Hi I am looking for some advice and support about what to do next. I gave birth vaginally to my son in August 2014, it was a quick labour with a very quick pushing phase, I had 3 tears including one 2nd degree which was sutured and they all healed fine. One month later I started having severe neuropathic pain around the urethra this spread to the whole vulva. Over the months since it has spread to the anus and I get painful internal muscle spasm in the vagina and rectum. Overall the pain feels more internal now although I still get vulval and anal pain. I also get pirifirmis spasm which gave me buttock pains and bilateral sciatica, severe at start but now only if I walk. I also get lumbar spine pain if I walk also.
-initially constant urge to pee, often painful, this has lessened over time but I never really have an idea when I actually need to wee
-urinary incontinence probably due to weak pelvic floor that is bowed(Shown on Mri)
-Mri pelvis -damage to the pelvic floor described
-Mri neurography normal (often the case)
-Mri spine ok
-urodynamics ok apart from the frequency
-cystoscopy-some tiny haemorrhages the surgeon said could be interstitial cystitis but other docs disagree this is the cause
So I have tried
-amitriptyline -have been up to 70mg-It has helped a bit with the neuropathic pain
-pregablin -could just about tolerate 75mg and this helped reduce flares following my 2nd nerve block. I also take carbamazepine for epilepsy so I have seen a neurologist and we need to balance side effects and pain control and making sure I don't fit if we change epilepsy meds which is needed as carbamazepine has made me osteoporotic
-physio -seen a women's physio regularly who does pelvic floor trigger point release which can give some temporary improvement but long term I don't think it has helped that much. We cannot strengthen the pelvic floor as there are tense areas due to the pudendal irritation
Also seen a musculoskeletal physio who has used manipulation/acupuncture and exercises -it has helped reduce the sciatic pain but that's it so far.
-nerve blocks -at the ischial spines, X-ray and electrode location by Dr baranowski. 1st block -no change
2nd block -an amazing 25% improvement in pain severity and frequency. 3rd block also given with pulsed radio frequency treatment -since this block my pain has got much worse and 5 days later it's lasting longer than a flare and I am worried the pulsed treatment has worsened things
-clonazepam -took my first one today as pain severe and it helped a bit but mostly just calmed me down as I have been quite low today. Not something I want to take regularly but it gets to a point u will do anything for release.
So add a new baby to this mix and all the emotions I have been through with not being able to look after him like I wanted. I could not lift him for months it was too painful. We have a nanny we can't afford, she's good but I resent having to have her there. Mounting private healthcare fees that my family are kindly helping me pay for. It's unlikely I will be able to get back to work anytime soon at least. I have thought of selling the house but we are not there yet. I love my son so much but I just don't think I am gonna be much of a mum for him, I have already made him suffer by not being there for him. I don't know how my partner does it but he does however he is smoking again taking meds to sleep and just about coping. since the 2nd block I have started to gain some more independence in caring for him but since the 3rd block this has disappeared and and I am back months and angry that I allowed myself to have this treatment that has destabilised things. I am feeling suicidal again. I feel the hope I had of inproving is dwindling.
So I apologise for long post but it's been a hell of 9months. I am looking for support from others going through the same thing. Especially if there are any mothers out there who have been through the same thing. Also if anyone else had the pulsed treatment and had such a bad response to it like me. And what's next? Where do I go from here. Thanks for reading Xxx