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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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Unread 04-30-2003, 07:09 PM
Hi Loretta

Thank you for reading it! Sorry it was so long....I hope that you continue to mend and that the more wholistic methods stop or at least lessen the amount of pain you're living with right now. I know they have for many people. They are one of the many things I've tried along this road; everything from vitamin supplements to customized bags of Chinese herbs that I was supposed to boil and drink several times a day! How nasty-tasting they were, though I often wish I'd held my nose and given them more of a chance; after all, Asian and Ayurvedic medicine have been around longer than Western.

I know what you mean about consulting experts; your advice is very, very well-taken. DH and I have flown or driven to several cities all over the U.S. to see many of them. I obtained their names from researchers in the fields of pelvic pain and endo. These researchers ARE M.D.s; but often they do not do clinical practice, just research. Or if they do see cases, they see only a few that are very carefully chosen after a review of her records. I submitted my info to one M.D.-researcher at a university here on the East Coast, but was not accepted -- my case was too garden-variety, I guess! But she did take the time to talk to me by telephone and recommend several full-time, practicing pelvic pain/endo specialists who, she assured me, are up on the latest findings and techniques. I was grateful, as I was through with drs who treat endo only as a side problem. I wanted to see drs who treat what I've got and nothing else!

So that's what I did; my choice of the two procedures comes from one of the pelvic pain experts she recommended to me. He is so sought-after, it took 2 months to get in to see him! Now I see why, though; after being examined by him and spending 2 hours speaking with him, it is clear that he knows this illness COLD.

It's a consolation to me to have made all these trips and seen so many specialists, but you know the feeling when you've found the right dr. to trust - it was all worth it. Now I just have to fish our cut bait!

Thanks for your help....and take care!


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Unread 05-01-2003, 07:05 AM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

Dear Hannah,

You have been on my mind sister I'm not sure if another sister has posted this or not...but wanted to mention that the amount of Endo you have does not reflect the amount of pain. I'm not sure if that makes sense LOL! I had severe Endo...and did a lot of research. What I found is that some women can be loaded with it, and have zero pain. Some women can have one microscopic dot and be in terrible pain. Another reason why this disease is so misunderstood. Please keep that in mind....

I will continue to keep you in my prayers. If you ever want to chat please feel free to e-mail me anytime. I also know of a sister who battled Endo for a very long time...perhaps she could offer you her own insights/experiences.

If I were you, I wouldn't rush into any 'risky' treatments. Perhaps you need some good pain management right now ( I'm not sure if you are already doing this). Try to buy yourself a little more time...and I truly believe the right path will become clear to you.

Sending you many S
Unread 05-01-2003, 08:13 AM
Judester, thank you so much for your post!

I've thought of you very often myself: it's no exaggeration when I say you're one of the main reasons I finally showed my face (so to speak!) after lurking here for nearly two years.

Yes, I have an excellent example of the amount of endo not equalling the amount of pain; my own cousin. She had a lap due to infertility. All that was known for sure was that she had a few small fibroids, and the drs were going after those via a myomectomy.

Well, she was found to have Stage IV endo and then some! She'd had no unusual cramping whatsoever-only a slight pressure when urinating, from the fibroids! I'd already known about my own endo and was shocked. In any case, her tale has a happy ending; a friend knew a pregnant woman who could not keep her baby and wanted to find a good home for her. My friend and her husband adopted this very lively, bright child and could not be happier. (Btw, fertility has, ironically, never been an issue for DH and me. We simply never saw ourselves as parents and still do not -- though more than one dr. tried to nudge us into it as a cure. They should read this board and see how much of a "cure" rate pregnancy really has!)

You were very on-target to mention pain management; I've been in it for 2 years now. (It included not only meds but acupuncture - my second time, a TENS unit, applied kinesiology, and the heinous physical therapy I wrote about a few posts ago.)

The reason I'm being forced into a decision is that I'm becoming tolerant to the meds-very tolerant, and it's no longer feasible to keep increasing the dose of the only med I can tolerate (you name it, I've tried it). This is the reason I can't simply go on taking medication. (Though I could try the intrathecal pump; this, in fact, was the answer I was given from when I wrote in to their panel of doctors asking what to do next.) There is a risk of tolerance there as well, but the meds are given in much lower doses so they might work, and with fewer side fx. But as the dr. pointed out yesterday, who wants to walk around with a device implanted in them (which has to be refilled monthly, so you're still a slave to pain management), and which carries a risk of infection like any foreign body implanted in you-such as a pacemaker or spinal stimulator, etc.?

A presacral neurectomy has about as much risk as a hyst itself. Nerves are severed during a hyst, too, as I'm sure you know. The nerve block has been shown to be more effective and longer-lasting than that surgery, plus, it has the advantage of being far less invasive (also, less importantly, DH wouldn't need to take off work for 2 weeks or so. and we wouldn't have to travel to upstate NY and live in a hotel before being given the OK to go home). But it involves more guesswork on the dr.'s part; that's what has DH and me so worried.

Judester, I do remember most of your story, but I don't know if your residual pain and/or FM leave you housebound and/or unable to work. At this point I'm not only housebound, but mostly bedridden as well, though I force myself, pain or not, to walk on a treadmill several times a week and do stretching exercises. So some degree of risk outweighs the low quality of life I'm experiencing right now (just sitting up at the computer is an effort; the pain and meds combined leave me so fatigued). I'm not "officially" an FM patient; seems I've got another form of it - repetitive strain injuries. I saw an occupational dr. who confirmed that they are due to years of improper furniture and posture combined with insane hours as a corporate writer/editor at corporations where the only people allowed to take breaks were smokers! This dr. appears in forums and testifies before Congress, but it still hasn't gotten the laws re ergonomics the time I realized I was injured, I was self-employed, so I had no case with my last employer......what luck!

So that is the rest of my tale; your advice to buy time is very well-taken. Also, I will try to get an opinion from one of the researchers who helped me last year; she works on nothing but pelvic pain, so she ought to know what the relative risks are.

Absolutely, let's email one another and chat. I know Toronto a bit, although I'm sure it's changed a lot since I've been there.

Take care, and thanks again for your kind thoughts!

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Unread 05-01-2003, 09:12 AM
Questions re Presacral Neurectomy and Superior Hypogastric Plexus Blocks

Dear ((((Hannah))))

Please excuse my pitiful I swear, I feel like a complete idiot! I read through your posts several times (not today though)...and somehow lost the PM angle...and your tolerance to the meds etc. This happens to me often...I call it Meno-Fog/Fibro-Fog...and/or a senior moment at the ripe old age of 36

Yes...please e-mail me, and I can fill you in a bit more on where I am at now. I fear my post would be way too long, and I don't want to take over your thread.


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