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

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

Just to let anyone who is curious about presacral neurectomy what my experience has been - though I'd imagine that b/c I have endo and adeno both, my road might be slightly different than yours if you are considering this.

The surgery itself was not bad at all - it was done laparoscopically and involved only an overnight stay (in an out-of-town hospital, which was not all that bad - and my dr. is well worth the trip, about 1 hr's flight from here). It's often, he explained, an outpatient surgery, but in my situation he was concerned about pain control. This was probably the only goof; since I did not make sure he consulted with my pain dr. back home beforehand, I actually received LESS pain med post-surgically than I normally took on any given day! I knew better than to make a big fuss of it, though, and look like I was drug-seeking. (I have a whole issue with the stigma of using pain meds, I'm sure a lot of us here become furious about being under-medicated when we are in SO much pain! But I was too exhausted to fight it that night, and just looked forward to being able to take oral meds in the a.m.)

What caused extra discomfort was the cystoscope the dr. performed while I was under - just to check to see if I had bladder endo. (I didn't - nor did I have any active endo elsewhere that he could find, just scar tissue that he biopsied to make sure. I was surprised, as I had had Stage II removed as recently as 2000). THAT caused the most discomfort afterward; It burned, and I felt like I was peeing through broken glass. And since I was on an IV, I had to go very often during the night - each time, a nurse had to accompany me, not just b/c I was attached to the IV pole, but to measure my output. I sang to myself to try to distract myself from the pain down below, and luckily that was OK.

This was on a Friday night, and I had the weekend in a hotel to recover, then we could leave on Monday - if and only if, dr. told us, I had a bowel movement during the weekend. (Sorry to be so graphic.) This, and urinating properly, which I'd already done, were critical b/c the ability to do them assured that there was no major nerve damage done during the PSN. DH promptly went out and bought a giant bottle of prune juice, fed me bran muffins, ordered salads from Room Service...that was kind of funny. Luckily, I was finally able to go, which was a tremendous relief; I thought then, as I still do, that if this surgery didn't help, at least it didn't do me any lasting harm. The doctor's expectation was that we could consider it a good result if the surgery relieved my pain about 50%. As for a hyst, he did not, as of last year, think it was the best option for me, for two reasons; 1) In his experience, constant pelvic pain is not due to adeno; 2) Despite the fact that my natural (non-Pill) periods are very heavy and clotted, I've never been anemic from them, nor have I ever bled uncontrollably. He said this would be the only justification for a hyst - for ME, that is.

So far, it looks like the dr.'s prediction is right on the money. He said it would take about three months to see if the PSN had any effect, and he was right. Pre-op, my pain had been so severe that even a very high dose of meds could not control it. Post-op, however, I stayed on the meds and gradually felt better. In fact, after three months, under my local pain dr.'s guidance, I began to reduce the dosage. I am now down to exactly half the dose of meds I was on pre-op. I've been trying to go lower, but the attempts do trigger bouts of pain, though not as severe as my pre-op pains, which often left me gasping for breath; now, the pain feels like the kind you get when a "bad" period is starting.

In my good moments, I know I'm very lucky that the PSN itself went well, and that it's done exactly what the dr. expected it to and said it would. In my not-so-great, selfish, unrealistic moments, I wish it had been 100% effective. I long to flush all the pain meds and hormones (I take 5mg Norethindrone daily to stop my periods) down the toilet and go back to my formerly active, productive life. But that's just not in the cards for me yet.

Often, I think that I should have a hyst - after all, my uterus IS diseased, as proven by 2 MRIs. Wouldn't it make sense to get rid of it? For now, I'm trusting my current dr.'s opinion, and that of the neurologist who referred me to him; she is the country's top researcher in pelvic pain, both male and female. Her advice to me was to proceed carefully and gather lots of opinions before I take that step. Someday I might, but at age 40, and with a family history of very, very late menopause, I want to put it off as long as I can. How to do this and maintain a good quality of life is still a mystery to me - pain meds may work, and I know that people with numerous conditions take them long-term, but they do sap my already-low energy.

