Hysterectomy Experiences 15

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1.)What was the reason for your hysterectomy?(endo,fibroids,etc.)

**I had severe endo, 12 laps in 5 yrs, did whole lupron, depo route

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 had a great obgyn and I believe even she didn't realize the health effects I'd suffer

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

**In general terms all my Dr spoke about was hot flashes and osteoporosis.

4.)Did you use birth control pills in your lifetime?

**My whole life, from 12 to 25

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

**Tampons

6.)Do you have female blood relatives with reproductive diseases?

**All the women in my family on Mom's side as well as Dad's side

7.)Are you a DES daughter?

**no

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

**12 yrs

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

**yes, as well as cervix

10.)What problems, if any, are you experiencing?

**Horrible bowel problems, aged 20 plus yrs. Bone pain, hormone problems, thyroid dysfunction,
severe arthritis, no sex drive(none,zero). Hair falling out. Skin rashes, fatigue, then no sleep.
worst of all the horrible emotional problems that I have suffered.

11.)What if anything has made them better?

**I've tried everything, but I'm to the point where Dr's think
I'm crazy and I've stopped going to them.

12.)Have you ever encountered a doctor or nurse that did not
treat you with respect in regard to your difficulties?

**Too much to mention, all though I will say the psychological community
has been great to me, no one relates any of this to that (total hysterectomy)

13.)Are you currently using any form of hormone replacement therapy?

**Yes, Premarin 1.25

14.)How are you feeling currently?

**Horrible. Have massive bowel problems, lots of scar tissue causing lots of pain and
no one wants to touch it ie it'll cause more scar tissue.

15.)Anything else you need or want to share?

**No, just thanks for listening. And I wish I knew then what I know now.
I would never ever have gone thru this.

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1.)What was the reason for your hysterectomy? (endo, fibroids, cancer,etc.)

**I am 32 years old. Started having problems when I was 18. I had 5 surgeries prior to
hysterectomy, all for ovarian cysts, endometriosis, fibroids, and heavy periods.

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?

**I was informed as to what to expect right after surgery. Not the long term effects.
I think part of that was my fault. I had has so many surgeries, I thought I knew what to expect.

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

**I read a little on-line and talked with other women.

4.)Did you use birth control pills in your lifetime?

**I started using birth control when I was 18. I tried many, many different kinds.
They were either too strong or not strong enough or my body
would absorb the hormone before it was able to work.

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

**Both depending on the flow.

6.)Do you have female blood relatives with reproductive diseases?

**My grandmother and my cousin

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

**It will be a year in April

8.)What problems are you experiencing?

**Insomnia, bad!! Getting maybe 2 or 3 hours a night, joint pain,
abdominal pain, headaches, weight gain, no energy, uti's.

9.)What if anything has made them better?

**Nothing so far.

10.)Have you ever encountered a doctor or nurse that did not
treat you with respect in regard to your difficulties?

**A month after I had surgery, my doctor retired so right now I have no doctor.

11.)Anything else you need or want to share??

**If I had it to do all over again, I would rather live with the pain I had before surgery.

*Anonymous by Request

1.)What was the reason for your hysterectomy?(endo,fibroids,etc.)

**Large ovarian cysts. At the initial exam, I assured the specialist that everything else
was working well; though I had a history of endo and cysts I really cherished my organs.
I examined the paper I signed, making sure it only stated 'cystectomy'.
Even on entry to the hospital I wrote 'only cystectomy, nothing further' on the hospital papers I signed.

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?

**The doctor took all my organs without my consent. Never before have I ripped into
anyone the way I tore into him. He admitted (in front of my husband and I) that my age (48)
was a major factor, and had been '32 or on IVF the outcome might have been different.'
I was given no advice on what to expect by the hospital. I spent most of the
nights there beating up my pillow and screaming into it.

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

**I found information on the internet.

4.)Did you use birth control pills in your lifetime?

**Only for a short while. About 2 years. Around age 29.

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

**Both. I was a heavy bleeder, regular right up to the operation. The liar told me that I had
'already gone through menopause', but that was impossible.

6.)Do you have female blood relatives with reproductive diseases?

