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all new this the way it's gonna be? all new this the way it's gonna be?

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Unread 04-15-2003, 04:20 AM
all new this the way it's gonna be?

Wow, I'm a walking pharmacy now!!!

I went to see the doc again yesterday. We discussed my tests in more detail and she told me what she thinks.

I have 15% percent bone loss...she said as I age it will get worse ( I kinda figured THAT one!) She also said she thought it would be a good idea to check this once a year and keep on top of it if at all possible.

We discussed the blood work she did...She said she tested for things she didn't tell me before hand as she didn't want me to worry over tests that would prob come out neg. I don't have lupus...I don't have any probs with my thyroid...count's are good, but RA shows up enough to let her know that this is some of my problem. We discussed CFS but she was pretty sure this wasn't my problem. We discussed the fibro...and she handed me this huge packet with a lot of info and said I'm pretty sure this is where you are. "I've checked for other things, and ruled them out. I can only give this DX by the process of elimination (sp) and you don't have anything that we tested for"

I also was handed a paper test for depression....I blew it off the charts. She said 10 more points and she would have thought about putting me in the hospital for it. I guess it sure explains my severe lack of motivation lately eh? Actually it explains a lot of what's been wrong with my thinking lately. I sit here and I shake my head and think geeeeeez what else?

I have to go and see her monthly for awhile to make sure the meds are working and doing what there supposed to...She gave me Paxil 25 mg for the depression. She gave me Ultram and Torodal for the pain of the fibro. A three months supply!!!!! Said we'll keep checking to make sure they are helping the pain and getting me thru the day. We have to watch the Toradol as she said it will in the long run eat my stomache away. Your only supposed to have 5 days of this stuff after IV threapy because of what it can do to your stomache. Oh joy!!! another DX of an ulcer or something down the road I'm sure. Part of me wonders if she's saying fibro cause it's easier to DX that than find out what else could be going on?

I'm rather numb right now...I keep thinking ...this is it? This is gonna be my life? a life on pain pills? I know many of you here are dealing with fibro. How did you deal with the inital shock of knowing this was gonna be your life? Did you have the feeling that the hyst had totally ruined your life? I feel so angry right I should have been told this could happen. I've read the links and the info that (((((sheri)))) has given, and I wonder how so many of you deal with this knowledge and the fact that your quaility of life is no longer what is was before the hyst. I wonder how you get the strength to move on and keep going. I'm sure the depression is not helping me with my thinking...I feel like I"m just going crazy anymore. I won't tell my DD what's going on...she askes and I say I'm still just healing don't worry. She's more attuned to me than S/O....He glanced briefly at the info that the doc gave me and made a smart alec comment of " Gee maybe that's what I have?!? I wake up feeling tired to". Not the support I was looking for dear!!!....

Right now...I feel so very lost.

Gosh maybe I should have posted somewhere else??????

thanks for listening...

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Unread 04-15-2003, 06:06 AM
all new this the way it's gonna be?

Hugs Dawn....
I know how you feel about the meds, I feel like someone's grandmother when I get all my refills!
I don't know about fibro, but need to bring up the RA possibility to my GP, she's mentioned "arthritic symptoms" in the past.
My hands, hips and occasionally knees feel about 40 years older than the rest of me LOL.

I'm also taking an anti-depressant, and am thankful for that--couldn't imagine the mess I would be without it.

Keep an eye on your stomach with that toradol, you don't need to add stomach problems to everything else.

Very often I get bogged down with the thought that this is the rest of my life, but I try VERY HARD to push those thoughts away, and try to concentrate on something else, something small that I can still accomplish, even if it's just a load of laundry or cleaning the kitchen AGAIN LOL.

My DH is over the whole thing--he's tried to be patient, but I can feel a difference. Now another worry--how long can HE put up with the new me?

Remember, there are a lot of us walking this road with you, and sometimes, it just takes a post or a reply to help put that foot in front of the other to keep on....

Always here, even if I'm quiet...
Unread 04-15-2003, 06:12 AM
all new this the way it's gonna be?

