Advice about Hysterectomy
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Advice about Hysterectomy
I recently underwent an exploratory surgery and was
disagnosed with endometriosis, prolapsed uterus, and
probable adenomyosis. My second opinion doctor agrees
with the first, that a hysterectomy is necessary. I have
a choice about when, depending on how much pain I am
willing to tolerate and whether I want to attempt a
pregnancy first. I have 2 young kids and I'm pretty young
myself, I'm in my late 20s. My husband and I were pretty
sure that our family was complete after the birth of our
daughter, but I'm still devestated by this. Logically, it
seems like it shouldn't be a big deal, my husband was
going to get a vasectomy anyway, but I'm a bit of a mess
over it. It feels like I'm too young for this and I also
second guess our decision not to have any more kids. I
feel pressured to decide, and quickly, what to do. I know
that the time pressure I feel is purely in my head, but
it's a factor for me. I'm just really emotional about it
and really sad for the loss of the ability to give life.
And the finality of it. I was hoping to find some wisdom
here of women who have been faced with this and have some
experience to share. I thank you, sincerely, in advance
Losing my oven
I'm very sorry you are faced with this tough decision,
especially at your age. I am older, in my 40's, and after
several years of fertility treatment found that I have
adenomysosis, on top of a lifetime of endometriosis. I was
told that a hysterectomy was the only way to solve those
issues permanently, although the adenomysosis will resolve
itself in menopause. You obviously have a long way toward
menopause, so I'm not suggesting you wait, but here is what
I've decided: I will live with the pain and discomfort for
as long as I can. It will not kill me, and the pain can be
treated as needed. I do not want to lose my uterus, even
though it will not hold a baby. By family history, I may not
go menopausal until my 60's, so I will wait and see what
happens, and I will not be pressured by anyone to delete my
uterus; that is a decision I will make when I am ready -- if
I am ready. It is my mine, and I love it.
One doctor asked me why I was so ''attached to my uterus'',
since it will never grow another baby (I guess). I replied:
''Well, you've told me you're done having children, why are
you so attached to your testicles?'' 'Nuff said.
You can make your own decision about this, over time, as you
are ready. The medical community seems to think that we
won't miss our uteri, but I know that My BF misses hers
terribly (she had cancer and had no choice). Please don't
let anyone rush you into a decision. Take your time and let
this all sink in. When you are ready, you will know.
I have a friend who is 34 and found out several weeks ago that
she has a genetic syndrome that puts her at extremely high risk
for ovarian and uterine cancer. Her dad died of colon cancer
less than a year ago and they believe he had the same syndrome.
She has done the research and because her risk of ovarian cancer
in particular is so high, like 70% or something, she has decided
to have a total hysterectomy including ovaries. She doesn't know
anyone who has had this surgery at such a young age and is very
concerned about the implications and side effects of HRT, in
addition to being just plain frightened of course. She is
probably having the surgery around Christmas. Does anyone have
any experience with this that they would be willing to share with
her? Thank you!!!
I totally understand what your friend is going through, as I too
have Lynch Syndrome (you didn't name it, but I recognize it in
your description). Mine was diagnosed after my own bout with
colon cancer and I subsequently opted for a prophylactic
hysterectomy and oopherectomy. I was older at the time, 50, so I
can't comment on the implications of having the surgery done at
a young age, but if your friend is interested in communicating
with someone else with Lynch Syndrome please share my contact
information with her. Even at 50 it was not a happy decision to
make, but I couldn't bear the thought of living with the
resulting ovarian cancer risk, which incidentally I still have
even without ovaries albeit to a much lesser extent due to the
presence of other ovarian-type tissue elsewhere in our bodies.
I have chosen thus far to use hormone
replacement, so I have kept the symptoms of menopause at bay.
Also with Lynch Syndrome
My girlfriend who had just divorced and was on the fence about having kids
same procedure done at the same age. She recovered at my house for two weeks
because I am a SAHM so someone was around to keep tabs on her. She's had
few issues and is approaching 42-She met and married a great guy who was also
the fence about kids and they decided if the urge ever strikes they will
I understand that your friend is frightened. I do have a friend who had a
hysterectomy at 36, and the symptoms were fine. She had a ''giving away all
tampons'' party, and approached it with a great attitude and LOTS of support
family and friends.
