothing seems to happen and I keep getting wriggling twitches in bellybutton area and to the right accompanied by bad gas. This all started about 2-3 weeks after surgery. I get bad pain every morning which indicates the need for a bowel movement and usually the pain would subside after doing so however recently the pain seems to just continue throughout the day now. I've also noticed differences in my stool to how they used to be. This is exactly the type of pain I went through at the beginning of this horrible journey that led me to having a laparoscopy in the first place and I'm seriously afraid that I'm going to have to go through it all over again. Nobody made me aware that surgery can cause further adhesions either and now I'm just really upset as I wish I never went.

The week after my laparoscopy was quite a journey too as I ended up in A&E with bad constipation, then got a bellybutton infection which required oral antibiotics too. Could it be that the antibiotics have messed with my gut flora, could it be healing or does it sound like an adhesion? I'm absolutely sick with worry at the thought of it being another adhesion or the same adhesion forming again. The surgeon did tell me that he wasn't sure if the reason for my pain that I had the laparoscopy for was due to the adhesion he removed in the first place.

I spoke to my gastro doctor the other day who sounded like he couldn't wait to get off the phone to me and got annoyed when I told him I think my adhesion is forming again so he wasn't of much use either. But he did mention to give it a couple more months as it could be internal healing.

I really do want to believe that it is just healing however the pain seems to be worsening and I don't think they actually did much inside of me for it to cause pain like this due to healing anyway? It's also been a month and a half since the laparoscopy was carried out so surely it shouldn't need to be healing at this point as that's a pretty long time. Has anyone had a similar experience? What do adhesions feel like, does it sound like it and could it get better?

Update; now getting bad pelvic pain in my lower right side and middle Cant stand straight and feels like inflammation :(

18 Replies
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Alaine1
Alaine1Administrator

Hi Amywoodx,

I’m sorry to hear about your pain and how frustrating it has been for you. I’ve had this surgery 4 times for endometriosis and some people form adhesions more easily than others. Some people simply develop minor adhesions without ever having abdominal surgery at all which leaves the person confused and afraid. Firstly I’d like to reassure you that you may never find out the cause for your minor adhesion in the first place simply because the doctors don’t know the answer. I’ve developed adhesions after surgery but I didn’t feel them until much later on in my healing journey so I don’t think your pain is adhesion related. What I think you might have done and it’s totally reasonable to do this is say pain felt like this before surgery, been told about adhesion, pain returned therefore it’s the adhesion causing the pain. I’ve had a few adhesions sticking organs together but not the very dense adhesions that can often be found in severe endometriosis or in people that have had a lot of repeated surgeries. Unfortunately my mum was one of the unlucky ones whose organs were distorted and covered in adhesions and endometriosis. She had a form known as deep infiltrating endometriosis.

Laparoscopies are useful in that they allow the surgeon to visually see what’s going on in the abdominal pain and pelvic cavities. It can tell the surgeon if endometriosis is present, what the uterus looks like - is it bulky, are there fibroids present or cysts on the ovaries. All of this would have been looked for during your surgery. What isn’t always made clear enough to the patient is that 50% of laparoscopic surgeries fail to find a gynaecological cause of pain in females and the other organs themselves all look normal. This leads to huge disappointment when the patient wakes up to hear that nothing is wrong. Normally we’d be overjoyed to hear those words but when we expect the surgery to find a cause of our pain and it doesn’t it’s a huge blow. But please don’t despair. It’s also very common to become constipated after this surgery as the Bowel itself is moved around and sometimes goes into spasm. One surgeon sent me home with lactulose for it but my current surgeon didn’t. I’ve also had an infected incision after surgery as well, it’s something most GPs and others are used to seeing so it’s. Toning unusual or to be worried about. Firstly I’d try to forget your adhesion that the surgeon removed and you may never form another adhesion in that area again, adhesions don’t return in everyone and there isn’t really anyway of predicting who will or won’t form adhesions during a surgical procedure even if very little was done. Secondly the information you have written provides a lot of useful information that I believe may have been overlooked by both your doctors and yourself. Your symptoms sound very much like irritable bowel syndrome. This disorder very often is found alongside other medical conditions but equally it can occur on its own and present in many different forms. Some women find they get flare ups during their periods whilst others find they get it throughout the month. If it appears it’s linked to periods and the symptoms are severe enough it is useful to do a trial of the pill. Not everyone is happy to do this but many find it controls their symptoms for them. There are other methods available to use if you’d prefer and your GP or practice nurse would be happy to guide you. It’s often what leads some women to believe their pain is gynaecological in nature, pain during a period isn’t always gynaecological and flare ups with other medical conditions are also seen during periods.

