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Doctor # 9's opinion Doctor # 9's opinion

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  #21  
Unread 02-04-2006, 01:09 PM
Doctor # 9's opinion

whatsnormal
i have been reding these posts and feeling somewhat validated. I have some similar porblems. I had a bad hysto surgery . I bled terribly and the doc was not my regular surgeon, he was his partner. They had to peicemeal remove a huge fibroid and well, I've been messed up since. Not that I was not messed up before, but I was in not much better shape afterward. Now, after several other sugeries, I have a huge belly that hurts all the time. My scar feels heavy . I too have a large vaginal cuff, but only one doc has been willing to even talk about it. the rest just act like all is normal. My vaginal cuff is so large it showed up on a back xray. Someone needs to go in and redo that mess, but I can't find anyone who will do anything. They just give me pain pills or tell me that if they did any surgery it would shorten my vagina. who cares? What I have noticed is this. Docs will not tell you what they really see if you don't know enough to ask the right questions. they lie or just dont tell you. Honestly, if they think you are stupid or don't know enough to realize you have something wrong with you, they will not do anything. I have seen so many docs that thought I looked normal and one gyn who was apalled and said "you must have had an emergency hysto, our vaginal cuff is like a huge ball ,like a fist sex must be very painful" . All I know is i cramp all the time and my belly is heavy. Can't seem to find a doc who wants to do anything. Even the gyn who told me the truth, she is not willing to do anything. she acts fearful. she now downplays on what she told me originally. She said she could not imagine how i could have sex without it hurting, and I said well my husband was impotent and she said "well i guess that has worked out ok then". Imagine that?
vali
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  #22  
Unread 02-04-2006, 01:36 PM
Doctor # 9's opinion

Bless your Heart, So many of us can relate, and so
many of us have said the same things about the Dr.s.
The pelvic area is sooo complicated, and has so many
nerves and blood vessels, that nobody seems to have
a handle on it. They know that the adhesion monster
exists, and there are just no sure cures for it, and the
reason they don't want to touch you is that they know
the possibilites are that they could make things worse.
They don't want to take that chance, because the
misery will come back on them. I guess that is why
the big mystery surrounds it, it is one big fat throw
of the dice, you might come out better, but the
chances are that you won't, and might be worse off.
But why can't they just lay it out for us.
whatsnormal, I think that is what your Dr. is saying
that "yes" you may get more adhesions, but if you are
hurting so bad you can't stand it, it might be worth a
try to take down what you have in hopes that where
the new ones form may be less offensive. That vaginal
cuff is where all that cutting and sewing takes place,
and everything is sitting right on it, plus when, or if
you have sex, it is getting it from that end, too.
To top it off, when your hormones have been compromised you heal differently, and that is exactly
what my Dr. told me when I had to keep coming back,
time after time, shortly after my hyst. I wanted to yank
his head off, and say " why in the H--- didn't you tell
me that before you did the hyst? I would say the ability
to heal is a pretty big deal to most human beings. I was
one of those who could have gotten by without a hyst,
just some low back pain, from a prolapsed Uterus.
And if I had been advised properly I could have made a
different choice. And for those of us who have husbands who want sex, is really an added stress, and
a nightmare.
  #23  
Unread 02-04-2006, 01:40 PM
Doctor # 9's opinion

  Quote:
Originally Posted by Vali
whatsnormal
Docs will not tell you what they really see if you don't know enough to ask the right questions. they lie or just dont tell you. Honestly, if they think you are stupid or don't know enough to realize you have something wrong with you, they will not do anything.
I really have to disagree with that statement. Yes, I've been to some docs who just didn't care or couldn't help me, but I really don't think any of the docs were outright lying to me. The truth was, they just couldn't help. Once I realized that, I did not go back and went on a search to find another. I have been to at least 20 different doctors since my hyst.

The truth is that sometimes our problems may be out of the realm of the doc we are presently seeing. I have come to realize that my problems are probably not the norm, therefore I have to seek doctors who look outside the box.

Doctors do not have a cystal ball, I really believe that there is no way that they could've foreseen the problems that some of us continue to have. And who knows, I may have had these problems even without the hyst. Who really knows? There is no way to tell. Unless you can change the past and see into the future.

I know the Road isn't easy my friends. We have to somehow move forward and keep trying to find the solutions that are right for each of us.
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  #24  
Unread 02-04-2006, 03:55 PM
Doctor # 9's opinion

I have no problem with a doc telling me"I can't fix this, or this is beyond my scope of knowledge, et". I would respect indeed and honest person. I do not like being told that I'm just fine, they see no reason for my pain. Or if a doc feels that more surgery would only make it worse, well that is honest and an answer. It is not avoidance. I stand by what I said, I have had docs lie to me and not tell me anything , maybe their reaons were b/c they could not fix it, or did not know how, whatever, but this has been my experience. And if there is one thing I know about, well it is my experiences. I don't know about anyone elses, I was not there, so I can't say. I do know about mine. The gyn who told me that b/c my husband was impotent(at that time) that I was just fine, ie, i was not having sex so why should we do anything) well, that just really made me feel like less than human. I'm walking around with a huge ball of scar tissue that btw, weighs quite a bit, and as long as I don't complain, or I'm willing to put up with it, they are willing to leave it alone. I tell you, I feel like a freak. No point in telling my GYN, she says it is probably "stomach trouble". There must be a clinic or something that deals with these kinds of porblems.
vali
  #25  
Unread 02-05-2006, 05:46 AM
Doctor # 9's opinion

