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Just Miserable Just Miserable

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  #11  
Unread 04-15-2004, 03:54 PM
Just Miserable

Dear Jeandre,

I am about 1 1/2 years post surgery, and struggling, too. I suffer with a very severe arthritic condition, not brought on by the surgery, but nonetheless, I feel like I too have been forever changed. I do not feel comfortable in my body, and I, too, am very sad. So please know you are not alone!

What struck me about what you wrote is that you feel so changed. We have been. It is like we have gone through a portal and it is one way, the opening has closed behind us. But I have to believe that after our grieving and sadness, that our lives have not lost their meaning -- that we may be forever different, but not worse. If we are lost, we can be found. We just need time and maybe direction to help us remember who we are -- remember who we were and where we were going, what our dearest dreams may be ... and if we find we are so different, as we are, then help us to discover who we may be, with all the potential that we have been given. Our lives our changed, but they do not have to be over.

Oh, I wish there was a map, or a guide, but it would be different for every one of us. I have found lately that I have been dusting off my old dreams -- the ones that were interrupted by so many years of pain. I have been trying to reconcile who am I and what I can do with what I wish I could be and do. And this is fun! And it is frightening. But I have been so despairing of late, and so lost and sad that I feel I have nothing to lose. What dreams do you have that you haven't dared to dream in so long? Don't tell yourself you can't do them. Just write them down.

I haven't had much luck with anti-depressents, myself. They tend to make another condition I have, a chorea, flare horribly and then my limbs twitch and it makes me feel worse about myself and my body, as well as emotionally more unbalanced. But therapy has been helpful to me, as has journaling and my church and prayer life. I read once that, even if you don't feel like it, adopt the attitude and position of prayer. Often enough, and it will guide you. God is calling you.

please know you are not alone.
With love and light,
Loretta
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  #12  
Unread 04-18-2004, 07:56 PM
Miserable Week

Sorry I haven't picked up this thread again since all of you were so kind to post, but, I was just too emotionally & then physically sick to reply -- last Monday was the 2 year "anniversary" so that was a hard day, & then, for some reason, Tuesday was even emotionally worse. Then, I got physically sick -- I'm hoping it was just the flu, & not something that will be returning yet again, as many of the problems seem to have done in the past 2 years.

I did want to note that I have already been diagnosed, since surgery, with hypo-thyroid (the one where your thyroid is already slowed-down) & take Synthroid for that, but I don't feel any different than I did before taking it. Even though it really scared me, I had really hoped that that was the root of the problem, but it has not proven to be so, or at least the medication isn't helping it. I have to literally drag myself out of bed in the morning & through the day anyway -- if it wasn't for work, & that it is my only income, I would probably just stay in bed. While recuperating, I began to plan to never go back to work, but then the hospital bills began arriving (within 2 weeks after surgery) & brought me back to at least that reality.

Given my educational background (I'm a psychology & sociology graduate), I'm very, & just too, hesitant of the medication issue, & given my job (government), I can't really have that on my record either. I'm glad if it helps others, & I even do through my work refer people for medication reviews, although I am hesitant for many of them too, but I also recognize that medication might not always help, &/or that it is difficult to find the right medication & not create more problems during that search. Aside from that, I'm not sure who to turn to regarding medication -- I know all the counselors in my area on a professional basis, so that creates a conflict, & not only do I not trust my doctor to oversee anything like that (& how would you keep it off your records?), but I think he would just dismiss me even more than he already does. Personally, I don't want to even address the hormone issue either due to cancer concerns, which my doctor rammed down my throat to scare me so quickly in to this surgery anyway.

I do just appreciate someone, as those of you do, recognizing that yes, this was major surgery, & it is emotionally & physically a serious thing.

I have also gone on the Aching Hearts Forum, & wondered if I should post this all there, but, I figure I have to at least feel phsycially well first before trying to fully deal with the loss issue even -- guess that's why this past year I was at least hoping I'd get to the point (after 1 year) of feeling somewhat better physically.

However, I wonder just when the physical problems &/or the grieving end, if it ever does past this point, & when does the healing begin? Or, do you just come to a point where you say, "Well, this just ruined my life & that's just the way it's going to be."? I guess I've come to the point of wondering if I deserve to feel better, or at least if I ever will feel better -- or to quote some of you, if I even do "matter", if my life really does have any "meaning" -- why I don't hear any "calling"? So, how much time does it take?

Thank you all though for caring -- & please know that I appreciate your replies, concern, & that I, in turn, am concerned & saddened yet that there are others struggling too.

Jeandre
  #13  
Unread 04-18-2004, 08:41 PM
Just Miserable

Oh ((((Jeandre)))) I'm so sorry you've had such a rough time this week, both physically and emotionally

I guess that being a counsellor yourself somewhat complicates things, especially knowing all the counsellors in your area on a professional basis Is there any chance that you could see someone from another jurisdiction, that you do not know?