What to do

Keep a pain and symptom diary for the next 2-3 months. It doesn’t have to be at the start of the month. You can start tomorrow if you’d prefer. It doesn’t have to literally be an actual diary, but you can print them off the internet or you can use a note book. I’ve used both in the past. It’s best if you record things such as when the pain started that day, or if you woke up with it, did it last all day, what was the pain like, did the pain change at all over the day, if it became worse what caused it to become worse - food, exercise, clothing, stool type etc. Also don’t forget to note when your period starts and finishes.

Also record any medications you are currently taking for the pain or for any other medical condition. A pain diary to a doctor is a valuable tool and something they like their patients to do. It’s also valuable for the patient as they themselves can see what triggers their pain. Very often it’s a number of things so don’t be alarmed if after 4 weeks or so you can see a pattern forming. Once you have done the diary you can go back to your GP with it and /or seen your gastroenterologist? If they are still using telephone consultations post it in a week before with a brief note including your medical records number with your name and mention it’s for you doctor to use during your appt. you could a,so mention if you’ve noticed an improvement, if you feel there is a pattern etc.

IBS doesn’t mean that you must suffer from constipation and/diarrhoea some or all of the time. Some people suffer from both and others suffer from one or the other. There is another set of patients who have pain only but don’t suffer from constipation or diarrhoea.

Have you been tested for coeliac disease. There are a number of clinical presentations of this disease which is very similar to IBS but unlike IBS if positive you must avoid gluten as it can result in a variety of complications which can impact your health long term. But don’t stop eating normal bread and biscuits until you have been tested if you haven’t already.

You could try the FODMAP diet which is a diet specific for IBS but has also been used by patients with endometriosis as they can suffer from IBS type symptoms thought to be due to the disease. It’s best to remove one food item at a time from your diet. I’ve tried this myself and found I get abdominal pain with dairy, gluten and sweet corn.

This next bit of advice can’t be emphasised enough for anyone with chronic illness and/or pain. Rest and relaxation. Pain in itself leads to increased stress and anxiety especially if we feel that things are outside our control. It’s important to get enough sleep which can often be the first thing to become disrupted. Also try and get some exercise which I know is easier said that done. My exercise and dance came to a stop but now I value going for a walk even if it’s to the post office nearby which is about 10 minutes. You don’t have to go on long hikes but it’s a change of scenery and a nice autumn walk even if windy can be refreshing. Other points to make in this part are to do something nice for yourself such as painting your nails, buying a favourite chocolate bar, having a PJ and movie day on a weekend. Things that we tend to forget about when pain and illness strikes.

Please try not to be overwhelmed as if it turns out to be IBS there are a variety of lifestyle factors and medications that can be used even if it has a slightly different presentation to what your GP might have seen previously I hope this helps

patient.info/digestive-heal...

theibsnetwork.org/

The above charity also has a help line

psychologytools.com/resourc...

This has a link to pain diary which can be downloaded

Amywoodx
Amywoodx in reply to Alaine1

Thank you so much for your response! That's really helped give me an insight on what the problem might be and I'm actually really happy to hear that there's still a chance that it may not even be an adhesion. If you don't mind me asking, how long after your surgery did you begin to get pain from your adhesions and what did they feel like? Today I've been getting short stabbing pains in my lower left and right abdomen (only lasts about 0.2 seconds) but they keep coming and going.

I'll definitely keep a pain diary and see what happens!

