What might I expect from a pain treatment center and, a little venting...
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T ...@worldnet.att.net (Sue)
Good morning all.
I've just recently been referred to a pain treatment center in my area and was just wondering what I might expect from them.
I have endometriosis, have had three laparoscopies during the first of which a portion of my bowel was adhered to my ovary which was all adhered to my pelvic sidewall, and am now left with a damaged bowel with pain and, I also have pelvic congestion syndrome.
This referral was following a "conversation" with my gynecologist which was over his cell phone that kept cutting out. I was attempting to discuss with him my pain problems and my need for a refill of Vicoprofen. He offered hysterectomy, ovarian vein embolization or pain treatment center. I opted for the latter. I tried to convey to him that I wanted to speak with him at his office, he said no, "just call my office now". I feel as though I've been dumped and, it really hurts.
I'm really worried that they're going to drop my pain meds (I sound like an addict). The fact is, without them, I'm not functional. As it is, I can only work part-time as a result of my physical problems.
I feel so alone with all of this. Can anyone offer any support?
-Sue
"Tigersyank" tigersy...@yahoo.com
My experience has been that the pain clinics are much more empathetic than ANY doctor. I went through a ton of MD's with just as many diagnoses up to and including it was all in my head. When I finally had a Dr tell me that he was giving up and was just going to send me to a pain clinic I felt like you.....being dumped. It ended up being the best thing to happen...FOR ME.
They finally got me on a med routine that did some good and eventually recommended a nerve stimulator and even hooked me up with some people that had one. I talked with them, did some research and went for it. The pain clinic did me wonders!!!! They also referred me to a great neurologist that has also helped.
So, again in my experience, the pain clinic I go to is wonderful. I hate the drive.....3 hours each way. But they seem to be more willing to listen and really have more empathy than ANY doctor I've been to. In my mind that makes a HUGE difference!!!!
nwbluepeng ...@aol.comnospam (Sue)
All of a sudden we are getting alot of Sue's in the ng. I have no input with your specific problem Sue, but a pain treatment center or pain clinic can be life saving experience. You stated you are not functional without your meds. I really think you are headed in the right direction going to a pain center. Perhaps your PCP can RX enough meds for you until you can be seen at the pain center.
Pain centers are different and each pain doctor is different. Be totally honest with your new doctor about your pain and how you are not functional at your current pain level. A lot of pain doctors will try other options along with opiate therapy to see how it goes. Most times these options aren't very good. They work for some people, but for some of us they are useless. Just be honest in what has worked for you (even if it is only meds) and what has not worked for you. Let him/her know you would like to get your pain to a tolerable level. Taking your medical records with you to the new pain doctor may help out.
Honesty is the most important thing when dealing with pain treatment. Wshing you the best.
Good luck and keep us posted.
Sue We survive together or not at all.
MJBJR takethisout_mbonv...@optonline.net_thistoo
<snip> Sue, good luck, you will be in my thoughts and prayers. Please keep us posted on how you are doing.
Mike
Issy5 ...@webtv.net
Hi Sue, I can SO relate to the pain you are describing from Endometriosis & adhesions!!! My reproductive organs were a total mess. I also had Polycystic Ovary. The pain I lived in for 10yrs was a horrendous nitemare! Unfortunately, it was in the late 1970's & I had very few options. I had 22 major abdominal surgeries to try to correct many things, & some surgeries were for bizarre complications. I finally had to have a total hysterectomy@age25! I'm still left with adhesions to other organs.
I wish you the very best with pain management. I'm going that route for other problems & know how you feel. I'm afraid I'll be "left in the lurch" somewhere in there, with NO pain meds. It's a scary step to take, but i have HOPE...much of which I got from the great ppl in this NG. They provided me with great websites to "study up" on the state of pain management & lack thereof in today's medicine, their own personal experiences, the benefit of the knowledge they've gained & the encouragement to NOT give up!! Some encouraged me that it may take TIME to find the right DR & to see it thru & not give up. I've been reading & learning all I need to learn, in order to be an "informed patient", while approaching this avenue for relief, & a QUALITY of life that I have NOT experienced for many years! I'm fighting to "get my life back"! I cannot go on in a semi-bedridden state when all I need is a comp***ionate DR who is WILLING to provide me with long acting medication relief!
