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

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Unread 01-05-2004, 12:45 PM
Five months post PSN-update

some researchers are saying to put teen girls with "killer cramps" on the Pill.
I inquired about this about 15 months ago at which time they started her on them. It has helped some but they also make her suffer some pretty funky mood swings She gives a new meaning to PMS but I deal with it seeing as they do help her pain & periods. She started her period at 11 & the cramps were enough to keep her in bed I knew then pretty much what we were in store for even tho I prayed she would not have to suffer anywhere near what I've endured! I still hold out hope for my middle child. She is my only other Daughter, she turned 11 in Oct...same month as my oldest DD turned 15....

I've read in-depth about the retrograde menstration & believe it to be a major factor in the development of Endo. I'm also noticing many more Researchers adopting this theory as well. If you havent already, pls check out:

It is awesome & contains a more indepth look at the many aspects of Endo!!
Thanks for the thots & info ((Hannah))

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Unread 01-05-2004, 02:18 PM
Thanks so much for the site!

Poor DD! I will keep her in my thoughts and send healing wishes....btw, since the current Pill is giving her trouble, does her dr. think a low-dose Pill like Alesse could be better? One dr. told me that low-dose ones aren't that great for endo control, but when I was on it, I had no PMS whatsoever. In fact, the brief timeframe that it helped control my endo pain (about three years) was one of the happiest, most productive times in my life; it's only when you get a break from this plague that you recognize its true horror!

I really do feel for your daughter; I had a nightmare of a time, too, and missed days and days of school b/c of it. At least the Pill ensures that she'll be regular. For me, the worst part was never knowing when it would start - meanwhile, my sister could set her watch by hers! Skipping periods, for me, didn't mean a break from pain or discomfort, though. When I missed one or had an especially long cycle, it just meant more time with PMS, swollen and miserable (and in my 20s, premenstrual cramping and spotting from endo that kept taking up more and more of my cycle) and a heavier, more painful period when it finally arrived. I was told numerous times that it was part of adolescence etc.. As I got older and was dx'd with Hashimoto's, I was told it was part of being hypothyroid and that the thyroid med. would even out my cycle. It never happened. Alesse was great for that; I had hoped it was my ticket out of this Hell, that I could take it the usual way (3 weeks on, 1 week off, with a light period and mild -for me - pain) until menopause. That wasn't in the cards, though.

Another thing the researchers are watching out for in endo patients - the relationship to autoimmune diseases. It was almost a relief when I read that Hashimoto's is highly correlated with endo; I had been blaming myself for getting it ,as I've got the stereotypical profile for "career woman's disease." I tend to believe the researchers who write that most if not all women experience some degree of "retrograde menstruation." But those of us who have an immunity problem lack whatever mechanism or chemical keeps the tissue from implanting as it does in "normal" women.

If only they could solve the mystery and turn these genes to OFF permanently! Maybe in your daughter's lifetime...let's hope!

Take care!

Unread 01-05-2004, 04:33 PM
Five months post PSN-update


It's nice to see you on the boards again. I, too, have had a lot happen since we last spoke. I hope to catch up with you soon.

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Unread 01-05-2004, 06:37 PM
How nice to "see" you!

....though I'm sorry to hear you've been through such a lot. I've pretty much posted it all (b/c I wanted to share my PSN experience, sorry if it's too detailed or graphic or just plain tedious). I would definitely want to hear about your experiences if you're up to discussing them.

Unread 01-05-2004, 07:04 PM
Five months post PSN-update


Well, as you can see, I've got a few more diagnoses by now. Unfortunately, I have been through a lot of failed treatments (and bungled treatments, such as the case with Neurontin), fairly excruciating pain, lost hope, ignorant doctors, and close to 30 pounds weight loss due to the pain since we last spoke.

