Hysterectomy Experiences 7

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Thanks to all who continue to share their
experiences so that others may not feel alone.

1.)What was the reason for your hysterectomy?
(endo,fibroids,etc.)
**endometriosis, fibroids, pseudomucinouscyst-adenoma,
hydatitiform mole

2.)Do you feel like you were informed about what to
expect after surgery and what the long term
effects might be on your health by your doctor?
**NO

3.)If not your doctor, where did you get your
information on hysterectomy?
**Dr

4.)Did you use birth control pills in your lifetime?
If yes for how long total? At what age did you
start using them?
**1 week, age 23 - YUK feelings

5.)Did you use tampons or pads during menstruation?
**tampons

6.)Do you have female blood relatives with
reproductive diseases? If so, what ones and
which relatives?
**sister-endometriosis

7.)How long has it been since your surgery?
**5 years

8.)Did you have uterus, and both ovaries removed?
**yes

9.)What problems, if any, are you experiencing?
**continued pelvic pain, bladder problems, urge
incontinence, and intestinal or muscle spasms??
severe hot flashes, lack of sex drive

10.)What if anything has made them better?
**heat, muscle relaxers for pain

11.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties? If yes, would you like to
share the experience?
**Never a lack of respect, but my physician minimized
my concern tht HRT was adding to continued problems
and that I still have endometrial tissue in my body.

12.)Are you currently using any form of hormone
replacement therapy? If so what?
**Premarin 1.25mg

13.)How are you feeling currently?
**very bad

14.)Anything else you need or want to share??
**nah

1.)What was the reason for your hysterectomy?
(endo,fibroids,etc.)
**I was diagnosed with endometriosis when I was 20,
I went through a study that dealt with pain cased by
the growth of endometrial tissue on the nerve
centers. I went through this study for 2 and half
years. Then went without treatment due to loss of
health insurance. At this point after 2 d/c's and 2
arthroscopic surgeries to remove growths in my abdomen
from this disorder, I was told that I was to young
for hysterectomy and would have to wait.

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be on your health by your doctor?
**Actually no I wasn't except for a pamphlet and
meeting my new surgeon/gyn for the first time and
telling him I had been in a study in the past and
the doctors name from the study and that I wanted
it done cause I couldn't handle the pain anymore.
So after a fifteen minute exam and five minutes
talking to me before his next appointment my surgery
was scheduled for four months later.

3.)If not your doctor, where did you get your
information on hysterectomy?
**I asked around but nobody really knew so I read
my pamphlet and waited.

4.)Did you use birth control pills in your lifetime?
If yes for how long total? At what age did you
start using them?
**No I did not but during the study I was put into
drug induced menopause for 2 years.

5.)Did you use tampons or pads during menstruation?
**Tampons

6.)Do you have female blood relatives with
reproductive diseases? If so, what ones and
which relatives?
**There really was no definitive diagnoses that I
can recall being talked about but I am the fourth
generation on my maternal side to receive a
hysterectomy.

7.)How long has it been since your surgery?
**Since August 17, 1995 when I was twenty-five yrs old

8.)Did you have uterus, and both ovaries removed?
**They removed uterus, tubes, ovaries and cervix.
(I just have the box they came with! Just a funny)

9.)What problems, if any, are you experiencing?
**Hormone replacement have tried 6 different hormones
and various combinations. I feel like a mutant
because I don't really have a sex drive and I'm
one big hot flash and fear osteoporosis.

10.)What if anything has made them better?
**Nothing yet would try anything

11.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties? If yes, would you like to
share the experience?
**Before surgery I was told to get used to it
because all I was experiencing was my period and
that I shouldn't be such a whiner but then I just
couldn't handle it (the pain) one day I went into
the emergency room and was seen by a doctor who
had just gotten back from a conference on how
endometriosis is misdiagnosed because of the lab
procedure used to diagnose since this time
procedures are changing.

Another thing I absolutely hate is going into a
doctor and having them act like being a sexual
being isn't really that important don't they
understand how embarrassing it is to say that you
have a great seven and a half year relationship with
a person who loves and cherishes you scars and all,
and that you want that feeling back.

I was told before I went into surgery that they
would leave my ovaries and just take out my uterus
and tubes but he decided to take my ovaries and
cervix so that I wouldn't have to have another
surgery later if problems arose.

