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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 10-01-2003, 07:45 AM
I haven't been around in a looong time...

My Dear Sister ((((Judy)))),
How I've missed your comforting & supportive posts here on The Road:-( I'm glad you posted...I worry about you my friend
I'm s sorry to hear things have not improved, I do have a lot of faith in accupunture helping, mostly b/c of the relief (((Angie))) received from it...pls keep us posted about your results w/it.

I also have a few actual strictures & some narrowing from Adhesions, in loops of my bowels....the most symptomatic one is down by my vaginal cuff where my bowels are adherred to the cuff itself, looping over & causing me my severe pain w/ BM's as well as digestion in general love the Duragesic patch...I'm glad they put you on it **YEAH** Did you get the covering to help hold it in place? Just being able to keep it stuck to your skin can make a world of difference in the amount of relief it provides. I woukd jump for joy to be able to use it again!!

When is the Sigmoid thing being done? I ask so that I can keep you close to my thots & in my prayers that day...pls know we will be w/ you in spirit holding your hand all the way
Hang in there (((Judy))) sounds like your finally on the right *road* to answers & relief!!
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Unread 10-03-2003, 08:29 AM
I haven't been around in a looong time...

Oh Sisters...What Joy filled me, when I came back and read all of your posts. I don't know 'why' I was absent for so long...But I guess I just got sick of talking about my pain...myself. I do miss all of you, and will try to be around more to lend out a shoulder and lots of ((((Hugs))))

I'm having the sigmoidoscopy done on Tuesday Oct. 7th - where has the summer gone eh?! I really like this GI Doc. She has returned two calls of mine...when I've been concerned about something. I usually can't get office staff to return them...so when I heard her voice I was both stunned and grateful.

I've been having quite a bit of bleeding following my BM'S the past few days. I was quite concerned yesterday with the amount, as well as the cramping...But didn't call because the test it so close.

((((Linda))))Thanks for calming me down little one! I actually did call their office yesterday to confirm the test, and asked if I was to be given anything - and they said YES! Usually they don't....so I was relieved to hear this. I hope you are feeling better dear. When I next see my Endocronologist I will mention Tibolone. To be honest, I have not heard of this (been living in a bubble lately) but I will do some research and inquire about it - Thanks my dear Regarding the fingernail...a friend suggested getting my thyroid checked...And I'm also wondering if it could possibly be eczema under the nail? I can sort of see little bumps underneath -who knows eh? Or it could be a fungal thing as ((((Silverfern)))) mentioned above - thanks for mentiong that dear sister.

((((Kim)))) Are we twins? LOL! I haven't started the Acu yet - trying to juggle a couple of appointments so that I can get in on a day when I already have to see my doc at the hospital. It is hard for me to get downtown on the subway these days so it would be great to try to book 2 appointments in one day! I hope and pray it works for you sweetie. I'm sorry you had to jump down your patch dose...But if you are anywhere near 110 pounds, I think it is wise to keep an eye on that. I started out at 25...then gradually went up to 100. I was dizzy, feeling sick to my stomach a lot, as well as sleeping more then I usually do (which is quite a bit). My dh started noticing these things as well so we are in the process of lowering the dose in an attempt to find the right one for me. Currently, I am wearing a 75 with just a bit of a 25 taped on...so we'll see. I'm not as dizzy...but still pretty lethargic - this could also be due to the FM/GI stuff going on though. Hopefully I'll know more after this next test, and we'll go from there. I am excited about the acupuncture. I tried it many years ago, but with someone (I later found out) who didn't really know her craft. The acupuncture staff at the hospital is very good...so we'll see. I miss you sweetie...& thanks for your words of support.

((((Druid))))) I am so very sad to hear of what you've had to be dealing with. I'm sorry that I wasn't around to give you my support and love my hystertwin. About what you said "my pelvic muscles were tightening and in spasms..." This could very well be part of what's going on. I have described that part of my pelvic pain does feel like the charlie horse spasm we get in our calves at night. I don't get it quite as much as I used too...But I will be sure to check this out. Take care dear friend, and I'll be sure to let you know how this acupuncture works out for me....xoxo

((((SBlumen)))) "...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." My Neurologist has made similar comments to me...and PT is planned I just don't know when. I guess they are taking things one baby step at a time to rule out other things. My doc has showed concern about PT with the Nerve Damage, but perhaps it will be okay? They are pretty sure that my bladder does spasm, and now my bowels. Even though it feels as if I've been at this clinic forever - it has been a year. SARS did slow testing/procedures down for several months...and it appears that things are now back on track. This waiting is so very frustrating, but I know they are doing their best...as I've heard several of them say that they have never seen as case quite like mine lol! I'll be sure to let you know what I find out about the PT etc. Thanks for sharing...and I hope you get some relief sister.