Like you, recovering from the PSN has been an improvement compared to how I felt on a daily basis prior to the surgery. It's still way too early to know the full effects, but I pray that it works. I searched for months to find a surgeon that would take my case. I don't have a history of responding to treatment, so that's why I was turned down so many times. My only options prior to finding this surgeon was 12 months of Lupron and/or a Morphine/Methadone cocktail, neither of which I wanted to try. I was desperate, but the last surgeon I talked to was the one that would make such a difference in my life. This recovery is nothing compared to the first one. I was nauseated from the Morphine/Toradol/Versed, but I never did get sick. I never bled like I did after the first laparoscopy. The CO2 was gone within a week. I even recovered from the anesthesia quickly and left the hospital soon after waking up. My only complaint for awhile was that my incisions were sore and something felt tight inside of me, like something was being stretched. That has almost passed.

Unfortunately, I ended up in the ER on Saturday. I started having pain in my right calf last Tuesday, and it progressed to my hip throughout the week. I called the urgent care to ask for advice, and I was sent to the ER. They did ultrasounds from the hips to the ankles on both legs, several chest x-rays, blood work, and a CT scan of the chest to check for pulmonary emboli (I was also complaining of chest pain). Fortunately, I did not have a blood clot, but it doesn't explain the leg pain.

The ER doctors didn't even know what a PSN was, so I called my surgeon today, and he wants to see me tomorrow. It's possible that it's a complication (nerve damage) from the surgery, but I guess I'll have to wait and see how this one turns out. For the time being, I'm on crutches, as I cannot walk or bear weight on my leg for long.

I worry about whether or not the PSN will work, but I know it's going to be awhile before I can see the full effects. I just got so used to planning for the next line of treatment before I was finished with the current one. I can expect to not respond to most of what I try. It's terrible to be cynical like that, but it's hard to not be when you live in that much pain.

I hope you find relief with the PSN.

Unread 01-05-2004, 10:10 PM
Five months post PSN-update

Dear Christy,

I am sorry you have been having such a tough time. I hope the PSN gives you relief. I have been told it can take a while before you realize the full benefit.

I have surgery for PSN/Possible endo on Feb 4th. I have already had a hyst but still have my left ovary. The surgery is at the Mayo Scottsdale.

One thought about your leg pain... I am wondering if some muscles have tighened up against your sciatic nerve... I have trouble with my muscles around my pelvis from the years of pain... and the nerve that runs down the back/side of your leg to your calf and the outside of your foot does not run through your pelvis.... BUT I know from experience that if your piriformis or obturator muscle get very tight they can press on the nerve as it travels next to the muscles... Those muscles can tighten up in response to pain etc....

When I had the PS nerve blocks done the doctor knicked or pressed against my sciatic nerve on the way to get internally to the PS nerve... it caused excrutiating pain down my leg. I am now having some trouble along that nerve path in both legs ... fortunately no pain just numbness....

Anyway, it may be worth checking into or asking your doctor about.... I have been having very gentle massage /PT and some e-stim to try to help. The PT has told me that a common cause of sciatic pain is spasm in the piriformis.

Best wishes for a quick answer to the leg problem.. and a speedy and uncomplicated recovery.


Unread 01-06-2004, 08:09 AM
Christy, I'm so sorry to hear.....

and am furious that you could be "turned down" for the PSN! I guess I've considered this voluntary surgery - if you have chronic pelvic pain, especially treatment-resistant, and want one, you ought to be able to get one w/o being put through the wringer of "approvals." That is just outrageous!

One question, if you're up to answering...I'm familiar w/both morphine and methadone (though I've tried only the methadone, orally, and couldn't handle the side effects of it), but is the "cocktail" done as a spinal injection? As my pain returns, I'm trying to piece together the various options that have been run past me since officially becoming a pain patient in 2001. (Luckily, I have a local pain dr. who is not only a member of the IPPS but one of the most empathetic, sensitive people I've ever met. But at first, I was sent by the surgeon who gave up on me after my 2nd lap, Stage II, to the pain dept. at a major NYC hospital. It was a hellhole but had been run by a whiz-kid doctor whom I still think of as an angel of mercy; she was wrapping up her career there, but still training residents in anesthesia, seeing tons of pain patients, and teaching - all while preparing to move out of state for a new job and planning her wedding! Still, she found time to give me an aggressive course of acupuncture in addition to my meds and refused to miss a treatment despite her incredibly hectic schedule. [It was the 2nd time I'd tried acupuncture, and the 2nd failure; it does give me some relief, but only while I'm on the table and the needles are in - it just doesn't last.] Anyway, she's out West now - I'd love to recommend her to anyone who needs a wonderful, compassionate pain dr. out there - just PM me for the info.)

