Lindle6 months ago

Have you actually had a diagnosis or will the lap be diagnostic - if so have you had a scan?

ArtyPal in reply to Lindle6 months ago

The lap will be diagnostic and the specialist I've been dealing with said there was not much point in a scan since it doesn't always show. But we've been treating my pains as endo while I wait for the surgery as it seems probable to the people I've been seen by.

I was meant to have the laparoscopy in spring but nothing yet so I'll be chasing it up soon!

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Ess19826 months ago

arty I have no helpful words just wanted you to know you’re not alone. I feel exactly the same my body is held hostage by this disease and it’s horrible. I feel that when I eat my bowels hurt too. Problem is I’m in naproxen which means I have fo eat otherwise I can’t take it. Constant pain cycle.. have also started amitryptaline only 5 days ago I’m hoping that will help.

Wishing you the best xx

ArtyPal in reply to Ess19826 months ago

Thank you for the kind words, it's so reassuring to know im not alone but it also sucks because i hate that this is something you feel too! I really hope the amitriptyline does you plenty good xx

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Ess1982 in reply to ArtyPal6 months ago

I’m ordering the tens machine ‘my ooovi’ a few people on here say it’s good. I’ll let you know how I get on xx

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ArtyPal in reply to Ess19826 months ago

Oooo enjoy!! I got a tens machine from amazon, just one of the wired ones and it's been an absolute game changer - especially if im standing at markets all day! I hope you love it xx

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Ess1982 in reply to ArtyPal6 months ago

I have high hopes now Arty 🙏🏼💛xx

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Endrocoops6 months ago

hiya lovely, recently dignosed stage 4 (operation Monday just gone actually!) I found that my bowel movements hurt on days that I had certain foods particularly red meats and acidic items. Beer would knock me out for count. See if restricting certain foods help and stick to anti inflammatory foods if you can. Just to give you a little hope my operation did show endro on my colon and even though it’s been four days I can now go without pain :)(a little pain from my cut zones but nothing like before)

ArtyPal in reply to Endrocoops6 months ago

Hey! Thats really interesting, I'll definitely look at anti inflammatory foods for sure! I'm so glad the operation has helped with your pains! 🥰 Thank you xx

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Bassem1979 in reply to Endrocoops6 months ago

stage 4 what ?

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Bassem1979 in reply to Bassem19796 months ago

ignore I didn’t read properly my head is cancer focused at the min cause I feel I have bowel cancer got doctors on Monday xx

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Endrocoops in reply to Bassem19796 months ago

I should absolutly be more clear with the term stage 4 now thinking about it with the terminology often used with cancer. Thank you for highlighting it for me and I wish you all the best with your diagnosis and treatments ❤️

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Avourneen6 months ago

Hi Arty Pal,

I have terribel stage 4 endo right through my pelvis and bowel but the pain I have is not like this at all. I basically cannot stand up with pain at all when I have my period but when I don't I just can't go to the toilet and have to take laxatives daily. I have constant pain in my back which I think is caused by everything not working.

It doesn't hurt more when I poo just a dull pain 24/7.

It might be that you have something like Chrohns or something else. But everyone's pain is different. Any surgeon who is a decent professional would not suggest that you have a lap with a scan. An MRI is actually much more effective in showing up endo on the bowel and deep endo and adenomysiosis than a diagnostic lap. By doing this the surgeon might miss lots of endo and he definitely won't see it on the bowel.

I think you should change your surgeon asap any good surgeon uses the scan to see where the endo is and then bases there surgical procedure on that. A laparoscopy is not a tiny operation despite people calling it keyhole. Every op we have causes lots of internal scarring and can make endo worse. I have had two ops and have evrey severe endo but have been told the mess made inside me with loads of internal scarring means it is unsafe for me to have any further treatment.

The first op I had done was like this a diagnostic lap done without any scanning first and the endo was just burned off.The surgeon missed most of the endo as he didn't really know where it was and the improvement only lasted two years and I was back in theatre again.Where very bad stage 4 endo was diagnosed which had spread everywhere because it hadn't been treated effectively the first time.

