Here is a place for social chats with special attention to support and non medical discussions. We need a place to chill out, where we can distract from our pain and enjoy lighter moments, share a joke or funny moment with others.
Thanks Calluna, I will, (not really) I have NO sense of achievement and think it's all so difficult with age and affliction getting the better of me! Excuses, Excuses! ! Think I'll try swimming when the kids all go back to school. I definitely won't give up. Only need 2lbs more off to duck under the magic next stone down, how hard can it be. . . . think we all know the answer to that one
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Hey, Diet and losing weight really does help with Pelvic pain and problems, because the less weight your pelvis supports the easier it is for our problem. I have lost 40 pounds and my parents lost 77 pounds each without exercising really at all. Losing weight has also helped my back pain. I have written a book which you may read for free at an open Facebook group I started at http://www.facebook.com/groups/13766422 ... 229662185/ for anybody wanting to read my diet book for free, support from other members, diet tips, recipes, healthy snacks that dont taste yucky:) and advice on how to lose weight like my family has. Please also consult your doctor before doing any diet.
Shawn
Bringing Help Awareness Education to Patients & Doctors about PNE through Videos at http://www.YouTube.com/PudendalNerve & PudendalHope.com Please tell Dr. Oz to cover topic of PNE by going to http://www.doctoroz.com/contact Started 1/2010. Initial urinary tract infection in 1/2010. Medication: Diazepam, Tramadol. 4 nerve blocks. physical reinjury 8/2010. 7/2011 Potter MRI Varices dorsal branch 8/23/11 Diagnosis Entrapment of Dorsal Branch Dr. Lee Dellon There's Always Hope!
I learned something after my recent surgery which may give some insight as to why I've struggled with my weight all my life - apparently I have polycystic ovaries. I've had very light, irregular periods, and spots (acne) until I reached menopause. Interesting, hmm?
On another note - I'd be really interested to know more about your diet, Shawn. But Facebook is terra incognita for me, and likely to remain so, I think. Could you tell us a bit about it, do you think?
Anyone else still trying to lose weight? I'm not alone, am I?
I really don't want to stay at this weight, I am fed up with my clothes not fitting comfortably apart from anything else. Difficult at the moment, my activity level is of course way down, not walking with the dog at all, and I am missing that. It is early days though.
I've just started to take the pregabalin down, after my surgery, and very much hoping that I'm actually going to lose some weight soon.... my target of losing 30lb is currently a target of losing 33lb as I do need to get back down to my starting weight!
I have gone to stale mate. . . just stuck, stuck, stuck! I promised myself I would go swimming . . . and haven't so I am my own worst enemy. I am with you Calluna and am mainly eating watercress soup today. . . . but that would go so well with some lovely warm buttery bread. No NO NO!!!
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Oh you are not alone, anything I do to lose weight tends at this point to just contribute to the battle to stay even instead of gaining. I am placing the blame squarely at the door of nortrtiptyline, as prior to starting that med losing weight was easy and staying even was a total no-brainer. But my weight has wanted to inch up ever since I "withdrawled" (I don't think that's really a word, lol) from tramadol and got onto the nortriptyline. It's a constant struggle just not to gain. I am also disgusted with the way my clothes fit and sometimes I think of going off the med, but then I do remember getting a definite increase in relief as I started nortryptiline and titrated the dose upwards, and I really am not in the mood to feel worse. Seeing as I am having the tarlov cyst surgery this winter (still no date, but it's happening), I am just going to live with the unhappy status quo and fight not to gain any more weight, until then.
Shawn, after my daughter was born in 2004 I lost 150 pounds in 14 months, and maintained it until 2009 when my PN became very severe. So while I appreciate your trying to help do please also realize that some of us absolutely know how to do weight loss under normal circumstances, but we are not currently living under normal circumstances. Fortunately I didn't gain all that weight back, but I have gained almost half of it back and that in itself stinks! I haven't looked into your weight loss plan because I don't believe anything short of radical starvation will work on my current med regimen. I would be interested in discussing this with you, if you have evidence to the contrary.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
I am feeling quite pleased at the moment, I have lost 6 lb since I started to taper off the pregabalin/Lyrica, and I am 2 lb down from my starting weight at the beginning of June. I am now off the pregabalin completely. My activity level is still way down from what it was before surgery (4weeks post-op at the moment) and I haven't changed what I eat, I try to stick with low carb, especially since I discovered about the polycystic ovaries.
So the fact that I have at long last started to lose weight seems to be due to stopping the pregabalin/Lyrica. I am having significant nerve pain now, but it is manageable without the pregabalin. I've talked this over with my GP - if I am carrying less weight, it will mean less pressure in the pelvis anyway, and also hopefully better general health for me in the long term. So I am going to carry on and see if I can indeed reach my target - green zone on the British Heart Foundation BMI chart - 28 lb to go, now!
This morning I was actually looking forward to getting on the scales, and I haven't felt like that for a very long time.
Well done Calluna, Oh yes I remember that feeling. . . still haven't had it for. . . well forever! I haven't put any weight on with pregabalin/lyrica however so should be grateful. Exercise is the key for me.
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
Good job, Calluna! I remember shedding all my gabapentin weight within a couple of weeks of stopping it. Why oh why can they not come up with some good pain drugs that do not come with all the awful side effects?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
Oh, don't I just wish, Lernica! With a bit of luck I won't need to go back on it again, but I shall be honest about it if I do. At least I know how to not gain weight whilst I'm taking it.
Helen, really good to hear that you are able to keep your weight stable whilst taking the stuff. I hope it is helping with the pain.
(not really) I have NO sense of achievement and think it's all so difficult with age and affliction getting the better of me! Excuses, Excuses! ! Think I'll try swimming when the kids all go back to school. I definitely won't give up. Only need 2lbs more off to duck under the magic next stone down, how hard can it be. . . . think we all know the answer to that one 