Alaine1
Alaine1Administrator in reply to Amywoodx

Hi Amywoodx,

My adhesion pain didn’t return until after 6 months and felt like a full ache that occasionally felt sharp on my right side where my ovary is but I wouldn’t describe it like you have. Definitely write in your diary as it might be gas related pain as that can cause agonising pain. Have you tried peppermint tablets which you can get from Boots or health food shops. You can even drink it as a tea if you’d prefer.

Another thing I forgot to mention previously is probiotics which are often mentioned. The jury is out as to whether to take them continuously or during and for a few weeks after the antibiotics. A dietician told me to take mine continuously which I have done. You could always try for three months and if you feel no benefit then stop.

I hope this helps 🌟

Amywoodx
Amywoodx in reply to Alaine1

It sucks that the pain returns :( Have you received any pain relief for your adhesion symptoms yet? today I’ve been woken up with sort of stabbing pains around my bellybutton and spasm type of feeling with my stomach feeling rather swollen. It sucks so bad can’t remember the last time I had a good nights sleep.

I’m currently taking probiotics so will see if they do anything. Only been taking them for about a week now and it says on the box to take twice a day for 2 weeks after antibiotics but I may continue after that too. it would be great if it was just something as simple as that. I doubt it though 😞

Alaine1
Alaine1Administrator in reply to Amywoodx

A lot of my pain is from endometriosis, adenomyosis and IC rather than from the adhesions themselves thankfully so I can’t complain too much. The advice on adhesions is to leave them alone rather than continually operating as it may worsen the outcome.

Yes definitely continue with the probiotics as unfortunately the antibiotics kill off all the good bacteria that we need - there’s always a negative outcome!

Amywoodx
Amywoodx in reply to Alaine1

Yeah that’s the annoying part - I needed the lap to find out what was wrong but now I know I had an adhesion I may have just made everything worse 😭 there was no winning! And honestly I hope it’s just the antibiotics knocking my gut bacteria all out of place that’s causing the stomach/constipation symptoms as it does seem to have come on after taking them so 😫 cheers for your help and responses x❤️

Alaine1
Alaine1Administrator in reply to Amywoodx

I really don’t think you have anything to worry about with the adhesion as it sounds as though it was relatively minor and not likely to cause any trouble if it does reform. I know it sounds obvious but try and focus on the here and now. I practice mindfulness and notice when I have missed a day as I start to feel frustrated with my health. I use an app called Headspace but there are plenty of apps out there and YouTube sessions online. The lap hasn’t shown any disease which is great news in itself so now is the time to focus on new ideas, give them a go and see what happens. You might find some suggestions work better than others or not work at all. But that’s ok even if you were diagnosed with say endometriosis there is no one size fits all treatment approach that works for everyone. Most sufferers of any medical condition and myself included will tell you that what the medications don’t work on we very often find other solutions whether that’s diet, physiotherapy, mindfulness, gentle exercise such as Pilates, yoga, walking etc. So please don’t worry about the adhesion. If it was a serious risk to your organs the surgeon would have discussed this with you.

Amywoodx
Amywoodx in reply to Alaine1

Thank you so much for this. It's really reassuring for me and I will definitely try incorporating mindfulness into my lifestyle x

Alaine1
Alaine1Administrator in reply to Amywoodx

Hi Again!

One thing I forgot to mention is the use of buscopan tablets. These can be purchased over the counter and are useful to take daily for IBS or IBS type pain. I’ve taken these myself and have had success when my pain flares up. I haven’t officially been diagnosed with IBS but an anaesthetist recommended these to me when my bladder was in extreme pain after surgery.

Amywoodx
Amywoodx in reply to Alaine1

Thank you for letting me know! I did take a buscopan yesterday and it helped a little bit to some extent but I still felt quite sore inside especially in my pelvic region. I wasn't able to stand up straight yesterday for a while which is very weird, everything felt quite inflamed I suppose and it hurt when I pressed on the region too. Really not sure why that is at this point or if that's normal. It was kind of constant too after that. This seems to have come on recently and it wasn't an issue up to about 2 weeks ago.

