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Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

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  #1  
Unread 04-28-2003, 07:54 AM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

Hello everyone: I'm new to this part of the board, but "lurking" here for nearly two years is what inspired me to join. I feel like I belong here even though I have not yet had a hysterectomy. The reason is that I have been nearly everywhere and had nearly everything else done to me in the effort to relieve 24-7 pain from endometriosis and possibly adenomyosis (latest doc doesn't think it's relevant). Pain management has kept me going, but just barely; at this point I'm mostly housebound and bedbound. Meds strong enough to kill the pain at this point usually put me to sleep.

It's cramping. Pure and simple. Plus occasional ovarian pain if my left ovary (where most of the endo was found during my last lap) is touched or palpated. It's as if your worst, heaviest period were just about to begin and you keep running to the bathroom to check and see if it's started, because you know that once you get it, it'll be over that much sooner. But it never arrives (I took continuous Pills until recently; now I'm on 5mg norethindrone) and so the pain never goes away.

Most of the drs I saw were in favor of hysterectomy. I couldn't go through with it, because I had a feeling it would not work. My endo and adeno are both very mild, at least under the laporoscope. I finally found a dr. who said that these other drs were probably right; a hyst would definitively cure the endo. But he confirmed my instinct -- it would most likely not relieve the pain.

He gave me 2 choices: a presacral neurectomy that he himself could perform, or a permanent nerve block that my pain dr. could take care of -- I've already gone through 2 temporary ones with him.

I don't know what to do. Both are risky, and I'm a poor risk-taker. A goof-up in either one can interfere with bowel, bladder, and sexual function. With Sheri's incredible research, I'm finding out more ((HUGS to Sheri!)). But I was also wondering if anyone here has had personal experiences with either of these, being that your pain has persisted for so long!

If you can help me shed some light on these choices, please let me know. I'm grateful you've taken the time to read this tale in the first place!

Thanks, and my sincerest wishes for painfree days to all,

Hannah
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  #2  
Unread 04-28-2003, 09:41 AM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

Hi Hannah,

I had similiar symptoms. Diagnosed 13yrs ago with endo but my sister had hyster that year for same thing & told me not to do it. Also there wasn't a lot known back then. Suffered until became really bad a couple years ago. Different dr diagnosed menopause & will get better . Became worse & went to new gyn in town. New dr had a fit & rushed me into surgery, endo & adeno had attached itself to bowels, bladder etc.

To make a long story short I have had to fistula operations (holes in my bladder) & having a 3rd hopefully this Friday. If I had had the surgery years ago or at least 2 years ago I probably wouldn't have had all the complications.

I am not saying surgery is the answer but don't take endo lightly. Keep a close eye on it & have it treated.

Good Luck,
Terry
  #3  
Unread 04-28-2003, 10:24 AM
Thanks for your thoughts, redapple

If I understand you correctly, I think you're saying that the best thing to do is just nip further problems in the bud and go for the hysterectomy. I appreciate what you're saying. It certainly is an option, and many doctors do agree. I could easily be accused of searching out someone just to agree with me, right or wrong.

I hope no one thought I'm suggesting that hysts are a mistake -- of course not!!!!!! No one here has made a mistake. Many women have become painfree, and many women's lives have been saved, their bleeding was so severe! So thank g-d for the vast majority of hysts. (Even those who still hurt should not regret anything; we do the best we can with what we know at the time, as with all things in life. Blame is TOXIC!)

I, by contrast, have pain as the main and really only symptom; not-all-that-heavy periods were easily controlled by the Pill, and I have only a 1cm external fibroid. So this dr's reasoning is: go after the pain first. If I develop complications later on, then it would be perfectly reasonable to have a hyst then. Just not now.

I'm considering the nerve approach only because, to me, it makes scientific sense. I'm nearly 40. My endo has been at Stage I-barely II for probably my entire reproductive life. No dr. I've seen expects my case to progress much, especially as I become perimenopausal and then menopausal. In other words, I'm in the home stretch; though a long one as my mom didn't hit menopause until 55 or so. Maybe I should've had it all out when I was younger, but I didn't as I was still pondering kids (never did try).

To me, the "pain-gate" theory -- sort of like the phantom pain of a body part no longer there -- makes sense. So I believe that the only way mine will stop is if the nerve is forced to stop "firing." It's just my view, for my body, and I wanted to see if anyone found herself in similar circumstances. My intention was never to offend; if I have, I am so, so sorry.

Thanks again for your view; and I'm so sorry you've had to suffer so much. I will be thinking of you on Friday and sending positive thoughts; I hope it goes well and that you finally get some relief!

((HUGS))

Hannah
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  #4  
Unread 04-28-2003, 06:28 PM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

Hannah!