I recommend you read more & empower yourself & learn your RIGHT to receive proper treatment. Check out a great website: http://www.widomaker.com/~skipb/panic.html You will be set free from the burden of feeling "like a drug addict".
The material on this site will help to prepare you for your appt with a Pain DR (what to say & what not to say, etc) IMHO, I'd suggest strongly that you avoid having a hysterectomy at all costs! Had I known in 1979 what I know now, I'd have chosen the PAIN over being "surgically castrated"! If you MUST have a hyst, try to have him leave an ovary, or you'll be in for heartache & medical conditions No one should have to live with.
I wish you the best, Sue...when is your appt? Plz, let us know how you do? You may email me if you want to talk about this. I truly feel for you. You are NOT alone here. We ALL live in some pretty awful pain & you will find support here.
Sue wrote: Good morning all.
I've just recently been referred to a pain treatment center in my area and was just wondering what I might expect from them.
I have endometriosis, have had three laparoscopies during the first of which a portion of my bowel was adhered to my ovary which was all adhered to my pelvic sidewall, and am now left with a damaged bowel with pain and, I also have pelvic congestion syndrome.
This referral was following a "conversation" with my gynecologist which was over his cell phone that kept cutting out. I was attempting to discuss with him my pain problems and my need for a refill of Vicoprofen. He offered hysterectomy, ovarian vein embolization or pain treatment center. I opted for the latter. I tried to convey to him that I wanted to speak with him at his office, he said no, "just call my office now". I feel as though I've been dumped and, it really hurts.
I'm really worried that they're going to drop my pain meds (I sound like an addict). The fact is, without them, I'm not functional. As it is, I can only work part-time as a result of my physical problems.
I feel so alone with all of this. Can anyone offer any support?
-Sue
Codeee Codee...@hotmail.com
Pardon my top-posting please, but please don't forget http://www.painlinks.org/ when searching for a doctor and more good information. (thanks to David Lambourne for that one ;-) ) Wishing you both the very best of luck, codeee on Wed, 6 Nov 2002 03:50:18 -0500 (EST),Issy5...@webtv.net wrote :
Issy5 ...@webtv.net
Codeee makes excuses by saying: Pardon my top-posting please, but please don't forget http://www.painlinks.org/ when searching for a doctor and more good information. (thanks to David Lambourne for that one ;-) ) Wishing you both the very best of luck, ? ? codeee Barney, show us your stuff!
p.s. was it made "official" in my absence that bottom posting is against the law now??? LOL!
Peace~Stacie from "Mayberry"
Codeee Codee...@hotmail.com
Naw..no new "laws", just thought I'd nipit.. nip it in the bud, ya know? <wink> (it has been an issue in past history, we resolve it, then we forget, and start the debate over again once we've run out of other things on the docket to discuss). These Mayberry city council meetings are a bear! (frankly, if it weren't for Aunt Beas' cookies, I'd skip out to Mount Pilot for a movie). <g> codeee codeee
nwbluepeng ...@aol.comnospam (Sue)
Not before you get that soup cooked. Oh yea, I forgot, you ARE the soup. LOL Sue We survive together or not at all.
Codeee Codee...@hotmail.com
Hey...I'd forgotten about that !!!!!!
codeee
nwbluepeng ...@aol.comnospam (Sue)
How could you? I think it's pretty easy to remember every time I have been in hot water. But then the hot water I've been in isn't dinner either. LOL Time to get your hands out of the cookie jar Codeee. Ronnie is going to tell Aunt Bea.
Sue We survive together or not at all.
