How to get diagnosis? Nobody can find my condition...

[AbbyP]

Hi, I've just found this site and have felt totally alone for 2 years with chronic pelvic pain. Pestering my gynaecologist who didn't have an answer led to a laparoscopy where Endometriosis was found & removed, but hasn't solved or stopped the pain. I know am confined to a walking stick and wheelchair as I have shooting pains down my left leg, in addition to lower back pain. I've had pelvic floor botox injections privately that gave mild relief for a couple of months but it been getting so much worse. Can't work or live. Has anyone had a similar experience or any advice? Thanks x

[PPSN_JudyB Pelvic Pain Support Netwo]

Hi Abby,

Yes, I have experience with this which in my case is nerve damage which all started with endometriosis. Has anyone suggested this could be neuropathic pain and have you tried any of the medications for this ? also wondered whether you have ever had an MRI scan/seen a pain specialist ?

[AbbyP in reply to PPSN_JudyB]

Thanks for your response, it's really helpful to have other opinions. I have seen a pain specialist and am on a cocktail of drugs to try and manage it but that was 18 months ago and it's only later this month on the NHS I'm having my review of the medications. I paid a fortune to see a private pain specialist last year and he did pelvic floor and lumbar botox and epidural injections to try and stop the nerves from reacting to the pain sensors. I had about 3 months of barely any pelvic pain. I finally am having the injections again on NHS end of this month and really hoping they last longer this time. I'm on Pregabolin, Oxycodone, Tapantadol, Paracetamol, Ibuprofen, and Diazapam for the leg spasms but the cause still hasn't been found and the drugs still not having enough of affect for me to work or live! Sorry long response, but really interested what you said about nerve pain caused from Endometriosis. Stay strong, thanks x

[juliansmom]

I agree maybe nerve damage or hyper sensitive nerves from an old infection or trauma to the area. One thing I know is pain spreads and the more u let it the more it cripples you. Be as proactive AS you can in getting pain relief because no one will give a crap how you live except you. Research and keep seeking out knowledgeable docs. My pain cocktail that makes my life livable is 30 mgs. A day nortriptyline--1 mg. A day xanax- this calms down my brain and body- 10 mg. At night only of cyclobenzapine- makes me sleep 8 hours and my leg works most of the next day.. I also pray do breathing and relaxation exercises. Sorry your in pain. Don't give up. Lisa

[AbbyP in reply to juliansmom]

Yes I totally know what you mean about having to be proactive, no GP or consultant ever seems to give a shit about me or finding out the cause. I've had brain and back MRI scans but nothing has shown up apart from my usual scoliosis. There are so many conditions and none of the Dr's seem to know anything about them, and at the same time it's impossible to keep on top of all the appointments, medications and research through the blinding pain. Thanks for your kind and motivating words. Glad you have been able to find treatment that works for you. Stay positive. Abby x

[juliansmom in reply to AbbyP]

Your welcome. Now I'm not pain free by any means. I've tried all the meds your on and have had nerve blocks done that actually made me worse. It appears when the tests don't show anything we may have hypersensitive nerves. Google this condition. Also try switching from diazapam to flexaril. Worked much better for the muscle spasms. Don't be afraid to tell the drs. What you want to try. They're so confused with patients like us they are often willing to take yourt suggestions