Pain puzzle

Submitted by kit on November 9, 2007 - 4:07pm
Body: 

I know we can’t get medical advice from a forum, nor should we expect to, but I have a problem that I am not having any luck getting an answer to, and I feel it is really important that I get an answer. My radar is up on this one. So far, in the past two weeks, I have been to a urologist, had a pelvic MRI, and have just come from the gynecologist today. So, medically, I have been trying to find answers. And it is expensive.

My problem: For 6 weeks in the summer of 06 I was on bio-HRT. Soon after I started the drops, one side of my vaginal area and my inner-upper-thigh area started hurting like crazy. Just one side. The pain mostly subsided after I discontinued the HRT but when I would sit, the back of my upper thigh would have a burning, stretching feeling. And if I would sit on a soft surface, the inner thigh, vagina/perineum area (on that side) had that same feeling. This pain has continued now for 1 ½ years. It is getting worse. It has spread and I feel it every moment that I am sitting. It is worse on some days than others.

Today, the gynecologist poked and prodded trying to activate the pain. I could not feel any thing she did that felt especially painful to those areas. She did hit on one painful place on that side, which she said was a muscle, but it did not seem to aggravate the area
in question.

The gynecologist thinks it is a problem that needs to be worked out by a PT. I am for that if that will help but I guess it just worries me that something is being missed. I told her the pain was a burning, stretching type pain that starts in the upper thigh right at the vagina/perineum and spreads into my leg. She said if the pain runs into the leg then it is probably a piniformus (sp?) muscle problem. I told her it doesn’t run but just spreads out.

Right now, I am sitting at my computer and I feel it in my back upper thigh. It is a burning, stretching, numb feeling at the moment. And it feels like it is tingling or pulsing at times. Very uncomfortable. It feels bad on hard surfaces, and really bad on soft surfaces. The more my body flexes the worse it seems to get.

I have never got to feeling good after my trial with HRT. I know the pain causes me to worry and I know that worry and stress and can make one feel lousy. I so hope that is the case with me. I so want to get some answers and to feel better. I miss feeling good.

After my examination today, the ride home in the car was awful. The pain was worse than it has ever been and it made me sick to my stomach. For the first time it spread to my buttock area. Still, just one side.

If anyone has ever had this type of pain, or has any kind of experience with it. I sure would appreciate your take on it. Like I said, I am not looking for medical advice. But maybe I can benefit from someone else’s personal experience. Thanks, Kit

goldfinch1

November 9, 2007 - 5:22pm

Hi Kit:
Have you ever had shingles? I had them in February of 2006 and the pain that I experienced sounds very much like yours. The outbreak and pain is usually on one side of your body or the other. My outbreak was on the left side of my groin, my left buttock and down my left thigh. Here is a link with some information: http://www.medicinenet.com/shingles/page2.htm.
I'm sure if you Google 'shingles' you will find much more.

Apparently on occasion the pain will be present but the blisters normally associated with shingles may never appear. And I'm sure that STRESS is what caused my outbreak to occur!

Postthereptic neuralgia is localized pain in the area of the outbreak that lasts well beyond the episode. 1 1/2 years is a long time to have pain, however.

I had a friend who was 32 years old who got shingles, so it's not just a problem for older people.

Good luck and let us know how you are doing!
Love, Goldfinch

kit

November 9, 2007 - 5:24pm

I've never had them but I will sure read the information. I know I am grasping at straws to learn anything right now. I just want my life back. Thanks for posting. Kit

AnneH

November 9, 2007 - 7:46pm

Shingles is certainly a suspect. Also slipped or herniated disks in your back. Have you been checked for that?

kit

November 9, 2007 - 9:18pm

I had a lot of work done on my neck, back, shoulder, hips for about 6 months, just ending a couple of months ago. I was fortunate enough to find a wonderful massage therapist schooled in reiki, acupressure, Swedish massage and so many other disciplines I can't recall right now. She impressed me with her knowledge of the body in much the way Christine does-- both immeasurably knowledgeable women. She and I clicked and my body/spirit response was nothing short of amazing. She helped me overcome so much in my quest for health. The pain I still have, she could not sort out. And in all of our work, this pain never lessoned. I really don't think it's muscular or skeletal, unless it is a pelvic muscle like the doctor believes. I’d love for it to turn out that simple.

I read a lot about shingles after Goldfinch's post. I don't believe that's it either.

Thanks for posting, Kit

anne59

November 10, 2007 - 6:44am

I'm sorry to hear about your pain kit, I have had pack problems for about 9 months now my gyne says it's nothing to do with my prolapses and said i should see about an Xray which I did, thing is it never showed anything that would cause my pain on occasion to be so bad I never get it when i stand only when sitting and then my lower back aches sometimes more than others but it never leaves me. The doctor is at a loss and just asked me what pain killers do I used and left it at that...I was at one time so stressed by it all what with having to manipulate and contend with my prolapses which i'm glad to say have been pretty ok lately as ive started to take care of myself (no lifting and resting more and watching my posture)I found that if I was less stressed it helped a lot to.
maybe this hasn't been any help but I do feel for people in pain

granolamom

November 10, 2007 - 8:26pm

(((kit)))

ok, here are my thoughts
nerve pain is usually described as 'tingling, numbness, burning or sharp and shooting'.
it usually does 'run down' its course, to a leg, finger or wherever the nerve goes, and not so much 'spreads out'. spreads out is more like muscular pain, but muscle pain wouldn't typically result in 'tingling'.

shingles was a good guess, and I say that because I've had a neuralgia, which is common after shingles. mine was in my head, on one side and the pain could drive you mad. but I described it as 'bullet to the head every 20 seconds'.

for some odd reason, while reading your post I thought 'RSD' which is reflex sympathetic dystrophy, a pain syndrome that is usually in the hand or foot. I believe they've changed the name since I've been in the field, but a google search should bring it up. I've never heard of it in the perineum, but hey, you could be the lucky one!
although with rsd you'd usually find skin changes as well...so maybe I'm way off too.