((((gemsab, toolgrl & KAR1)))) Thanks so much for your comforting/supportive words. I appreciate you all being there....I will keep you in my prayers xoxo

((((Anj)))) I've wanted to call/e-mail you, but must admit that I've been living in a bit of a bubble lately. I think you know what I mean...I haven't even been keeping in contact with my family so I guess it's time to 'snap' out of this funk I'm in eh? I didn't know this: "blisters my skin to the point of looking like 3rd degree burns - comes with the endo territory I'm afraid." It's odd because the patches didn't bother my skin for the first month or so...but now the area I put them on are getting highly irritated. I had a sore that was oozing (just above where I put the patch) and sure enough when I took off the patch it was all red, oozing, sore etc. I e-mailed a pic to my nurse down at the clinic. She prescribed a puffer to put on the site. So far, it is helping a little bit...But I can still sense some irritation under it. We'll see...Perhaps the patch isn't for me. I hope and pray that you are doing well sweetlet! I hope to get in touch with you soon....xoxoxo

((((Sheri)))) Thanks so much for your post - dear friend. My GI doc did mention some narrowing, then she threw out these medical explanations at me that made zero sense. I tried to write it down, but had a hard time spelling it lol! Plus I was having a nap when she called so I was in the fog even more so! Luckily Bob will be taking me down to the sigmoid test. It is always good to have an extra set of ears to hear what the dr has to say. I hope and pray it is something that can be easily treated. I know it's all related somehow to the Endo. I never did get the coverings for the patch, as I was able to get my hands on some really good tape. I do appreciate the info you sent me so very much. I did call them but it was a weekend, and made a note to call them again - but then I got the tape. I will save the info though...just in case the tape starts rejecting my body lol!

Sorry this is sooooo long...I hope I didn't leave anyone out here...As all of your posts/words mean so very much to me. I will keep you all in my thoughts and prayers. And please accept my apology for not being around here to offer you all support. I've gone into my shell a bit ...But hope to break free soon. You are all the best 'S

Lots of Love,

Unread 10-03-2003, 08:33 AM
long time for me too

Hi Jude, Sorry to hear things not so well for you. I too haven't been on around for a long time. I am still on that same road also. Take care.
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Unread 10-03-2003, 08:46 AM
I haven't been around in a looong time...

Dear Jude,

Please do keep us posted as best you can... I can understand wanting to take a break too... I am very interested to hear about all the things you find out.

I hope your sigmoid test goes well. I'll be hoping for an update on that after the 7th.

I am going to see a Gyn-Onc at Mayo on Oct 10th. I am not sure what to expect. I keep hoping that all these myofascial problems that are getting worse around my pelvis can be resolved easily... BUT, the last time I had so much trouble with my muscles I had some very painful things going on internally... and it wasn't until I got those "fixed" with surgery that the myofascial problems went away (on their own I might add)... and to think it all started with the endo...

Many good wishes dear Jude, and much strength for your test!!

Unread 10-07-2003, 06:21 AM

Hey jude...

Just meant that "odd reactions" and "irritations" and "allergic reactions" DO come with the endo territory. They've proven that women with endo are far more likely to have other "auto immune" problems of this sort.

I'm sorry you're in pain...

Unread 10-08-2003, 12:46 PM
I haven't been around in a looong time...

((((Anj))))) I feel like an egg-head! Of course I should have known what you meant by that. Yes, I have so many sensitivities these past several years that I never had before.

Good News I had my flexible sigmoidoscopy and everything 'looks great.' I even was talked out of sedation...and besides a little pressure it was no trouble. On the other side though now we're back at square one - or just blaming the Endo for these cramps that I have.

My GI doc gave me a new med to start - I'm going to pick it up later. If I am having bowel spasms then this will help with that.

Thanks for all of your good wishes and support. I love you gals... & S
Unread 10-08-2003, 01:04 PM
I haven't been around in a looong time...

I am so happy ((Jude)) to hear that your test was OK

... but I know that feeling of... OK? Now what!?

Let us know if the meds help. I am very interested as I am searching for answers to my pain too... and am always interested when someone finds something that helps them.

I am going to see a new Gyn-Onc at the Mayo clinic in Scottsdale on Friday. I was referred to him for a consultation on a PSN. I am not sure what he will say....

Please keep us posted on what happens next!!


Unread 10-08-2003, 02:26 PM
I haven't been around in a looong time...

I'm glad the test went okay and everything was negative. I do know how you feel about that though, it's kind of a catch 22. You still don't have any answers.

While I didn't have endo, I have developed alot of sensitivities since the hyst. My GI problems have increased tenfold and have a book of items that I have sensitivities too.

Good luck with the new med my friend. I hope that it helps and gives you some relief.
Unread 10-09-2003, 09:50 AM
I haven't been around in a looong time...

Hey Jude, great to hear from ya sister and even better to know that the test went well.....we've been worried about ya here, everyone has been wondering how you're doing!!

It sure seems that alot of us are having systemic problems, as in, our whole bodies are being effected by something, whether it's another element of the endo or a result of the hyst who can tell, but someone really needs to spend some money on some research for this, there are just too many of us with similiar problems!

Just remember we're here for ya sweetie, I know what you mean about being in so much pain and not wanting to talk about it....been there, still doing it sometimes.....but we are always here to prop you up and give you a and remember you can email anytime I"m always around!!
Unread 10-09-2003, 06:23 PM

I'm glad your test went well. and yes, like Kim said, it is so hard when you don't have answers. When I finally had a good urologist and he actually found at least one important source of my pain, I was at first devasted to learn it was a bladder stone, but then at least glad he FOUND SOMETHING. I do hope you can get some answers soon, and hopefully the new med will help. I can't agree with gidge more, she is so right when saying we all seem to have so many similar symptoms and or systemic problems, and plenty of us have sure battled the endo monster and so much more. I do hope you can find some releif. Youa re always in my prayers.
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