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Five months post PSN-update Five months post PSN-update

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Unread 01-06-2004, 12:47 PM
Five months post PSN-update

Dear Sheri,
Many thanks for all the great information... perhaps you are an investigative reporter... or where one in a former life hee-hee.

I have hope that the PSN will provide some relief for me but am not counting on it... it is too hard to get your hopes up and then have something not work... so I just don't get to excited one way or the other anymore...

It took me a long time to reconcile with the hysterectomy option... but eventually I came to a place where I realized the potential benefits of doing the hyst outweighed any reason to keep my uterus.... and I also realized that some of my difficulty deciding was an emotional attachment to the darn thing (I know... kinda weird). Anyway, the hyst did help but I am still having trouble.... and I had been told by a top pelvic pain specialist that the Hyst (uterus and rt ovary) was my ultimate answer so sometimes it is hard to know who to believe. My local doctor had told me I needed a hyst but also my other ovary out ... and the ovary thing is the one thing I didn't do and that may be why I am still having troubles.

Anyway, I am rambling... sorry.

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Unread 01-06-2004, 01:44 PM
Thanks, Sheri..I had (have) many of the same concerns...

especially regarding opioid dosage - how high is too high, how much will be too much? And more important, why does it take the pharmacological equivalent of a Mac truck to kill my pain, even though I'm a small person? These questions seem to be unanswerable.

My dr., too, has assured me that there is no ceiling on the medication dosage. I'm glad to report that the PSN allowed me to halve the amount I was taking at the time of the surgery, but the actual number of mgs per day still makes other doctors' jaws drop when I write it on my medical history forms. I had been hoping to be able to reduce it much, much further, but the truth is that the lower amounts were not effective at all, not ever. In fact, until I found my current pain doctor, I was afraid to admit that the small doses weren't working. At the first pain center I went to, the otherwise wonderful doctor simply pronounced that "This medication will give you relief for 12 hours," so firmly that I was afraid to contradict her. With the doctor I see now, I didn't even have to ask him for an increase; just from examining and interviewing me, he knew I was not taking enough. (He cited my facial expression, posture, etc., in addition to the exam itself.)

I don't know about you, but I'm always paranoid of looking like a junkie or drug-seeker - especially since I've never felt any "high" from these meds. In fact, I'm infuriated at the abusers, who force the doctors, insurers, and pharmacies into booby-trapping the process by which we obtain our only relief. I can't count the number of times my prescriptions were shorted due to laws that my pain dr. says are no longer on the books in our state, or having them denied completely by the pharmacy b/c the doctor forgot to write the simple words "FOR INTRACTABLE PAIN" at the bottom of the slip.

Most recently, my doctor wrote an rx for a 90-day supply via mail order; one of the US's largest rx suppliers sent me a 30-day supply instead. I then sent them a copy of the latest state law, which they denied was valid. I'm still fighting it. I wanted to use mail order b/c my local pharmacy forces me to pick up my rx in dribs and drabs.."Gee, we only have 30 today....come back in 3 days and we'll give you another 30. The rest will be ready in 10 days." How can we even pretend to have a normal life when we're always chasing after relief? Some days, I want to avoid thinking about it. I become very angry when I'm having a rare good day yet still have to deal with red tape.

Anyway...I, too, am relieved to know that the pump is always out there just in case. That, or the spinal stimulator (which I find more frightening, for no reason I can pin down really). I'm holding out some hope that menopause will give me some relief, if I haven't had a hyst before then. The fifteen or so years it will take to get there, based on family history, are not going to be easy....then again, the past 30 haven't been a picnic, either!

I wish everyone a painfree, peaceful day....


Unread 01-06-2004, 02:52 PM
Five months post PSN-update

Dear Hannah,

It is so sad to hear how much pain you are having even after a PSN 5 months ago.

I was just wondering if the doctors think you have some sort of nerve damage or nervous system problem... either in your pelvis or a problem at the nerve root like that "pain gate theory" (I think that is what they call it).

I know I have some wierd stuff going on with my nerves from the years of pain... I have myofascial trigger points all around my pelvis which I have been told is neuropathic in origin, and my bladder frequency seems to be related to some neuropathic process because it calms down enormously on a very low dose of Elavil.

The Pelvic Pain Specialist I saw in Denver (at the UNiv of COlorado medical center) thought my pain was all neuropathic in origin but in the end it didn't respond to his treatment like it should have had it been completely neuropathic ...

