dizziness and falling

[vonie]

hi guys i have severe stage 4 endo and on loads of pain meds though have been taking them for over a year. i have had light headedness for years , comes and goes with no particular reason. i often get a shaking feeling like flu and feel like i cant get enough air, there are no issues with my heart or lungs and anytime its checked my oxygen stats are good. more recently the light headedness has gone to proper dixzziness and i am falling a lot, at this point i should mention that i have a big mass on my right side that compressess my main vein to my leg so falling isnt unusual but these falls are related to the dizzyness, it comes from nowhere, can happen standing, sitting or walking. its not pain meds and i am really careful with fluid intake so its not dehydration. last year i was in hospital for nearly a month and was told i had low blood pressure but since being out anytime its checked that is also fine. i have been checked for diabetes as high sugar foods like chocolate help for the very short term but again my blood sugar level was good. i am told my endo is as bad as bad gets and docs on nhs said there is nothibg they can do for me though i went private and they are willing to try surgery, i am scared to go for surgery till i know whats causing the dizziness, i am also having problems with short term memory but that could be pain meds and lack of sleep, pain makes proper sleep impossable. i use a crutch to help me walk and was given a wheelchair because of the fatigue/falls, there are sites i read that say my symptoms can happen to women during heavy menstruation but i have been on a jag to induce early menopause for over a year (decapeptyl) so it cant be that either, i am wondering if anyone else out there suffers any/all of these syptoms. the pain meds i take are gabapentin, tramadol , cocodamol, lidocaine pain plasters, i also take cinnazine for sickness, omneprazole and senna. I would realy appreciate any help or advice. wish you all a pain free day xxx

[Tboag]

Hi, you poor thing it sounds like you have been through the mill, is your gyne doc on the bsgge list of specialist for endo,

Just a thought but have you tried tablets for vertigo, my motherin law has just been told she has it, and has been given tablets, might be worth a try.

Good luck xxx

[Bevsymon]

I had dizzy spells and low blood pressure for a year before my pelvic pain began. I was tested for vertigo then was diagnosed with vasovagal syncope which is just fainting and then my breathing was shallow so I had lung x ray which was fine I also lost a stone in weight quickly before passing blood from bowel and having a camera to be told inside bowel was fine. I then had abnormal smear and had surgery for that. 12 months later I felt I was dying so weak so dizzy and breathless tired and thin then diagnosed with 3 cm cyst and the gynae said this was too small to cause pain and discharged me. I ended up paying private for severe endo diagnosis in dec 2014 and had rad hyster in feb 2015 with excision endo bladder bowel and pelvic adhesions fixed - feel good now but what a year!!! - don't let the drs say they can't do nothing I find that utterly disgraceful like lindie says find endo specialist - good luck and stay strong x

[AmyLee]

I so feel for you and think you have been treated dreadfully. So glad to see the great advice you've got from Lindle.

I've had many if the symptoms you refer to for 5 plus years, fatigue and dizziness being most extreme. My docs at a loss and recommended Prozac. Made me run a mile, to alternative health / yoga / CBT therapies. These didn't help me get diagnosed but kept helped me cope.

So 2 things I'd suggest from my experience. Find a recommended excision specialist, get a lap done to identify extent / what can recommend for you. Then another thing that I'm moving onto consider is I've had extensive excision surgery but not improved and know I have adenomyosis - the fatigue and dizziness are more common with that I believe then endo. So I shall be asking consultant what my options now are - hormone treatments, hysterectomy? All the best. Take Lindle's advice and find some capable medical 'hands' xx

[Brownlow]

I agree with Lindle 100% and urge you to get referred to an endo specialist. I hope she has been able to help you with this. The list of centres is here bsge.org.uk/ec-BSGE-accredi...

I don't know how you can conclude that all these meds are not causing your dizziness and falling and I suspect you have been told this by your doctors. As Lindle mentioned, these are possible symptoms of endo but your drug intake is also a highly probable culprit.

It also sounds to me as though your GP is mismanaging your situation. I suggest you look into changing GP.

Good luck with getting the appropriate care and treatment. x