Post Op DX Lap questions...

[kiwi1]

Hi Ladies x

I am one week post DX lap and recovering well Still tender and swollen but I think doing well – back at work.

I have a few questions though!! In the hope one of you may know or be able to shed some light as I have a 6 weeks wait until I see the Gyny.

So they told me (as I was in recovery and still not really with it) that all they found one bit of something they think is Endo and has been sent to pathology for conformation and that my bowel is adhered to something (on the left side – I have right side pain) – this is where my memory is giving me grief as I can’t remember what it is adhered to (stomach? Abdominal cavity?)... and that this was common – again can’t remember if she said it was common, meaning in the general population. Or she said it was common in people who have had a C-section. BUT I do remember her saying they didn't fix it. WHY!?!?! Half my problems are bowel related. Can anyone tell me why they would leave it? Do you think they meant common in women who had a C-section? Seems odd to me that it would be common in everyone. I had three days of “normal” bowel movements before my pre op issues came back – Diarrhea on a daily basis, urgently and painfully.

Also the bit of possible endo they found was (again I think) in the middle area down quite a bit –All my pain is right sided. Could this possible one teeny tiny bit of Endo be causing all my pains and problems?? How does that make my hip hurt so much? The pain of which is back today 6 days post op.

What if it is not Endo, the little bit they found? Where too now?? I know it sounds crazy but I really wanted them to find lots so I would have a reason for all the pain and the lost 2 years of my life!!!

I have a Merina in now and so far so good, a little crampy and emotional but otherwise no problems.

Sorry a couple of questions in there!

[Impatient]

If the biospy is endo or not, it clearly isn't enough to cause the pain on the other side of you, and if you have had a c-section then adhesions would be normally expected and nothing to do with endo.

Therefore with very little if any endo located, your next step is to ask for am MRI scan while you have a period and soon too, before the mirena kicks in and stops them.

this is to look for a condition called Adenomyosis. very similar to endo, but invisible during a lap op because it is hidden inside the uterus muscle walls.

adenomyosisadviceassociatio... gives you everything you need to know about adeno.

If neither endo or adeno is found, then it is less likely your pain is caused by a gynae contion and you would need to look to neurological causes. possible caused by the pregnancy or c-section but not necessarily so, or digestive tract ones.

Perhaps sciatica, or something to do with your spinal alignment and posture.

At least the news is excellent as far as endo is concerned, and adhsions too.

They won't cut back adhesions if it isn't necessary or poses a significant risk of injury. at least you aren't riddled with them and the one location isn't causing you any pain or impacting on your body functions. If you cut them back it only encourages more to grow, so unless there is a very good reason for attacking adhesions then it isn't worth risking making the situation worse in the longer term.

It's a step on the journey to diagnosis, even though it would be handy for endo to explain your symptoms, believe me it is far better to not have endo, and despite being somewhat back at square one, you are narrowing down the possible explanations for your pain.All the best for a speedy recovery and finally getting diagnosed with the cause of the pain.

[kiwi1]

Thank you Impatient!

when you say Neurological causes - what kind of neurological issues would cause the right sided pain and bowel issues?

I have had a colonoscopy and been to a GI before getting referral to GYN and they ruled everything out, so I was quite hopeful the GYN would be able to help. I have looked at Adenmyosis before but I dont think it really fit with my symptoms. Have also had my back and hip looked at by various treatment providers including physio and Osteo and they cant seem too fix it

I am at a pretty low point at the moment (probably hormonal due to Merina?) and really just want some answers and relief. I have been at work for just over half a day and my leg and hips hurt so much I want to cry. I had a lot of hopes pinned on this surgery - I guess that was silly!!

[karrijon]

I can sympathise with you, I am in a very similar situation as you and also recently had the mirena, which incidentally doesn't seem to do much for the pain but does slow the bleeding right down. Unfortunately you will just have to keep on at them and trust yourself and your body - you know your body better than anyone else! I have been suffering for years with still no clear diagnosis with many people telling me it's not a gynae problem when I know 100% that it is. Keep your chin up and just get straight back to them if you're still in pain x

[wp22]

Hi sorry for your suffering. Do you mind me asking have you only had these sort of pains after your c-section? As a c-section can cause endo. When they cut you to take the baby out and if they dont clean everything up properly and some of the inside of your womb (where the baby grows) is still left on the outside that is when you get endo.... Even a tiny bit of it will cause immense pain. Plus it pis..es me off when I hear time after time they go inside your tummy have a look, see endo and then just leave it, wake us up and tell us you have endo. So dr. what have you done about it, their reply, nothing. X

[Impatient]

They didn't leave the endo wp22 - it's being biopsied, it was the adhesions that were left , so at this point - the results not being known on the bit removed which may or may not be endo, they have at least done something on that.

neurogological damage is damage to nerves. could be from inflammation due to irritation by something else, could be the C-section surgery that happened to trigger damage to one particular nerve that hasn't calmed down since then.

A surgical scar can trap endo, or have a growth of nerve tissue called a neuroma en.wikipedia.org/wiki/Neuroma

I am glad they have already looked at adeno and Gi tract and you have seen the osteopath etc too. You much have a much better care system locally it would take years to get through those checks in the UK,one after the other, referrals, waiting coping as best you can with pain relief alone.

I can't think of any other suggestions to put to you. Once all have been exhausted it sounds like something that you will have to manage with as best you can if no recognisable cause can be found. Perhaps looking at alternative ways of managing pain, under the guidance of a pain clinic if you have them in NZ?

while continuing to do your own research when the docs have exhausted all they can think of. you never know what might one day do the trick.

Does it feel to be from the scar or not at all?

And something you can be looking at is safe foods, figuring out what foods and drinks are more likely to trigger loose poo, and avoiding those.

Sticking to foods that soak up fluids and try and keep your movements a bit more substantial.

Have your tap water tested if you were okay in hosp, but the problems returned once you were home. Or stick to bottled water for a fortnight, see if that changes things then switch back to tap water and see if the bowel problems return.

I don't know if you are mains water or use water from an artesian well. Well water can easily become contaminated.

Is the pain worse when your bowels are on the rapid move?

that would indicate it must be in someway connected to your digestive tract.

Obviously you know your own medical history much better than we do, these are only suggestions you may want to look at if you haven't already done so.