It was also the same with the PS nerve block... THe pain mgt doctor used Marcaine for the nerve block since it is long lasting... but I only found relief for about 2-3 hours each time which was how long until the anesthesia starts to wear off.... The Pain mgt doctor indicated that had it lasted longer than the anesthesia it would have indicated a part of the pain was neuropathic (nervous system problem) in nature.

I hope you don't mind me asking. I have just found over the years that the treatment/surgery/whatever was always more successful when the diagnosis was more accurate (ie. like the surgery after the pain mapping).

You also mentioned a bad experience with Neurontin... I was just wondering about that. I had a bad time on Neurontin and it wasn't helpful but I have found Elavil helpful in minor ways.

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Unread 01-06-2004, 06:53 PM
Five months post PSN-update

Sarah and Sheri -- I've wondered about the sciatic nerve. I've battled with low back pain for five or six years. It used to be the case that I only had the back pain when I was on my period, but now it's an everyday thing. I saw a chiropractor for several months, but it didn't help. There was a short period of time where the pain would shoot down my legs and cause me to collapse, but like a number of my problems, it tends to come and go, making me skeptical about whether or not I have a real problem. After speaking with my surgeon today, he feels that it [my leg pain] might be an inflammatory response. If I am still having pain in my right leg one to two weeks from now, he suggested that I make an appointment with my neurologist. I briefly saw a neurologist in May because half of my face goes numb with no explanation. We ruled out MS because I have a family history.

We talked about neurostimulation in pain management, but the battle with insurance would have proven to be difficult. I didn't have the right time frame to try such a procedure. By the time I gained authorization, I'd have to wait months before having the test run in the OR. It's not that all battles should be simple when dealing with aggressive diseases, but it wasn't a battle I personally wanted to fight.

Hannah -- I was repeatedly turned down for a PSN. There are a handful of doctos in the area that can perform such a procedure, but no one wants to take my case because I don't have a history of responding to treatment. I thoroughly looked through my charts today after my appointment, and as one of my past OB-GYNs put it, I am "difficult to manage." The surgeon I have now is the last possible person I could talk to in the immediate area, and I was terrified that he would reject my case, as well. I tried my hardest to get two of my OB-GYNs to at least agree to a laparoscopy. I was willing to pay for one, but they both refused to give me the laparoscopy I wanted for peace of mind. It turns out that I was correct (I'd love to tell them that, but it wouldn't accomplish anything) -- according to my latest pathology report, I did have endometriosis in the cul-de-sac (again). I knew my body, and those OB-GYNs said that I was wrong, that I did not have more endo.

I'm terrified to think about whether this PSN will work or not. I started my first period after the surgery today, and I am still having my "regular" cramps. What was your pain like after your PSN?

To answer your question, we were initially looking at oral doses of the "cocktail," but I didn't give it much consideration. I don't like my pain management specialist. He would lecture me about wanting a PSN, and he was rarely at my appointments. If I'm paying to see a specialist, I want to see the specialist. I could never ask questions about treatment options.

I went on Neurontin to try and help the chronic pain (I was already on Elavil), but that was a horrible experience. There are lawsuits in the making against Pfizer, but I'm not interested in suing them. I can think of better things to do with my time.
Unread 01-06-2004, 06:55 PM
Five months post PSN-update


I forgot to ask about the Norethindrone. Can you give any more details about your experience with this medication? Prior the surgery, my doctor wanted to try this option after I had ample time to recover.

Unread 01-06-2004, 06:58 PM
You're exactly right. The surgeon does suspect nerve damage,

especially after seeing the amount and location of scar tissue from previous endo and laps. Both he and my pain dr. have mentioned that I'm a likely example of the pain gate theory, having had such severe pain since I first began menstruating.

As for trigger points...the first PT who examined me, who worked in the facility owned by the Seattle-area surgeon, said I had trigger points and pelvic floor disorder, or tension. That's how I ended up going through six weeks of PT torture in New York, which made my pain levels absolutely soar both during and for a while after the "therapy." I would drive home in a cold sweat, then take a double dose of breakthrough pain meds and lie under three blankets, shuddering with pain - in midsummer.