**My mother had a hysterectomy at 35. Those were different times; people didn't
realize what your organs do for you. She was dealing with
ignorant army doctors more used to stitching up soldiers.

7.) Are you a DES daughter?

**Not sure what DES is.

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

**August will be my 6th anniversary. I know how I'd like to celebrate,
but I'd go to jail if I followed through.

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

**Oh, he took everything that he could. He believed that since I was 'so old' I couldn't
possibly have any need for any of it. Funny, when I commented on his grey hair and
offered to return the favor, he refused, as 'men can reproduce into their 90's.'

10.)What problems, if any, are you experiencing?

**Sleep problems. Hot flushes. Joint pains. I have a very challenging
job so it's difficult to see if the anxiety comes from that or the operation.

11.)What if anything has made them better?

I concentrate on my career. I tried HRT. It wasn't for me. The butcher belongs to a
'menopause clinic', and I don't feel it's my place to add to the coffers of the drug
companies. The other thing that made me feel slightly satisfied was having the doctor
hauled before the medical board, where he received a slap on the wrist and
probably went out for drinkies with his cronies after. Better, though, was the response
of two doctor educators who agreed to use my 'story' in their
university lectures as an example of 'what can get you sued.'

12.)Have you ever encountered a doctor or nurse that did not treat you
with respect in regard to your difficulties?

**Some of the nurses at the hospital were horrified at what he'd done. I was given the feeling
that he wasn't a very popular person, and he tended to treat women like dirt. My current
female family doctor is pretty supportive, but I hardly see her.
For some reason people in white coats give me the willies.

13.)Are you currently using any form of hormone replacement therapy?

**No. See above.

14.)How are you feeling currently?

**If I'm working hard, I feel fine. If I've had so little sleep that I have trouble
thinking and solving problems, I feel pretty horrible, and wonder if it's all worthwhile.

15.)Anything else you need or want to share?

**Don't let anyone do this to you unless your life is in danger. It stuffs up your life
in a variety of ways. Eventually it will dawn on you that 'this is as good as it's going
to get', and you'll wish you hadn't agreed to it. Then, I didn't agree, did I?

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

I am 31 and had a hysterectomy last august.....2006

1) What was the reason for your hysterectomy?

**The reason for my hysterectomy was basically a lot of damage done to my insides..
2 EXTREMELY large fiboirds (both measuring at least a 16 wk pregnancy).Endometriosis
and the constant period that I had from 1999 to 2006...seriously all the time!!

2) Do you feel that you were informed about what to expect after surgery and what
long term effects might be on your health from your doctor?

**NO definitely not!! The obgyn who preformed this surgery was awesome compared to the
several I had seen before him...but definately not informed about a whole lot of anything
past what to expect at the hospital and for a few weeks at home...

3) If not by your doctor where did you get your information on hysterectomy?

**I received most of my information from the internet and my family....anything the doctor
did say was and or seemed coded so I would go home and look it up..

4) Did you use birth control pills in your life time? If yes, for how long total
and what age did you start using them?

**I started using birth control pills at the age of 14 and didn't stop until I was 29 yrs old.
I have been on EVERY pill and and one IUCD in that time line, so basically think back to
1990 and try to remember all the BCP out there up until now!! been there and done it...
nothing worked really but doctors all ways wanted to try something new..

5) Did you use tampons or pads during your menstruation?

**I used pads strictly...I was forbidden from using tampons as my doctors were worried
about clotting more then I all ready was in general using pads....Also as I aged
I would also use depends undergarments because at least get
through one night with out a leak (some times).

6) Do you have a female blood relatives with reproductive diseases?

**My mom at 17 had a hysterectomy after having me.....endometriosis..really bad
like mine. My aunt no hyster... but all ways has had real bad menstruation cycles.
My grand ma - 4 kids, uterine prolapse at age 70 hysterectomy instead of fixing uterus.
- many distant aunts, cousins also have difficult periods.
This is all on my maternal side!!! Do not know paternal side at all.

7) Are you a DES daughter?

**Not sure what that means??

8) How long has it been since your surgery?

**This up coming August of 2007 will be one year. Right now commemorates one yr since no
surgeries...had three prior to the hysterectomy..all failed

9) Did you have the uterus and both ovaries removed?

