Could it be endo?

Will try to keep it brief... started getting left side pelvic pain about 10 months ago which has been gradually getting worse and sometimes spreads to my back, down my leg, sometimes in the middle of pelvis or on the right side but mainly left. Get really bad flare ups of pain that leave me bed bound for weeks, unable to work and with no energy or appetite. Had lap last June but no endo found. I’m worried they might have missed it because it was a general gynae not an endo specialist? I have bowel symptoms too like really painful bowel movements and constipation/diarrhoea but I’ve had a sigmoidoscopy which came back clear. Keep being told it’s just ibs. Normal pain killers don’t touch the pain, have to use tramadol and am permanently glued to my hot water bottle. Worried that it’s endo, but also unsure because I’ve never had particularly bad periods and the pain doesn’t seem to relate to my cycle? Could it still be endo anyway? Just at the end of my tether being in so much pain and it’s having a massive impact on my life. Don’t feel like I can cope with this pain much longer but keep just being waved off with ibs. Anyone been through a similar situation?

13 Replies
oldestnewest

Your symptoms sound very similiar to mine, they suspect recto vaginal endo and I had an MRI today to give them a better idea. They definitely could have missed it on your lap. I’m also glued to my heat pad and on tramadol which doesn’t help when constipated as I know that makes it worse. You start doubting yourself when you are constantly waiting for a definitive answer and feel like you are getting fobbed off with IBS. We have to remember endo pain can be any day and doesn’t have to always relate to your cycle. I’m sick of overthinking it all now :( drives me insane sometimes. Are you still under a gynaecologist? Xx

Reply

Yeah that’s what I’m thinking, feel like I could have recto vaginal endo but frustrating if it was missed on first lap. Do you have symptoms all month round as well? I hope your MRI gets you closer to a diagnosis, not knowing is the worst part :( I moved out of the area a few months after my lap, so I’ve been referred to a new gynae here who’s getting me to have ultrasounds and then go from there. Not sure what they can see on an ultrasound other than cysts but hoping it’ll help get closer to something. I’m pretty sure my symptoms match endo apart from the period thing which is why I keep questioning myself x

1 like
Reply

I do have pain on and off all month long and points that seem like flare ups but doesn’t necessarily relate to my cycle. My periods aren’t heavy but I am on the pill (I have pill breaks each month), they are prolonged though and I get a lot of old brown blood, which is usually how my period starts.I also pass menstrual blood from my rectum when I have a bowel movement on my period only. Sorry TMI. I’ve had ultrasounds, an endoscopy and a colonoscopy all of which have shown no reason for my pain and symptoms. It’s so frustrating being poked and prodded and not getting anywhere, not that I want endo but at least a diagnosis and reason for the pain would help in knowing we aren’t going crazy xx

Reply

Your pain pattern sounds pretty similar to mine. Frustrating that there don’t seem to be any obvious triggers! I’m having colonoscopy, gastroscopy and CT scan in the next couple of weeks which hopefully will find some answers x

1 like
Reply

It sounds like it could be endo but I have endo and currently being investigated for gastro and ibd since I've lost lots of weight and are constantly constipated have stomach pain and nausea when I eat 😮 I would keep asking to be reffered to endo specialist and maybe a gastro specialist 🤔 Also peppermint oil helps me and cutting out gluten helps a lot 🤔

Reply

I’ve tried gluten free diet and peppermint, neither of them seem to help my pain :( I’ve lost about a stone in a few months when I’ve been having really bad pain flare ups. That’s why I’m not sure whether it’s a gastro thing or gynae... The NHS gastro consultant I saw a couple of months ago was awful, just told me it was IBS and that I need to ‘eat less veg’ to get rid of the pain. Completely unhelpful! Seeing a private gastro next week so fingers crossed they’ll be able to do more. I hope for your sake that you don’t have IBD as well as endo! x

1 like
Reply

Oh no 😢 Have you found any foods irritate you? 🤔 Because ibs tends to be food intolerances and that gastro should know 😮 Have you tried a different gastro? 😮 I know how you feel though peppermint and gluten free are the only thing that helps me slightly but my pain go in flares 😮 Lets hope you get it sorted before you lose 17kg like me 😢 I actually hope I have that because I just wanna know what it is now 😤 Also some of my family have ibd so I can ask them for advice 😮 But thank you 😊 X

Reply

Haven’t found any foods that cause the pain, wish I knew! Yeah I’ve seen a new gastro today who was sooo much more helpful and she’s arranged some tests for crohns... don’t want it it be that at all but I really want some answers 😭 oh that’s so much weight!! I hope they get to the bottom of it soon, sounds like we all just need some answers! X

1 like
Reply

Then it wont be ibs I dont what that person was on about I think some nhs doctors are just lazy and dont wanna test people unless they are lying on their deathbed sometimes 😂 Hopefully you will find whats wrong 🤔 Dont worry too much it could be other stuff that just need antibotics and clear up like gastrisis or gastriparsis 🤔 I really hope they do or at least give anti nausea tablets I'm fed up of being nauseous 😢 Xx

Reply

I've just had my 4th lap for endo and my periods now are almost non existent I bleed for like 1 day and then the rest of the days it's hardly worth wearing a tampon but still have too. They started getting lighter about a year ago but the pains are still horrendous during period and all throughout the month. Go back for a second opinion. Only we know our bodies! My last lap was just Monday gone and I asked them specifically to look at my diaphragm as I was worried about endo there coz of my symptoms and on my bowel coz of sympoms and yep they found it in those areas as well as other places. I've had a bloke doc telll.me before i had ibs and not endo and I called him a condescending prick and asked him if he had x-ray eyes and a reproductive system. Never went back there but then found the wonderful gyne team in under now . Good luck xx

1 like
Reply

Oh that sounds awful, I guess it’s a bonus that your periods are so light though! It’s so frustrating that it feels like we as patients have to be telling them what to do and where to look... kind of makes you lose your faith when they don’t think of things themselves. Good on you for putting that doctor in his place haha! I saw a much nicer gastro today who was so much more understanding, really makes a difference! X

1 like
Reply

Your symptoms sound like endo to me. I've just been diagnosed with endo on my bowel and pouch of douglas but when showing me the video of my surgery my gyne said the endo on my pouch of douglas was so small he almost didn't see it (there were 3 teeny tiny dots). Unfortunately the endo on my bowel is severe so my gyne said that would have been very hard to miss. The problem is endo can barely show and can be very easily missed if the gyne isn't a specialist. I was diagnosed with IBS years ago and was fobbed off by my GP who dismissed my symptoms. Now it doesn't look like i ever had IBS. Remember you know your body better than anyone, if you don't feel like you're getting any where with your GP change doctors. You shouldn't have to to just put up with the pain, keep pushing for further investigations. If you make enough noise they'll have no choice but to sit up and listen to you.

Best of luck!

Xx

1 like
Reply

If nothing comes out of these gastro tests I’m having I think I’ll push for another lap with an endo specialist as it definitely sounds like it could be a possibility. Thanks! I hope you’re coping okay with your endo, you must be relieved to have a proper diagnosis! Feels like it’s half the battle x

Reply

You may also like...