The first pain dr. had proposed something similar to the PSNs we had, as I recall, but done first with an infusion of anesthesia directly into the abdomen - not in the back as in the nerve blocks many of us have had done. Apparently they will try this twice; the third time, a cryosurgeon freezes the nerve or it is severed. I have not discussed this with my current dr. and don't know if it's still considered feasible. My doctor and I have discussed implantation of a spinal column stimulator or an intrathecal pump, both of which I've resisted so far as I don't know enough about them - I will post that question here today. Another possibility I've read about, which your note reminded me of, was an idea I saw on (a good source for real-life experiences, especially the "Ask the Doctor" column - one of the notes in the archives is from me). The anesthesiologists on that site often mention a spinal injection of morphine as a long-term solution.

I would only add to Sarah's info about your leg that a friend of my sister's actually had endo tissue in hers, which caused pain. I do not know how it was found, I only know that she was on frequent courses of Synarel for it and that the pain was often too debilitating for her to walk. I hope you don't have this but wondered if it's something your docs considered....

Sending you healing wishes and thoughts,

Unread 01-06-2004, 08:53 AM
Five months post PSN-update

Dear Hannah,

A sacral nerve stimulator may be an option if you continue to have pain. This was suggested to me by the pelvic pain doctor I saw in Denver as well as a follow-up option by the Mayo doc if the PSN didn't help. My Gyn had not heard of it but the Urologist who treats IC had actually implemented it with several patients. It was my impression from him that the nerves for the pelvis orginate mostly from the lowest lumbar down through the sacrum... so that is why the sacral nerve stimluator can be helpful. I think it is pretty new.

I don't know about the spinal morphine... unless you mean it is in a pump and you can apply it continuously.. I had spinal anesthesia and spinal morphine with my hyst and it didn't work... but it may be due to the fact I ended up with a hole in the Dura that did not heal up... so maybe everything leaked out. I personally would be very wary of anything that requires putting a needle through the Dura.... that spinal headache was horrendous... just be aware of how delicately balanced that cerebral spinal fluid is and how the least little hole (that doesn't heal) can really make you feel horrendously bad.

Gosh, I almost think trying the hyst first before deciding you need a spinal thing sounds better but that could be because I had such a bad experience with the spinal headache etc.... please know that is just my very humble opinion with knowing only a very small portion of your experience.
Unread 01-06-2004, 09:45 AM
Thanks for this critical info, Sarah...

...there is so much to think about! I will probably want another pelvic pain specialist's opinion...though at some point I know I have to stop chasing down "the answer," which probably doesn't exist - or if it does, it's got to be dependent on each individual patient. I've never had so much as a spinal tap (nor an epidural, never having given birth), so I had not considered the risks of puncturing the spinal membrane. Your description gave me the's all so scary.

Yet I'd probably do something like that before the hyst. I have simply gotten such negative feedback about it, though - for ME, that is all I'm saying. Even the doctor in the Seattle area, with whom I had gone so far as to set a date for a hyst, began to backpedal as the date approached. Her initial hearty optimism faded to the point where she would not even speak to me personally anymore - and I had not been harassing her with calls nor anything of the sort. What happened was that I had been communicating my progress w/physical therapy (horrendous - never ever again, it only made me worse, and broke into the bargain!) and meds to her through her nurse-assistant. Based on this input, the assistant said that the doctor wanted me to know I should not expect much relief, at least not for a very long time, and that my recovery was certain to be complicated. When I asked if I could speak to the doctor to clarify this change of prognosis, she just said, "Um, nooooo...." Or course, the dr. was still willing to do the operation! Needless to say, I cancelled and have not looked back.

Another dr., at Johns Hopkins, cited a figure of something like 90% for relief after a hyst. My pain dr. disagreed and said that surgeons often promise this.

