Hysterectomy Experiences

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Many women have been gracious enough to share their experience
of hysterectomy and its impact in their lives. As I continue
to share and read, it confirms my experience and belief that
we are not being treated for the multitude of post
hysterectomy/TAH/BSO, related health problems/symptoms.

**If you are in a position to help or to help bring awareness
to these issues, PLEASE DO! So many women
today are suffering greatly.

Without further ado, the brave stories of many women, told in
format of my questionnaire, unchanged, some ladies have requested
their stories be "anonymous" for various reasons,
I have honored this request.

For Hysterectomy
*******************
1.) What was the reason for your hysterectomy? (endo, fibroids, cancer, etc.)
*heavy menstrual bleeding/severe anemia fibroids had been removed
10 years prior and no sign of recurrence

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?
*somewhat, as far as medical recovery...since my ovaries were left in I feel
like there is no info on how your body changes after your uterus is
removed...if it changes at all......this seems to be an ignored subject

3.)If not your doctor, where did you get your information on hysterectomy?
*I did get a lot of info online. Doing searches stc. then I found the
sansuteri newsletter and found much info from other women but still not much
on how your body will function with no uterus

4.)Did you use birth control pills in your lifetime? *yes
If yes for how long total?*1 or 2 years...tried them twice
At what age did you start using them?*at 18 then again around 23 ...they
didn't agree with my system

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

6.)Do you have female blood relatives with reproductive diseases?
*mother had hysterectomy for same reasons

7.)How long has it been since your surgery?
*8 weeks

8.)What problems are you experiencing?
*none at present but had bowel pains

9.)What if anything has made them better?
gerber apple and prune juice....one baby jar each morning

10.)Have you ever encountered a doctor or nurse that did not treat you
with respect in regard to your difficulties? If yes, tell me about it.
*no

11.)Anything else you need or want to share??
*this surgery has giving back the energy that I thought was
gone forever. My uterus had enlarged 3 times it's normal size.
My periods were very heavy and I was severely anemic. Almost immediately
after surgery I felt energy that I hadn't felt in years and was happy and
surprised to get it back!!!!!!
I am happy that I made this choice. I was very comfortable with my doctor and I
think that lead to an excellent recovery.

**Thank you Brenda for sharing your story. Brenda's is a good
example of a positive outcome :o)

For Hysterectomy
*******************
1.)What was the reason for your hysterectomy? (endo, fibroids, cancer,etc.)
*Fibroids in my uterus; 3 cysts on right ovary; 2 cysts on left ovary,
endometriosis and lots and lots of scar tissue.

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?
*ABSOLUTELY NOT.

3.)If not your doctor, where did you get your information on hysterectomy?
*I purchased tons of book in the matter and the one from Dr. Goldfarb was
the most helpful.

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

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

6.)Do you have female blood relatives with reproductive diseases?
*Yes, my mother, cousins, nieces

7.)How long has it been since your surgery?
*It'll be a year on October 7, 1998

8.)What problems are you experiencing?
*Pain on my joints (right knee irradiating to leg; cuf irradiating to
right forearm; back pain)Insomnia, skin rash (arms and legs only);
pelvic area pain; itching and burning in the vagina; depression
and tiredness.

9.)What if anything has made them better?
*Multivitamins and antioxidants; 20 mins. of walking in treadmill when
pain allows me.

10.)Have you ever encountered a doctor or nurse that did not treat you
with respect in regard to your difficulties? If yes, tell me about it.
*Well, the first one, who operated me of myomectomy in Walnut Creek, CA
told me that if I was not going to have babies there was no need to keep
my uterus.
**The second one, who performed a second myomectomy told me flat out "if i
was in love with my uterus."

*The third one, who finally performed my TAH/BSO told me that the
solution to all my problems was to go through this surgery. He didn't
talked to me at all about when, how and various types of hormones. As a
matter of fact, I went through almost a week after the surgery without
taking any hormones at all (believe me, this was not a pretty picture).
Even though I was suffering from estrogen depletion and wasn't sure when
was i supposed to start on these he never volunteered this info. When i
went back to have my stitches removed, then he mentioned that Premarin
was the solution. I read about it and refused it but i suggested some
other natural types and then he opposed to this idea because there was
not enough research done. He gave me 2 types of patches which didn't
work for me. End result: I'm taking Premarin .625 mgs.
I went back to him after 3 months, complaining of joint pains, ringing
in both ears, skin rashes, insomnia, memory loss, etc. and he ignored
this by saying that, these were not related to Premarin. I also
mentioned that I've had 5 to 6 yeast infections, after the surgery and
he kept prescribing Diflucan. When i had the last yeast infection he
made a culture and said that it was atrophic vaginitis and prescribed
Premarin Cream daily for two weeks and then twice a week until? (he
never said when to stop it) - his comment was: Oh, well, there's only
some much scratching that a woman can take. This is probably the most
unprofessional doctor that I've ever met. Not only that, but his sense
of compassion is non-existent.