Please tell your friend that she is so very lucky that these genetics were
and that her doctors are wanting to do the surgery now. A dear friend of
had a strong genetic history of ovarian cancer, and her doctors scheduled her
total hysterectomy for when she turned 40. She contracted the disease at 34
If your friend wants biological children (I wasn't sure if she has them), she
with her doctor now to do egg extractions before the surgery.
I have recently found out I am going to need to have a vaginal
hysterectomy. Everything I have read on the internet about the
recovery is frightening in light of the fact that I have small
children. The doctor I spoke with today made it seem like the
recovery is not so bad and if I have the surgery early enough in
the day, I could even go home the same day. What's the real
story? I am wondering if anyone out there has had one and if
they can share their experience with me to manage my expectations
and help me plan better as the surgery date nears. Thanks!
Hoping for a quick recovery
First of all, while you won't have an exterior incision, you're
still having a major organ removed and you are put under for the
operation. It took me almost the whole day after early am.
surgery for me to be able to hold any food down (your innards
stay asleep longer than your consciousness)and I ended up
spending the night at the hospital. I was told not to drive for
at least a week or two and when I tried after 10 days I could
barely sit for the trip. I went back to work after 4 weeks or so
and had to lay down to drive home (and I only worked 5 hours the
first day!). Though I felt ''fine'' after 4 weeks, I had NO
reserves. I really wished I had stayed out of work for at least
On the other hand, I was able to wash a load of clothes the day
I went home and could definitely walk around. Couldn't sit for
very long though and I was not supposed to lift more than 10
Now I did have a post op infection (but not serious enough to
be rehospitalized) that probably resulted in a slower recovery
but still having a major organ removed is NO JOKE and I cannot
emphasize enough just how ''on empty'' you will be for quite a
while AND of course there are the lifting and sitting
restrictions for at least a couple of weeks.
Recovery from a vaginal hysterectomy is usually easier than that
from an abdominal hysterectomy, but both are major operations
and require good postoperative management. Even with no
surgical complications, several days of limited activity are
necessary during the recovery period and I would not recommend
that such a patient be required to care for others in the house
(or even totally care for themselves) for a few days to a week
after a vaginal hysterectomy.
If there are children in the household, someone else should have
the responsibility of caring for them. There should also be
someone to help the patient with self-care as necessary.
Please speak with the gynecologist who is doing the surgery for
I just had a vaginal hysterectomy 2 months ago, and I have 2 babies at home (2
If you'd like to talk, email me back and I can tell you about recovery and hospital
My sister had a hysterectomy two months ago. There were 3 other
women who had their uterus removed as well. They were all
hospitalized around the same time. The other 3 women left after
2 or 3 days and were doing well. It is a major surgery and you
should really take it easy for quite some time.
My sister ended up not being able to leave. In fact, she got
very ill. Apparently, one in a thousand patients will have
problems and she was that one. Everything that possibly could
go wrong went wrong with her. She was in the hospital for 2
full weeks and she was extremely ill.
Realize that this is rare! She just happened to be that one in
a thousand. She left the hospital 6 weeks ago and she is still
recuperating. She's doing well, but she still takes it really
easy. There are times when she just needs to lie down and rest.
My sister is the busiest person that I know. She is someone who
is always gone, never available, etc. This operation has
changed her a lot. She just can't do the things that she had
been able to do. She learned to listen to her body and rest
when she felt that she needed it.
Realize that you're not removing a wart. This is an enormous
change for your body and you'll need the support afterwards to
help you recuperate.
Best of luck!!!
Has anyone had this procedure done? I'm going to have them
removed primarily in the hopes of stopping prolonged bleeding
(about 2 weeks+ per month). I'd like to hear from others who've
had this procedure, and any cautions you'd offer. Thanks.
I had this surgery a couple of years ago, under general anaesthesia. I
was surprised how easy the recovery was -- they told me to take a week
off work, so I did, but I felt pretty much normal by that same evening,
and never had to take a pain pill. (Hope yours goes equally smoothly!)