MaBDest ...@yahoo.com (Maybe It's Destiny)
Sue, I am very sorry to hear of your struggles with endo. Five years ago I was diagnosed with stage 3B endo and a hyst was recommended. I had been chasing down a buttock pain when a CAT scan saw a cyst on each ovary. An abdominal ultrasound further revealed the present of the cysts and my gyn doc recommended a lap to remove the cysts. She had permission to do a hyst while doing the lap but once in during the lap she made the decision to not perform the hyst at that time. She wanted to do the hyst with the more conventional method of actual cutting. I agreed. It was on the two week checkup after my lap that she say me getting off the table in extreme pain. She pointed out that that was endo pain and recommended me seeing an orthopedic doc. Two months and one mylegram (sp?) later, my slipped disk was diagnosed. The orthopedic doc also recommended surgery. I decided to have both but wanted to put them off. I did but a couple months later the back pain (note...the only pain I had complained of during the 8months of trying to diagnose the problem) grew to where I made the decision to go ahead with surgery.
I wanted them on the same day as I was a single parent and had no medical leave built up. THe kids and I were mercury poisoned earlier that year and that require a weekly visit to Vandy which was an afternoon of each week that used my leave, plus I'd done physical therapy right after the mercury poisoning to try to help with the pain...so after all that, my leave was gone so it would be unpaid. The docs found a schedule where they could perform both surgeries at the same time. I was the talk of the hospital for sure.
It resulted in a 7 inch incision right at my bikini line going horizontal and a 6 inch one going vertical on my back. The biggest problem I had was from the staples from the hyst...she had left them a couple days longer because she wanted the support becuase of hte back for some reason...and the first time I went to the bathroom was hell.
Well, I take that back..I hadn't been thru hell until my recent spinal fusion. :-) My right ovary had adherred to my back pelvic wall and she said I had endo everywhere. Funny but the only symptoms I could contribute to the endo was flooding during my period for maybe 2 hours out of the whole week. A internist I had seen at Vandy had told me that my minor back ache and the flooding was just due to me getting older. I was 36.
After my slipped disk and endo was discovered I wanted to tell her what I thought about "getting older" but I just let it drop and never went back to her.
I agreed with my gyn doc about wanting to literally go in through a larger incision when she said it would help her remove all the endo cells in my abdomen. She also gave me some shot..can't remember the name but it started with an "L" and she wanted that to suppress all hormone activity for two months after my hyst in order for any endo cells to die of starvation (since they feed off hormones). This shot of which the name I can't remember is called "the drug from hell" because many women have had bad side effects from it but I never did.
Oh...the name "luprin" just came to me and I think that is it.
I was aware of many women still having to undergo surgeries to remove endo after they had a hyst because even tho their womb was removed, the cells were still active in their bodies. I have to say I've been very fortunate as I've had no problems with endo or hormone issues after having the total hyst. She removed both my ovaries and I am on HRT at 42. I didn't/don't have any emotional attachments to my female organs as some do but I respect that others have a different opinion.
My endo was such that I was one step away in their schematic reference to endo growth/problems from issues with my intestines. I understand that this is when the endo grows on the intestines and wraps around it in such a way to cause problems. That my right ovary was adherred to my back pelvic wall tells you the extreme of which my endo was running rampant in my body and yours, with already involving the intestines, would be a step or two further up the chart than I was.
I know of the life long struggles many have with endo, many starting from a very young age. My mother had to have a hyst in her late 30's and while endo was never mentioned, I suspect maybe that is why. I have a niece that has suffered many female issues and I've tried to get her to a doc that knows and understands endo.
As in my case, I opted for the hyst, and I appreciated that she wanted to go the route that would be more thorough and offer the best chance of removing all the endo cells in my body. I am now five years out from the surgery and have had absolutely no probems yet (knocking on wood, of course) with endo and have suffered absolutely no negative effects from my total hysterecomy. I would recommend it any day of the week but feel having a doc that is knowledgable in how endo can affect you if some remains after surgery is VITAL to success. I was fortunate to have never met a doc that was stingy on performing hysts as I know there are many out there. My doc talked with me numerous times to ensure I, at 36, didn't want more children so she wasn't too quick to jump the gun either. This made me respect her opinion on having the total hyst even more. We agreed that it would be her call, once she was in and could see what was going on, to remove or leave the ovaries.
Anyway, just wanted to offer up my positive side of the hyst issue. I would jump up on the table to have it again tomorrow! There are many endo support groups and info out on the web. If you haven't searched them out, I would suggest that you do. Having a hyst is certainly a hot topic on them because many are adamently opposed to the surgery, and bear in mind, that many who go on to have no problems after having a hyst, problably aren't as active as they were when they were still dealing with the problems of endo. If one is young, and still wants children, then thats a totally different issue and I know many struggle for years, to keep the endo in check in order to have children.
