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Waited too long for hyst - based on "pain gate" theory? Waited too long for hyst - based on "pain gate" theory?

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  #1  
Unread 01-19-2004, 11:55 AM
Waited too long for hyst - based on "pain gate" theory?

Hi everyone: I just spoke with a therapist who treats many patients with chronic pain. I told her about my surgeon's recent advice: that, having gotten a good result from my PSN, a hyst may help me even further (but that we should wait a few months before deciding, to see if my pain stabilizes). I asked what she would do in my place. Three years ago, when the pain first became 24-7, she had told me she would get a hyst asap.

Her answer was both discouraging and thought-provoking. I had expected her to repeat her advice about the hyst, but she did not. She hesitated and said that at this point, it might not be as helpful as it would have been when the pain first became constant three years ago. Her thoughts are based on the pain-gate theory; according to her research, she believes I've been in too much pain for too long a timeframe for any further surgery to help - that the pain signal has been permanently "stored" in my nervous system.

Has anyone been told this, too? I'm trying to take this with a grain of salt, as she's not a gyn nor a surgeon, but it's still difficult to think you've made a mistake. It's the flip side of looking back and wishing you hadn't had it done - and a reminder that everything we try with these gyn diseases is a crapshoot.

Thanks for any comments/feedback.

((HUGS))

Hannah
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  #2  
Unread 01-19-2004, 12:57 PM
Waited too long for hyst - based on "pain gate" theory?

Dear Hannah,

From what the Gyn/Onc told me at the Mayo clinic, I do not believe what your PT told you. I have had pain for a long time. His comment was that removing as much endo as he could find, doing a PSN, and possibly removing my ovary if he finds endo, would set me up for potentially less pain in the future,, He said it may take several months before I notice improvement but his goal would be that year to year I would gradually have less pain.

I had pain 24x7 for 9 years before my surgery in 1999... that surgery was the one after the pain mapping that helped quite a bit at that time... It did take several months for things to calm down but eventually they did and I had about 50% improvement in my pain.

One thing is certain... if your uterus is sending pain messages to your brain, leaving it there won't resolve your problem..pain gate or not.. Taking it out may not help but there is a good chance it would help and over time the nerves would calm down.

I always think of it like the story of the water torture... where you have a little drop of cold water dripping on your forehead.. at first it doesn't feel too bad but over time it feels like a hammer pounding on your head because the nervous system has begun to amplify the pain... if you leave the water on you have no hope of getting rid of the pain... if you turn it off you may have a headache for awhile but eventually it will become less with time.

JMHO but since a highly respected GYN who specializes in pelvic pain suggested a hyst...and who you yourself have said you have high regard for... I would try not to let a PT speaking "off the cuff" affect your decision.
  #3  
Unread 01-19-2004, 01:01 PM
((( Hanah )))

I am sorry you are still dealing with pain issue's etc. I think your post was quite interesting, and to let you know that you are not alone. My doctor briefly discussed the "pain gate theory" with me, only I did not know it had a name. He told me that sometimes the body remembers what the pain was like and goes into a react mode or imitation mode. So even though the pain may return, the body reacts as if the pain was as bad as before and sends the wrong signals. He did not say to me atleast that this was a permanant situation. Only that the body would eventually learn, re-learn to correctly send the right signals. As a matter of fact, this was before my latest surgery to relieve adhesions and endo. My personal experience seems to be that at first my body was over reacting to twinges of pain I would have in my trouble area. Right now, I can say that the pain is gone, if not almost forgotten. And my body seems to be re-learning how to send the right pain indicators.

I thought it was a crock too, when I first heard it. Who really knows nowadays. You put your trust in a doctor....and it's up to you to do some of your own research. You do the best you can!

I don't regret a day having my hyster. It will be 2 years this March. Since that time, I have had 2 surgeries for adhesions and endo. But for me, with each one, my outlook has improved.

I hope you find peace to your pain. Good luck to you sweetie..
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  #4  
Unread 01-19-2004, 04:19 PM
Thank you for making me feel better!

Sarah, it does help to know that your hyst provided some benefit, even after your having been in pain for so long. (Btw the comments came from a psychiatrist, not a physical therapist - sorry I wasn't clear about that. I do believe in PT but had a very negative experience with pelvic PT and won't be seeking help, nor opinions, from anyone claiming to specialize in it ever again.)

It's hard to know what to think about our "gates." I had disabling periods since age 10, having to stay home or, worse, be picked up from school due to the torture. But until age 25, it stayed confined to when I was actually bleeding or just about to; then the endo symptoms, premenstrual spotting and pain, cropped up. The extra-cyclical pain first began a few days before, then ended up lasting half my cycles and of course, into the period itself. If only this had meant two weeks - not for me! My cycles, as well as my actual periods, were so long and irregular that 'half my cycle' could mean anything up to 6 weeks. Still I functioned, especially when Alesse appeared to cure me for a couple of years (which were the happiest and most successful in my adult life, no coincidence I'm sure). Then without warning, the Alesse stopped working, and here I am.

