Severe endometriosis

[Sarahclayton]

I was diagnosed with severe endo last month after a laparoscopy but have suffered for ten years and still suffering I take painkillers for the pain and to stop the bleeding as I haven't stopped bleeding since I had the coil put in 6 weeks ago. I can't take much more of this I also have sereve depression because of the endo I just wondered if anyone has had surgery and if it helps as that's my last hope x

[Nezumi]

Hey Hun so sorry to hear you're not doing well. I'm new to the site & have literally just had my op on the 2nd of Jan to get rid of the severe endo I had. Mine was on my bladder & umbilicus so not looking pretty at the mo & feeling quite sorry for myself.

It took around 12 years or so for mine to be diagnosed too so I understand your frustration. I won't know for awhile if the surgery has helped but I'll try & keep you updated with it if that will help your decision at all? Xx

[Sarahclayton in reply to Nezumi]

Yes please that will great thanks Hun it helps to talk to people x

[Nezumi in reply to Sarahclayton]

Then I shall try & keep you posted. Do you mind me asking where yours is located? I've got a couple of friends with it too who have had surgeries so if theirs is similar to yours they may have more I for for you!

Mines 'rare' apparently so I'm kinda stuck in the dark with it & worried too xx

[Sarahclayton in reply to Nezumi]

I have it on my uterer the tube from my bladder to my kidney a big lump of it x

[Nezumi]

Ah ok so my surgery will help you more then. Mine was on the bladder wall going into the top of the bladder. So I shall keep you posted on my recovery & hopefully it will help your decision to if you want to go ahead with it yourself.

The thing that swung it for me was the fact that's it most probably going to get worse & continue to scar & damage the bladder. Plus if I do decide to have children the hormones it emits will cause problems.

I don't know how much yours hurts you, most of my pain was from my belly button as I had it there too but I was always the butt of the joke knowing where the loo was as it did irritate my bladder a lot! Xx

[Sarahclayton in reply to Nezumi]

I'm the same I always need the toilet I have three beautiful children and have been sterilised so can't have anymore I just can't take the pain as it's just to bad xxx

[Nezumi]

Awe Hun well I'm glad you've managed to have children already. I've not really thought about it yet, though time is ticking!

If you're in so much pain & you've tried everything then I'd kinda think what's to lose with trying this as the last resort? Though the recovery is a bit of a mission. I'm wearing a catheter for two weeks, then need a cystogram before they can remove it. Once it's taken out my bladder needs monitoring & oh I could be incontinent for a 'little while' worst case scenario. I might need the catheter back in if I retain water but again these are worst scenarios. I'm telling you though as they failed to tell me this pre op! Apparently most people's bladders settle back to normal fairly quickly. But like I say I will keep you in the loop so you have a better idea for your decision making.

My bladder would only hurt when full around my period so wasn't as bad as the symptoms you're decribing. But as my belly button was being done they wanted to get rid of it all which makes sense.

I hope I haven't scared or upset you with this, I just wouldn't want you going into any decision without all the facts unlike me! Xx

[Sarahclayton]

I have pain in my bladder when full at time of my period there worse I have constant pain in my back and side it is the last resort and I know it could go wrong but it's my last hope x

[Nezumi]

Well give me some healing time & I'll talk you through my process at least you know someone now with it affecting the bladder. Apparently we're a rare bunch! Xx

[Nezumi]

Hey,

Thought you might like an update! Had the catheter removed on Thursday. The cystogram was weird but not painful at all, just makes you feel like you really need to use the loo! Doesn't last long either so if you need that which I'll presume you will don't worry about it at all as its a breeze

Ok so now the catheter is out my bladder is now working alone. It is more painful now as the bladder has shrunk & needs to stretch again. It's also been cut up so its not too impressed. So expect some pain, mines not all the time but a bit sharp when you get it. I'm also finding emptying the bladder at the end is a little painful from the pressure I think.

My belly button was removed & reconstructed so I'm getting pain there too as my bladder is now pushing against the muscles so that's a bit sore.

I must admit it's still not feeling like my bladder used to & need to get used to it, but as its still healing it might just be that.

You will need to go a bit more frequently & when you think you need to go don't leave it too long as once you see the loo your bladder pretty much gives up lol so get to the loo with time! Realised this on the first time I used the loo & left it almost nearly too late but disaster was averted! So just a heads up for you

The catheter removal doesn't hurt either, little bit of a sting but nothing too nasty so don't worry about that either.

Anyway let me know if you want anymore info! Hopefully I've covered most things. I'll update you a bit more in a week or so once my bladder is a bit more healed.

Oh you'll need to go during the night too, but apparently this gets better as the bladder heals & re stretches.

Xx

[Cazturner]

I had severe endometriosis used to be really heavy each month and severe pain. Only diagnosed after being hospitalised with breathing difficulties after a ct scan a mass was found so was opened up to reveal a cyst caused by endometriosis as big as a rugby ball. Ended up having one of my ovaries and tubes removed. Got cyst removed just in time! After I had a merina coil fitted. Since then no pain no periods either my life has been changed. So for me surgery actually saved my life without it I was told I would have died as the endometriosis had gone rotten.