Its a disease that isn't talked about like many others and if it's not handled properly, can affect you for life. My doc is in Nashville and if you were in the area, I would plead that you make an appointment because finding the right doc is vital to managing this disease. You will be in my thoughts and prayers and if you have any further questions, I'd be more than happy to talk more with you.
Jon Miller jonandmarymil...@comcast.net
Pain doctors consider any treatment with a 50% success rate "good".
This is probably because we (as in all people) really don't understand pain *at all* (in a scientific sense -- some of us understand it *very well* in an experiential sense) and we really have to guess *a lot* about what might help and what might not.
Jon Miller
The Unknown Armadillo dontmai...@hereor.anywhere
What, the Grand isn't good enough for you?
--
The Armadillo
Codeee Codee...@hotmail.com
Ahhh...<heart warming with joy>,,, and I was feeling left out. ;-) codeee on Thu, 07 Nov 2002 20:18:21 -0500,The Unknown Armadillo <dontmai...@hereor.anywhere> wrote :
Issy5 ...@webtv.net
Sue & MaB, for some reason I just ***umed Sue was in her 20's & THAT'S why I gave my strong opinion against having a hysterectomy.....sorry, was only speaking of having long-term medical problems, from having had a hyst@age25 & now am 49. If you're close to peri-menopause & not a newlywed, it is sometimes the ONLY recourse to end the torture of endometriois. I know that many woman finally found relief having the surgery, as you did MaB & I'm SO glad you DID! Sue, I didn't realize that you were 46......I didn't mean to sound so adamant about it. I was just concerned & was encouraging your opting for pain management over a hysterectomy.
MaB, you're so right that *Endometriosis* is a disease that is rarely talked about. I'm one of those who had it so bad, that I continued to have many complications & surgeries, well after(4yrs) the hysterectomy. A nitemare indeed! I really hope you find relief, Sue! TY for your email...I didn't get to reply yet. My husbands' mother is in her last hours of liver cancer & I've been busy with all that. I also didn't realize that your appt was TODAY! Plz, let me know how it went.
Peace~Stacie ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ MaBDestiny writes: As in my case, I opted for the hyst, and I appreciated that she wanted to go the route that would be more thorough and offer the best chance of removing all the endo cells in my body. I am now five years out from the surgery and have had absolutely no probems yet (knocking on wood, of course) with endo and have suffered absolutely no negative effects from my total hysterecomy. I would recommend it any day of the week but feel having a doc that is knowledgable in how endo can affect you if some remains after surgery is VITAL to success. I was fortunate to have never met a doc that was stingy on performing hysts as I know there are many out there. My doc talked with me numerous times to ensure I, at 36, didn't want more children so she wasn't too quick to jump the gun either. This made me respect her opinion on having the total hyst even more. We agreed that it would be her call, once she was in and could see what was going on, to remove or leave the ovaries.
Anyway, just wanted to offer up my positive side of the hyst issue. I would jump up on the table to have it again tomorrow! There are many endo support groups and info out on the web. If you haven't searched them out, I would suggest that you do. Having a hyst is certainly a hot topic on them because many are adamently opposed to the surgery, and bear in mind, that many who go on to have no problems after having a hyst, problably aren't as active as they were when they were still dealing with the problems of endo. If one is young, and still wants children, then thats a totally different issue and I know many struggle for years, to keep the endo in check in order to have children.
Its a disease that isn't talked about like many others and if it's not handled properly, can affect you for life. My doc is in Nashville and if you were in the area, I would plead that you make an appointment because finding the right doc is vital to managing this disease. You will be in my thoughts and prayers and if you have any further questions, I'd be more than happy to talk more with you.
The Unknown Armadillo dontmai...@hereor.anywhere
Uh... left out of what?
--
The Armadillo
Codeee Codee...@hotmail.com
on Sat, 09 Nov 2002 17:46:21 -0500,The Unknown Armadillo <dontmai...@hereor.anywhere> wrote : codeee
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