Weight loss, underweight
Weight loss, underweight
Anyone lose a significant amount of weight before or at the time of his/her symptoms starting? Anyone underweight? Have you ever heard of PN being caused by a weight loss, so that the pudendal nerve loses some of its "cushioning"?
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
Re: Weight loss, underweight
I have wondered this as well. I lost about 35 lbs a year before my PN pain began which got me down to 120lb at 5'6" when my pain started. I have noticed there are several women who have they are small on here before. The nurse who helped with my pn blocks said the last 3 they had done had been on small women like myself. I don't think we can say being thin causes PN because there are plenty of thin people out there who don't have PN, but maybe our anatomy predispositions us to PN pain and being thin aggrevates it? Just an idea. I have no research on this.susibee wrote:Have you ever heard of PN being caused by a weight loss, so that the pudendal nerve loses some of its "cushioning"?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Re: Weight loss, underweight
Yes, maybe our anatomy predisposes us to PN and maybe losing a needed cushion is the final straw?Faith wrote: I don't think we can say being thin causes PN because there are plenty of thin people out there who don't have PN, but maybe our anatomy predispositions us to PN pain and being thin aggrevates it? Just an idea.
I thought of this because there is a neuropathy in the lower leg (peroneal nerve) which causes foot drop. It occurs in some people who lose a significant amount of weight and it is due to the loss of fat surrounding that nerve. Clearly, they are predisposed, as not everyone who loses a lot of weight gets foot drop. The foot drop resolves when they gain the weight back.
Anyway, my symptoms first started when I lost weight (I've realized in retrospect), and I have remained slightly underweight since then.
Vulvodynia diagnosed '01; symptom was occassional vulvar itching/rawness after sex.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
Autumn '10, localized clitoral and left labial burning after sex
March '11, new left buttock pain, worsened clitoral/left labial pain/burning.
May '11, increased sitting pain.
Summer '11, pain decreased/plateaued to 0-4/5.
Treatment: 75 mg nortriptyline nightly, definitely helps; PT x 4, didn't really help.
Consults with Hibner and Dellon, left me with questions.
Next step: MRI in NYC or VT.
Re: Weight loss, underweight
I know fat is needed for nerve health too and I was eating an EXTREMELY low fat diet when I lost all my weight. So I feel that wasn't good for me. I am trying to gain weight back now, but I can't. And I'm even taking NEurontin that is supposed to cause weight gain! I think I am losing a ton of muscle mass now which is a big problem.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Re: Weight loss, underweight
I did lose about 20 pounds at the onset of this, which was significant because I'm only 5 feet tall. However, after years of not being able to excercise properly, I've packed on the pounds.
I like to consider myself "fluffy" now. 
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
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TracyB7777
- Posts: 196
- Joined: Mon Sep 27, 2010 3:42 am
- Location: Vail, Arizona
Re: Weight loss, underweight
Alas, I've been a plused size gal since my son was born almost 17 years ago. My pain or actually itching started in January as I started a weight loss program. I was exercising and eating healthy. By June I had lost 40 lbs and the pain was at its worst ever. But I don't think the weight loss had anything to do with it. Of course over the last 7-8 months I've packed it back on and then some. Instead of helping, the pain has moved around. Instead of just the vulva, it moved to perineum and then the buttocks by October.
So I have plenty of padding.
I've actually joked that since I've been hyper avoiding sitting and stand all the time, you could bounce a quarter of my ars. Then I wonder if the tightness isn't part of the problem. Sigh...just keep going around and around and around...
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.
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.
Re: Weight loss, underweight
I have wondered this as well. I'm 5'3" and 105 lbs, petite bone structure. Led a very active life with 4 children, full-time job and did core strengthening and lots of situps and light upper body. Hoping I can do some of this again some day... For now I try not to focus and keep searching for relief from this perineum and rectum burning and the pressure/pain in the sacral. I have forgotten what my body use to feel like. I have my first PN block and steriod injection next week - after reading posts I'm not sure I want to do it. Thoughts, comforting words anyone? Would you do it again?
