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pregmom
Posts: 34
Joined: Mon Feb 28, 2011 5:15 pm

New to this Forum

Post by pregmom »

Hi,

I am new to this forum but am hopeful I can gain some info and advice...I started with left sided vulvar irritation Jan. 2010 after HSVII breakout and had been seeing a chiro for a couple of mos due to (R) sided SI joint pain. Saw a vulvar specialist in Mar. 2010 who said it could be musculoskeletal or post herpetic pain and started me on Neurontin...By April I was taking 300mg and was feeling better, but not 'cured'. She wanted to bump me up to 600mg but I had decided to try to get pregnant. I got pregnant in August, immediately came off the neurontin and was feeling really pretty good for a few mos until I had another HSVII outbreak and also recurrence of the SI Joint pain. The vulvar pain increased again, and has remained pretty steady throughout my pregnancy. I am also having pelvic girdle pain, which is being attributed to the pregnancy as well. Currently seeing a chiro whom has helped to decrease the intensity of the pelvic girdle pain, but vulvar irritation exisits. Am currently NOT having intercourse due to preterm labor issues, but in all of this, sex was tolerable, albeit a bit sore after the fact. My issue is that I am questioning whether this is PN, and whether or not to have a vaginal delivery or c-section...my vulvar specialist has stated that vulvudynia is not an indication for a c-section....I decided to go to Dr. Conway for a consultation....He could not perform any of the nerve conduction tests due to the pregnancy but he DID do an internal exam both vaginally and rectally to try to 'elicit' pain. This exam did NOT 'provoke' any pain response. Also I do NOT and NEVER have had any increase in pain due to sitting; I sit at a computer all day due to my job. Most of my pain is irritation with walking/friction and soreness to the left vulvar area. Anyway, Dr. Conway said that the Pudendal Nerve MAY be involved but that in his opinion, not peripherally, he said my issue could be due to post herpetic pain but I have NEVER had an outbreak in the genital area, always on upper left buttock, or he also said it could be musculoskeletal...; he too said if I was his patient, he would recommend a vaginal delivery. He did suggest, to discuss with my OBGYN not to let the delivery become stressful/tramautic..in other words if I 'fell off the curve', then to go to c-section, thereby avoiding prolonged pushing, use of forceps or vacuum extraction. I am still really afraid of the vaginal delivery as I am petrified of making my whole situation worse...will my pain be worse if I go vaginal? What if it is PN? Should I push for a c-section? I am at 32 weeks and have a hx of early delivery, so I need to discuss a plan with my OBGYN soon! ANy advice would be helpful :)
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: New to this Forum

Post by Celeste »

Hmm, well, that's a dilemma. You don't sound like you have typical PNE, but they didn't seem to turn up anything else. I have no idea if a vaginal birth would make things worse. Personally I'd be tempted to try it just because of the faster recovery...but I can see why you would want to push for one. If you got worse pain afterwards, it would make your diagnosis path a lot clearer for what to do next. I'm sorry I'm no help at all!
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.

http://www.tipna.org
pregmom
Posts: 34
Joined: Mon Feb 28, 2011 5:15 pm

Re: New to this Forum

Post by pregmom »

Hi Celeste

Would an internal exam typically elicit pain on provokation if it was PN? and also is it unusual NOT to have sitting pain if it is PN?
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: New to this Forum

Post by Lernica »

I am not a health professional but I do have PN which was probably due to the vaginal delivery of three babies. All my labors were long, especially the second (pushing) stage, and at the first birth a vacuum extractor was used. In hindsight I probably should have had c-sections as I have a very narrow pelvis and my babies all presented posteriorly.

It seems to me that if you're not feeling PN pain at 32 weeks (with all the pressure down there), and if you're not feeling PN pain while sitting, it is doubtful that you have PN. But if you entertain any doubt about it, I think that the option of trying vaginally and seeing how it goes is a good one. I would suggest considering a c-section not during the first (dilating) phase but maybe during the second stage if it is not progressing as normal, ie. no crowning after twenty minutes of pushing. I pushed for 1.5 hours before any of my babies crowned. Ouchy ouchy! And the PN pain I feel now is the exact same burning pain I remember experiencing while pushing out my babies for hours on end many years ago.