12.)Are you currently using any form of hormone
replacement therapy? If so what?
**No but I am looking for one

13.)How are you feeling currently?
**At peace with my surgery decision and happy that
I have such an incredible person in my life who
puts up with the hot flashes and the "Mr. Roper"
(From Three's Company) I have became. I am truly
hoping this information helps someone who is about
to step down the road I have been walking upon for
quite a while.

14.)Anything else you need or want to share??
**Please let me know if there is anything out there
for HRT that really works and that you have
received this.

If you'd like to leave your email address for
other women to be able to contact you, please
add it here:

tgonzales@aol.com

1.)What was the reason for your hysterectomy?
**Ovarian cysts

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be on your health by your doctor?
**I was not informed at all!

3.)If not your doctor, where did you get your
information on hysterectomy?
**when I began going through menopausal symptoms I
read up on it in a book.

4.)Did you use birth control pills in your lifetime?
**Yes, 2 years.
At what age did you start using them?
**17

5.)Did you use tampons or pads during menstruation?
**yes from 14 years old on

6.)Do you have female blood relatives with
reproductive diseases?
**no

7.)How long has it been since your surgery?
**4 months

8.)Did you have uterus, and both ovaries removed?
**yes

9.)What problems, if any, are you experiencing?
**very painful adhesions

10.)What if anything has made them better?
**nothing yet, pain medicine

11.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties?
**no

12.)Are you currently using any form of hormone
replacement therapy?
**Yes, Estratest, it is WONDERFUL!

13.)How are you feeling currently?
**Thank you J Iím in a lot of pain with these
adhesions

14.)Anything else you need or want to share??
-

15.)Do you have a Web Site/Home Page?

VictimsNoMore

I'm also 28 years old!

1.)What was the reason for your hysterectomy?
(endo, fibroids, cancer, etc.)
**fibroids and the detection of tumors on my ovaries
only six weeks after my sister had died of
ovarian cancer.

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be by your doctor?
**not really. I looked up what I could find on the
internet and talked to the nurse about the questions
I could think of, but never had any idea of the
changes that would occur in my body.

3.)If not your doctor, where did you get your
information on hysterectomy?
**I went online, mostly, but still had no idea about
the physical changes, like UTIs and painful
urination, and my instant "belly" where I
had been flat before.

4.)Did you use birth control pills in your lifetime?
If yes for how long total?
**Yes, about two years once in my life; they made
me cranky and bloated.

5.)Did you use tampons or pads during menstruation?
**tampons

6.)Do you have female blood relatives with
reproductive diseases?
**mother had hysterectomy for excessive bleeding
when 52; sister died of ovarian cancer; sister had
hysterectomy for fibroids and early stage
cervical cancer.

7.)How long has it been since your surgery?
**almost three years.

8.)What problems are you experiencing?
**painful urination; I am very cranky and short of
patience and very easily fatigued.

9.)What if anything has made them better?
** for painful urination without infection: I have
cut back on coffee, gone to a low acid coffee, no
sodas, very little alcohol, cut back on citrus
juices, tomatoes, drink more water. More physical
exercise, St. Johns Wort seem to help with the
irritability. More rest: I have to take a nap
almost every day now.

10.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties?
**sort of : my doctor just stopped listening to me.
He poo poos natural hormone replacement, and at
some point he just decided to stop hearing my
complaints. He is never openly disrespectful, but
I think he is just too busy herding patients
through his office to give a damn.

11.)Anything else you need or want to share??
**I still have no regrets about the surgery, as my
family history and experiences led me to do it but
I wish I had been more prepared for the things that
happen afterwards. The doctor is only concerned with
your healing properly afterwards and you stop
seeing him right away, and here you are, left to
cope with the changes in your body. I would like to
see doctors offices doing honest preparation for
the surgery with the patient ahead of time and some
counseling afterwards. If most women are like me,
they might think that the ongoing problems caused
by the loss of the uterus and ovaries are coming
from somewhere else. For a while I just thought I
was mentally unstable.

1.)What was the reason for your hysterectomy?
**fibroids

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be on your health by your doctor?
**Somewhat -

3.)If not your doctor, where did you get your
information on hysterectomy?
**After the fact, I have researched on the internet.

4.)Did you use birth control pills in your lifetime?
**yes
If yes for how long total?
**4 years
At what age did you start using them?
**25

5.)Did you use tampons or pads during menstruation?
**Tampons

6.)Do you have female blood relatives with
reproductive diseases?
**No.