The only thing that was awful about it was the plug they inserted into
my cervix the day before, to get it to slowly dilate a few centimeters
before the surgery. It makes sense to avoid having the cervix forced
open from 0 to 10 all at once, so I'm not recommending you don't do it
if it's offered, but... it was a painful insertion process and the
cramps were harsh, like early labor (which, you know, makes sense since
it was exactly the same process!) The good news is, it only dilates you
to a certain point and then stops, so it was only uncomfortable for a
couple of hours. But I wish they had warned me -- *that's* when I
wanted a pain pill!
I will be undergoing a hysterectomy in a few weeks to deal with
very large fibroids. I don't doubt that this is the right
solution for the fibroids, but my surgeon has recommended that
I have her remove my ovaries as well. I am probably within a
couple of years of menopause (age 49) and I do have an aunt who
had ovarian cancer. I'm wondering if surgical menopause will
be significantly more difficult than natural menopause. The
surgeon's plan is to start me on an estrogen patch at surgery
and then wean me off it over the ensuing weeks or months. I
would appreciate hearing about anyone's experience with this
I had a hysterectomy about 8 years ago, and my doctor used the
same scare tactic about the benefits of removing my ovaries,
and then said, (like yours apparently), that I'd hardly notice
any difference, because they would just slap a patch on me
while I was in surgery, and I'd be as good as new. Well, it
didn't quite work that way. I was allergic to the patch, and
then tried several other hormone replacement therapies, before
giving up--they all made me feel terrible! So now I use
acupuncture and herbs, and that's much better. If had to do it
over again, I still would have had the hysterectomy, but I
wouldn't have been so cavalier about giving away body parts
that still serve a function.
Wish I hadn't
I think the surgeon's idea of removing the ovaries at the time of your
hysterectomy is a good one. My mother had a hysterectomy in 1975 (also for
enlarged fiberoids) and the surgeon left one ovary in. Then in the early '90s,
she found out she had ovarian cancer, and died from this in 1996. Breast and
ovarian cancer tend to run in families. There's also a gene (BCRA-1 and BCRA-
2 I believe) which researchers have determined make some women more likely
to get breast and ovarian cancer (my mother had both, but didn't find out until
she was undergoing chemo).
There is a wonderful book, Woman: an Intimate Biography, by Natalie Angier, that
deals with this topic. Her point is that ovaries emit hormones even after
menopause, so removing them unnecessarily can have unforseen consequences for
the woman. I don't remember the details, but it's a wonderful book. Check it out!
Natalie Angier fan
My neighbor had the exact same situation and had a really rough time after. She
actually became suicidal. I went to the bookstore and got a book on hormones, they
adjusted her dosage and she was fine. Her whole reaction was due to an
incorrect dosage. Thus I would recommend you pick up a book (I can't remember
the title but I got it at Cody's and there were lots of choices) and don't be afraid
speak up until the dosage is correct. Apparently it can take some fine tuning.
Has anyone else experienced extreme fatique after a Hysterectomy?
I had surgery 12 weeks ago and took my recovery very seriously
(lots of rest etc.), but once going back to work and the hectic
lifestyle, I am very tired all the time. I wake up in the
morning tired, even after a good nights rest. My doctor did do a
blood test to make sure my thyroid was working and I was not
aneamic. The test came back normal. How can I get energy? I am
being told that this is normal and it can take upto a year to
feel good again. I am glad I had the surgery but I don't want to
feel lousy again like I did when I was severly aneamic. I am
taking a multi vitamin, calcium and vitamin C daily.
I had a hysterectomy (unplanned) a year ago at the birth of my
daughter. I definitely noticed the fatigue you mention, also pain
at the incision site lasting until 8 - 10 months afterward. Only
recently have I felt like my regular self again as far as energy
level, attitude and motivation go. Glad to hear you're not
anemic, as I'm sure that will expedite your healing.
If you still have ovaries/fallopian tubes then it might just take
awhile for them to kick in after the trauma of the operation. I
can tell mine have recently started producing my normal level of
estrogen as I finally had the monthly PMS/acne breakout my doctor
promised me I'd still get (without the actual period itself,
If you find a support group in the Bay Area for this kind of
thing, or want to talk more, please email me. There's some online
stuff like HysterSisters.com but they're a little too Oprah for
my cynical tastes (who needs a commemorative coffee mug fer
I have a Hysterectomy scheduled for May 25, 2004 and I am so
scared! I don't know if I'm doing the right thing and think I may
back out of the surgery. I would really appreciate getting any
advice. I am 39, have had one ovary removed due to a huge cyst.