  Quote:
I have also gone on the Aching Hearts Forum, & wondered if I should post this all there, but, I figure I have to at least feel phsycially well first before trying to fully deal with the loss issue even -- guess that's why this past year I was at least hoping I'd get to the point (after 1 year) of feeling somewhat better physically.
I'm concerned that the physical woes and emotional woes might be all tangled up together, so that, in order to recover from the physical issues, you also might need to address the emotional issues at the same time

I understand your reluctance at consulting the doctor who performed your surgery, since you've lost all trust in that doctor. Is there a possibility of seeing another doctor? One you can trust? What about your Primary Care Physician?

Sending lots of s your way and hoping that you find answers, and relief, very soon.
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  #14  
Unread 04-18-2004, 11:18 PM
Answer To Dany's Questions

Just a quick note in response--

Oh, to find a counselor that I've not had contact with in 20 years of working is nigh unto impossible -- I'd be driving for well over 3 hours one way to find someone I'm afraid. It is a quandry.

And, my general physician/primary care doctor, is the one who performed the surgery too -- there are only 2 surgeons at our local hospital -- my doctor & a doctor that is only a surgeon. Other than that, it would be impossible to switch to any of the other approximately 4 doctors who practice in our community. Yep, I live in a pretty rural setting. This has also been our family doctor for the past 32 years now, & my parents, who are older, go to him too, so I feel like I have to continue there, & I have to keep this "good face" on in front of him (rather than letting him know that I hate him for what he did to me -- hey, I have to blame someone!) so that he will work with me concerning their care. I also do like the nurses in his office, & have considered talking with one of them, especially the one who had "this same" surgery (see I can't call it that "H" word even!) a month before me). By the way, my doctor/the doctor she works for wouldn't perform her surgery, but he did perform this same surgery on the office receptionist -- go figure?!

See, I know I am difficult, but I also wonder if there is even any hope for any relief?

By the way, at the bottom of these pages I found this referral to a site where it notes that following such surgeries women have fatigue, loss of sexual desire, problems with their bowels, & also report a change in personality -- I'm not sure why this information isn't presented front & center on this site, & secondly I wonder why doctors don't tell women about these side effects? I looked up the site & the problems & the percentages are just overwhelming! I tend to think that if these symptoms were related to anything male problem, there would be medical research, telethons, & lots of information getting out to the public! Have to tell you though, that site didn't make me feel any better either!

So much for a quick reply!

Jeandre
  #15  
Unread 04-19-2004, 04:19 AM
Just Miserable

jeandre,

hi, I live in New Zealand, and I've had several gynachological surgeries over the last ten years. It's been a year and a half since my last surgery which was to remove my last remaining ovary due to recurring ruptured cysts. I seemed to fly through all of my other surgeries,
I'm a strong person and bounce back fairly quickly. But this last surgery really knocked me on my butt.
I haven't felt the same since I had it. Sexual intercourse is painful, and I have absolutely no desire for it. I find it very difficult to climax, and when I do, it just isn't the same. Sometimes it even hurts.
I cry a lot, and I find it very difficult to concentrate. My short-term memory is terrible. I feel so stupid when people are talking to me and I can't remember what they said two seconds after they said it. I'm sure I seem rude to people, as if I'm not paying attention. I have no self-confidence any more, and no motivation.
I wanted to write to you though, not just to moan and complain to you, but to tell you that my doctors put me on hormone replacement therapy six weeks post-op, and it really made a huge difference. I'm still not 100%, but I'm able to lead a fairly normal life.
I know there are cancer risks etc, but since I'm relatively young (44), to have lost my ovaries, the doctors said that there was less risk for me to be on hormone replacement therapy for 5-10 years than there was for me to not use it and start to have the bodily changes that come with menopause.
Loss of bone density, skin thinning, etc.
If you are dead set against HRT I know there are a lot of natural remedies you can try. I would also recommend something as simple as a little walk, every day, or even just a few times a week. Just 20 minutes around the park can do a lot to bring relief to depression. Something about the peace and relaxation of nature, trees and water, enters into your body and mind. It sounds silly I know, but it really helps me and it can't do you any harm. Also meditation I find very helpful. Just a few minutes when ever I have time.
I wish you all the best.
I hope things begin to improve for you soon.

best
Rae
  #16  
Unread 04-19-2004, 07:58 AM
Re: Answer To Dany's Questions

  Quote:
Originally posted by Jeandre
By the way, at the bottom of these pages I found this referral to a site where it notes that following such surgeries women have fatigue, loss of sexual desire, problems with their bowels, & also report a change in personality -- I'm not sure why this information isn't presented front & center on this site, & secondly I wonder why doctors don't tell women about these side effects? I looked up the site & the problems & the percentages are just overwhelming! I tend to think that if these symptoms were related to anything male problem, there would be medical research, telethons, & lots of information getting out to the public! Have to tell you though, that site didn't make me feel any better either!
The website you are referring to is very ANTI-hysterectomy. They are not a sponsor of Hystersisters, and since Hystersisters is neither pro nor anti-hyst, the information is below to provide balance to the members of Hystersisters. The fact that their information is available by clicking below does not mean that Hystersisters endorses their beliefs.