7.)How long has it been since your surgery?
**January 1999

8.)Did you have uterus, and both ovaries removed?
**First surgery 1 ovary & uterus - second surgery
other ovary and massive clean-up.

9.)What problems, if any, are you experiencing?
**Enterococcus infection after surgery - adhesions
on colon, depression, sleeplessness, hot flashes,
night sweats

10.)What if anything has made them better?
**not much helps

11.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties? If yes, would you like to
share the experience?
**Yes, after the first surgery and when I went
back into the hospital with the enterococcus
infection, I was told by the nurse that I just
shouldn't be laying around, if I got up and was
more active I wouldn't have these complications.

12.)Are you currently using any form of hormone
replacement therapy? If so what?
**Premarin - 2/day of .125 mg

13.)How are you feeling currently?
**Depressed most of the time. Alone, in pain
(abdominal). Also I have muscles that tingle in
my left arm & leg.

14.)Anything else you need or want to share??
**Anyone having a hysterectomy needs to know of
the complications from surgery as well as the
effects on your body - All I knew going into this
(partly my own fault) was that I wouldn't have
this small watermelon fibroid anymore and that I
no longer would have my period every other week
for 5-6 days and my bladder would once again
have control.

If you'd like to leave your email address for
other women to be able to contact you, please
add it here:

dawieland@hotmail.com

1.)What was the reason for your hysterectomy?
(endo,fibroids,etc.)
**They found what they thought was a large mass on
my left ovary, I had had problems in the past,as
well as watching my sister go through surgery after
surgery. I decided enough was enough. After the
surgery, the "mass" was shown to be massive scarring
caused by the first surgeon who had been inside me.

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be on your health by your doctor?
**I was informed that I would be placed on hormones
and was at high risk for osteoporosis.

3.)If not your doctor, where did you get your
information on hysterectomy?
**My doctor did not like the idea of a hysterectomy
on someone my age, but he informed me of what I
would be facing.

4.)Did you use birth control pills in your lifetime?
If yes for how long total? At what age did you
start using them?
**Yes, I used them as a teenager, the switched to
the norplant for almost ten years.

5.)Did you use tampons or pads during menstruation?
**I used tampons all the time.

6.)Do you have female blood relatives with
reproductive diseases? If so, what ones and
which relatives?
**My Grandmother died after cancer spread almost
completely through her body. My sister had 16
separate surgeries before they finally gave her
a total hysterectomy.
7.)How long has it been since your surgery?
**It has only been about six weeks.

8.)Did you have uterus, and both ovaries removed?
**Yes

9.)What problems, if any, are you experiencing?
**I have been having some discharge, it started
after 2 weeks without any kind of discharge or blood.

10.)What if anything has made them better?
**Nothing so far.

11.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties? If yes, would you like to
share the experience?
**Not with this surgery

12.)Are you currently using any form of hormone
replacement therapy? If so what?
**estratest h.s. .625 mg/1.25 mg

13.)How are you feeling currently? (I truly care!)
**I actually feel like I have a bit more energy, I
have been somewhat silly lately, strange as it may
sound, I believe it may have something to do with
the hormones.

14.)Anything else you need or want to share??
**The original diagnosis was wrong, I did not have
a large mass on my ovary, my original surgery had
left my insides basically fused together, while I
do not regret my hysterectomy, I would highly
suggest that all women have exploratory surgery
before deciding on a total hysterectomy. My pain
and discomfort was caused not by me, but by the
inept hands of a surgeon.

If you'd like to leave your email address for
other women to be able to contact you, please
add it here:

wolfrk@hotmail.com

1.)What was the reason for your hysterectomy?
(endo,fibroids,etc.)
**Initially had heavy bleeding, which led to a doctor
visit, which led to an ultrasound, which revealed a
huge cyst, located on both ovaries.

2.)Do you feel like you were informed about what to
expect after surgery and what the long term
effects might be on your health by your doctor?
**I appreciate the surgical skill I feel my doctor
possessed, but NO I was not informed of any of that.
I was handed some literature and I guess that was
supposed to answer any and all questions.

3.)If not your doctor, where did you get your
information on hysterectomy?
**Mostly, the internet.

4.)Did you use birth control pills in your lifetime?
If yes for how long total? At what age did you
start using them?
**Yes, I started on the pill at age 15 and continued
to age 20. Never again after that.