I hope that helps anyone who's on the PSN fence. Please feel free to ask me anything I may have forgotten.

Thanks for reading, and love to all!

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Unread 01-04-2004, 04:38 PM
Five months post PSN-update

Dear Hannah,
THanks so much for the update. It sounds like you are making progress. I am so glad!!!

I can tell you from my personal experience that Adeno can cause constant pain... it did for me and that was also supported by a pain mapping that showed my uterus to be one of my most painful areas.. specifically a large cyanotic area on the front which turned out to be adeno that had grown so it could be seen from the outside of my uterus. I had the pain mapping mid cycle and it was still exquisitely painful... I had the pain mapping done by one of the "big docs" from the International Pelvic Pain Society. So I guess I don't agree that adeno cannot cause constant pain... perhaps it depends on the degree to which you are afflicted (?). It would be interesting to know if there have been studies done to support that Adeno cannot cause continuing pain or if it is like many things involving female reproductive issues based on best guesses that over time become "facts"... like that endo is the "career women's disease", that pelvic congestion is not painful... anyway...

The PSN "should" help with your uterine pain... apparently that is what it is best for. I did have something like an "adenomyectomy" on the worst spots of adeno and it helped my pain level quite a bit (this was after the pain mapping)... perhaps that may be an option for you if you continue to have pain and don't want the hyster... mine was done via laparascopy.

I have my PSN scheduled for Feb 4th at the Mayo in Scottsdale. The doctor there can also do it laparascopically. He will also look for endo (which he and one of his associates still think I have)... The doctor is not completely convinced it will help (the PSN) but since I had such good relief from a temporary nerve block (about 2 hours) there is a possibility the PSN will help. The Mayo doctor told me it would be months before I would know if the surgery helped and it may take years for things to gradually settle down since I have had pain for so many years (13+). My local Gyn told me there were only two doctors in the US who can do the PSN via laparascopy.

ANyway, I have been having much more pain lately... I guess that is good since I am a little anxious about the PSN so this will make be "ready" for another round of surgery.

Best wishes for your continuing recovery.

Unread 01-04-2004, 05:12 PM
Hi again and thanks for your reply!

Hi Sarah: I had you in mind especially when I wrote the update....I am so sorry I didn't contact you sooner. The only positive is that, at five months out, I felt I could give a more accurate picture of the situation.

I didn't mean to sound as though I buy 100% into my current dr.'s opinion that adeno can't cause constant pain. You're living proof that it can, of course. And to begin with, a couple of years ago, my internist told me she was sure I had it (despite having been told it was impossible by my first 2 surgeons, who cited my relatively young age then, and never having been pregnant nor given birth, as is still the case). She's the one who sent me for the definitive MRI that proved I have it. I'm guessing that another reason my surgeon is reluctant to do it is the endo-adeno combination - I could have the hyst and still very well have pain from the scar tissue/nerve damage he suspects the endo caused.

I would certainly consider a conscious pain-mapping....if you wouldn't mind emailing me with your dr.'s names, I would greatly appreciate it. My most recent surgeon has done it but for some reason didn't recommend it to me (maybe he was waiting to see the longer-term result of the PSN). He, as well as the pain dr. I see locally are IPPS members, too. I am never averse to obtaining second, third, fourth opinions and so on; DH and I have criss-crossed the country to see doctors and would do so again. I would do anything and go anywhere for the chance never to have this awful sensation again! I'm sure we all feel the same.

I'm so sorry to hear you've been feeling worse lately, poor thing! All I can say is, just hang in there until the PSN...and once you've had it, try to be patient. Easier said than done - I'm the world's most impatient patient, my DH says! Please keep us posted on your progress...

Sending you hugs and painfree wishes...

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Unread 01-04-2004, 05:34 PM
Five months post PSN-update

I was so glad to see your post. I had been wondering how you were doing and was hoping that no news meant good news.

I will PM you with the information on the doctor I saw who did the pain mapping.... maybe they just need to wait a few more months to know what the PSN will take care of...