Yes, the percentages are overwhelming; but their studies are based on a survery of only 621 women who responded to their questionnaire between 1991 and 1999.

It's up to each woman facing he possibility of a hysterectomy to do her own research before agreeing to surgery. There are many alternatives available and a hysterectomy should be performed only as a last resort. Hystersisters does it's best to get that message out to its members.

It's so easy to blame our doctors for problems encountered after surgery, but the doctors can't perform surgery without our permission. Granted, some doctors don't inform their patients of all the possible risks, and that's why we need to research all options before signing on the dotted line.

Most women recover from their hysterectomy with no long term problems. There are others who have found that with their hysterectomy they simply traded in one set of problems for another.

Have you tried any form of HRT? Have you even mentioned your feelings to your doctor? I know you aren't happy with him, but perhaps you can find another? Just because he's your parents' doctor doesn't mean that you have to continue with him. Find another doctor, a doctor you can trust. The best way to find a doctor is by word of mouth.

I hope you can find a solution to your problems. Hopefully by the time your 3 year anniversary comes around you will have found the answers you need for a happy life.
  #17  
Unread 04-19-2004, 04:49 PM
Just Miserable

(((Jeandre)))) I know how hard it can be to find medical care when living in a small town: The town where I grew up was one of those and had only 2 doctors. Neither were surgeons and one was very, very old. As far as nurses, there was only one, and she happened to be the wife of the oldest doctor. At one point, we were booming: we actually had 3 doctors. But that was short-lived, since one of the doctors moved away not long afterwards. Things did improve, eventually, when a multi-disciplinary medical clinic was opened. Originally, they had 2 doctors and would have visiting specialists: the specialists would visit once or twice a month, much to our delight. And there were times where we felt that some of the doctors simply weren't doing as good a job as we had hoped It must be even harder when you have a professional relationship with these doctors.

If I were in your shoes, I would at least talk to the nurse who's also had a hyst. Sometimes, just talking to someone else who's been down the same path as you've been is enough to set your mind at ease. And she might also be able to point you in the right direction to get the help you so obviously need.

I know that the statistics you found on that website seem to validate what you've been going through. However, from years of reading posts on this website, the problems sited as most likely to occur after a hyst are not happening to the majority of women.

I know that, in my case, while I do have bowel problems, the bowel problems were there prior to the surgery. And my caring doctor explained why they have somewhat increased since the surgery: not only are the bowels located in very close proximity to the uterus, they also tend to settle in the space vacated by the uterus. For those of us who have temperamental bowels, that could be enough to upset the precarious balance.

Where personality change is concerned, my personality has changed: it's changed for the better. Because I am no longer sick on an almost permanent basis. Because I am no longer constantly bleeding and weakened by the blood loss. And because, since I kept my ovaries and they're working, my hormones are now balanced.

I know that my experience is not the same as that of all members, and that's understandable: we're all different. However, if you read the posts and look at the numbers, you'll see that, indeed, there are many, many women who have a hyst and do not end up with major complications. Some women do have minor, temporary complications. And, yet others have major, persistant issues to contend with.

That's why you'll see that, consistently, the members and staff of Hyster Sisters will remind members that a hyst is always a major surgery, regardless of how it's performed. That there can be complications, as there can be complications with any surgery. And that you should always research your options before having surgery.

I know that there are some women who do not have the luxury of time to do a whole lot of research: they are the women who are dealing with potential life threatening situations, such as cancer, who need to make a quick decision. However, as evidenced by research, that is not the case for the majority of women having a hyst: most of us have surgery in order to improve both our health and our quality of life, but it is still an elective surgery.

Please, ((((Jeandre)))), do mention your symptoms to a health professional and do investigate the possibilities of using either HRT or alternatives to HRT in order to try and get relief from your symptoms
  #18  
Unread 04-19-2004, 05:45 PM
Just Miserable

Dear ((Jeandre))

I can only imagine how tough your situation seems. But I did have some thoughts for you... if you would consider them....

The path you have been on so far (not seeking further medical help or counseling) does not seem to be working for you... It does seem that you have a choice to change your path and perhaps get a different result.... I know that you have written many things about why you do not want to get medical help... but in the end it only seems to be hurting you, and hurting you worse than maybe the embarrassment or discomfort that you are concerned about in confronting the issue head on and seeking help from the doctors or counselors that know you... or maybe making the effort to go elsewhere.

I don't know what type of employer you have, but if there is indeed a "black mark" for those who seek help, it seems you again have a choice....

I recently had surgery (for more endo) and saw this quote from Maya Angelou at the place where the surgeon worked...

"I can be changed by what happens to me. But I refuse to be reduced by it."

I hope you are able to find some answers. I have had to go far from home in my journey to try to find relief... and after 13+ years I am still on the journey... Hopefully it won't take so long for you.



Sarah
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