5.)Did you use tampons or pads during menstruation?
**Tampons

6.)Do you have female blood relatives with
reproductive diseases? If so, what ones and
which relatives?
**None that I am aware of.

7.)How long has it been since your surgery?
**3 weeks (March 23, 2001)

8.)Did you have uterus, and both ovaries removed?
**Yes

9.)What problems, if any, are you experiencing?
**So far, an ongoing problem with a bladder
infection. Cramps at times.

10.)What if anything has made them better?
**I still have the bladder problem and the cramps
come and go. I have mentioned the cramps to my
doctor, with not much of a response.

11.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties? If yes, would you like to
share the experience?
**The hospital experience was a good one, other than
after my recovery room time, and I was placed in a
room, I was basically forgotten about.

Periodically, someone would appear to take vitals
or change the I.V., but thats it. I was never asked
if I was feeling okay, or if I needed help with a
bath, etc. The last day I was there, they were more
concerned with giving me a suppository, causing a
bowel movement, which I guess for them was the
time to go home.

12.)Are you currently using any form of hormone
replacement therapy? If so what?
**Yes, I am taking Estratest H.S. which is an
Estrogen/Testosterone combo. I was curious about my
doctor's choice in HRT, and she explained that she
chose this type to help with my libido.

13.)How are you feeling currently?
**Actually, pretty good, all things considered. I
have taken everyone's advice and not pushed myself
too much. No problems with the HRT thus far. My
incision is SLOW healing, but I know that it will.
I have high hopes for the bladder pain, but I am
only 3 weeks post-op, so I am giving that time.

14.)Anything else you need or want to share??
**I would like to applaud my doctor in my overall
care, except in one area. I think I expected more
explanation and information than I was given, due to
the fact that she is a female. It's unfortunate
that more doctors don't "talk" more to their
patients. They don't seem to understand that
patients can and want to understand what is going
on exactly. I am sure there are a few out there,
that realize this. But it's sad there are not more,
that don't realize that the entire process is a much
easier one, when you are not plagued with questions.
15.)Do you have a Web Site/Home Page? If so, leave
me the url I'd love to visit ! No

If you'd like to leave your email address for
other women to be able to contact you, please
add it here:

Lvbnscorp@aol.com

1.)What was the reason for your hysterectomy?
(endo,fibroids,etc.)
**Endo,.Fibroids, Adenomysis, Anemia

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be on your health by your doctor?
**Not really,..he talked about some possible mood
swings and maybe a some uneasiness. Never what I am
feeling now and going thru.

3.)If not your doctor, where did you get your
information on hysterectomy?
**I had 3 surgerys the same time... the hysterectomy,
a bladder sling and some kidney work and a general
surgeon to remove some growths and repair tears in
the rectal walls. My general surgeon was their for
me when I was crying, he made some phone calls to
find out if what I was feeling was part of the
"hormone loss". He took the time to listen to me.
My gyne was not back from vacation

4.)Did you use birth control pills in your lifetime?
**No, only in the past few months prior...to help
with the bleeding...actually had the depovprovera
shots each month.

If yes for how long total? At what age did you
start using them?
**I am 37

5.)Did you use tampons or pads during menstruation?
**Tampons with pads for the first few days, then
Tampons only

6.)Do you have female blood relatives with
reproductive diseases? If so, what ones and
which relatives?
**An Aunt and Great Grandmother, and Grandmother...
all my mothers side

7.) Are you a DES daughter?
**No

8.)How long has it been since your surgery?
**A few weeks May 17th, 2001

9.)Did you have uterus, and both ovaries removed?
**Yes

10.)What problems, if any, are you experiencing?
**Bladder problems, dry skin, crying spells, some
depression,.insomnia,.feeling like less then a woman

11.)What if anything has made them better?
**Talking to my other Dr. and reading letters from
others I am not alone

12.)Have you ever encountered a doctor or nurse that
did not treat you with respect in regard to your
difficulties? If yes, would you like to share the
experience?
**YES! In the hospital....only 12 hours after the
surgery,...I did report her,...she didnt give me my
shot the dr. ordered and messed up the pump dosage.
They thought I was getting med. and the pain was so
severe I almost literally went crazy,...the next
shift nurse finally found the mistake, and my
gyne,....he dosen't seem to believe what I say I
am feeling,...thinks I might need to talk to a
psychiatrist about my crying spells.

