Awaiting a diagnosis, would love to connect with others, as feeling so low

[Mindfullness4791]

I'm mid 40s and for the past 6-9 months I've been having bowel/abdo issues - including constipation and then urgency. I also have constant abdo pain, predominately in my left hand side that gets much just before and during my period. This month I feel like I'm in some kind of flare as the pain is not subsiding. Shooting pains on my left hand side that radiate to my back and my whole abdo area feels like it us on fire 🥺

Scans, fit test and ca125 for cancer all negative. I have been referred to gynae as this is what my gp believes I have.

I am so low being in pain all the time and stuck as paracetamol barely touches the pain but codeine type meds make me constipated, exarcerbating the bowel issues. I'm getting some relief from hot water bottles. I had a mirena fitted a few months ago to see if that would help.

Does this sound like endo? I've had children in my 20s.

Thank you for getting this far. I just want my life back 😪

[Endrocoops]

your symptoms sound similar to what I’ve had recently :(. I had a blood filled cyst on my left caused by endro. If it gives you any hope I can confirm that my keyhole surgery to remove endro that was on my colon has relived my bathroom pain! I did find that either taking a daily stool softener pill or avoiding inflamitory things like beer helped a lot. Paracetamol didn’t touch it for me but ibuprofen helped a smidge, salt baths helped me the most as simple as it sounds.

Worth looking into the term “endro belly” you’ll probably find yourself noticing the symptoms.

And please keep a log of your daily pain the gyno will make decisions based on it.

1 in 10 of us have this condition you are not alone but keep pushing to be recognised as this isn’t an easy ride. And worth noting that so many people have very different symptoms and stages (stages range from 1-4) some feel next to no pain and some can’t leave the house.

I hope this helps a little and good luck with your diagnosis x

[Mindfullness4791 in reply to Endrocoops]

Thank you so much for taking the time to reply. I'm so glad the surgery has helped and gives me hope 🙏

I definitely have all the signs of Endo belly. My gynae appt is in a couple, so fingers crossed I get some answers xx

[Purple_Badgers]

Hi! Mid-40s bowel endo sufferer here. You could have endometriosis and hopefully your gynae will investigate this thoroughly and get you some answers. In the meanwhile, you deserve more help to get your pain and bowel symptoms under control. I avoid codeine as I seem to be quite sensitive to it - it makes me super drowsy or “high” feeling, gives me awful nightmares and terrible constipation. But there are all sorts of other painkillers you could be prescribed that shouldn’t make you constipated. I take paracetamol, naproxen and nefopam daily, with omeprazole to protect my stomach and mebeverine for the bowel & bladder cramps (an anti-spasmodic, like a stronger buscopan). I also take a daily maintenance dose of lactulose to keep my bowel moving. I didn’t get on with TENS machines, but hot water bottles, stick on heat patches and my plug in heated cushion are my friends!!

It’s about finding a good combination for you that doesn’t exacerbate your symptoms and has side effects that are manageable. Please ask your GP for more options. Good luck with your gynae appointment xxx

[Mindfullness4791 in reply to Purple_Badgers]

Thank you so much for your reply, I will look at the options you have suggested. Ive been on to the gp and all they keep saying is I have to wait for the specialist appointment 🥺 xxx

[Starry1977]

hi m 45 and only diagnosed with endo this year . I’d never really had any symptoms until the last few years when my periods got heavier and more painful. I put it down to age. I had an ultrasound in October that showed a endometrioma on my left ovary. My symptoms were aching leg and groin and deep hip pain on the left . I had a lap in may to remove it but it showed stage 4 endo with severe scarring and nodules in the pouch of Douglas too. I also get constipated and also need to go, no in between ! Luckily though I don’t have lots of pain just pressure really. And since my surgery the hip and left side aching is 90%better.!

[Mindfullness4791 in reply to Starry1977]

Thank you for your reply. Im so glad surgery has helped. I get the pains and aching in my thighs too. My fear is they don't find anything, as all the scans were clear and I don't have answers as to why I am in so much pain.

[Starry1977 in reply to Mindfullness4791]

Did you have ultrasound or mri? My ultrasound only showed a cyst. My insides are quite a mess but none of that was see on ultrasounds. The mri showed alot more if you can get one of those.

[Mindfullness4791 in reply to Starry1977]

I had an ultrasound of my ovaries, uterus, bladder and kidneys. It's awful as you don't to wish ill health on yourself but there is clearly something wrong with the pain i've been experiencing. Fingers crossed they will offer me an mri 🙏