I will tell you that the Mayo doctors I saw (incl the one doing the PSN in Feb) don't buy into the pain mapping"stuff".... but when I explained all the details of the pain mapping and then how much that particular surgery ended up helping the Mayo doctor said "well, I guess it can be helpful for some people.".... but I had to wonder how much is just a turf issue etc... since the Mayo doctors I saw don't do pain mappings...

I had to "smile" about the "being to young, not kids, etc." for adeno.... that is another area where I think anecdotes became fact for Gyn. I was told that Adeno is only found in women in their 40s+ who have had kids... well I guess that would make sense up until recently since most women don't want to have a hyst until they are in their 40s and have hopefully had kids... and the only way it could be diagnosed for sure until very recently was a hyst.

I also had an MRI showing the possibility of Adeno when I was in my early 30s. I had already had one baby though. Of course, none of the doctors would take the radiologist up on the suggestion that it was there... until after the pain mapping....

Sorry to go on so....


PS. If you want to send me an email or PM me I can give you the doctor information... you don't have your PM turned on.
Unread 01-04-2004, 06:03 PM
Oops, sorry! I will see to that right now. Thanks so much!

I'm not very Board-savvy so I didn't purposely turn anything off - just ignorance about how to use the options. I'll figure it out asap....look forward to hearing from you!

Unread 01-04-2004, 07:50 PM
Five months post PSN-update

I'm soo very happy to hear from you I've thot of you often & was hoping that no news meant that things had greatly improved for you! I'm relieved that you did receive
some relief from the procedure Half the dose of meds is pretty awesome, IMO!! I know you wish you no longer had to take any, gosh how I wish the same :-(
As you know, I feel very much the same as you & understand 1st hand the stigma attached to their use long-term.
Have any of your Drs ever suggested the option of having the Adeno treated by one of the newer procedures? I'm not very knowledgeable about it, so I'm not aware of the invasivness or risks it may carry if they are low, do you think that this could be a possibility for you to undergo? Exp if it isnt that invasive, it could carry a chance at relief should the Adeno be causing some of your pain? It too is newer & not widely used so it could be like your recent surgery in finding a Dr to perform it?? Just a thot

Good Luck ((Hannah))...I will continue to pray that time will bring you some further relief to the pain!!
May you one day soon experience life at an improved quality...

Unread 01-05-2004, 10:04 AM
Hi Sheri! Thanks so much for your note.....

Embarrassingly, I opened an e-mail account that I neglected literally for months, to find notes with your (as usual) wonderfully helpful info and links there! Please know that your efforts do not go unappreciated - nor unused. I have greatly benefited from your research and I'm sure many other Sisters have as well.

As for alternative must have ESP! As soon as the familiar twinges, then outright doubling over, resurfaced, I began to surf for other possibilities. I know that some radiologists are trying Uterine Artery Embolization for adeno, while others say they won't perform it (for the usual use, fibroids) if a woman has adeno in addition to fibroids. And some women, such as Sarah, have had removal of focal areas of adeno. Unfortunately, though the report from the dx-ing radiologist (the first one saw the same signs and misinterpreted it as "hemorrhage," saying I must've been having my period that day when I insisted I wasn't - wouldn't I be the one to know lol??) is not as specific as I'd like it to have been, both images show that adeno affects the lower half of my uterus. Of course I'm not a dr., but without even asking, I'd venture to guess that even a partial hyst (leaving the cervix, maybe) would not be an option, since the wrong half is where the problem is located.

I was supposed to have my post-PSN follow-up last month, not in person since he's so far away, but via a phone call; however, the dr. has been so busy, the office hasn't slotted me in yet (despite my telling them that I fully expect the call to be billed like a regular in-person consult). It's almost a good thing, though, b/c I wouldn't have gone as far in my medication-reduction efforts and seen their result yet. He had said that it might be necessary to increase my Norethindrone dose; just 5 mg has been enough to stop my cycles completely, no spotting - but for pain control, he has said, we could go as high as 60 mg. I'm not a huge fan of progestin-only treatment - it has some nasty side effects - but as long as it's not Synarel (I never wanted Lupron, though I often think I should have gone for it), I won't complain.