Hi Dawn

I'm so sorry to hear you're so bummed! Your post reminded me of what it was like for me when I was first diagnosed with CFS and FM - so many years ago that they didn't have a name. It is a shock and of course you're going to have a myriad of feelings. I remember being relieved that there was a recognition of my condition and overwhelmed at the thought of what was to come.

The chance of developing FM as a result of surgery is so slim and so unpredictable that I'm not sure it warrants a warning ahead of time. I hope you don't feel that your doctor was holding something back. This isn't really a side effect of surgery as much as it is your own body reacting to the stress.

First of all, let me tell you that life is not static. You don't stay feeling the same all the time. You might have a remission, but for sure things will at least fluctuate. For me, there was a long period in the beginning that was difficult and took some time getting my head around. Working into acceptance was hard because at first it felt like that would mean I was giving up. On the contrary, for me it meant I could get on with my life. But this is something that is a process that will take time - maybe not as long for you as for me!!

There were a variety of things that helped me get my life 'normalized.' I can talk about those sometime, but you will find your own ways. It's important to be honest with your family but I understand the feeling of wanting to hold it in at first. You need to understand what this means to you first. There is no treatment that works for everyone and no way to predict how things will go for you. For the most part, people tend to improve over time. Partly it's a real improvement and partly it's an adaptation, I believe.

I never stop hoping I'll get better but for the most part I have adjusted to how I am, fluctuations and all. I have never had a remission and I've never found anything that touches the pain. I can drop into feeling sorry for myself but for the most part I don't.

I know your sprit is strong and that you'll pursue whatever you need to pursue (that's wearing) and eventually things will settle into whatever they settle into and you will develop a whole pile of coping strategies. Hey, I'm here you on!!

I know how difficult this is.

Now I have to drag myself out of bed and pack so I can get away for a few days. By the time I take my pharmacy, special food, etc., it seems it's not worth it to go!! But hopefully the hot tub awaits me!!

Keep talking, keep taking care of yourself, and things will get much more tolerable, if not downright OK.
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Unread 04-15-2003, 08:01 AM
all new this the way it's gonna be?

{{{{{{{{Dawn}}}}}}} my just breaks for you. Life is so unfair at times. I wish I had words of wisdom to share. Your doctor sounds very nice and concerned about your over all well being and that is great. We are here to support you and help get you through the rough times. I am so sorry............ s

Emily :cry:
Unread 04-15-2003, 08:34 AM
all new this the way it's gonna be?

's dawn,
i know this is such a hard time for you and you'll need several days for all of this to sink in and process---give yourself some time and don't beat yourself up. i can't address the physical problems but i can address the depression. please know with your dr's help and work on your part that it can get better, you will not be living the life that you're feeling now forever. i went through a horrible depression a little over 10 yrs ago...i saw a shrink for meds and a counselor for guidence and then made several major changes in my life. it was a tough process but well worth it. i now live a depression free life and, for me, life is very good. if you find the depression med is not working (after about a month) be sure to let your dr know. there are several others to try. after "knowing" you here for quite a while, i have complete faith that you will get through are one tough lady and i just know you will feel better soon. hang in there hon and know that your sisters are pulling for you. 's again. love, cynthia
Unread 04-15-2003, 08:44 AM
I don't have any advice

but I wanted to give ya a few
Unread 04-15-2003, 11:13 AM
all new this the way it's gonna be?

Oh, Dawn,
I'm so sorry you are in such pain -- physical and emotional. I too have an arthritic condition, not brought on by my surgery, though, and it really gets me down sometimes; ok alot lately. I had what is believed to be rheumatic fever twice in the last 5 years, and have severe joint pain, as well as other symptoms.

I think that for me it is best not to try to look at the whole of my life from this moment when I am in such pain -- that pretty much never works out to be a happy thought; though next time you are feeling good, and there will be a time, even if pain meds are involved, try to look forward and grace yourself with that future, as the memory of that will keep you going for awhile. But usually I go best only day by day.

I too take chronic pain meds, including Ultram (on days when I am feeling less pain, if you can believe that), but have on and off been to a place where it is easier to live with the pain and not be on the drugs, through relaxation and prayer, massage, hot baths, diet changes, etc. I look forward to being in a place emotionally where I can do that again, but it just may not be for now. And that is OK. I have a friend who also has chronic pain and she expresses thanks that God made people who were able to invent adequate pain relievers! Having been in a place where no possible oral medication seems to take away my pain, I am also thankful for these.

