Okay, this is a stretch, but I noticed that many forum members are around my age (31 -- er, I mean 51 ). Just wondering whether there is a possible link between in utero exposures and PN. For instance, my mother told me that in 1959, her doctor ordered a stomach x-ray stomach to confirm his suspicion that she was having twins! There is a well documented link between mothers who were prescribed diethylstibestrol ("DES") between the 1940s and 60s and their daughters who later developed a rare kind of vaginal cancer and uterus abnormalities. Is there a similar kind of link between our in utero experiences and us?
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
But those abnormalities (in females, anyway) caused infertility and were pretty easy to observe on scans and in cancerous growths. DES in females caused uterine issues--cancer and structural deformity. I think we would have had these noticed by gynecologists long before going on the magical mystery tour of looking for PNE. Just sayin'.
It sure would be great (in some ways) to find meaning and pattern, though. I'll grant you that.
PNE as a result of childbirth, 2002. Treatment by the Houston team, with neurosurgery by Dr. Ansell in 2004. My left side ST and SS ligaments were found to be grown together, encasing the pudendal nerve.
I am cured. I hope you will be, too.
There are no medical answers on the forum. Your only hope is to go to a doctor. I was very happy with the Houston team, which has treated the most PNE patients (well over 400), more than any other US provider.
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.
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now.
I agree with what Celeste says, I think we'd have observed some sort of consistency by way of physical abnormalities causing PN. And we haven't, have we?
I'm the right age, and I don't know what caused my PN. I'm also a twin born in 1957, but as my sister and I were adopted it's not possible to get hold of much information about heriditery conditions from mother or father. I do know I was born 6 weeks early and had to be incubated and I only weighted 4lb 2oz
Lots of love always.
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
I was also born 6 weeks early, in 1959, and incubated for that whole time. And I weighed only 4 lbs. The doctors didn't think I'd survive. I believe that Griff is also a twin. Is your twin healthy? Were you adopted together? I know that those days they tended to separate twins for adoption. A real tragedy.
My identical twin is 100% healthy. I always did have a weaker disposition as we were growing up.
Celeste and Calluna,
Maybe we have to think outside the box about commonalities! Okay, here's another try: I have chemical sensitivities and excema and psoriasis. I'm fair headed. Northern European background. I have a very narrow pelvis and long legs. Does this match anyone else's description? (Yes, I know I'm reaching.)
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
My sister and I were luckly adopted together, and yes she is fit and health in fact much more so than I am know. She was the older twin and is showing no signs of any kind of pelvic problems. I have no children but she had a daughter in 1987 and had to have a foreceps deliver and stiches.
But we are not identical, so maybe there is something in that. In recent years we have found a brother that we didn't know we had and he traced us about 6 years ago when the law in UK changed regarding freedom of information act.
He grew up with my natual mother so we have been able to gleen some information from him on the medical side, but there seems to be no sign of PN in my natural family except for me. Lucky me!
I'm only 4' 11" and have always had a very small frame, but in recent years have put on weight like we all do. I've always been into keep fit and running until I developed this and now that has all stopped. It's what I miss the most. Maybe it was all that keep fit that cause me to end up this way. Who knows!
Cheers
Peaches
PN diagnosed in 2009 by Dr Greenslade, Bristol
Symptoms for many years and numerous diagnostic tests
Currently controlled by meds - Venlafaxine and Lyrica
That's so great about your brother! I'm sorry that you were not able to meet your birth-mother. (I'm reading between the lines here, pls correct me if I'm wrong.)
Yeah, sometimes I wonder if running and keeping fit is the key that unites us! It is just so cruelly ironic, isn't it, that after a lifetime of training, now we can't even walk (for long), run, exercise or lift weights. My friends can't believe this has happened to me, since I've always looked after my health. Never mind. Now I'm still looking after my health but in a very very different way! (Is it time yet to take my meds??)
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
Im afraid Im too young to take part in this conversation apart from the fact that Im not 4' something.....I have had other conversations with PN patients who are over 5'8" etc and it was deemed to be a common problem with taller females. i am 5'9" and was once lean, however due to less exercise and too much good food am a little more heavy than i should be....but thankfully Salad days are here again!
PNE started 2003 following Vaginal Hysterectomy, pelvic floor repair and right oophorectomy; eventually after many tests had BilateralTG surgery Nantes 2004; following this tried many other treatments including 7 day epidural, ketamin infusions to no avail; Trialed and was implanted with a Neurostimulator in 2007- Dr Van Buyten Belgium, this has enabled me to manage my pain much better.
). Just wondering whether there is a possible link between in utero exposures and PN. For instance, my mother told me that in 1959, her doctor ordered a stomach x-ray stomach to confirm his suspicion that she was having twins! 
There is a well documented link between mothers who were prescribed diethylstibestrol ("DES") between the 1940s and 60s and their daughters who later developed a rare kind of vaginal cancer and uterus abnormalities. Is there a similar kind of link between our in utero experiences and us?