**Yesterday, 9/24, i went to see another OB/GYN and he told me that I
don't have atrophic vaginitis and he found a mass in my pelvic area
which suggests to him recurrence of endometriosis even though i have no
ovaries, uterus, fallopian tubes, and he cannot continue assisting me
because he's only working part time in this clinic. I recalled asking
my previous doctor if endometriosis could come back and what could i do
to prevent it. There was no response from him. Now, i'm faced with
starting the process all over again (Ultrasound, etc.) Just when i
though there was a light after the tunnel it seems that I'm not even
near it.

*My feeling is that men OB/GYN definitely cannot take care of women or at
least have absolutely no idea of how to.
**By the way, I'm looking for a new OB/GYN with specialization in female
reproductive endocrinology in the area of Charlotte, NC. If you happen
to have any suggestions, I'll be totally indebted to you forever. I
refused to be considered as a wimpy, complaining old lady. As a matter
of fact, I'm a professional woman with a degree, 43 years old, married
for 20 years with the most fabulous man (who is the exception to my
comment above) and unfortunately with no kids.

11.)Anything else you need or want to share??
*I think that we women need to stick together and push these doctors to
help us survive with less acceptance to pain and confusion.

*Thank you for allowing me to express my personal feelings and feel
free to post my name and e-mail address.
*Anonymous by Request

**ADDITION 05/17/99
"After a long search for that Gyn w/Female Endocrinology specialization
in NC, I finally located Dr. Robert Albee in Atlanta (Endometriosis Care
Center). Dr. Albee is an specialist in laser surgery of endometriosis. On
12/1/98 he operated on me and, remember that mass that the previous Dr.
saw on 9/24/98? Well, it was a 6mm ovarian cyst of a remnant left from my
hysterectomy performed on 10/97. He also found my bowels embedded in lots
and lots of scar tissue. Fortunately, everything was properly removed
and the bowel was freed. Because this surgery was performed w/scope the
recovery period was very fast. I have been feeling much better,the yeast
infections have not returned, the depression is almost minimal,there's
virtually no insomnia and absolutely no hot flashes. Once in a while I
have the twisting and turning of my bowel and probably will go back to
see Dr. Albee for a check-up - remember that there's no cure for scar
tissue and it grows back within 72 hrs. post surgery, even though Dr.
Albee uses a special laser and interceed to delay the growth. Overall,
my quality of life is improving and yes, I'm still on Premarin."

Thank you.

*Anonymous by request
Hysterectomy
****************

1.)*I had a vaginal hysterectomy because of uterine fibroids that
were causing me to bleed and clot profusely for several months.
I also became anemic. D&C, provera, estrogen, nothing stopped the
bleeding. They also removed one ovary because fibroids had grown outside
my uterus, attached to ovary, and were causing internal bleeding.
A biopsy of a polyp removed with my uterus revealed a low grade
endometrial stromal sarcoma (a rare cancer). Two months later I had
abdominal surgery to remove remaining ovary, cervix, 1/3 of vagina,
and random lymphnodes in my pelvic, abdominal, and thoracic cavities.
I was 38 years of age at the time.

2.)*The first surgery I was only informed of the recovery time I would
need so I could arrange to take time of work. I was cautioned about
not lifting anything 2 days after surgery, the day after a nurse had
watched me lift a heavy suitcase onto my bed and not said a word or
offered to help me. I was informed of the basic post op precautions.
Before the second surgery I was informed about the risks of nerve
damage that could effect my bladder control only. I awoke with drainage
tubes and bags from my abdomen, oxygen, a supra pubic and urine bag, IV
for glucose and pain meds, was NPO(nothing by mouth). No one had told me
about or prepared me for all of this. My first thought was something went
terribly wrong and my bladder is shot and I will have a bag forever. I was
never told about surgical menopause, just that I could not have estrogen
because of cancer and I might have some menopausal symptoms because of this,
and could only have progesterone to prevent cancer from returning.

3.)*I got info on my first hyst from my OBGYN who performed it and also had
some previous knowledge from friends and relatives experiences. Got little
if any info on second surgery, just that it was the only treatment option
available for my cancer.

4.)*I used birth control pills in my late teens, age 18 & 19, until early 20's.
The pill caused my periods to stop, so I never used them consistently. In
my mid 20's I switched to a diaphragm which I used until my tubal ligation in
my early 30's.

5.)*I used pads, tried tampons but had too much leakage and clotting for them
to be effective for me.

6.)*I had a maternal grandmother who had a hyst in her 30's, cause unknown, but
doctor's comment was it was the biggest mess (her uterus) he had ever seen. No
other known relations who had reproductive diseases.