I'm sure that you (and anyone reading this) often check the NIH website, Entrez-PubMed, for article abstracts. When I read some there the other day, I found a Chinese study comparing PSN with LUNA. The researchers evaluated patients after 12 months; this gave me a bit more hope that I could possibly improve further over a longer timeframe. Btw, they found superior pain relief from the PSN procedure.

So basically I'm in a holding pattern....not the most comfy position for a control freak like me! I always want to know what's going to happen and loathe waiting. But as my DH is constantly reminding me, I have to take this thing one day at a time. I guess it's a lesson we've all had to learn - though you're lucky if you start out calm and patient!

Thanks so much and take care!

Unread 01-05-2004, 10:42 AM
Five months post PSN-update

Embarrassingly, I opened an e-mail account that I neglected literally for months, to find notes with your (as usual) wonderfully helpful info and links there! Please know that your efforts do not go unappreciated - nor unused. I have greatly benefited from your research and I'm sure many other Sisters have as well.
No problem (((Hannah))) I'm just glad that you have found some relief, I was praying this was the reason for not hearing from you!

Another member here, Loretta, also had some focal points of Adeno removed along with some other procedures done. She posts here on The Road sometimes but more so on Aching Hearts. Maybe you could swap/compare notes with her as well on some of the things she has performed in search of relief

I love PubMed! I stop by there several times a week to read the latest research & studies.
I'm not sure if I've ever shared this w/you but my 15 y/o DD sufferers from Endo as well I've been around the block w/her in search of treatment options. Not as big a choice due to the fact of her being so young, I will not allow her to even begin to follow my footsteps when research has come so far.
The ERC recently joined forces with Vanderbilt Medical Center here in Nashville. They are conducting research & will soon be starting Clinical trials. I hope to have her participate in some!!

How exciting to hear about that study & that relief can be achieved that far you more hope beyond that 6 month range, huh?!?
I'd love to hear periodical updates on how your doing as would others I'm sure. So if you get a chance, pls stop by & keep us posted....
Much love & prayers to you ((((Hannah))))
Unread 01-05-2004, 11:13 AM
Five months post PSN-update

Dear Sheri and Hannah,

During the process of trying to get the insurance coverage for my PSN I had to appeal and the doctor who reviewed the appeal included the results of 3 studies done on PSN with endo removal vs. endo removal alone. In all cases the women who received the PSN with the endo surgery obtained the best long term results... the biggest study (however only 150 women as I recall) showed 80% still had significant pain reduction at 12 months versus only 40%-50% with only endo removal. The side affects noted were the constipation 15-30% depending on the study and urinary frequency 8-12% depending on the study. Maybe I can scan in the pages from the letter...

The other big comment about the PSN is it worked best on midline pain in all studies... that is why they are not sure how it will work on me since I have more lateral pain remaining... but since the nerve block helped the lateral pain the Mayo doctor definately thought it was worth doing.

The Mayo doctor did tell me it would be many months to years to know how well the PSN surgery helped.

As far as the Adenomyosis goes.... The MRI I had done showed diffuse adeno (ie. all over)... but I had two areas where it was much worse... one area was low/front (4x5cm) and the other was back/left and smaller. Those areas also showed up on the MRI but the radiologist did not know how to interpret them... so it wasn't until later that we figured out that was what was seen in the MRI. Since I was not ready for hyst (still hoping for another baby), my doctor removed the outside layers of the uterus where the bad areas were... it had become dark blue when the pain mapping was done and then was white 6 weeks later (meaning the tissue had died I guess?) when I had the surgery. This helped quite a bit with the pain relief in addition to having my right ovary removed. So it wasn't a complete adenomyectomy since the doctor did not go completely through and cut out sections of the uterus. As far as the embolization option... I asked the pelvic pain specialist about that and he told me my adeno was far to widespread for it to work... I have not read anything about using embolization for adeno since then... just for fibroids.

The risk I encountered with pregnancy and adeno was placenta abruptions... I had two and both times the placenta was attached over the worst areas of adeno. The last one I felt so thankful that both me and the baby survived so I knew I couldn't risk it again... that helped with the decision to do the hyst too.