Alaine1
Alaine1Administrator in reply to Amywoodx

With medications especially medications used for pain including buscopan is to be consistent. The aim is to keep the level of medication constant rather than allowing it to dip down to almost zero and then needing to start from scratch again. This is true if you are taking paracetamol or even morphine. Each drug lasts a certain length of time within the body which is complex and differs for each drug. It’s too complex to go into here but involves drug half life etc (pharmacology). So one tablet isn’t likely to have a massive effect but may take a week of being taking consistently before you notice any benefit. There are other over the counter drugs to take for IBS/IBS type pain but best to ask a pharmacist or speak to GP first to make sure no interaction with other medications

Amywoodx
Amywoodx in reply to Alaine1

Ah ok thank you so much, that does make sense, I will try it consistently and see what happens! Also, do you have any idea if pelvic pain this later on after surgery is normal? It's weird as they didn't actually remove anything from my pelvic region, they just had a look around and I wasn't experiencing it this bad before surgery!

Alaine1
Alaine1Administrator in reply to Amywoodx

Pelvic pain can be very unpredictable and it’s perfectly normal to experience flare ups that may be linked to surgery or even stress/anxiety. I don’t think there is any link with your surgery if I’m honest as like you say they didn’t really do anything. Saying that your bowel and bladder would have been moved around during the surgery so each one of these could be acting up. It’s why very often after a laparoscopy it’s common to experience constipation. Could this be a factor? It’s very easy to overlook the obvious causes of pain. Have you any symptoms of a UTI? It might be worth a discussion with your GP if you are concerned. Another suggestion might be to trial a course of gabapentin or amitriptyline to see if some of the pain is nerve related.

Amywoodx
Amywoodx in reply to Alaine1

Ah ok part of me hoped it might just be healing from the surgery but deep down I knew that didn't really made sense so I guess it's got to be something else. I did experience bad constipation the week after my surgery and had to be taken to A&E. It then subsided and I was ok for a couple weeks after that. Would I still be experiencing surgery-related constipation even at this stage (2 months after)? I've been taking senokot for 3 days and I've had a bowel movement today and yesterday though so I don't think that's the case anymore :( No symptoms of a UTI either but I do get pelvic cramping when I urinate (also used to experience this last year but it eventually stopped).

It's a shame it's started again as I stopped experiencing a lot of this a few months before I had the lap. Didn't have a clue the lap would start it all up again. I guess I just have to keep hope that it will get better with time again like it did last time but I went through months of pain first. I have a follow up with the clinician on 17th so will talk to her about what I'm experiencing and then give my GP a call if they don't suggest anything. But for now I'll keep at the buscopan and probiotics. Hopefully after a month it'll be better.

In terms of nerve pain, would that usually subside too or is that a permanent thing?

Alaine1
Alaine1Administrator in reply to Amywoodx

Nerve pain can subside or it can be chronic. I take both pregablin and amitriptyline for nerve related pain, but also for pain related to chronic fatigue syndrome. At the moment there is no consensus on who will and won’t get better or if nerve pain is better treated as soon as it begins. Even if it becomes chronic there are a variety of medications to try so don’t despair!

Your constipation now probably isn’t related to your surgery now but if your walking around less or exercising less generally then that could be a cause of your constipation. Diet and fluid intake is also important too so that may also be a factor in your constipation.

It’s difficult to say whether the laparoscopy made you worse and IBS and in fact any chronic condition can get better only to flare up again. It simply could be that you flared up at the same time as your laparoscopy and the surgery wasn’t the cause.

You could indeed be healing and you could indeed be forming more adhesions it is quite early to say which one it's not late at all you could take up to a year to heal.its unfortunate you weren't told about adhesions.adhesions are possible after every surgery and they can get worse the more you cut through them .have you tried peppermint tea it's great for these gassy stomach problems you have! I drink it a lot and works wonders!Just to add

Adhesions Cause pain and are painful you can usually tell if you have them because you scar may be indented rather than smooth

Amywoodx
Amywoodx in reply to Afrohair

Thanks, My scars still look like they’re healing too tbh so I cant actually tell yet they sort of look like how skin looks when you’ve picked a scab off and they aren’t smooth they’re bumpy 😫

Afrohair
Afrohair in reply to Amywoodx

Yes I think it's a bit early yet adhesions usually take a while to form so I think it's a bit early for that yet sometimes they can take up to 3 years to form and get really bad

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