Well, I guess I have to jump in here and give my 2 cnts.
After my hyst I continued to have pain and was in my
Dr.s office about once a week, I will share some of the
comments, and these are exact quotes. One was " I
am all out of tricks" In other words "Get lost" but I
did have to keep coming back so he finally agreed to
do a lap and see if it was adhesions, and on the day
he agreed he said " now after I do this surgery you are
going to have to do something else about this pain medicine" and he said like " you had better not ask for
anymore pain medicine" and he said it in a way that he
just thought I was whining. One of the other things he
said, and there are to many to write here today, was
when I told him I had severe tailbone pain ever since the
hyst, he said that I just had a disk problem, and I'm
thinking " I didn't have it before my hyst" but I suffered
terribly with this as well as the other pelvic pain, of which was an enterocele, which he never discovered in
surgery or the 2 yrs I suffered going to him. But when
I was waiting to go into surgery he came by and I said
" now be careful with my tailbone, and he said " Oh, I
think you just had a virus" So one time it was a disk
problem and the next time it was a virus. That tailbone
pain finally did go away after about 6 mo. and that is
the time it takes for nerves to heal, and it was damaged during surgery but he was not about to admit
to that, and since then I have heard of several women
with this problem, who knows if it does permanent
damage. I believe they are much rougher with you than
is necessary. I've heard OR nurses say they toss you like a salad when they do surgery. I know Dr.s have a tough
job, but I also think, they, for the most part don't take
us serious, and my Dr. had no problem doing the hyst
but he wanted to be rid of me when I had problems,
and he didn't want to be bothered about giving me any
pain medicine when I continued having pain, and he
didn't bother to refer me to anyone who could possibly
help. I work in the Health Dept in a pediatric dental
clinic, and when we can't help someone we have several
people we can refer them to, and someone who can
take their insurance. One of the things that made me
the maddest is that none of the problems that we are
having were told to me as possibilites. The other thing
he did was told me I could go back to work after 4 wks
knowing that I was a dental assistant on my feet all day.
At the end of the first week I almost passed out from
the pain, when I went back to get a note from him that I needed a couple more weeks he said " I've never
seen anybody that couldn't work because of pelvic pain"
and that was a quote! There you have it, I guess that
is more like 4 cnts. And I could go on, I have since seen
15 more medical professionals, and had seen 11 before
the enterocele was found, now there is something wrong with this picture, and I know there are many
others like me.
  #26  
Unread 02-10-2006, 04:30 PM
Doctor # 9's opinion

I just feel so badly everytime I hear about dr's not listening. I am sooooo fortunate to have a great dr. After almost two years of bleeding daily and trying everything suggested by my family dr including the depo shot for 3 cycles......husband had a vasectomy 20 yrs ago and can only imagine what was going thru his mind.... she finally said i needed to go to a gyn. My friend gave me the number of hers. First visit he found fibroids and put me on hormones. I stopped bleeding for the first time in nearly 2 yrs. He gave me the options of staying on hormones.....I gained 15 lbs first month on them, removing just the fibroids or doing a LSH. I chose the LSH. Started having pain about a year and a half later and put off going to the dr for it till it had me in the ER. They said i had a cyst to go to my gyn. I hadn't been to his office since my LSH post op visit but I called his office to make appt and also to get different med's because they gave me codine and I cant take it. Not a problem. DONE! The pain I had was on my right side but the cyst was on my left and growing. My dr suggested the Lap Explor surg to see why I was having pain. He did find scar tissue and removed it along with draining the cyst while he was in there......thats another story. He's never mentioned adhesions so I'm not sure what that is or how different the pain is. Mine was AWFUL from my scar tissuse. Constantly felt like I was being stabbed with a huge knife. At its worst, it felt like the knife was being twisted. He did the Lap and removed it and have been pain free since a few days post op. The recovery time off work normally would of only been 5 days. I had the abdominal incission 2 weeks later to remove the ovary and that recovery was so much longer. Speaking from my own experience I would let them remove the scar tissue. I know how bad my pain was from it and cant imagine still suffering from it. Like I said before though, I dont know about adhesions and as far as I know I dont suffer from that.

I am sooo sorry that these dr's are not helping you. Have you asked friends and/or family who they see? Coworkers? I know you have to be so frustrated but keep searching. There are great dr's out there who do care. You will find one.....SOON!

Best of luck,
Vicky
  #27  
Unread 02-10-2006, 04:58 PM
Doctor # 9's opinion

Vicky,
Scar tissue and adhesions are basically the same thing. Just different terminology.
  #28  
Unread 02-24-2006, 06:44 PM
hi

Hi Sisters,
Well, as most of you know, I have been through the mill with every doctor for 3 years dealing with this pelvic pain. Well, EIGHT weeks ago I went to the uro and had a cystoscopy in the office, and they sent out a urine culture. Now, eight weeks later they call and tell me that the urine test came back showing bladder cancer. EIGHT weeks later! I am so angry. Angry at these doctors who keep pushing me off when I tell them something is wrong. Angry at the uro's office, waiting eight weeks to give me these results, (reason, doctor I saw only once was on vacation) Angry for not pushing harder, because I KNEW something was wrong. Please sisters, keep pushing for answers and don't let them blow you off.
  #29  
Unread 02-24-2006, 07:18 PM
Doctor # 9's opinion

(((whatsnormal)))

I am soooooo sorry to hear this news. What have they told you about your cancer? What's next?

You have every right to be angry, but please don't be angry at yourself! You have been an absolute trooper, pushing ahead when you felt like giving up. And, thank God you never did give up! It took massive strength to get to the bottom of this. I'm just so sorry that what was wrong is cancer.

Your story has been very illuminating, frustrating *and* inspirational. I hope that you don't have to work as hard in this next leg of your journey. Cancer is an awful diagnosis, but it does usually get people to take you more seriously.

You will be in my prayers.



Margot
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