I must tell you that my decision to have the hyst came from knowing (from the pain mapping) that my uterus was a big component of my pain problem. Since the adeno pain was returning (as well as other things) and I had already tried conservative measures I did not want my DH and family to continue to have to put up with my pain issues... I was also 40 and thought it was time to try something more radical. I thought also that even if it just reduced my pain it was worth it rather than continuing to do "little things" unsuccessfully to find relief... I had uterus and cervix removed and I cannot tell a difference so far. So that was my thought process... I waited a long time to finally get around to doing it.

The progesterone only therapy (at high dose) was suggested to me and my doctor by the pelvic pain specialist I saw. My doctor would not suggest it for me because he was so concerned about the side affects... he said it would make me crazy. I have read it can be pretty tough on your emotions.... and fortunately for me the surgery helped aat that time so I never had to decide about it in the end.

Of course, I am still having pain but it seems to be the endo (or so the docs think)... time will tell. Maybe if I had had the left ovary out as well I would not be... who knows.

Many hugs to both of you... and to your daughter ((((Sheri))). (There is a member who had a PSN for endo when she was 19 or 20 and ended up having 3 kids before a hyst at 28... she had great relief with the PSN! I know others have not had quite as good a result though... perhaps it is dependent on the skill of the surgeon).

Unread 01-05-2004, 11:46 AM
Hi again, Sheri and Susan..

First of all, Sheri, I'm so sorry your DD is going through this. Since I don't have children, I can't imagine how it must feel to see your "baby" (even as an aunt of teens and pre-teens, I still think of them as such) suffer. I can't imagine that this opinion has missed your impeccable research, but just in case.......based on the theory that cramps can cause endo or worsen it (b/c the strong contractions of the uterus lead to increased "backflow" of menstrual fluid into the pelvic cavity, thus upping the odds that some of it will take root, scar and bleed - in other words, become endo), some researchers are saying to put teen girls with "killer cramps" on the Pill. My niece is only 11, but in our family, menarche can be as young as 9, so I've already discussed this with my sister. I know this is a controversial approach for many reasons, moral and sexual in addition to healthwise, so it merits lots more research and thought. I hope and pray right along with you that the researchers can come up with something better and more definitive - how about a CURE? - but until then, this could be a stopgap measure.

On the flip side of the idea that Pill-taking encourages sexuality, I've read just the opposite as it concerns "healthy" teens going on the Pill; since, as many of us have likely experienced, the Pill wreaks havoc on libido, many sex experts lament the fact that teen girls who continue on the Pill into womanhood and hopefully an eventual marriage (if they're heterosexual - no offense to lesbian women whose health issues are equally important and often horribly neglected), often do so without realizing their full sexual potential. Like everything else in life, it's a tradeoff - but it could well be one that they're not even aware they're making, as older women who began their sexual lives Pill-free are more likely to recognize.

And Susan - I forgot to mention that I had the PSN for the same reason that you've decided to - two nerve blocks that gave me "evidence" that the superior hypogastric nerve was a source of my pain. The first injection gave me complete relief for half an hour; the second, using a different anesthetic, worked for a blissful 12 hours. My pain is just about 100% "midline:" my best description of it is that it feels like my uterus (due to the location) is being continuously squeezed by a metal fist. But due to the nerve damage my surgeon suspects, after seeing the scar tissue I had, he cautions that this can be deceptive; here's where the "pain gate" theory we've all been lectured ad nauseum about comes in....too much pain for too long, and the signal becomes permanently stored in the spinal cord. When this happens, you can remove everything you've got and still feel the same sensations. I often think of this while I wait for my pain dr. in the exam room and stare at the cross-section of the female pelvic nerves that hangs on the wall; this part of our bodies is so richly innervated that it seems impossible that most of us walk around without pain!

One thing, Susan, that I did not understand in your last post. When you say that, after the removal of your uterus and cervix, you can't tell the difference so far, what do you mean? Sorry to press you so hard on this point....since we've had such similar pain patterns, your experience is worth 50 surgeon's opinions to me!

Thanks again to both of you for sharing your experiences and wisdom!


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