Help, Burning is back

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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Help, Burning is back

Post by Quilter 2 »

Hi to all;
I'm back and I'm not a happy camper. In Feb. I was almost without pain. Feb. was my 15 mo. since surgery. I really thought I was finally on my way. WRONG!! Week 2 in March until now has been the pits. The vaginal burning will not stop and now I have way more Anal burning than I ever had???? NO, I haven't been doing unusual stuff. One day I did toss grass seed and hay around the lawn. Not a bale, just small amounts. My lower back hurt most of the time. I was taking 100 mgs. Tramadol in the AM and PM. Once in awhile a Valium suppository. Since March I'm taking the Tramadol every 6 hours but need it at the four mark. I use ice until the 6th hour. Also, 5 out of 7 days, I'm taking the Valium suppository.

Here is my question(s). When I was in FL it was in the 80's. I wasn't responsible for doing meals, laundry or even thinking!! For what ever reason, TN has decided to have a record breaking cold spell. Is it possible the heat and/or the no stress factor made me feel better? Has this ever happened to anyone else? I know we get flares, but this is 3 going on 4 wks. I don't think that's a flare.

I'm a very positive person, but this is beginning to get to me which I think will only make it worse. Aggravation is turning into really pissed off. So, before I make myself worse, if anyone has an idea, all will be welcomed.

Thanks guys;
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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helenlegs 11
Posts: 1779
Joined: Fri Sep 17, 2010 9:39 am
Location: North East England

Re: Help, Burning is back

Post by helenlegs 11 »

Hi Doreen,
I'm sure that stress can have an effect, although I can't say that I can say that it affects me much, if at all, there are plenty accounts that it can from others. As for weather there is this thread which may give you some answers ??
http://www.pudendalhope.info/forum/view ... ter#p30228

Sorry that things haven't worked out so well for you. . . . we are suffering with a prolonged winter in Britain at the moment too and I have to say that my base line pain is heightened at the moment, but I have put that down to getting a puppy (she's lovely) I am looking forward to some better weather now though, and I like the snow! but enough is enough!!!
I do hope that you get better as the season changes to prove your theory correct.
Take care,
Helen
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.
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: Help, Burning is back

Post by Quilter 2 »

Helen
THANK-YOU! My husband is the one that thought of the weather. We made the 1000 mile trip 6 months out of surgery so that we could avoid the VT winter. Good idea. My mom in VT tells me it's 40 and sunny and here in TN it's 20 and snowing :shock: England isn't suppose to have a whole lot of snow but I guess you have been hit this year also. Here's hoping the climate changes for you also.
I ask Rod all the time "Why did we move down here away from family and kid??"
Once again, thank-you for taking the time to respond. I'll let you and all the others know if the warmth improves my pain and disposition HA HA!!
Doreen
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
river133
Posts: 260
Joined: Sun Sep 19, 2010 9:29 pm
Location: Melrose. Mn.

Re: Help, Burning is back

Post by river133 »

Oh nooooo Doreen. When you had your MRI
with Dr. Potter ,what were the results ?. I know that it does not make a difference now. Just curious. Could you contact him and ask .Who knows? This whole miserable thing is just still a mystery. You were doing so well. Maybe if you just lie on the couch for a few days and really baby yourself it will go away. That is the only time my pain level goes down.As soon as I stand for any amount of time,I am in trouble, the horrible burning comes back. Hope to speak to you soon.
Surgery Jan.05 2011 TG with Dr Antalok. Dr.Chambi May of 2012 showed injury from a fall on back, 11 years ago. My piriformis muscle caused a large amount of fibrosis .My sciatic nerve was growing through the piriformis muscle which caused a bifid p.muscle. . Dr Chambi decompressed the sciatic,pudendal,pfcn ,and peroneal nerves. I hope to have a nuerostimulator put in to help with the sciatic pain that never goes away. Most days are better with the pudendal if I do not sit at all.
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Help, Burning is back

Post by Karyn »

Hi Dor,
So sorry to hear the burning has returned with a vengeance. :( I know it never totally went away for you, but it did seem to improve for a while. It may be worth your while to give Dr. Conway a call to see if he has any thoughts. I'm not sure what to say about the weather having an effect on the internal burning. I wasn't able to go out very much at all this winter because of neuropathic burning, but it was from waist to feet. Kinda like when someone injures the tip of their finger and they get that burn.
I know we've discussed this before and you're not interested in more surgery; but because of the nature of your pain (straight up the middle), I wish you had both sides done.
Please consider giving Dr. Conway a call.
Much and more love to you and Rod,
Karyn
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.
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Quilter 2
Posts: 163
Joined: Fri Sep 17, 2010 6:24 pm
Location: North East TN

Re: Help, Burning is back

Post by Quilter 2 »

Karyn;
I thought of giving Dr. C a call or write a letter to him. I got some interesting feedback from England, Helen. I read the threads she sent and it was pretty amazing.
Like I've said before, I wish Dr. C had agreed with me to have both sides done but he didn't. No I will not go through that nor put any more pressure on Rod, 69 1/2 or myself (a week away from 64. I will be happy, no matter if it kills me, with whatever I end up with at the end of the 2 yrs. I'll be hitting the 18 mo. mark the first of May.
BUT, I did tell Rod, IF the heat all of a sudden takes this pain away, he better be packed next Jan. for a month on a warm island. Can't repeat the answer here :lol: :lol: So, want to come with me?? HA
Thanks again dear friend. Will call ya soon.
Lots and Lots of Love
Dore
Five pudendal nerve infiltrations with good results.
Sixth Injection left me with more burning, more pain, pain in buttocks.
Botox shot didn't notice any difference
Physical Therapy - Aquatic and Myofascial
External and Internal Manual Therapy on the obturator muscle.
3T MRI with Dr. Potter
2nd opinion with Dr. Hibner in Phoenix
Loretta Robertson PT Phoenix
Decompression surgery Nov. 1, 2011
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