**I had a TAH - Total abdominal hysterectomy. I do have one and a half ovaries still.

10) What problems if any are you experiencing ?

**Physically - I experience mild hot flashes, monthly cycle escapades THAT ARE STILL BAD
and sore sore breasts every month now that at least I never got this effect all the time before...

Mentally- Depression, anger, happiness, fatigue, a kind of brain fog, I admit I don't have
the ability to remember things like I used to! and I SWEAR
I sometimes still feel pain that is not and can not be there now ...

11) What if anything has made them better?

**So far nothing. I have good days and bad days. I am still trying to figure out a way
to cope with the still very severe PMS I experience every month that still goes
on for 3 to 15 days. The mental aspect is a on going battle constantly.

12) Have you encountered a doctor or nurse that did not treat
you with respect in regard to your difficulties?

**Sadly, I have had a few. The first doctor that I saw at a major hospital in Toronto,
actually told me to loose half my body weight before he would even do something as simple
as a ultra sound!! He said my weight was the problem and didn't take into account that my
previous knee surgeries were the cause of the weight gain...And this problem was happening
prior to the knee surgeries. Another doctor used to medicate me to keep me at work as
I actually worked for this person. The last obgyn did tell me that I would DIE on the table
and there for no operation for you... He did not give me a lot of options in the mean time
and was un willing to help me find a way to loose weight properly so
I COULD HAVE A SURGERY I DIDN'T WANT TO BEGIN WITH..but knew I had no choice.

13) Are you currently using any form of hormone replacement therapy?

**No, I am not using anything related to hormone's

14) How are you feeling currently?

**At this present time I am all over the map. One minute fine and great and glad I had the
hysterectomy as I can experience life for the first time. Then other times I am very
upset and jealous if I see one pregnant person or someone's baby. I never got to have
kids (could not carry passed 3 months so there was 3 miscarriages).

I need support and can't find any that deals with this type of grief. No one offers
this type of loss counseling that I HAVE FOUND. The one person who does is in personal
crisis at the moment. I understand her reasons..but why are there not more people to help??

15) Anything you need to or want to share?

**I have been experiencing this form of personal hell now for 18 years. Since I HIT PUBERTY.
Things were never easy and it has only been since the hysterectomy that I am free of
pain and of constant bleeding. This came with a ultimate price of not feeling like
a woman. I still feel very defective and try to hide that feeling quite a lot. I am tryin
to learn how not to hide and that is why I wrote above about the lack of counseling in
Ontario and how even if I were to go and see a typical grief counselor how un equipped
they would be to handle this type of grief over a body
part that was taken and there for took my ability to give life...

My website is as follows :

www.marys30yrs.spaces.live.com

I am glad I found this site and hopefully my information helps you and maybe
I can be helped via your website even a little..

1.)What was the reason for your hysterectomy?

**endo

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?

4.)Did you use birth control pills in your lifetime?

**yes

If yes for how long total? At what age did you start using them?

**8 months at age 30

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

**pads

6.)Do you have female blood relatives with reproductive diseases? **Yes, mom

7.) Are you a DES daughter?

**no

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

**2001

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

**no

10.)What problems, if any, are you experiencing?

**pain, nausea, bowel and vomiting

11.)What if anything has made them better?

**the pill helped at first and i am on stomach medicine for the nausea and vomiting
and on bentyl for the colon cramps

12.)Have you ever encountered a doctor or nurse that did not
treat you with respect in regard to your difficulties?

**no

13.)Are you currently using any form of hormone replacement therapy?

**no

14.)How are you feeling currently?

**like crap!!!

15.)Anything else you need or want to share?

no

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

10/10/07

1.)What was the reason for your hysterectomy?(endo,fibroids,etc.)

**Very heavy bleeding and anemia. I was only 25 with two children but wanted more and did NOT want a
hysterectomy. I had started bleeding Nov. 2, 1994 and by July, 1995 I had only had 3 days of no
bleeding. At a doctors appt. to once again "talk" about the hysterectomy - the doctor literally
stormed into the room and demanded - why didn't you tell me that you were pregnant?!
I told him there was no way I could be pregnant because I was bleeding so bad there was no
way ANYTHING could be there, then he callously told me that the fetus wouldn't
live anyway and stormed out of the room.