Please let yourself find maybe a pain management doc or consultation. I am also taking a pool therapy class -- there are many who suffer RA and FMS who do this. And a class would be great 'cause you would have some support around you, which is one of the most important things when you are suffering so (sort of like the wonderful sisters here!).

Please take care,
With love,
Unread 04-15-2003, 11:14 AM
You aren't alone!

(((Dawn))) I understand how you are feeling! I was actually diagnosed with MPS/FMS shortly before my hyst. When they found the ovarian mass, I thought that just maybe the dx was a mistake and the hyst would solve a lot of my problems. No such luck! In fact, the surgery seem to put me into a "flare" that is just now (6 mos. post op) easing.

I know it's difficult sweetie! But, as Joselle said, every day isn't bad and you WILL learn what helps and aggravates your symptoms. Some days I wake up feeling almost normal and others like I've been hit by a truck. I am slowly learning what makes me feel bad and trying to adjust my lifestyle to avoid those things as best I can.

I feel like a little old lady too with all the meds I take, but if they make the quality of my life even a tad bit better, so be it! I take bp meds in the a.m. and p.m., Elavil @ bedtime, Effexor XR @ bedtime (only every other night now - because of cost I'm trying to get off it), bc pill at lunch, and have Ultram and Soma for breakthrough pain (which I usually end up taking at least once a day). Right now, I'm trying to get my weight down too so, I'm taking Fastin in the morning and of course, a vitamin at dinner. UGH! For me, the Elavil has been a big help, I didn't realize just how much until I ran out and missed taking it Sunday night for the first time in 8 mos.....what a miserable day I had yesterday! And the Ultram and Soma work about 90% of the time for breakthrough pain. I hope you have good results with the Paxil and Ultram!

Adequate sleep is something that is a MUST!!! Also, LISTEN TO YOUR BODY and when it needs a break....give it one. I'm sure the other fibro sisters will agree with me on that. And remember, you are not alone in this!!

E-mail or pm me anytime you want to talk. Gentle s to you!
Unread 04-15-2003, 01:05 PM
I understand!

I too understand! I feel like an old lady as well. I will be 41 on
Sunday and probably take as much meds as my grandmother
once did. I might be exaggerating, but I feel like it. I have pcos
so I have to take things for that. I have the estrogen pellets,
progesterone cream, I take metformin and aldactone (pcos probs)
allergies, so I take zyrtec and flonase. I take trazadone and
ambien for sleep, metrogel for rosacea, small doze of keflex for
acne, naproxen sodium, vitamins, msm-glucosamine, did i leave
out anything? How do the doctors make a diagnosis of cfs or fibro? I've had problems since my hyst but doctors dont know
what it is. I have lower back and knee pain and general
achiness. Since I am an overweight person everything gets
blamed on that. If i stubb my toe its because i'm obese...
Thanks for listening, sharon (oh yea, i forgot lexapro for
depression since my surgery)
Unread 04-15-2003, 01:58 PM
all new this the way it's gonna be?

(((((Dawn))))) that's it, I'm jumping on a Jet Plane and heading back to Florida to give you another

(((((Sweetie))))) I'm so sorry you're dealing with all of this.... sometimes I wonder what's with us, Road Dwellers, that we attract all these conditions

((((Sweetie))))) I know the feeling of: This is my life, very well... just because I've been there, not too long ago. The realization that you're going to be on pain pills for the rest of your life, along with the notion of what the pills themselves are causing is mind-blowing, isn't it?

One thing I've learned, though, is that, with time, you get used to it, just like you get used to just about anything in life This is espeically true if the pills succeed at managing your pain: I know that Celebrex is being quite effective at managing my pain, and it makes my life a whole lot easier.

Regarding the Fibro dx, I think that you are lucky that your doctor is willing to consider it: too many doctors are reluctant to give that dx, because it sounds like a cop out. At least she's addressing it and treating it.

Love you sweetie.

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