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I haven't been around in a looong time... I haven't been around in a looong time...

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Unread 09-30-2003, 12:19 PM
I haven't been around in a looong time...

S for all of my sisters struggling on the road. I thought I'd pop in to let you all know what's been going on with me.

It appears that I may have some narrowing (at some point - still unclear) in a section(s) of bowel, or perhaps they are in spasms. So to rule a few things out my doc is running a flexible stigmoidoscopy - which for some reason makes me terrified. I lost my pride a long time ago when it came to so many dr's giving me internal exams -sometimes several on the same day...But this GI stuff kind of freaks me out I'm sure the test will come back fine...

The docs have still not ruled out doing another lap, but want to wait until absolutely every test has been done. I've had so many already, so I'm guessing that after the GI stuff we'll be discussing surgery. This does worry me because of the nerve damage, but I'm sure that eventually I will have the right group of docs in the operating room with me.

I tried taking HRT again (patch with progesterone) but I could not get it to stick, and I also noticed an increase in the Endo pain - so off it came.

I am now on the Duragesic Patch for pain. It has helped the ab pain quite a bit, but it has made my other ailments worse - FMS/CFS. Kind of like a trade off I guess. I have been on the patch since late July...and they are monitoring me very closely as I am having some side effects. The most uncomfortable one being the red sores I find when it's time to change my patch.

The FMS symptoms are at an all time high. My right leg is so very sore/painful that I can barely move it these days (past several weeks) and my right foot is killing me. I did injure that foot about 10 years ago, so perhaps that is worth looking into.

I will also start Acupuncture in the next few weeks. Our goal is to lessen my pain as well as increase my energy level. I hope we can afford this as it could take a while. Does anybody know how long these treatments are effective for?

I guess that lately I feel that I have been going backwards instead of forwards, baby steps sometimes in the right direction - then a leap in reverse for some reason. The ab pain has improved by about 30% - so for that I am extremely gratful. It's just all of the other junk that is bringing me down.

For some reason I am loosing my pinky fingernail. I didn't injure it, in any way...It is slowly disappearing! Any ideas?

I have missed you all very much. Sometimes I lurk on this board...Even though I haven't been posting, I have been praying...Please know that all of the sisters on the road are in my

Thanks for reading this...Any thoughts on the above questions would be greatly appreciated!
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Unread 09-30-2003, 12:47 PM
I haven't been around in a looong time...

Hi (((((Jude))))) I've been wondering how you've been doing lately! It's good to hear from you again.

Please, please don't worry a whit about the sigmoidoscopy, it's a piece of cake. Well, maybe we don't want to use food imagery here but really, it's easy. Just ask for some of that lovely Versed and smile gracefully, and it'll be over before you even knew it started. I hope the DR gets the info you need from that so you don't need the lap. I'm leery of any additional surgeries now, too.

Being up in Canada... has your DR mentioned the possibility of using Tibolone instead of HRT? It can help with preserving bone mass, plus deal with menopausal symptoms, and it doesn't aggravate endo. They've been using it in Europe and Australia for years now, and it's available in Canda and Mexico... only the US seems to be lagging behind, and it should be here soon too. There are plenty of posts in the Oasis and Jungle about it, plus some good links in the Jungle Resources forum. It's definitely worth considering for anyone who's had endo.

I'm not sure what to say about the fingernail, except are you taking all your supplements? Sounds like maybe something lacking in the biotin/folic acid type family? That's purely speculation though. But do make sure you're getting everything you need, sometimes deficiencies can cause really wacky symptoms.

Sorry to hear that the pain is still with you, I wish I could give you some big sister s in person!

Unread 09-30-2003, 02:01 PM
I haven't been around in a looong time...

It is sooo good to hear from you my friend. I am sorry that it is not with better news. It does seem that we travel the same paths sometimes. As you know I've been using the duragesic for some months now, after doing all the GI stuff, and am now trying acunpuncture. Are you sure we're not twins?

I haven't looked into the long term possibilities on the acupuncture. I guess I just don't care about that, I just want some relief NOW and will deal with the other later.

The jury is still out on whether the acu is helping. I am still quite early into it. I do think I am getting a little help, and seem to be feeling a little better. I do still have pain, but I am trying to remember that it does take time. Afterall we didn't get to this place overnight, so relief probably will not come overnight either. My acu doc seems to be able to tell me where it hurts even before she touches me. She said that I am a mess (like I didn't know that LOL) It's really quite amazing stuff and I am trying to be hopeful that this gal knows her stuff and hopefully in the end some good will come from the treatments.

What doseage are you using for the duragesic? I recently had to jump down to the 25mg as I felt that due to my weight some of my symptoms may have been due to the higher doseage. That did help some, but than the pain got worse. Like you said, it's a tradeoff.

