Advice/help please!

[HelenLucy]

Hey ladies! Just looking for a bit of advice/reassurance that I'm not going mental!

I got admitted to hospital on Friday night via ambulance, had the most intense waves of pain I've ever had and pretty much collapsed on my boyfriend. Internal and external ultra sounds show poly cystic ovaries (which I already knew) but the pain and bleeding was most deffo Endo.

Now the consultant is saying that I was passing a kidney stone because there was blood in my pee test! (Duh, obviously if I was bleeding!!)

Do any of you have Endo that is mostly settled but with the odd flare up? I can accept that I may have stones, but think he's setting on that as the explanation because he has "proof" rather than exploring the endometriosis. But can Endo change after having a mirena for nearly 3 years??!!! Do I push for another laparoscopy to see if much has changed??

Any help muchly appreciated xx

[Tboag]

Hi, hope your feeling a little better, last year I ended up in hospital due to intense pains, I'd been having pains for months and they found a stone whilst investigating pains, my pain where in pelvic area groin hips and low back, the docs all said that it was not usual pain for kidney stone, but refused to look any further until I past the stone, I had lithotripsy and past the stone but have still got all the pains, so I think it was just coinsedence that they found the stone, and it was what I'm still going through now, gyne doc suspects endo or adeno, so I've got a lap on the 21st March,

Sometimes it's the easy option the docs decide to go with,

Did they see stones or just suspect,? And when you got diagnosed with endo, did they cut any out?

Good luck xxx

[HelenLucy in reply to Tboag]

Hey, thank you for replying! They haven't seen stones, just high white cells and blood in my pee yesterday.....today neither are present! I've had lots of treatments for my Endo: zoladex, laparoscopy with lasering of Endo spots, and mirena coil. I've also had spinal surgery through my tummy, so am wondering if it could be adhesions. Am just finding it so frustrating that he is set on stones when I know that's not the cause!

How are you coping now? Xx

[Tboag in reply to HelenLucy]

Still in pain, not like when I was in hospital, but still bloody painfull, and very fed up with it, can't wait to have lap, need to know what it is, gyne doc said he will cut any out if endo is found, I'm more worried that they don't find anything xxx

I would go back to Gp get referred back to gyne.

[moxyfilms]

Yep, my mirena was in about year 3-4 and I collapsed with shooting pain in my right side (I've been developing consistent symptoms in the area along with other consistent pains over the past year or more). I've had two laparotomies and left oopherectomy, been using the mirena successfully for about a decade-ish but mine seemed to have given up as I was bleeding a lot and increasingly in pain. GP and A&E both are thinking there could be gall and/or kidney stones so I've been referred for an ultrasound and also to an abdominal pain clinic (don't know what they do but when it's offered you don't say no... let's just rule everything else out) but I have gone back to my GP many times since because I've been unable to work and it's been ages now, this can't be a stone. I've requested to be referred to a gyne consultant of my choice (a doctor who is on the accredited BSGE list) and because of my existing diagnosis and past treatments, and the note taking and evidence I've presented him, he has made the referral.

I'm waiting for all of these things to happen and I've no idea what the timeline will be but all I can say is press your GP for the correct help. You've already been diagnosed. Go armed with all the info you have about your case, or start writing it all down. He can't really deny you this referral.

I really hope you get seen to quickly, and that all ends well xx

[HelenLucy]

Morning! Thank you, I just didn't know if it could grow / spread with a mirena in but clearly it can. The pain dropped off yesterday but this morning it's raising its head again. Apparently gall stones are common if you been on pain killers long term so I'm going to ask about that......it's just so hard fighting all the time, and especially worse given that Ive been mostly good (with a few relapses) for 2 years.

But likewise, I don't want to put myself through a lap to be told that nothing has changed! Hate this disease!!!! Xxx

[angelyn]

You can still have blood in your urine with endo. I have blood in my urine and I have bladder endo.

At the very least if they suspect stones they should do a kidney ultrasound.

They should also do a urine and blood test to check for infection.

Bladder endo tends to show up only in a lap and possibly mri/cystoscope.

My ultrasound showed nothing but they found bladder endo during my lap.

Xx