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Re: hysterectomy or not?
From: anon1 (anonymous@obgyn.net)
Tue Feb 26 18:19:55 2008
Thanks Sherri for sharing your story! I can totally relate to what you
are going through. Same deal here, total hysterectomy and removal of
ovaries almost 3 years ago and still having pelvic pain, although not as
bad as the fibromyalgia and osteoporosis that the loss of my ovarian
hormones triggered. And that is even with hrt. I can't imagine how you
carry on with an 8 year old daughter. My heart goes out to you! It
takes courage for women like us to share our stories because we want
nothing more than to give others hope and encouragement, but women also
need to know there are two sides to hysterectomy and not everyone has a
happy ending. I too wish I had taken the time to find a specialist
skilled in excision surgery. At the time it seemed impossible with my
insurance turning me down and not having the money, but calculating all
the out of pocket expenses I have spent since my hysterectomy dealing
with tests, physical therapy, drugs, hormones, and on and on I could
have found a way.
To the original poster, definitely take your time, do as much research
as you can, seek out multiple opinions, and do not make a decision out
of desperation or someone elses best interest. Good luck to everyone!
At Tue, 26 Feb 2008, Sherri wrote:
>
>Hi there! I'm sorry that you are having such a hard time, and trust me,
>I KNOW exactly what you're going through. I was diagnosed with endo
>about 14 years ago, and I have had 6 surgeries to remove endo and
>adhesions. I did have a total abdominal hysterectomy at the age of 27,
>and I am here to tell you that, for me, it did nothing for the pain I
>was having. I am still in just as much pain, if not more, than before
>the hyst. The only thing that was positive about it at all is that I no
>longer have periods, so in that sense it has gotten better. Before the
>hyst. I was bleeding all the time, with no rhyme or reason to it. I do
>not take any hormone replacement, so I have hot flashes and night sweats
>daily, along with the pain I'm still having. My pain was always mainly
>on the lower right-side of my abdomen and pelvis, and it is still there!
>Now, the doctors are telling me that some of the pain may be from nerve
>damage due to all the surgeries I've had. I also have IC. In my case,
>the doctors can't decide where my pain is coming from, endo, IC, or the
>nerve damage, but that doesn't really matter. What matters is that I am
>in severe pain every single day, and it's not going away! From the
>minute I open my eyes in the morning, I am fighting this damn pain, and
>sadly, most days, the
>pain wins. I know that you have heard this before, but please listen
>again, Hysterectomy is NOT the answer for endo!! If you think it's hard
>now trying to get doctors and others to accept what you are telling
>them, just try to do it once they have removed "everything". It's
>absoloutely maddening!! Every doctor I see now, really treats me like an
>addict, and they all say the same things. Example, If you've had a
>hyst., there is NO WAY you can still be in pain...maybe you pulled a
>muscle. PUH-LEEZE!! I currently go to a pain management doctor who has
>me on strong narcotics daily, and I still feel the pain. A hysterectomy
>truly does change your body, and all the changes are not good. Besides
>the continued pain, hot flashes and night sweats, there's the bone loss,
>sex is way more painful than ever due to the lack of estrogen which
>translates to lack of moisture, the vagina actually begins to atrophy,
>(which means-literally-shrinks and hardens inside), the vaginal skin
>thins and tears very easily during sex, I can't remember anything (have
>been told this is from the menopause)and lots of other problems that I
>wouldn't wish on my worst enemy. Throughout the day, I go from having
>hot-flashes and wanting to stand in the freezer, to freezing and
>wrapping up in jackets, blankets, etc. My energy level is extremely
>low, and no matter what I do, I can't seem to make it through a full day
>without a nap, crying spell, or biting someone's head off. It honestly
>does mess with my emotions daily! I am 30 years old and I have an 8 year
>old daughter, and I don't have the energy that my 56 year old mother
>has! I went through menopause before my mom!! It's a lonely place to be
>in, since naturally none of my friends can relate to what I go through.
>
>I really do not mean to sound so negative, but I want every woman who
>thinks of hysterectomy to think again. It is not an answer! I am truly
>sorry that you are dealing with this disease! Excision surgery is
>supposed to be the best move to make at this time, so maybe you could
>try to have total excision surgery first. If I could do it all again, I
>would definately have excision surgery with one of the endo specialists,
>and then try to control the endo as much as possible with diet. For me,
>I'm afraid it is too late for any of those options to be helpful. Please
>don't make the same mistakes I made! If the doctor you're with now does
>not know what is best for you to try next, find another doc. I KNOW
>that doing that is not as easy as it sounds, but you have to fight these
>docs and learn as much as possible about endo and any potential
>treatments for it. I wish you the best of luck and feel free to e-mail
>me privately if you want. Good luck!!
>
>--
>Sherri :)
>
>At Tue, 26 Feb 2008, Debbie wrote:
>>
>>Hello. I am sorry that you are in so much pain. I urge you to try
>>other avenues than hysterectomy, as hysterectomy does not only not cure
>>Endo, it can be detrimental to your health and cannot be reversed. When
>>you say you are sticking to your diet what do you mean exactly? Are you
>>following a specific way of eating? Have you been tested for food
>>intolerances? Many women sometimes think they are sticking to a healthy
>>diet but don't realize just how many things that we should be avoiding
>>are creeping into everyday foods. It may be that you are not quite
>>eating the right things and so are triggering pain. Also, when your boy
>>is sick, your digestive system is not working well, and so you are not
>>absorbing nutrients. Have you had excision surgery? Having the disease
>>removed from your body can make a lot of difference in the way you feel.
>>Hysterectomy is NOT the answer. I urge you to read the book
>>"Endometriosis - a Key to Healing Through Nutrition" by
>>Dian-Shepperson-Mills. Also, have a look round my website as you may
>>find of the information there useful.
>>
>>--
>>Debbie
>>=+=+=+http://www.angryuterus.com
>>
>>At Tue, 26 Feb 2008, anonymous wrote:
>>>
>>>Im in terrible pain worse than before I had my last lap surgery. I dont
>>>know what to do next hysterectomy??? what???? I stick to my diet, I get
>>>exercise I dont know, Im getting tired of waking up and Im in pain right
>>>away. Has anyone here had a hysterectomy because of endo pain and did
>>>it make the pain go away? I go to my doc tomorrow maybe he will shine a
>>>light in my dark tunnel. Anyone any suggestions for me?
>>
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