Symptoms started 7/2010 following Cellulitis infection
Hysterectomy 11/08 due to fibroids/4 child births
Rt Leg Obturator & Piriformis Pain
Sacral Pain
Current Medications: Lidocaine 5% Patch, Baclofen,Tramadol, Xanax
Topical Amitriptyline/Gabapentin Compound as I am not tolerating systemic treatment
Under Pain Management Care, Seeing a PN therapist (8 visits to date)
PN Block via CT Guide (3/11)
(2) ESI Trigger Point Injections (4/22/11)
Hysterectomy 11/08 due to fibroids/4 child births
Rt Leg Obturator & Piriformis Pain
Sacral Pain
Current Medications: Lidocaine 5% Patch, Baclofen,Tramadol, Xanax
Topical Amitriptyline/Gabapentin Compound as I am not tolerating systemic treatment
Under Pain Management Care, Seeing a PN therapist (8 visits to date)
PN Block via CT Guide (3/11)
(2) ESI Trigger Point Injections (4/22/11)
Re: Weight loss, underweight
Is the person who is doing your blocks really familiar with PN blocks? Are they going to use CT or ultrasound or Xray? I don't really know what my advice is. I think if I had it over to do I might have gone to a PN specialist first to make sure I was getting someone really good at PN blocks (my doctor has done several, but he uses Xray and ultraound) I would have preferred someone who used CT. A PN block is necessary to "diagnose" so eventually if you want to pursue more treatment you will have to have one. I know someone who has had good results with PN blocks and that was by someone with little experience giving them. So results really do vary. I had one with steriod and one without. The first one without just to "diagnose". I didn't have any problems with it, but the second one with steriods hit a different "area" and I feel like I was left with some new pain from it. I was wondering what your pressure/pain in the sacral area is like? I too have a lot of sacral pain. Is yours only one side or both? Up high or lower towards the coccyx?JRS wrote:I have wondered this as well. I'm 5'3" and 105 lbs, petite bone structure. Led a very active life with 4 children, full-time job and did core strengthening and lots of situps and light upper body. Hoping I can do some of this again some day... For now I try not to focus and keep searching for relief from this perineum and rectum burning and the pressure/pain in the sacral. I have forgotten what my body use to feel like. I have my first PN block and steriod injection next week - after reading posts I'm not sure I want to do it. Thoughts, comforting words anyone? Would you do it again?
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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HerMajesty
- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Weight loss, underweight
My PN started gradually after childbirth, while I was in the midst of losing 150 pounds (80 of baby weight and 70 extra I had before the pregnancy). But I'm not sure it was the weight loss by itself so much as the excercise needed to lose the weight. For those not familiar with my case I had an undiagnosed gait issue (morton's toe with supination), that led to pelvic injury. While I had some prior pelvic injury and might have sustained more in childbirth, I strongly suspect that my regimen of walking 2 miles per day or using the elliptical machine on a high-resistance setting for 30 mintes on the days I could not take a walk, might have been the main culprit. I have heard of lots of people sustaining joint injuries on excercise equipment such as ellipticals and stair steppers. So the question on my mind is, did those of us who lost weight directly prior to developing PNE, lose the weight with diet only or were we all on a new excercise regimen?
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.
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.
Re: Weight loss, underweight
I'd like to add one more question. Was anyone taking Relacore? I was taking it around the time I got PNE full blown. I was also doing some Body For Life exercises during the few years prior... I know Violet did Body For Life. I'm 5'2" and have always been slim but not waif-like... usually 115 pounds but now unfortunately 125. Around the time when my PNE flared, YES! oh my gosh, I did lose some weight... I went down to 106 because I was getting married... I was doing the Atkins diet for 2 weeks and I lost probably 4-6 pounds in that short time.
-straddle fall age 4-7 w/bleeding labia, tampons hurt in teens, papsmere started annoying pelvic 'tingling' & pne in 02
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain
-obturator surgery w/ Filler in 05 (useless, created sciatic & plantar fascitis pain)
-TIR surgery w/ Bautrant in 08 and vestibulectomy in 08 in France (vest. removed pain w/intercourse, pain w/sitting increased post surgery)
-chronic fatigue & food allergies/migraines (gluten, milk) from pain meds in 08
-want a life back. I'm 34 w/8+ years of pain