Bowel issue - Endo related?

[carey36]

Hi, This is my first post, hoping that someone can relate to my story and offer advice on what my next actions should be? So to cut a long story short I finally got a diagnosis in Sept following a year of going back and forth to various consultants, having a number of tests and scans all coming back clear as is the case with most posts I read on here! I was in daily pain, had no quality of life and was at the end of my tether thinking it was all in my head. The Lap was carried out end of Sept and areas of Endometriosis were removed using Helica. I also had Mirena coil fitted as was already on the pill and was not improving my symptoms. Since my operation the constant nausea and fatigue has improved along with the lower back, hip and leg pain. However I am still getting really bad abdominal pain, but it is higher up than before a bit like the trapped gas pain you experience after the op. It tends to come on afternoon/early evening and last for up to 24 hours. I went back to the GP who sent me for an ultra sound which came back OK. I also have noticed a change in my bowels but now Mirena is doing its thing I can no longer tell my monthly cycle although I do notice increase in pain when I get this dark brown discharge. GP has given me some anti-spasmodic drug to see if it improves my symptoms and I am to go back in Jan for review. I asked the GP if Endo was on my bowels would the consultant have seen that when he did the Lap and was told yes he would but not if it was well hidden. My question is has anyone else experienced this intense stomach pain which seems to be sitting along the left side of my rib cage along with bloating? GP said if it doesn’t improve she will have to refer me onto a general surgeon for further diagnostic tests. I don’t want to waste time going around the houses again, if there is a chance its Endo related. GP seems to think this is something different going on but I am not so sure. Any similar experiences shared would be much appreciated

x

[KatieTattie]

I have experienced a similar situation! In a massive rush at the moment (xmas eve n all) so I will try and post back later today. Just wanted to let you know as you've not had any other replies n don't want you to think you're going nuts x

[KatieTattie]

Hi so I've finally got chance to reply! I think the pelvic pain and nausea have improved due to obviously having the Endo removed. Nausea can occur when there is inflammation due to prostaglandins released. Regarding your upper pain I have theory that progestetone causes your bowels to become more relaxed causing constipation. It took me a while to realise that this was the case for me as I always had a bowel movement everyday but just not enough of one! My upper abdo pain would occur after I ovulated and last until I came on my period. I think that the swelling for the endo plus the progesterone being released caused this and I had to make a special effort with mild laxatives at this time. Things have improved since I had radical excision in nov so I'm hoping to see more improvement! I think I'm right in thinking that the mirena is progesterone? Maybe this could be the cause of your upper pain. Good luck. Any questiond just message me xx

[carey36 in reply to KatieTattie]

Thanks for this advice. Did you have mirena fitted and then notice these symtoms or other way round? I did notice that my pain was always worse pre period, would Mirena stop ovulation? I'm hoping the symtoms will improve in time as was told it takes between 3 and 6 months for it to be effective. xx

[charlamine21]

Hi just to say your not alone with this type of pain in upper abdo below left ribs, I have been suffering with this for around 5 months now and have tracked it to start when ovulating and it carries on to just before period starts and then is fine, not been back to doctors regarding this yet . I was diagnosed with endo after a lap in 2007, extensive clearing of endo was under for just under 2hrs in the end, none was mentioned as being on bowel at that point. But since my periods have returned after about 7monthd after having my little girl. Pain has been getting progressively worse again so New Years resolution is to get myself sorted!!!

[17yearoldgirl]

Hi, after i had my lap in june last year my dr noticed that i have a extended bowel and endo, he sent me for a ct scan that showed the same thing, October this year i had a colonosgpy which showed that everything is normal- very confused with this but... so its all because of my endo, my doctor thinks that its on my bowel casing it to hurt when my bowel moves, pain underneath my ribs, i also have pain down my legs, round my back and on my hips, if i was you id ask/politely demand to see a bowel specialist or to get the colonosgpy done! to see if theres anything wrong inside or is it just your endo!

I wish you all the luck!

if you want any more information fell free to message me any time.

good luck x

[CubaTrekker]

I have suffered with endo on the bowels for years. If I discover a solution I will let you know.

My only advice is not to suffer in silence. Check out where you can get the best help and always seek second opinion.

The biggest problem I have found is lack of consistency. Having an understanding GP helps, I have been lucky on that front but have been to several hospitals.

I refer to my pains as an endo monster. It feels as if there is something wondering around in there and after 20 odd years it has become the norm but it is probably time we parted company!

Wishing you all the best, Penny x

[carey36 in reply to CubaTrekker]

Thanks Penny

Do you think I should ask my GP to be refered back to same Dr that carried out the Lap or a bowel specialist?? I don't really want to start going round in circles again with hospital departments xx

[CubaTrekker]

Whoever you see they need to know what is going on inside you as much as you do

I plan to have an MRI done and to send the report to my most recent consultant and my previous one. Doesn't do any harm to get two opinions.

Can you arrange to hsve an MRI?

[carey36 in reply to CubaTrekker]

I am going to ask for one as you are not the only person who has said the MRI will show what is going on

Thanks and good luck with your battle to get answers!! x

[janeingirona]

Hello. I also get pain right under my left ribcage, which can last for several days. I've had it for years and had all the tests (colonoscopy, mri, endoscooy etc.) and they're all normal!

I just think it's bowels/wind as it's where the transverse colon is and and perhaps stuff has trouble getting round the corner!

I have also recently started having a new symptom. It's a strange feeling to the right of my belly button and up to my right rib cage that feels like there's a creature moving around in there. It reminds me of when of baby movements in latepregnancy. It's not painful but it's not nice either! Anyone ever have anything similar? It's beginning to worry me

[carey36 in reply to janeingirona]

Hi

No I have not had this but have had burning sensations around my belly button, I just put this down to scaring from the Lap I had in Sept. My stomach does make lots of werid sounds and I do feel like I have a lot of gas (something I never had before) and bloating. If I was you I would get this checked out at the GP