PLease try to find a doctor who is an endo specialist not a general gynae and get proper treatment. Yu can get a really thorough scan done by an expert for about 400 pounds.Consider that because your surgeon sounds as if his ideas are twenty years out of date.Bowel endo is very hard to treat so you seriously needs someone who knows what they are doing. You would think all gynaes do but the sad reality is many of them know very little about endo. Good luck.

ArtyPal in reply to Avourneen6 months ago

Hey! Thats really interesting actually, I had originally asked about a scan but he fobbed it off a year or so ago so I'll ask again and if it's still a firm no then I'll definitely look at going elsewhere! I'm hoping it'll be a yes because I cant afford to do a private one being self employed but if my luck changes and I make enough then I'll consider that route for sure.

I really appreciate you taking the time to give me all this info, that's really kind of you. X

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Hannah5506 months ago

I don’t have flare ups that seemed to triggered by pooing but my bowels are affected by the flare up

I was diagnosed with IBS at 13 (if that’s correct diagnosis I don’t know) but I have always had looser poo or diahorrra and you get your pattern of knowing what’s an IBS attack and what isn’t. I have no trigger foods for IBS (but find cutting out caffeine seems to be good) which makes life difficult if I was going to the office I wouldn’t eat breakfast as I wouldn’t want an attack in work.

I went through the same process with Endo trying cutting out different things, for me personally it didn’t impact (but everyone is different) my latest flare up started on a day all I ate was a salad

Coming back to the pooing point

Sometimes I have found when I get that everything’s on fire down below and I go and sit on the toilet (use to bring comfort in itself but not this most recent time) and if I pooed it did seemed to help, it’s loose

I go really hot, with the sweat dripping off of me, my abdomen contracts and then my body really cold, in the heatwave I’m there in a fleece trying to warm up after an attack

Any food I eat after an attack always results in diahorrra and during this recent flare up which I’m on day 6 of (days 1&2 were in agony now I’m in severe) food I ate on day 3 and 4 just shot through within an hour the most severe diahorrea I’ve had in a long time where you feel you’ve been scrapped out

Passing water and pooing as hurt this time, I had a contraction everytime as well

I know we are not exactly the same but please don’t feel alone with it all

ArtyPal in reply to Hannah5506 months ago

Hey Hannah!

Thats so interesting, I also have IBS and with these flares it feels completely different from my IBS attacks! I see so many similarities in what you're saying, especially with the sweating etc, I really appreciate you sharing it and making me feel a lot less alone, thank you x

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Hannah550 in reply to ArtyPal6 months ago

Hi Arty, definitely agree these attacks are different and feel different to the IBS ones, which helped me push with the GP that what is going on down is two different things at different times. Usually I find with IBS, I get the bad cramps but when I go for a poo the cramps will then go, this Endo is different.

When I first start getting the Endo symptoms (aside from bad period pain) it seemed to start waking up everyday with a pain and this feeling like I physically had something sat in my abdomen/bowel, be it food or something else I don’t expect I will ever know what - I don’t suppose you had anything similar ? xx

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ArtyPal in reply to Hannah5506 months ago

Yes thats exactly it! When I had my recent one I woke up feeling like something was sat in my stomach and was this weird tight/heavy/bruised feeling but if it's IBS usually cramps that just want to eject everything and then im fine again, whereas with this it can sometimes be food but other times it's out of nowhere or following a day where I did too much

I have a symptom diary that I started this year so I'm hoping once I find someone ready to listen to me it'll help xx

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Bassem19796 months ago

hi

I ve not been diagnosed with Endo, my diagnosis is large fibroids and IBS.

Reading through I have very similar symptoms I wake everyday with abdo pain, feel I need my bowels open. I have a mix of constipation and loose stools and trapped wind. I have back pain and nothing really seems to help ease the pain.

Am on day 11 of serve pain, bowel problems so my version of flare up.

Because I was on Zoladex and was all good then I know my bowel issues are connected to my womb issues as since stopped the Zoladex this has all happened.

My bleeding is so heavy again that my HB is too low that I have to go back on iron tablets. It’s a constant circle.

So fed up

ArtyPal in reply to Bassem19796 months ago

Hey!

That sounds so tiring so I can see why you'd feel fed up! The mix of constipation and loose stools, trapped wind and back pain is something I experience so often as well

I'm so sorry to hear you're on day 11, I hope you get a flare free day really soon, it's horrible when it takes over for so long, sending lots of hugs x

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