Pain not constant...?

[FallenAngel1984]

Hi guys, from reading on this forum I see that most suffer with crippling pain for hours/ days... I do not... I have pain that builds from nothing up to about an 8 where I have to stop what I'm doing and breathe through it for a couple of minutes and then it goes away. What is this about? Anyone else get random pain like this? Also I get the same sharp pain when I open my bowels... During... After, the pain subsides... It's annoying because I can't treat as it happens randomly... Am I going bonkers? Just want to see if I'm alone with this or if it's even endo causing it... Help! Seeing a specialist this afternoon and want to make sure I'm not wasting his time... Thanks all 😊

[Greencupcake]

I get the same bowel pain and the pain tha builds. I get this during my period. Your definitely not wasting the specialists time. Hope the appointment goes well. X

[FallenAngel1984 in reply to Greencupcake]

Thank you for coming back to me... I honestly began to doubt myself, like I was making something of nothing. It's really painful but for 5mins or so and then it's gone, during my period it is more a constant crampy feeling interspersed with these episodes. I've been waiting for this appointment like how a kid waits for Christmas -impatiently and excitedly... 😊

[Greencupcake in reply to FallenAngel1984]

Your welcome. Don't doubt yourself as its your body and you know it best. How did you get on at the appointment? X

[Adele-84]

Hi there, I also get the same. My endo pain is very bad during my period, and flares up at random during other times. For example with exercise, or just a random shooting pain. I often get a rectal pain which is like someone stabbing a knife up my bum ( Sorry tmi) which lasts for a couple of minutes at a time. I understand how you feel as pain killers do not control this. I have an endometrioma 7cm inside between my front and back passage, I'm pretty sure it's this that causes the pain. I have a lap planned for Oct so will hopefully get some answers. How did you get on with the specialist?

[FallenAngel1984]

Hi girls,

So I saw (not a specialist) just a run of the mill gynae yesterday.... In a endo clinic (I think). I was supposed to be seeing the specialist consultant but he wasn't in... Ffs! Anyway. I went through everything with her and she was lovely... She said given everything I've said and the fact that I've been on contraception constantly and the symptoms haven't abated she thinks surgery is the best route however... She wants to do an MRI first to see how severe and also where it is so they can get the correct surgical team together... In my case likely to be an endo gynae and bowel surgeon.... She said she will put me on the urgent list for the MRI and also put me down to see them in 6 weeks time to discuss the outcome and what is next. I queried whether endo could be seen on MRI as I was under the impression that it couldn't. She said that she didn't think so either until she came to work there. Apparently they have a flashy MRI scanner that is very sensitive and also people that are specialists at finding endo on MRI so I felt more confident that it wasn't a waste of time. So now I just wait.... Again!!! I seem to be in a state of flux waiting for appointments. Oh well, we'll see what the next few weeks bring!

[Lilo915]

You aren't alone, I get the same sharp pains before and during every bowel movement but it's alleviated afterwards. Really hard to describe to people unless they've felt it themselves lol.. I also get the build up of pain throughout the month, not just when I'm on my period. You definitely aren't wasting anyone's time though, the pain is completely real and you should never second guess yourself, you know what your body goes through. That flashy MRI sounds interesting. Do keep us posted on the findings, and don't worry too much about needing a bowel surgeon in theatre, I freaked out because they told me the same and I was convinced I was going to need bowel surgery but they just keep them on hand as a precaution. As long as an endo specialist performs the actual surgery you should be fine, they know exactly what they're doing. All the best Hun x

[FallenAngel1984 in reply to Lilo915]

Thank you for your reply.... Indeed it's hard to explain the pain to someone who doesn't know... I say to people imagine sitting on a spike and it going up your rear pipe!! Ouchies!!! 😊 I wasn't freaked out about the bowel surgeon part - more the what ifs of bowel surgery... Will there be damage to my bowel, what if I have to have a (temporary or otherwise) bag... Eek... I know I'm probably worrying over nothing but these are very real possibilities of endo on the bowel aren't they? How were you after your surgery, pain relieved? Do you suffer with constipation too? I always feel bloated - probably related to the constipation... This is absolutely wretched! I can't wait for them to operate and cut away this crap from my body! 😄

[Lilo915 in reply to FallenAngel1984]

Yup that's how I'd describe it also lol. There is a chance of it being on the bowel but I'm my case and in many other cases you can have endo on what's called the Pouch of Douglas (a cul de sac area between your rectum and the back of your uterus) which causes a lot of bowel symptoms for some women. I was exactly like you, so afraid of the possibility of bowel endo and needing a bag but my surgeon reassured me afterwards they couldn't see anything on the actual bowel but there were a lot of adhesions in that area and endo deposits which would explain all the pain. So hopefully that is the case for you too and you won't need any bowel surgery I don't want to discourage you but I actually got no pain relief from the surgery in terms of bowel pain.. Possibly due to scarring or the endo growing back but the surgery did help other areas where it was affected. And sorry I can't say I know too much about constipation because I'm quite the opposite lol, not diarrhoea but needing to go to the toilet like 3 times a day minimum. Oh the joys of having no dignity when it comes to endo lol! I hope the surgery provides you relief and it could even change the regularity of your bowel movements for the better!

[FallenAngel1984]

You leave your dignity at the door with this disease!! ☺ the amount of people that have had a good look and feel of my what not, you learn not to be phased anymore... Whip the keks off, lay on the bed and assume the position! Feet together, flop knees down etc... 😂 I'm sceptical about the MRI if I'm honest but you have to go through the rigmarole don't you!?... I've given up hope of this all being sorted before my wedding!! I just checked and I'm due on halfway through my honeymoon!!! Excellent! All I can do is hope that it won't be a terrible month... Sometimes I'm given a bit of an easier time... Fingers crossed.

It's nice being able to speak to someone who knows and understands how you feel... When you aren't outwardly sick people tend to forget... The symptoms are pain, nausea and fatigue all of which can't be seen so folks think you are making more of it... Fun times!!

[chloe-iona]

I also have what you describe! So glad it's not just me. I was starting to doubt myself!

[Gweeda]

It's really common for the bleeding from endo to get caught in 'the pouch of Douglas'. I just has a large cyst (they called it a chocolate cyst because of its colour) removed from there. It eventually can form a cyst which (I was told) is a collection of old blood. Someone recently told me this is also an endometrioma.

I also had a lot of bowel problems, building steadily over the years. If in doubt, get checked out x

[Gweeda in reply to Gweeda]

And just so you know, despite having stage IV endo etc, I have had the op, all bowel stuff seen to and have no bag. It was the first thing I felt for when I woke up! x