7.)*It has been just over 5 years since my surgeries.

8.)*The problems I have experienced over the past 5 years are: insomnia,
profuse night sweats, fatigue, memory loss, brain fog, loss of concentration,
depression, anxiety attack and disorder, loss of libido, vaginal atrophy with
accompanying pelvic, bladder & urethra pain. I think that is all of them.

9.)*Dalmane for the insomnia for a couple of months post surgery, then Tylenol
Pm, insomnia has improved with time; nothing has worked for the night sweats,
although they are now intermittent instead of nightly and some nights they are
not as severe as others; fatigue, memory loss, brain fog, loss of concentration,
and loss of libido has improved recently since I started natural testosterone cream
daily and doubled my estrogen (Premarin) dosage; depression and anxiety have improved
with Zoloft and psychotherapy; currently using Premarin cream applied vaginally for
vaginal atrophy, pelvic, bladder & urethra pain are now gone.

10.)*Actually most of the doctors and nurses have treated me with dignity, they were
not always as informative as they should have been, but they were never rude or
degrading towards me. My OBGYN and his nurses have always listened to me with sympathy,
explained things to me, and tried to help. I am fortunate in that.

11.)*Can't think of anything else to comment on at this time.
Hope this helps. Best wishes in your endeavors, let me know if I can be of
any further assistance.

*Anonymous by request
1.)*Reason - one benign 7 cm. fibroid which caused occasional mild cramping.
I was perimenopausal, and otherwise feeling wonderful. High energy, high
sex drive, lots of plans and a relationship.

2.)*Informed consent - no, I was definitely not informed about any long-term
effects. I asked, and was told lies. Some of the lies were: that my uterus
would not go back to normal size and would remain large and cause trouble,
that sex and sex drive would not change, "don't worry, we're not operating
on your brain", none of my patients ever complained of lost sex drive, or
you will never be able to take hrt, or if we leave any part of the cervix
you will have to take progesterone, or don't be like my last patient; she
waited to long and is dead now, and don't blame me if you have cancer! The
doctor who made that last statement was at another big teaching hospital.
She resented the fact that I brought in Dr. Cutler's book, so I could
respectfully point out certain references, on whether or not to leave the
cervix or ovaries, or myomectomy options. When I decided to postpone a
hysterectomy decision, she picked up some books, slammed them down on the
table, and stormed out of her office, slamming the door behind her. I
calmly opened the door and on the way out asked her in the hallway: "Doctor,
why do you think I have cancer"? She said "Because of your age - you are 50,
and you are still menstruating".

3.)*Information - I read Hysterectomy: Before and After by Winnifred Cutler,
The Hysterectomy Hoax, Dr. Stanley West (book available the library or from
his office), No more Hysterectomies, Dr.Vicki Hufnagel and others. I had
read a consensus among renowned gynecologists in a volume of the New York
Academy of Sciences, that if hysterectomy were necessary, they would select
experienced and careful doctors, not residents. I had also read the Karen
Carlson studies in a small Maine town, in which only short-term studies are
reported (6 mo. and 1 year), and thought it was a poor example to follow.
Possibly because she is part of Harvard, these studies are often taken as
the industry standard.

*Unfortunately, I knew a few women who told me it was the best thing they
ever did - no problem, and was told by all doctors but one, that my
information was propaganda and wrong. I chose a myomectomy doctor at the
big, famous hospital over a doctor at a smaller hospital, where he actually
had more control over choices for his patients. It was the wrong choice. I
think age bias had a lot to do with it.

4.)*I never could take birth control pills, and used condoms, diaphragm and
foam. (I was estrogen-dominant and used natural progesterone to control
monthly migraine headaches until I reached 45).

5.)*I used mostly tampons, and sometimes pads on heavy days. Short, regular
cycle.

6.)*I had no relatives with reproductive disease. In their reproductive
years, regular exams and ultrasound detection for fibroids were not common,
nor were regular visits to a gynecologist. Also, potent artificial estrogens
were not fed to animals then, for pre-slaughter fattening.(Changes post 1960)?

*I have a niece with endometriosis - two laps by age 25, one bad course on
Lupron, used progesterone satisfactorily,and is now doing fine,no hysterectomy.

7.)*It has been 4 years since my surgery. They left both ovaries and a
cervical stump. A resident told me he did most of it. This was against my
strong objections and without my consent.

8.)*I had immediate post-surgical, short-term memory loss, severe insomnia,
large protruding abdomen (about 5-6" out from my navel), and left-sided
pain - all still the same or worse. I began to lose my hair within a few
months, now about 30% gone, changing from thick and curly to thin and poker
straight. My skin began to break out and peel, and is over-all much drier.
Immediate loss of libido. Partially recovered 6 months later, with natural
progesterone (200 mg/day). Gained 30 pounds the first year, and now 60
total. Fatigue.