After this, I went hysterical and curled into fetal position, and kept telling everyone
"Don't touch me! This is my last chance for another child!" An ultrasound was done and the
doctor said "It doesn't matter anyway - you've already miscarried." He then scheduled a D&C
for the next day, during which I hemorrhaged. Upon awakening from the D&C, I was told that
I had cancer and therefore HAD to have the hysterectomy. Two weeks later an "emergency" hysterectomy
was performed. And I woke up DURING the surgery.
My family was told after surgery that no cancer was found.

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?

**Definitely no. For starters, I was told it would be a vaginal hysterectomy with a small chance
of the possibility of having to be cut. If he had to cut, it would only be a three inch incision.
I woke up to a 15 inch incision. I was cut past hipbone to hipbone, vaginally was never even
attempted. I was told the "normal recovery pain" was all I had to deal with during recovery.
Also, during recovery I had to go back several time for various reasons - spastic colon, severe hot
flashes, and most importantly the incision kept draining and opening back up. He just kept putting
skin glue on the incision. As far as the hot flashes and similar symptoms -
I was told "What do you expect?! You're going to have to learn to deal with it."

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

**I went to several other doctors and was told that my surgeon was the best and to do what he
said. Family members were supportive of my trying to avoid the hysterectomy until the doctor
mentioned cancer. From then on, family members also pushed for the hysterectomy.
No one could understand how I could even consider taking such a risk.

4.)Did you use birth control pills in your lifetime?

**At 14, I was put on bcp for terrible cramping and heavy bleeding. Two weeks later,
I developed blood clots and the bcp was discontinued. BCP and hormones were tried again for
the same reason at age 20, again blood clots developed and they were stopped.

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

**Both. I was going through the largest size box of tampons and largest package of pads
every day and a half. Three times I woke up in a pool of blood from my neck to my knees.

6.)Do you have female blood relatives with reproductive diseases?

**no

7.) Are you a DES daughter?

**no

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

**12 years

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

**Not sure. The doctor told me that he took uterus and both ovaries out, but my records are
"missing." Since then, one doctor has told me that I do have one ovary.
Another doctor has told me that I have both ovaries but they do not function.

10.)What problems, if any, are you experiencing?

**On top of all of "normal" the pain and post-hysterectomy symptoms, several years
after my hysterectomy and when my children were in school, I decided to start a career
to hopefully distract me from my physical/mental pain. I worked my way up to becoming a supervisor
at our 911 center. I came into briefing one day and was informed that the same doctor who
"butchered" me was wanted for performing illegal abortions. As the supervisor,
I was involved in ALL of the details from the investigation for several weeks.

During the course of the investigation, it was discovered that this subject was not
ever licensed to practice medicine and was suspected of doing the same thing in 3 other
states! The police department stood by while a u haul truck was back up to the office and
permitted office personnel to load the u haul. Supposedly, no one knows what was
loaded onto that u haul. I contacted the supposed doctors office and was told that
all medical records were missing. I contacted the police department and was told the
subject had absconded and there was nothing they could do. I contacted the hospital that
allowed him to perform my surgery, and was told they had no records of my surgery and that
the doctors were contracted therefore they were not responsible. No one here would help
me in any way; everyone said there was nothing they could do. No one could help me find
out if I truly miscarried or did he just do the D&C to terminate the pregnancy so that he
could do the hysterectomy anyway. On top of that, I can't get past the thought that this
mans untrained hands were INSIDE of my abdomen!!!!! This feeling never, ever goes away ...
as I mentioned before, I woke up during surgery and actually felt his hands inside me.
I feel totally unclean and violated and feel as if in a sense, he raped me in a most unspeakable
way. He is still just listed as "wanted" and it is believed that he has left the country.

11.)What if anything has made them better?

**nothing

12.)Have you ever encountered a doctor or nurse that did not
treat you with respect in regard to your difficulties?

**See above

13.)Are you currently using any form of hormone replacement therapy?