I have not had either of the procedures you spoke of so, I can't offer you any advice on that. However, I can tell you that a hyst doesn't cure endo. Endo is fed by estrogen and as long as you still have estrogen there is always the possibility of endo coming back. If heavy bleeding is not a problem with you then I think you are wise to go the pain relief route. I don't regret my hyst, because, if nothing else, it stopped me from bleeding for 2+ weeks a month. I do think it should be a last resort thing and that other options should be tried first. It did not get rid of my pain and I am still dealing with those issues. Good luck to you regardless what you decide!
  #5  
Unread 04-28-2003, 07:16 PM
PSN

Hi Hannah!

Sounds like you're going for the surgery? I posted over on the Pre-op board to answer you a while ago, but just to recap: I had the presacral neurectomy for suspected adenomyosis -- my only symptom was severe pain. I am not sorry I tried this -- much less recovery than the hyst! and I had hoped to try for another baby or so. But I'm sorry to say it didn't work for me. And the hysterectomy seems to have -- at least my pain is so much less severe, and lessening all the time, though not as fast as many of the sisters, at 4 months post. My pelvic pain has been thought to be pretty much completely from adenomyosis.

I have had some complications -- tailbone pain that won't go away and increased clitoral sensitivity. Weird, huh? But I am not sorry, again, I tried this before the hyst. And hopefully they will do the procedure with the scope so that you will have an easier recovery (I did -- I still had the 6 weeks off work, but nothing like the abdominal surgery).

I think, honestly, not to dissuade you, that the hardest part for me was that at 6-8 weeks post PSN, I realized that it really didn't work at all. I became very depressed, and also had all the pain to deal with. Some women have had great success with this procedure though! Hopefully some will come along and post soon. (Please remember that often people won't be posting on these boards if the surgery worked and they are no longer having pain)

While I've got you online, would you mind emailing or pming me with some of the details of your physical therapy? I have been thinking I need to try something like this for what remains of my pain. Thanks!

Make sure you keep us posted with the details so we can cheer you on.
With love,
Loretta
  #6  
Unread 04-28-2003, 07:19 PM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

HI girls

I've gotta be honest....

....my hyst *did* completely cure the pain from both the endo AND the adeno....and I kept both ovaries. I'd tried laparoscopic treatment for endo, along with Lupron - neither was a realistic long term option for me. Before the hyst, I had debillitating pain (along with bleeding) on a daily basis - enough for me to take narcotics and then have to stop working. So, the hyst was completely curative in that context, for me.

Obviously, this isn't the same for everyone - I just wanted to give my point of view.

Has it solved all of my problems?

Actually, no...but that's a little different. The pain I have now is from adhesions, not from endo (and obviously not adeno...lol), but that's a different story.

Anyway - that's my 0.2c

s and blessings,

Tess
  #7  
Unread 04-28-2003, 10:03 PM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

Hi Hannah

I have no experience in the procedures you are refering to but I just wanted to pop in and let you know that I pray they work for you..

I had stage 3 endo and adeno along with PCOS. I had no choice but to have it all removed as I would probably have bled to death and the pain was horrific.

Everyone has different reasons, experiences and outcomes to their decisions for having a hyst and I really wish they were ALL good ones. It is a decision ONLY you can make.

I do not regret having mine at all. The only thing I do regret is not making him remove the endo the first time around. I can not honestly say 100% that endo is the cause of my recurring pain, but is the exact same pain without the organs. If I had to make the decision all over again, I would make the same one with a few adjustments.

If I could have gone a different route I would have and I am soo glad that you have researched enough to know that you may have an alternative for your pain. You did not offend anyone so dont apologise, some women were not really given a choice and some were led in the wrong direction with having ovaries removed and so on, but we all live with our decision and I personally have no regrets.

I hope you find relief to your pain and we are here for support!

HUGS
  #8  
Unread 04-29-2003, 06:27 AM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

((((Hannah))))

I want to wish you all the best in your quest for better health. I had my LAVH/BSO 2 1/2 years ago...and I am still struggling with the pain that Endo causes. I had a lap done approx 8 months after my hyst., and more Endo was found. I still have it, and I am still in daily pain.

There are so many different theories regarding Endo. My docs are telling me (and I have read here) that even though I am no longer taking HRT, that they suspect my Endo is producing it's own estrogen. Who knows, they are even thinking that there could be a little piece of an ovary still inside of me.

I am in a wonderful pain clinic...and they continue to run many tests in hopes of getting rid of my pain (one day). I know that I can't look back, but sometimes I think that it would have been great to have found this clinic before I had my hyst., But you can't look back...

I hope and pray that these procedures work for you. Please let us know what you decide.

Sending you many S
  #9  
Unread 04-29-2003, 06:37 PM
Thank you all so much for sharing your points of view with me

It's enormously helpful, as my experience on this board has been even since I was just a curious, frightened (well, I still am, somewhat! ;-) lurker here. I feel as though I've known many of you a long time from just reading your posts. ((HUGS)) to all of you.