13.)Are you currently using any form of hormone
replacement therapy? If so what?
**Was using Estridiol patch 0.1 mg per day, then
switched to Estrace 0.2 mgs a day, for 1 day then
he switched me to Premiran 2.5 mgs a day and
Zoloft.25 mgs a day

14.)How are you feeling currently? (I truly care!)
**Since the med. changes, I feel a little better,
not crying as often, feeling better about things

15.)Anything else you need or want to share??
**I am grateful for no more periods! Women please
ask more questions! if your Dr. seems to not have
the "extra" 5 min when visiting..take that as a warning!

If you'd like to
leave your email address for other women to be able
to contact you, please add it here:

DStr8TxFan1@aol.com

Debra Tracy

1.)What was the reason for your hysterectomy?
(endo,fibroids,etc.)
**Severe and chronic endometriosis and heavy
bleeding, pain and damage to areas other than the
reproductive organs.

2.)Do you feel like you were informed about what
to expect after surgery and what the long term
effects might be on your health by your doctor?
**Yes, but after so much pain and so many many
surgeries, I did not care at the time. I will say
a positive note: I do not miss my periods!

3.)If not your doctor, where did you get your
information on hysterectomy?
**My doctor was very good and very kind and had
known him for years. He explained everything in
great detail. He would even call me on his cell
phone to check on me.

4.)Did you use birth control pills in your lifetime?
If yes for how long total? At what age did
you start using them?
**Yes, from age 24 to age 37.

5.)Did you use tampons or pads during menstruation?
**I have used both. Only used tampons for a couple of
years because they leaked and because of the endo.

6.)Do you have female blood relatives with
reproductive diseases? If so, what ones and
which relatives?
**My mother had a hysterectomy at age 29, her sister
25, and others have had many problems with pain and bleeding.

7.)Are you a DES daughter?
**Not to my knowledge.

8.)How long has it been since your surgery?
**Oct 1997.

9.)Did you have uterus, and both ovaries removed?
**Yes.

10.)What problems, if any, are you experiencing?
**I have gained over 40 lbs, hot flashes, abdominal
pain, intestinal pain and problems, cannot go to
the bathroom without a rx laxative daily and then
cannot go very often, intestinal spasms, digestive
problems, occasional vomiting, never comfortable
and trouble sleeping, fatigue. One doctor says that
my intestines are now like a roller coaster and go
up and down. If the bowel is hard at all I rip and
bleed for days. He firmly believes that my
endometriosis has returned fully. My doctor that
was so good at treating me has retired and his
replacement just gives me more pain medication and
says I just need to learn to live with it. The
medicine puts me to sleep and I have even dosed
off while driving on several occasions. I have
since thrown that away and am in constant pain. I
take natural vitamins and hormone replacements
which do help but the pain is never gone and am
never comfortable. I am so miserable just like before.

11.)What if anything has made them better?
**Natural vitamins.

12.)Have you ever encountered a doctor or nurse
that did not treat you with respect in regard to
your difficulties? If yes, would you like to
share the experience?
**Yes, when I was younger a doctor told me to deal
with it, because I would be in pain my entire life
and to just stop complaining. Another doctor just
wants to give me pain medication and do nothing to
help. I just feel he has no idea what he is dealing
with and does not want to admit it.

13.)Are you currently using any form of hormone
replacement therapy? If so what?
**Natural vitamins. 14.)How are you feeling currently?
**Lousy. I am almost 42 and have 2 young sons
which were miracles but do not have the energy to
play with them.

15.)Anything else you need or want to share??
**I have had 22 surgeries and most of the
endometriosis attacks my bladder, intestines,
stomach, and may be even more. It was a very long
time before it actually attacked my reproductive
organs. I would have the surgeries so I could go
to the bathroom and to keep food down. I was told
that I would never have babies because I could not
carry one. I was pregnant 5 times, twice on the
pill and lost 3 babies and had 2. Both c-sections
and great difficulty in carrying. After the last
one, they tied my tubes because fertility was
never a problem and they did not think I could go
through another pregnancy. I bled for over 3 months
and they did the total hysterectomy.

16.)Do you have a Web Site/Home Page? If so, leave
me the url I'd love to visit !
**no

**Still having problems and am miserable. Do not
have anyone to go to for help.

© Jeannah McElroy. 2003

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