*Other -
*I was injured. The resident had over-used the retractors (bikini cut
incision) and injured the psoas muscle, which goes from the pubic bone to
the low back. The femoral and inguinal nerves within it were crushed. My
body must have gone into spasm. I awoke with my back arched off the bed,
unable to straighten up completely or to sleep on my back. Gradually, the
pain became chronic.

*All these problems were covered up at the hospital, and by all other doctors
I consulted for over two years. I was told early-on my abdomen was "open"
and prolapsed, and that the pelvic floor nerves were injured, but no doctor
would put this on paper. My surgeon sent me to a sleep clinic, where I was
passed first to a psychologist, the first step in dismissing my injuries. I
have spent thousands of $ on pelvic floor therapy and osteopathy, which has
helped. I am dependent on drugs to control pain and to sleep. I developed
a hand tremor within two weeks of surgery, which I believe was the result of
drugs given under anesthesia (probably Reglan).

9.)*What helped - natural progesterone (about 200 mg at night) helped
restore some libido, stopped night sweats, prevented depression and migraine
headaches. Estrogens in any form caused breast pain, headache, nausea and
worsened sleep.

10.)*Lack of respect. Other than being lied to by the surgeon, yes. I
found in general, that when they know you have been hurt by a doctor
(especially one who is at a famous teaching hospital), the following
scenario is common: (1) they may abandon you, and/or sweep the problem
under the rug. (2) They will blame you for what has happened, ie you were
too anxious, you had early trauma, sexual or other psychological reason, or
disobeyed orders.

*On a consult a year later for severe pain in my groin, a doctor stated
"lady, when the pain gets bad enough, you'll get your head straightened
out"! It shocked me so, I wrote it down before walking out of his office.
He also had said I must have missed my uterus, as a cause for pain.

*(3) They silence you with psychological labeling .

The sleep clinic psychologist asked a lot of very intimate questions,
refusing to hear any of my hysterectomy-related complaints, and divulged
what I had said in a report that should have been confidential. He blamed
short-term memory loss and insomnia on various phenonoma of early childhood.

*I consulted a well-known urologist who kept me waiting for 2 hours in a cold
room, undressed and in severe pain. He suggested consulting a "sexologist"
for pain after sex, and hinted that any pain not found in within his
gynecological speculum was psychological. When I continued to disagree, he
was so angry, he was spitting in my face. I asked him about a urologist in
Chicago who did pelvic floor research, and he replied "I know her well, and
she won't help you". She finally did help me, immediately diagnosing the
nerve injury with slight pressure of her finger on the vaginal wall. In a
simple exam, she reproduced pain which was in the pelvic floor muscles.

*Femoral nerve damage from retractors is a commonly-known consequence of
badly performed or inexperienced surgery. Leaving a patient herniated
(with a protruded abdomen) is unethical and if left untreated for too long,
may not be remedied.

*My surgeon was a well-known gynecologist. He lied to me by his unwillingness
to do a myomectomy which he had the skill to do, and the reason I had consulted
him. He left me in the hands of a resident after I was under anesthesia,
against my wishes. Dr. Andrew Friedman finally did lose his license this May,
for lying about his research in 3 publications (he also worked for the drug company
which makes Lupron), and for lying by changing, making up and adding to patient's
permanent medical records.

*Several suggestions for women who do want the choice and to avoid injury:
Computer research and communication with people and organizations giving
options. Remember that medicine is business, not personal. Go to surgeons
(gynecologists) who have the skills to give options, like myomectomy. Avoid
big, teaching hospitals and doctors who publish research with drug company
money. Their focus is biased and narrow. Seek a good endocrinologist as
part of your treatment. They are not making a living at surgery, and
diseases like fibroids and endometriosis are often estrogen-dependent and
hormonally sensitive. Be certain to insist on experienced surgeons, and
write "no residents or interns", including assistants, on your Consent Form.
Know beforehand, and in writing, just what is to be performed, and how far
you are willing to go ( Ie, leave the ovaries unless proven pathology, or
leave all of the cervix, with a portion of the uterus - not a stump; two
different operations. Read a surgical text on your operation as part of
your literary research. Make sure your pathology is proven before, not after
removing your uterus or ovaries. Check references that discuss the many
grades of cervical hyperplasia, that changes are slow, and that options to
hysterectomy can include D&C and progesterone therapy.

*If a doctor is disrespectful, write him or her a letter, or complain to the
Board of Medicine. Chances are, you are not alone.

*If you suspect injury, insist on the facts until the problem is clarified or
fixed. Give as little information as possible of a psychological nature, as
not relevant.

*Respect your right to know everything, and to get all your records, as soon
as possible. Tape record sessions or bring a friend who can. It will help
you remember, and offer you protection.

**NEW**Research & Data Collection Let your voice be heard!

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