I'll put my thinking cap on and let you know if anything else comes to mind.

stay positive if you can

this too WILL pass

kit

November 11, 2007 - 6:29pm

Anne59, I know your frustration. So sorry to hear of your troubles. It sounds like you've had a lot to deal with. Back pain can really get you down. So glad you are doing better.

Granolamom, my, that episode with your head sounds just awful. Do you still have trouble like that? You have been through a lot, haven't you?

I just finished researching RSD. Oh, my, I feel for those affected. My problem, though troublesome enough, just doesn't equal that disease. I don't have any skin symptoms at all.

My pain got so much worse after the pelvic exam the other day. She really poked and prodded. She made my rectum so sore and she didn't even do a rectal exam! The leg pain was twice or three times normal. Although I could not tell that she specifically hit a place that correlated to my pain, something she did really angered it. I have been on Aleve and even had to get some prep H (something I never have to do) to alleviate the pain. It's finally back to just the normal amount of pain.

Question: Is there a vein that runs from the upper thigh, vagina area down the entire leg? I have a vein in that leg that has gotten worse, and my vulva on that side used to have pain, I just wondered if there was a correlation there.

The tendons, muscles, not sure exactly what, are really tender on my inner-upper-thigh when massaged deeply. Also, when I do down-ward dog or other stretches, my leg hurts and is tighter than the other. Something pulls from my lower calf to my mid thigh.

I can't say that the pain runs, or even that the pain spreads ( Iknow I said that before) but what I know for sure is that when I sit, the back upper thigh feels like it is stretched, burns slightly, and there is a tingling sensation. Doesn't tingle so much like when your foot goes to sleep, it is a deeper tingle and it's wanting to travel into my buttock area now after my exam. Oh joy!

Oh, this is hard to describe!! And it wears me out!

Thanks for trying to help, Kit

AnneKane

December 1, 2007 - 9:47am

Hi

This is the type of problem i think acupcunture is often really sucessfull with. A sort of pain that doesn't fit with western diagnostic criteria. My suggestion is to try and find a really good acupcunturist locally. One that has a good deal of training.

oh and if you are going to go with a chinese practitioner make sure they have very good english skill's so they can do the fundamental questiioning part of the diagnosis well and communicate back to you what they thing is going on according to chinese medicine principles.

Overall though tcm is fantastic for pain relief as is japanese acupcunture.

Best wishes

Anne

alemama

December 1, 2007 - 7:52pm

maybe that is part of puzzle. In the past when I have had chronic pain, if I could identify what made it better and what made it worse then I could sort it out some.
I see that you have spent some time with a body worker- I am wondering how deep into the body she went? It is very hard to find someone to work very deep into the hips, sacrum, belly area and know what they are doing.
Another idea that poped into my head was trigger point therapy- some areas are only accessed internally- which might have been what the gyno unintentionally did- that would be a bad thing.

One thing you might consider is Bikram yoga- Maybe somthing is pressing or compressed. Maybe dedicating yourself to a program for half a year or so would help.

Grandma Joy

December 3, 2007 - 10:28pm

Hi Kit,

I have been having the exact kind of pain you mentioned since the middle of August. Yes, I have a connective tissue disorder and peripheral neuropathy but this is coming from the pelvic area. The pain has been so bad down my left leg, it has caused my foot to sprain over and over again. The podiatrist now wants me to see a neurologist but I really think the problem stems in the pelvis. I posted a question about varicose veins a couple of months ago. Then I was gone the month of November, (new grandson in Austin) and visited a vein specialist there who took one look at me and said "you don't have a vein problem, this is all musculoskeletal", but he certainly didn't offer a solution.

I've also been going to a massage therapist and chiropractor but they are not fixing this! I am out of town and just happened to have time to check out the motel's internet tonight. I will get back with you in a few days. Personally, I do feel there is a connection with the pelvis and the leg problem - don't know for sure about the prolapse, but I do know when the chiropractor keeps my hips level, my cystocele goes back up!!!!

Love and later,
Grandma Joy

kit

December 4, 2007 - 12:11pm

Thank you all for your posts! I will be back soon, I can't seem to find a minute to read or post right now. I'll catch up in a day or two. Kit

ATS

December 4, 2007 - 12:17pm

Hi Kit,

I am experiencing lots of strange pains myself. I posted about my shoulder pain the other day, well that continues to bother me and I have now been getting a shooting pain in the front of my chest just below my shoulder and also in my ear. I also had a bad tooth which was fixed about 2 weeks ago and I continue to have aching on that side and am now getting electric shock type sensations in that side of my mouth. All 3 teeth on that lower left side were root treated about a year ago and I have not had any problems with them since then. I have been to see my dentist and spoken to him on the phone tonight and he does not believe it can possibly be dental. The teeth are dead and cannot produce shock type sensations. He believes that because I am stressed I may be suffering atypical facial pain and suggested I see my GP.

I think I might try accupuncture as I DO NOT want to end up on more medication that just masks the pain but does not solve it. Its all very distressing as the electric shock type pains are horrible.

Our strength certainly is being tested isn't it?

Take care,

A