So, three years after the pain became constant, I remain totally confused, and reluctant to commit to anything that can't be taken back......but that's just my nature.

Thanks again for all the information!

Unread 01-06-2004, 12:18 PM
Five months post PSN-update

Big (((Hugs))) (((Christy))) ,
I'm sorry to see your list of dx's has grown :-( I do hope with time that the PSN will continue to provide you with more relief! Pls keep us posted on your leg pain....hopefully you will be able to receive some answers as to what is going on there. Have you ever been dx'd with any back conditions? I ask because I have Degenerative Disc disease & it causes me a great deal of pain that often shoots thru my legs, down to my feet. Mine is worse on the left side...maybe suggesting some further testing in that area if they haven't done so or mentioned that as an option?? Just soo all the bases get covered as well...Good Luck

((Hannah)) & ((Sarah)),
I continue to hold onto to knowing I always have the option of the Intrathecal Morphine Pump as well. When I 1st started seeing my Pain Drs., it took a few months to tirate me to a dose of meds that provided relief w/o being overwhelmed by the side-effects. I mentioned my concerns as the mgs grew...was there a ceiling dose? What will I do if I get there? How will I get relief 5-10 yrs from now? I was assured that there is no ceiling dose on Narcotic Pain meds & as my tolerance grew so would the mgs. That most Chronic Pain Patients receiving long-term Narcotic Therapy usually stayed at the same dose for yrs when the adequate one is reached. That should the amount of oral meds increase to an amount that I was ingesting a vast amount of pills we always had the pump to fall back on. It also has no limit on the dose & acts better in providing relief at smaller doses because it goes straight to the spine w/o having to pass thru our system & liver first where many meds lose some of their potency. All that was of a great relief to hear I am fully comfortable with having one implanted should the time come or the need arise for me! Here is some info I have from my own research about it...

Intrathecal Morphine Pump

Lumbar Infusion Morphine Pump Worked!

Morphine Pump

Morphine Pump Can Aid Cancer Patients

Some links on a few other Pain relief options I thot you all might be interested in:
The Use of Electric Impulses to Interrupt Pain Signals:
A Method of Deadening the Nerves That Conduct Pain Signals:
Radiofrequency Lesioning

Diagnostic Injections

These injections did not me with lasting relief, so I looked into more permanent measures. In theory, cutting, burning, or freezing the nerve should produce results similar those produced by the injection of local anesthesia. In reality, this is often not the case. Burning and freezing procedures are done with needles inserted through the skin, with x-ray guidance. X-ray imagery shows the region where the sympathetic nerve trunk should be, but it doesn't show the nerve itself. Therefore it is possible to miss the nerve, or only destroy part of it.

Cutting the nerve is done under open dissection (or laparoscopically); several inches of the nerve trunk are often removed. You'd think this would do the trick, but it often fails too. A problem with all three approaches is that there are discreet peripheral sympathetic nerve fibers paralleling the main trunk. Since the doctor can't get all of these little fibers, the remaining ones often carry enough signal to cause persistent problems.

In late-spring 2001, I had a nerve-freezing treatment of my right sympathetic nerve trunk. It didn't seem to work (the nerve is hard to get). Subsequently, I had my L2 nerve root frozen. L2 carries a lot of the sympathetic fibres from the lower body. This treatment seemed a failure at first, but within a few weeks I started noticing gradual but distinct improvement. The improvement continued to the point that I was up and around for 3 hours per day! Four months after this L2 nerve root freezing, my pain began to worsen. A subsequent freezing the of the L2 nerve root in November 2001 produced good results as well. A repeat freezing in March 2002 had no effect, and I am now looking into morphine pumps and spinal cord stimulation again.
In theory, nerve ablation treatments like this should work immediately. In my case, gradual improvement happened several weeks after the procedure. I don't know why this is the case.

Reflex Sympathetic Dystrophy
Seems to be more options like this appearing leaving us Chronic Pain Patients with even more, improved methods at relieving our pain!!
Hopefully, it will continue to increase....I do some further info on these along with some others, just let me know & I'll be more than happy to share....


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