I have not yet decided which path to take; in fact, today's visit to the pain dr. was a scary yet definitive one. He knows I'm growing more and more tolerant to the meds and am suffering despite them; so it's become clear he will not simply continue to write script after script for me - he wants me to fish or cut bait. It doesn't have to be HIS procedure (nerve block), he would support my going to the specialist for a PSN and even said, if this dr. deals with pelvic pain and endo all day, he may be the better choice. As he emphasized, though, no one can make that choice except me. In the old days, doctors were the bosses; you did what they told you - and you accepted the consequences, good or bad. Today, the patient is the boss, not just because society has evolved and we have more rights, but because of the litigious nature of this new society; if people sue for coffee being too hot, of course they'll sue over poor outcomes from medical procedures - even those beyond anyone's control.

But he did offer me a third option; an intrathecal medication pump. I am seriously considering it. In a way, this could not have happened to worse person, as I tend to look back at anything and everything in my life, see my mistakes, and blame myself. I do not want the medical option I choose not only to cause me more medical problems, but to throw the weight of even more self-blame on my already aching shoulders! (I still find ways to blame myself for my parents' deaths, Dad when I was 21, of non-Hodgkins lymphoma, and Mom when I was 31, of a rare cervical cancer mostly seen in smokers -- yet another reason to quit NOW if you smoke. "Why didn't I know about bone marrow transplants back then? I would've been compatible with my dad, I'm sure. Why didn't I insist that anything be done to save him? Or, "Why did I let my mom go for years without getting PAP smears? Why didn't I stop speaking to her until she quit smoking?)"

So you see the kind of conscience I'm dealing with, here. This is the way I am, no amount of therapy could possibly change it.

Judester, you are one of the Sisters whom I feel I know simply from reading your posts; my heart goes out to you, too, and I continue to wish you the best of luck. Endo IS a mystery; the specialist I went to could not tell me why I have so much pain from so little disease, but he knew it was real, thank g-d. From the exam, he could tell I'd been told a load of bunk before about having trigger points and such; he could find no trace of any such thing.

Which brings me to Loretta...thanks to you, too. This does not mean that trigger points and pelvic floor disorder do not exist. I just don't happen to have them, so what little PT I had was a complete waste of time and money and also increased my pain significantly; since no one where I live performs this type of therapy, I had to drive into NYC, itself a huge stressor. Afterward, I would drive home in such pain that my teeth were chattering and I'd be in a cold sweat - in the middle of Summer. I'd have to take double pain meds and lie under layers of blankets, curled up in a ball...

The whole tale is in my prior posts in the other sections, but basically my internist sent me to a gyn surgeon/supposed pelvic pain specialist she knows on the West Coast to decide what to do about my case. The PT on her staff diagnosed me with pelvic floor tension by using a probe that's inserted into the vagina; the pressure is measured by computer. You have to clench and unclench to measure your strength; this is also often used as a therapeutic tool, on small devices you rent from medical supply companies. I was supposed to have PT to "loosen things up" and therefore get a better result from the hysterectomy I was told I should have afterward.

Once back home, my internist said, I'll make sure you get the owner of this great PT practice; she's the best and most experienced. It didn't happen; she was teaching and then otherwise overbooked. I got a young, inexperienced therapist who did not or could not explain what she was doing to me or why, and who had never worked on a pelvic pain patient before. She could not answer any of my questions; all she did was encourage me to keep booking appointments. (I'd even asked to meet or have a conference call with her and her boss to go over my list of questions, but it never happened.)

I stuck it out, obediently, for six weeks, so that no one would think I just wanted drugs for the pain or that I wasn't "trying" hard enough to get well. As if overcoming this horrid endo pain were a matter of sheer will!!!! I'm still furious with myself for buying into this crock.

What actually took place was very simple: Kneading my pelvic area all over, in rolling strokes with a horrendously painful pinching of the flesh between her hands at the end of each; theh, as part of this, digging into my right and left sides to try to release the "soaz" muscle, which was apparently buried deeply in my musculature. Then there was "internal work" where she would put a glove on and insert her fingers into my vagina and try to press out trigger points along the vaginal wall. She would use the other hand to press down on my abdomen.. The end of the session consisted of 15 minutes of lying under heated pads and, at the same time, receiving electrical stimulation on my abdomen.

At home, I was supposed to use a set of glass tubes of varying sizes, I guess they could be called dildoes, to do the internal work myself, so I wouldn't need to have her do it; I was supposed to be better able to feel which areas needed to be "worked out." I had to buy these tubes, which cost $40. At the beginning, I rented that medical device I mentioned, the one that's supposed to measure your pelvic tension as you do squeezes. The point is to lower it when you're at rest. Eventually I returned the device, as I didn't see the point. As for the tubes, I tried but couldn't tell where any trigger points were, so I didn't continue to use them.