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Unread 09-30-2003, 05:50 PM

Hi Judester,
I was happy to see you posted, but as Kim said, not happy to hear of your struggles. I have been considering acupuncture myself. I just went through some really bad bladder stuff, ended up having a bladder stone removed after almost 2 months of major pain and no one knowing what was going on. It figures huh? I don't know what to say about the hormones, but I do know the GI stuff isn't all that horrible, the sigmoidoscopy is not as rough as the colonoscopy. I was told by a pelvic floor specialist, when I was trying to unravel my awful bladder troubles, that all of my pelvic muscles were tightening and in spasms, and maybe that is what is happening to you as well? I personally think our muscles can spasm because of pain, not necessarily that the spasm itself is the cause of pain. But I suppose it just depends. Not sure about the fingernail, but supplements may need a check perhaps? I don't know much about the pain patch, but I do know that I was on a lot of pain meds over these past two months, to the point of being really loopy and I hope this patch works better for you than all the pain meds I was taking. Anyway, it is very good to hear from you and please know you are in my thoughts and prayers. We are getting close to our three year hyst anniversary aren't we? Party time huh? Much love to you as always. Post to me anytime please.
Love, Light, Blessings
Unread 09-30-2003, 07:10 PM
I haven't been around in a looong time...

Hi Judy,
I had been wondering where you were.... I am sorry to hear that your absence was due to more troubles and not because you found your exit off "the road".

Do think about checking into possible pelvic muscle problems as a result of the chronic pain, as Druid mentioned. I have terrible myofascial problems all around my pelvis and pelvic floor as a result of long term internal pelvic pain. I actually was examined by a Neurologist from Johns Hopkins who told me he had been studying the effects on the muscles of long term pain from endometriosis... there is some neurological process that causes the internal pain to refer out into the muscles... which then causes them to spasm and get tight little knots in them... these then cause their own pain. Anyway, it is something to think about. I am sure you are very familiar with muscle problems due to the FMS...

I am trying PT on my pelvis/muscles/pelvic floor to see if I can get some relief. I have tried Acu in the past and was not able to notice any difference from it.... but maybe I just didn't give it enough time. I am going to give the PT a couple months before I assume it will not help.

Please keep us posted. I do hope your leg gets better. It is good to hear your pelvic pain is somewhat relieved.

Unread 09-30-2003, 08:49 PM
I haven't been around in a looong time...

Hi Jude

Your disappearing pinky fingernail could be a fungal problem. Just a thought.

Hope things improve for you soon.

Unread 10-01-2003, 05:30 AM
I haven't been around in a looong time...

hi Jude

It is good to hear from you be it though you are still struggling with all the pain...I hope the GI stuff isn't to bad and you can get some answers...sorry the HRT is still a problem as it seems to be for alot of us...wish I could wave a wand and make us all better, but I am happy you are at least a little better...sorry for the fingernail issue, but do check into the fungus thing- maybe some topical med can help...

Hope you are better soon and it has been so long since we all began...keep in touch Dear Sister and I am praying right with you!!! s from me to you!!!!
Unread 10-01-2003, 06:29 AM
Hey Jude...

I wondered about ya. Give me a call if you want the "scoop". You might try ESCLIM patches if you can get them and oral progesterone (bio identical) called prometrium. I'm dreadfully allergic to adhesives (blisters my skin to the point of looking like 3rd degree burns - comes with the endo territory I'm afraid) but the esclim patches are older and use an older adhesive that sticks but doesn't burn me. I CANNOT use them without the prometrium else the endo is EXTREMELY painful. However, if I don't use anything I get bowel, bladder, and other irritations that become worse - including the FMS/CFS problems.

Again, everyone is different and it's taken alot of writing things down and working with a doc on this thing, but that works better for me than anything else. Also, I started something called Zelnorm that helps IBS type pain/flare ups.

There's LOTS more to tell here - and fyi I've had the sigmoidoscopy four times. It's no big deal if you have a good doctor who's not afraid of pain patients and will adequately medicate you. Make sure you discuss this with them BEFORE you get into the "exam room". And it should be no problem.

For me, accupuncture was a godsend. However, the relief time will greatly vary in the beginning as the accupunturist "learns your body". It also depends on their skill. I was lucky in that my accupunturist had trained in China for over 20 years and was a head staffer at the Shanghai hospital in China for many of those years. She's spoken, trained, and written on the subject and is frankly...amazing.

In the US an accupunturist can get a license in some states in less than 18 months. In china you must train with a "master of accupunture" for no less than seven years and practice when them for a number of years after that. This accupunturist was like a gift from God...she has both a western medicine degree and is a master of accupunture. I had wonderful restults with her...and still do.

If you want, call anytime - or email me.

Luv ya,
Unread 10-01-2003, 06:52 AM
I haven't been around in a looong time...

Awwww ((((((((Jude))))))))

I to haven't seen you around and had been wondering where you have been...I'm sorry that your dealing with so much sweetie.

I'm sure not one to offer suggestions for you....Your much more educated than me in this area and in fact I'll be watching your post with great interest.

I think the advice given here from our sisters has been wonderful. From what I understand the sigmoidoscopy should be okay for you and Adrites advice on talking to your doc before hand about pain meds is right on the money!!!

Your in my thoughts and prayers (((((jude))))) please keep us posted on how things go...

tons of 's

Unread 10-01-2003, 07:38 AM
I haven't been around in a looong time...

{{{{{{{{{{Jude}}}}}} I was just thinking about you the other day and was gonna email Kim and ask if she has heard from you lately. I am so sorry you are in so much pain! I cannot help you out any more than what the others have already suggested. I just had to send some comforting s and let you know you are not far from my thoughts and prayers. Please keep us up to date when you can. Hang in there, my friend!


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