SusieQM, it's a relief to hear that your hyst has helped. That's encouraging to so many of us who look around and see all the negative experiences. I'm very sorry it was not the 'final' solution, though, but I'm sure your positive outlook has taken you a long way toward your recovery.

What I don't want to do is come out of the hyst experience with regrets. Since I'm prone to that way of thinking, my DH is not very positive about my having more surgery. I'm not the type who 'moves on' easily after a negative experience - so I'm a poor candidate for these diseases. I hope gene therapy will be able to eliminate these plagues one day. Or if it can't, at least maybe they'll be able to make sure that optimism is carried on the same gene lol!

Hugs and painfree wishes,

Hannah
  #5  
Unread 01-20-2004, 02:12 AM
Chronic Pain and the Hysterectomy

Dear Hannah,

I know I have posted this story before, but my hope is that when people search back in time and catch a thread, they may just catch one, and this question you pose is so very important -- to you and to many women suffering from chronic pelvic pain.

I had very severe chronic pelvic pain following a post-partum uterine infection. Between the Lupron, adenomyomectomy, presacral neurectomy, uterine suspension, bcp's, antidepressants, I could not rid myself of even 20% of the pain. If I had any relief (probably with the Lupron) the pain returned within 6 weeks, full force, after stopping treatment.

After my hysterectomy, pathology indicated that the only "problem" that could have been causing my pain was severe adenomyosis of the uterus. I continuted to have very similar pain to the adenomyosis for many months post-hysterectomy. I was afraid the surgery didn't work, that I had waited too long, that I had adenomyosis left in my cervic. And then It started to fade. And then there was residual pelvic tension that I had to work hard to calm down. That took months to let go of. But in the end, I was able to retrain my nervous system to let go of the signals that had fired pain for so long (2.5 years, very severe), and am now without pelvic pain.

I continue to suffer with severe chronic joint pain, but that is another matter. When God closes a door, he always opens a window (LOL, in a sick sort of way).

Oh, Hannah, I know hysterectomy is not the only answer for everyone having chronic pelvic pain. For me, it saved my life. Literally. I was really giving up, because I could not life with the pain one more second. I am afraid of what I would have done had I not had the hysterectomy -- that is how awful my pain was and how completetly it had come to devastate my life. I know how difficult it is to make the decision to have a hysterectomy -- I also valued my uterus, wanted to have more children, was terrified of complications and major surgery. But it worked out for me so well. My prayer is that you are able to find a treatment that works so completely for your pelvic pain, as well as I found.

With love and light,
Loretta
  #6  
Unread 01-20-2004, 09:26 AM
Hi Loretta! Nice to see you. I know hysts help but wonder if endo=post-op problems.

Your story is worth retelling; I'm sure it's helped and will help many new Sisters.

From my own reading of the boards, call it informal research, I've come to my own conclusion about hysts. It seems that the Sisters who do best after the surgery had it for conditions that were strictly confined to the uterus - adeno, fibroids, DUB, cancer (g-d forbid), and so on. Add endo to the equation and it's much more likely that the Sister is continuing to have problems afterward. It makes sense; as we know, endo can hide anywhere and return even if the female organs are gone and the patient refrains from taking estrogen. It's a possibility that some surgeons conveniently forget to mention.

On the other hand, my doctors tell me that a board such as the Road gives only a small sampling pf patients who've had hysts, meaning that post-op problems are not the norm but the exception. Their argument is that most women who have the surgery are doing well. So well that they've jumped back into their lives with both feet and have no time to post on any Internet site.

Thanks for your good thoughts, as always!

((HUGS))

Hannah
  #7  
Unread 01-20-2004, 11:43 AM
MHO

That would only make logical sense that most of what you will find here on the Road or during other research is the problem side. Because most that are doing well after thier hysts, are off having a life and not looking for answers to current dilema's or problems. Not only that, but some don't come back, because they want to forget the pre life! But a very valuable service is performed when you can have a board like this, so if you are having difficulties, you know you are not alone. In my opinion alot of doctors out there frown on places like these because of this fact, to them these sites appear more one-sided, and there are places that have bad information and bitter people driving the boards.
I can tell you know and can see the difference here! Peace of mind is a powerful tool. It is nice to have a place to go with so much information, opinions and experiences shared by someone who just might know what you are feeling. With the healthcare industry going the way it is, doctors are spending less and less time giving you a "peace of mind", so we are forced to go somewhere else for that.
I always like reading the stories of others, in my personal experience, I find it helps me grow as a person.

Good luck to you, and I hope you will find some peace to your pain. Alot of good information and advice has been posted on this thread. Take Care..

Susie
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