Of course, there really weren't any; and it's not as if they could've gone away between the therapy and my exam by the specialist; my pain has only gotten worse over time, so if they were ever there, they'd be there now. They aren't, and there's no evidence of my ever having had them.

So, Loretta: for me, this was an expensive, painful nightmare. That's why I posted it in the forum and not privately: I want women to know it can be a racket that steals shamelessly from those desperately in search of a solution to their pain. But having said that, I am sure that there are competent, honest practitioners out there. Before you go, make sure you get at least two opinions confirming that you do in fact need it, and if possible, personal referrals from the practice's patients. Also, be aware that it's a huge time commitment as well - 2-3x per week, 45 min to an hour each visit.

vbjacks5, I have never had problematic bleeding whatsoever; yes, the typical heavy, irregular, and clotted periods that go along with endo, but nothing that made me anemic or go through 2 pads an hour or anything like that. I guess my only abnormal bleeding was premenstrual spotting; the Pill took care of that. The only symptom is pain, pure and simple. This is why the specialist said a hyst would do no good for me. For ME, that is; he would never make the blanket statement that no one should ever have one and neither am I. In your case, it was clearly and unequivocally indicated. I am so glad you're better now! Pam01, I totally agree with you; your life is more important, and your surgery was obviously necessary. Thank goodness you took your right path! I'm sorry your pain has recurred, though; but I hope it's nowhere near as bad as it was before the hyst.

Tess73, it just goes to show how individual each of our cases is. My adeno is not severe, as shown on MRI, and it causes none of the symptoms that lead any dr. to believe a hyst is required for it. My pain has been diagnosed as typical end-stage pain from endo. That is, my endo is only Stage II or so, but the pain turning from cyclic to 24-7 is considered end-stage. I am so glad your hyst helped; sorry about the adhesions, though. I hope you will improve.

So that's my long, involved story, and the reason I'm looking for answers to my concerns about these two nerve-related procedures. I will have to make a choice, and soon. With all the experiences you've shared and the help I've received from many Sisters ((HUGS to Sheri and Beth again, as well as KatyBelle and Cristywisty!!)), my task will be a lot easier.

Good night, and painfree wishes and ((HUGS)) to all of you brave survivors! You give those of us still on the other side SO much hope....

Love,

Hannah
  #10  
Unread 04-30-2003, 04:21 PM
Dear Hannah

Thank you for sharing your story!

I know how hard it is to make these decisions, and how ready you have to be for any of them, and sometimes we might just spend some time wishing none of this had ever happened. I had my PSN because I really wasn't very well-informed -- the Dr. I saw brought it up about 5 minutes before surgery, and I just said "Well, if it's not going to hurt anything ..." Little did I know there were many risks. It took me awhile to get over what felt like a violation of trust at the time to realize that I really would have tried the procedure before the hyst. I would really recommend going to see a specialist if you choose this option because to the severity of potential complications.

Since my pelvic pain is so much better, I have been focusing on treating my arthritic condition, and am still in a great deal of pain with that. It is easier for me to deal with now that the pelvic pain is so much better, though it really hurts, especially with spring weather changes. I am lucky to have found a Dr. who is not minimizing the pain I feel and we are really working on finding curative treatments as well as adequately treating the pain (this short and long term concurrent approach really helps me conquer the depression that has come with the chronic pain). I just saw her this week and we are trying glucosamine/chondroitan, which from what I understand, can't really hurt anything and may help.

I am getting awfully tired of being on pain meds all the time, though, which is a real quality of life issue with me. I feel like they have truly saved my life and restored me to a higher level of functioning than I would have had for several years, but even in reducing my doses, which I was able to do after the SAH, I am so happy to have less fatigue and fogginess which the narcotics cause for me. I had some unpleasant physical withdrawal symptoms for a little while, also, but nothing unmanageable. But I find that I really miss my life and myself without drugs, and still look forward to a time (God willing) when I don't have to take them at all. So that is something to consider, I guess, about the intrathecal pump. I imagine that tolerance builds to the medication no matter how it is delivered, but it may be a longer time? So you may have another decision point a bit further along the road.

I wish you so much luck and clarity in your choices. I have found great grace in asking God for direction with my decisions during the pelvic pain experience, though, truly, I did not like his answer at all that I was not meant to bear more children, and still it breaks my heart. Why would such a thing be when I have always known that this is my reason for being? But everytime I asked, I received some kind of confirmation that, yes, I am where I was meant to be, but not really to know why. If you ask for and listen to this, I know you will make decisions that will grace you and your life.

Blessings and prayers to you,
Loretta
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