I'm new here and really need some advice/help/support. I've been under Gyneocology since I was 14 years old. Long history of heavy, painful and irregular periods and chronic UTIs and kidney infections. Finally got a diagnosis of stage 1 Endometriosis back in January 2014. Had my second laporoscopy yesterday after months of chronic pelvic pain requiring morphine to manage the pain, only to be told my pelvis was clear and no Endo was found. I know this is a good thing in one respect, but the Dr is now saying all they can do is refer me to the pain clinic. I'm only 34 and the prospect of being in pain forever, with no diagnosis or hope of a cure is really depressing. As is the thought of living on a cocktail of painkillers. I've undergone so many tests and procedures over the last few years. I've had my bowel checked and been given the all clear. I've had two separate investigations by Urology and two Cyscosopy investifations and they too have said there are no issues. This is despite having 9 UTIs and 2 kidney infections since August 2015. I'm at the end of my tether and feel so let down by the doctors. I've tried everything to help myself. I've seen a dietician and cut things out of diet (wheat & gluten,caffeine, diary & red meat), I take supplements to help with inflammation, I've done a mindfulness course to help with pain management, I've tried Chinese herbs, acupuncture, craniosacral therapy. You name it, I've tried it. Just at a loss as to what to do now and the doctors seem to just want to write me off and expect me to live with chronic pain. What kind of a life is that?
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Hiya. Totally sympathise, and I'm not sure if my experience is any help but after having UTIs every 6 weeks for years (i have a urethral stricture) I started taking cranberry capsules, 6 a day and came off the permanent antibiotic I was on. These made a huge difference to my life and I still get the odd infection but very rarely. Hope you find some answers. Xx
Not sure who your doctor is but I'd recommend sending your case to the center for endometriosis. Often doctors miss endo or the stop short of investigating further. There are so many reasons why you could have this pain and Dr Sinervo is an expert at it. Even if you can't afford to come to Atlanta he does a free records review and may be able to help just from that. I hope you find relief!!
Thanks Emma99. I had a lap on Monday at a specialist centre for Endometriosis, so I'm assuming they know what they're looking for (you'd hope). Am in the UK xx
This sounds more like Interstitial Cystitis than Endo -- have you been tested for IC? Sometimes that comes with an intolerance to potassium and acidic foods, so even if you cut out everything you listed, those foods could still cause massive pain flares. I was only diagnosed with IC earlier this year, so I'm still tying to understand what works and doesn't within my diet and what causes flares (it's not all diet) -- but you might want to look into getting tested by a urologist that is familiar with IC; it could help you get on the path to a more tolerable life. My life certainly isn't pain free, but at least I have some answers. Good luck!
Thanks for your post kellerfly. I was tested for Interstitial Cystitis back in April 2014, before they looked into Endo, but they said it couldnt be this as my bladder capacity was normal. Having done some reading on this today, it seems that bladder capacity isnt a criteria for IC diagnosis so I'll be asking for re-referral back to Urology to have this investigated. Thanks for your post+fingers crossed for more pain-free days for you! Xxx
I would definitely get tested again, even if it rules it out once more. Did they do a potassium tolerance test via cath? Because yes, bladder capacity isn't the only criteria for IC diagnosis. I don't go to the bathroom 60 times/day like some IC patients. I actually have a hard time emptying fully (among a few other random symptoms) so I have to force myself to go. Not every IC patient is the same. Just like not every cancer patient is the same, etc. I'm sure you follow. Best of luck to you!!
My daughter has severe IC. She uses an over the counter supplement called Prelief. Don't know if available there. Tahes 2 before meals. Works wonders. Wouldn't hurt to try. As to the other, have had pelvic and rectal pain for 3 years. Finally diagnosed with pudendal entrapment. Scheduled for injection in December. I know how hard this is. Never h are of it before. Never dreamed that this would appen to me.
Thanks kellerfly, I'll definately get tested again. They didn't do the potassium tolerence test, so I'll request they carry this out. I think its quite likely I have got it, as my symptoms disappeared after bladder distension which Ive had done twice. Seeious-Ive just looked up Prelief-this looks like an amazing product! Thanks for the tip, will order some+try it out, see if it helps with the pain. I'm sorry to hear you're suffering too. Fingers cross the injection in December really helps. Goid luck! Xxx
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