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Re: hysterectomy or not?
From: anonymous (anonymous@obgyn.net)
Tue Feb 26 15:45:09 2008
Thank you for your help. I will ask my doc tomorrow what the next step
is.
I have had surgery in July to remove the endo but Im in worse pain now
than I was then. I dont know how to be possitive with this pain all day
every day how do you others cope?
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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