Good luck with everything, PregMom. The nice thing is, no matter how much pain I am suffering now, I have absolutely no regrets as I have three beautiful kids.

Lernica
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
pregmom
Posts: 34
Joined: Mon Feb 28, 2011 5:15 pm

Re: New to this Forum

Post by pregmom »

Thank you so much for your input!....I want to trust the doc's opinion, but I also want the input of those who truly know...I guess my confusion lies in the fact that I do have the left sided vulvar discomfort which worries me that there is some component of PN....although like you said, I don't currently have sitting pain, or burning, just the uncomfortable vulvar irritation along with this left sided groin/pelvic girdle pain. I go back to my original question though, if PN was a componenet, would I have felt pain on provocation when Dr. Conway did the internal vag/rectal exams?
JeanieC
Posts: 198
Joined: Tue Sep 21, 2010 11:47 pm

Re: New to this Forum

Post by JeanieC »

Pregmom,

Yes , typically you would have pain when the examiner presses on the PN at the ischial spine. I am hoping for you that you do NOT have PN.

Best wishes,
Jeanie
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: New to this Forum

Post by Celeste »

JeanieC wrote:Pregmom,

Yes , typically you would have pain when the examiner presses on the PN at the ischial spine. I am hoping for you that you do NOT have PN.

Best wishes,
Jeanie
I totally agree with this. I had no pain during the pregnancy, it was birth that made it begin. We've had several ladies here who had PN surgery and went on to have babies, and pregnancy didn't bring the pain back. The baby is just up too high to be anywhere near the nerves. It's PN pain that is the sole reason they give epidurals and so-called saddle blocks of anesthetic. We all know they never offer us these during the pregnancy--because we don't need anything. The baby's up north in a bubble, not on the way out and pressing against bones, muscles, and nerves. Hope this helps.

There are lots of musculoskeletal things you could have going on, but nothing you've described sounds like PN.
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.

http://www.tipna.org
pregmom
Posts: 34
Joined: Mon Feb 28, 2011 5:15 pm

Re: New to this Forum

Post by pregmom »

Thank you again to all of you for your advice :)....this left sided vulvar pain w/ the sometimes toothache like left sided groin pain is just such a mystery to me; so frustrating.. so uncomfortable as I'm sure you all are and have experienced :(....then the left sided groin pain that has turned into the girdle/saddle pain with the pregnancy. When I read about PN and they symptoms of 'genital pain', sometimes associated with SIJD which I was seeing a chiro for just prior to this staring in JAN2010, I thought maybe PN was the culprit. Like I said before, the VV specialists I saw thought it could be musculoskeletal, post herpetic or PN (I would have to see another specialist for this they said)...none of them knew.....Then when the Neurontin (300mg) helped last year, I just went with it and hoped it would eventually go away...then with the pregnancy, coming off the neurontin, the return of the symptoms, I really started to FREAK OUT about the vaginal birth which is why I went to Dr. Conway for a consult.

You all seem to feel that going with the vaginal delivery, as long as it is not prolonged/traumatic, etc...and going to c-section if not progressing is the way to go? I have one other question I want to ask and will ask my OB this week, if it is post herpetic, and the nerve is inflamed/irritated, what impact if any could delivery have?

I truly am very very grateful to you all for being there to answer my freak out questions...the fear can truly take over :(.....I hope for all sufferers, no matter what the root cause that relief will be found:)....I'll keep you all posted :).....
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Celeste
Posts: 574
Joined: Sat Sep 18, 2010 2:24 am
Location: central Ohio

Re: New to this Forum

Post by Celeste »

Well, he may not have an answer. I'm not sure any of us can predict how your nerve (if affected) would handle delivery. This sounds flippant, but I'll just say it--if your pain got worse from delivery, it might help make the case that you have PNE. Right now you're in sort of a limbo, and your treatment options are so limited because of your pregnancy. I think all you can do is get through this time, deliver your baby however it works out, and see how you feel afterwards to go from there. Hang in there!
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.

http://www.tipna.org
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: New to this Forum

Post by Lernica »

Pregmom,

You're going to be fine. You're going to have a beautiful baby, and you will feel better once the waiting is over. Just remember that most first labors are looooong, so don't start asking for a c-section after the first 4 hours! Your recovery after birth will be so much easier if you can hang in there and deliver vaginally.

All the best,

Lernica
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
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