When I finally made it to the surgeon who did my PSN, his exam revealed no evidence of TrPs nor pelvic floor disorder - nor there ever having been there. I was supposed to have at least three months of PT, though I could stick it out for only six weeks. Even that was a mistake, but I did it so the Seattle surgeon would take me seriously; she's a big proponent of the mind-body connection and the need to help yourself, etc.

It took me longer than it should have to recognize this as a positive spin on good old-fashioned victim blaming: If a mere effort of will could take our pain away, none of us would be here right now. It's a tremendous relief to free yourself of the mind-over-matter, positive-thinking-only theorists. Turn their beliefs around, and the blame for being ill in the first place is squarely pointed at the patient. No, thank you!

As for meds...Neurontin at a very low dose is not bad. I may give Topamax a try, though I'm not optimistic as I could not tolerate Gabatril. I react awfully to tricyclic antidepressants such as Elavil - even when I cut the little blue 10 mg tabs in half! They make me drowsy but, at the same time, give me palpitations and anxiety. So I get this horrendous feeling of being wide awake and on edge but with my head in a fog. Effexor was one of the worst experiences I've ever been through; I knew it was part tricyclic before I took it. But I agreed to try it to show my internist that I was making an effort to get better. (She had suggested it as a panacea for all my symptoms, from fatigue to my upper body pain from RSI. She's very robust, herself, and is a true mind-over-matter type of doctor. Which is why I'm looking for another internist!)

I'm very sensitive to meds in general; that's partly what makes pain management especially difficult for me. Btw, my pain doctor also recommends dextromethorphan, the cough syrup ingredient, as an adjunct to opioids. It's OTC, in capsules, and called Dexalone - so you don't have to swallow spoonfuls of syrup and/or take other unnecessary ingredients. sells it, if you can't find it anywhere else. If nothing else, it helps me sleep better.

It's so strange how these doctors' views on the origin of our pain conflict with one another! When my nerve blocks were successful, even briefly, my pain doctor said that this was a good indication that a PSN would help me. It seems he was at least partially correct, though I'd guess the PSN can't work on the entire pelvis. I'll have to ask at my next appointment.

If I disappear for a few days, it's b/c I have lots of appointments and paperwork to take care of...hopefully one of the appointments will yield more insight as to what's going on with my pain and what I should do next.

Thanks to all for your help and wisdom! See you soon.


Unread 01-06-2004, 07:43 PM
Five months post PSN-update

Sarah -- What was your experience with Neurontin?

I require high dosages of medications, and even then, they rarely do much for me. I'm up to 1300 mg of Percocet 10, which barely phases me. I'm on 150 mg of Elavil to try and deal with the chronic pelvic pain, but I will probably have to increase that, as well. My body has a high tolerance for most medications, which only succeeds in confusing my doctors. It's like I'm "immune" to most medication.
Unread 01-06-2004, 07:49 PM
Five months post PSN-update

Dear Hannah,

I can relate to the sensitivity to drugs. I had a horrible time with neurontin... I could not function even on a low dose and I did try it for 2 weeks before giving up... I at least have to be able to get out ot bed or what is the point.

I have tried the Topamax but do not recall whether I had trouble taking it... at the time it didn't help but I still had alot of internal endo and adeno at the time so maybe that was why.

I really really made an effort with the Elavil. I was exhausted for several weeks and would hardly be able to stay awake in the afternoons... but in the end that wore off and I almost couldn't tell I was taking it. It didn't really help the pain that I could tell (maybe it did and it was so gradual it confused me) but it did help my bladder quite a bit.

(((CHRISTY))) The Mayo doctor I am seeing said it would be months before I would know the full affect of the PSN.... and I have already had a hyster... so hopefully time will be helpful. I think I already included the statistics on the studies... at one year out 80% of women treated with PSN and endo removed had much improved pain levels.

AND the Mayo doctor also said that in the end, chronic pelvic pain patients rarely become completely pain free and he commented that they think it may be because an imprint of the relentless pain is left in the brain.... that is why he also told me that his hope for me is that after the surgery I gradually notice less pain and that year to year it becomes less and less.

Anyway, just passing along what that doctor told me.... and he does alot of PSNs for pelvic pain.