Have been diagonosed with Adenomyosis. I had to have two blood
transfusions 3yrs ago due to severe Aneamia. Have been taking
1000mg of iron per day, and when I stopped taking it, became
aneamic again. Monthly bleeding is getting heavier and
heavier.My insurance runs out in June. I thought it would be
best to get this taken care of while I still have good coverage.
I trust my doctor, she says this problem will only get worse
with time. I just keep reading so much negative stuff about
unneccessary hysterectomy surgery, it's so confusing. I don't
have too much time. I got a second opinion, but felt the doctor
was trying to give me a sales pitch, said I could try ablation
and if that didn't work get a hysterectomy done (all before June
30th when insurance runs out!) Other options I am aware of may
help but nothing can stop the adenomyosis from progressing. My
doctor says my hormones won't be affected because I still have
one ovary, but I keep reading different info. on the internet.
Should I beat around the bush, orjust get it done. I just don't
know what to do. Any advice would help greatly, Thanks.
I had a hysterectomy (still have my ovaries) about 5 years ago.
While there is one side effect which is hard for me to adjust to
(your uterus contracts/vibrates during orgasisms and when its
missing there's definitely a diminishing of how an orgasism
feels) I would still do it again. My bleeding/flooding was so
out of control that I was sitting on plastic at home and wearing
Depends at work for security. I also was very anemic. My quality
of life was SO bad - didn't want to socialize/travel because of
bleeding concerns, felt tired and weak, etc. and of course with
such heavy bleeding for periods of up to 3 weeks (with surprise
visits in between) my sex life was in the pits anyway. I was in
my early 40's, had had all the children I was planning to have,
hormone therapy wasn't working, and was told by my OB whom I
trusted that while I could try some more alternative
surgery/treatments, it really would just buy time (didn't try
holistic treatments because quite frankly by the time I had my
hysterectomy I just wanted the bleeding to STOP NOW - my life
was truly miserable and I had tried alternative treatments for
about a year and 1/2 without real results). I've not gone into
menapause as far as I know (or very early stages anyway) and
truly would do it again.
By the way, talk to your doctor to see if you are a candidate
for a vaginal hysterectomy (your uterus is taken out through
your birth canal leaving you with NO incisions.)
anonymous for privacy
I don't have first hand experience, but just had a conversation
with a friend at work about this last week, who was telling me
how she had to have a hysterectomy. I do have similar symptoms -
an ovarian cyst that needs to come out, and also unrelated non-
stop bleeding, which is finally being treated in a way that
seems to work, with Progesterone. But my friend at work had the
non-stop bleeding from a uterine tumor, and did have to have a
hysterectomy several years ago. She said it was such a relief
to have the bleeding stop, and she felt so much better with the
problem solved (and didn't have to use birth control anymore!).
She has never had to take hormones, since (I assume) her ovaries
are still there. She seemed to bes very glad she had it done.
Some male doctor apparently asked her if it made her feel ''less
of a woman'' not to have a uterus, and she very vehemently
said ''no way'' (or that's what she said to me).
Hope this helps you not worry so much.
It's too bad it's so scary for women to talk to each other about
such things. When you finally mention things like this, they
seem to be pretty common problems. I wonder if there are
I hear how scared you are and how difficult it must be to make
this decision, especially with the time crunch. I think a third
opinion might be worthwhile. Also, your MD is partially correct
that your ovary will continue to secrete hormones, however the
uterus is more than just the recipient of hormonal messengers
(as it is often portrayed) . . . it also PRODUCES hormones and
other substances itself. In other words, it is more than just
an empty sack. Not that this means you shouldn't go through
with it, but I think you need more information. PLEASE, if you
have the time, get a copy of ''Woman: An Intimate Geography'' by
Natalie Angier and read Chapters 5 & 6. It is neither pro nor
con hysterectomy, but it will give you (in a very readable and
enjoyable style) a summary of the latest research on the biology
of uterus. Good luck.
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