**No. They all said I couldn't due to blood clots and
I just needed to find a way to "live with it"

14.)How are you feeling currently?

**On top of all of the usual post-hysterectomy pain and problems, in 2005, I had a nervous breakdown
and was diagnosed with Post Traumatic Stress Syndrome and Anxiety/Panic Disorders due to the
horrific hysterectomy experience compounded with the aftermath of discovering an untrained,
unlicensed person did this to me with absolutely no one held accountable and no way of any
closure to this event. I have tried to deal with this and get over it as advised but it
has ruined my life. Now, at age 38, I am terrified to go to any doctor. So much so that a broken
foot has went untreated. I will not leave my house alone for fear of being in an accident and
being taken to the hospital. The only way that I can leave my house is if I am with
my husband or teenaged children, who know of my fears.

15.)Anything else you need or want to share?

When I had the "nervous breakdown" I was not yet terrified of doctors. I did go to a
therapist who diagnosed the PSTD and assured me that once medication and treatment got
me past the "critical" stage, she would help me deal with the reason for the PTSD.
However, 5 weeks later when the medicine kicked in and I was feeling better, she said I was "cured"
and there was no reason for me to go back. So I didn't, which in turn meant no prescriptions.
This was the final straw in my trust for the medical personnel
and I have been too afraid to go back for anything else.

I still have all the hot flashes, other problems, and abdominal pain and worry that something
might be really wrong and have panic attacks over it.
But I panic more over the thought of it happening again.

(**Blessings, healing and peace to you my dear!! - Jeannah)

07/05/08

1.)What was the reason for your hysterectomy?(endo,fibroids,etc.)

**Endometriosis, Severe Pelvic Adhesive Disease, Heavy Bleeding and ridiculous pain

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?

**Basically I was told I would be normal with Hormones and would NOT go into Menopause. so NO.

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

**Internet and just the feelings I began having.

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 and I was probably 13 or so when I had my first surgery to remove very large
ovarian cysts and that was done through a bikini cut
(laparotomy) the BCP was to keep cyst at bay

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

**Yes and they were not affective even the super Plus...
Besides I felt they gave me VERY BAD CRAMPS

6.)Do you have female blood relatives with reproductive diseases?

**An Aunt who had Cervical Cancer

7.) Are you a DES daughter?

**No

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

**Almost 7 months

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

**Yes, Uterus, Both ovaries, and Cervix

10.)What problems, if any, are you experiencing?

**Bowel issues, Bladder issues, I had to have my Gallbladder removed a month ago,
Hot Flashes, Headaches, SEVERE DEPRESSION, I still have pain due to Adhesions
(I could probably tell where it inflames the most), No desire to have sex because
it is extremely painful. BAD Sleep issues

11.)What if anything has made them better?

**I take Premarin ,9 because the highest does gives me awful headaches.
I still have headaches but not as bad.

12.)Have you ever encountered a doctor or nurse that did not treat you
with respect in regard to your difficulties?

**My Doctor was all supportive before I had my surgery then after
he told me to just suck it up...1 month after hysterectomy.

13.)Are you currently using any form of hormone replacement therapy? If so what?

**Yes Premarin .9

14.)How are you feeling currently?

**AWFUL...Depressed and Lonely

15.)Anything else you need or want to share?

**Sometimes I wish I could have just dealt with the pain and misery from before.
I have lost my fertility, and most days I feel like I will loss my mind if not already.
I have a hard time being around pregnant women as I am 28 years old and EVERYONE is Pregnant.
At work alone there are 5 people pregnant and 2 more trying to get pregnant.
I have an extremely hard time with that being I never was able to become pregnant
and even tried with IVF which made my condition worse! I feel very regretful for the
past year about even doing IVF...I wish I would have never done it.
I feel like my life is a waste. Although I know I will Adopt at some point...But when
will I be strong enough to do that??? I don't think anyone understands me.
I am always sick...I still have pain that I will live with for the rest of my life
just from the Pelvic Adhesive disease which I know has just gotten worse.
I can actually feel the bands of tissue and where they connect to my bowel when I
go to the bathroom...I feel like an old lady and I am 28 YEARS OLD!!!

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