And one last very very humble comment about the attitude thing you mentioned (((Hannah))).... I have to admit for myself that it helped me tremendously when I took my trusted Gyns advice and changed my attitude about the problem and started to focus positively and constructively forward and outward, and delve into a hobby I am passionate about... (I guess they call that the power of positive thinking) .... I think my MIL was a great inspiration for this as she lives with horrible back pain from osteoporosis and joint pain from RA... I thought if she can do it so can I... I also went to counseling for chronic pain management and that was very Gyn often comments to me on the progress I have made over the years in that respect.... it is a life journey that is for sure.

Anyway the big thing for me was that I thought one day... I don't want my obituary to read " oh poor Sarah... she was the one who suffered from pelvic pain..." who wants to leave that legacy.... so I just stopped feeling sorry for myself, left my pity pot in the closet and tried to write a new and better chapter. I also thought that the endo/adeno had taken so much from me that I just wasn't going to let it have any more. I wasn't going to let it define who I was anymore I was going to try to rise above it (so to speak). ANyway, I have to say it was the absolute best thing I ever did for myself. Please don't think I am writing this in any other way than to share how very very helpful it was for me (even though I am still having pain problems).

Many kind thoughts and gentle ((hugs)) as you both continue your journeys on the road.

Unread 01-07-2004, 12:14 AM
Pain response to PSN and later hyst

Dear Christy,

I had only adenomyosis, not endo, and my pain did not respond that well to the PSN -- it has completely, eventually, responded to the hysterectomy. The response that I did have to the presacral neurectomy took the form of less pain with activity. Which was a great blessing, as I have always been a very active person. I actually had a uterine suspension at the same time, so it is hard telling which procedure made the difference. But I had less pain during physical activity after the PSN, such as walking and bicycling. At the end of the day, my pain was the same as it was before my laparoscopy/PSN/suspension. It took about 2 months for me to realize these benefits from the PSN. At the time, my pelvic pain had been severe, but of only about one year's duration.

After my hysterectomy one year later, and I am sure because I had such unrelieved and severe pain before, it took me many months before I was sure the surgery "worked." The pain, especially after moving around at all, felt identical to my pre-hyst experience. It felt like my painful boggy uterus was still attached to all those nerves. As the pain faded over the course of several months, I noticed a great deal of residual pelvic tension, which took a concerted effort in relaxation (and massage) and yet more time to resolve. But it seems to be completely gone. So please keep hope for lasting pain relief from pelvic pain -- for me the solution was the hysterectomy.

Oh Christy and Hannah and Sarah, I hope the PSN works better for all of you than it did for me! I wish you all so many many painfree days, and the experience that I had of realizing the pain continued to get signifiantly better, long after the "average patient" (whoever that may be) was feeling more pain relief. Please let us know how you are doing!

With love and light,
Unread 01-07-2004, 07:31 AM
Re meds and attitude.....

I can't believe that some people can take into the 1000s of mgs of Neurontin! I could barely take a 100 mg capsule 3x/day. My side effects were a complete loss of short-term memory (when reading the newspaper, it was a waste of time for me to read an article on the front page and then turn to the continuation - by the time I got there, I'd forget what I'd just read half a minute ago!), dizziness, drowsiness....the only positive was that I slept well on it.

I did not mean to sound like I believe in sitting and scowling and feeling sorry for oneself is the right way to be. My gripe is solely with doctors who want women (especially) to toughen up. They are no better than the pediatrician who told my mother in 1974, when I first got my period at age 10 and the suffering began, that I had pain because I "didn't want to accept growing up and becoming a woman." My sister and I were listening outside the door, and my mom confirmed what he'd said. I guess she didn't contradict him b/c back then, you just didn't; also, among the women in my family, pain was the norm. From his comment, you'd think he'd treated me a zillion times for scrapes and bruises from sliding into home base and falling out of way! I was an incredibly girly girl who in truth, loved frilly dresses and couldn't wait to be allowed to put on heels and makeup...he couldn't possibly have known my attitude b/c he'd never asked me - and this doctor was a friend of the family! My experiences since then haven't been much different, except for my current pain doctor and surgeon who know to place the blame on biology instead of psychology.

I do the best I can to keep a smile on my face for the sake of my DH, family, and friends - though as I'm sure you know, when the pain is severe, you can't fool the ones who know you best. It is kind of frustrating to me that the meds sometimes make me unable to drive (when I need a breakthrough pill, which I try to avoid) and work. I'm hoping to have more energy when my thyroid problem is straightened out.

Take care everyone!


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