Re: Endo and Hysterectomy
From: D (anonymous@obgyn.net)
Mon Feb 26 17:07:30 2007
It's a really sad thing, but a lot of doctors are poorly informed about
endo and this happens to way too many women. Your doctor probably
believes, as too many still do, that without estrogen from your ovaries
the endo will starve and die off. Endo makes it's own estrogen, it
doesn't need your ovaries to keep growing. That also doesn't explain
why they would remove a healthy uterus, and I don't know the thinking
behind that - anyone else know? I imagine they figure that without
ovaries you won't really be using it for anything anyway? They may also
suspect there is a problem in the uterus, like adenomyosis. The only
way to test for adenomyosis is to do a hysterectomy and biopsy the
uterus after it's removed - the test is the treatment. (Adenomyosis is
like endo embedded in the muscle wall of the uterus) Sometimes
adenomyosis shows up on MRI or ultrasound, so I think it's definitely
worth having those tests done if it is suspected - but they are NOT
conclusive tests.
I'm so sorry you've been through so much, but do know that finding a
specialist who can excise the endo that is left gives you a pretty good
chance of getting relief!
At Mon, 26 Feb 2007, Julie wrote:
>
>Wow...I think I am going to have a breakdown. I cannot believe that I
>can still have endo. Why on earth did my doctor suggest such a radical
>surgery then? I am in shock right now. I just wanted to say thank you
>though for the note and the links. I just can't believe this
>
>At Sun, 25 Feb 2007, D wrote:
>>
>>Hi Julie,
>>
>>I'm really sorry to tell you, but yes, as you suspected you can have
>>endo return after a hysterectomy. I think your best bet is to get a
>>second opinion with an endo specialist who can thoroughly remove the
>>disease by excision. There's a link to the "endodocs" yahoo group at
>>the bottom of this message, it's a good place to look for a doctor. The
>>other group linked to is another endo support group that may also be
>>helpful - there are a lot of knowledgeable women in there.
>>
>>At Sun, 25 Feb 2007, Julie wrote:
>>>
>>>I am new to the board, but have a question. I have suffered with endo
>>>since I was probably 16 yrs old. I wasn't diagnosed until trying to get
>>>pregnant in 1999. I had my first lap in 2000 and had stage iv endo.
>>>Doctor removed and we tried again to have a baby. After a while we
>>>found that our doctor wasn't having good results in IVF, so we went to
>>>another doctor. He did some blood work and found that my "eggs" were
>>>too old to conceive. He also said that my endo is probably back as
>>>well. This was one year later. Had another lap and endo all over. The
>>>doctor said he went through and got the "roots" as well and should be
>>>good to go. We did IVF with donor and have twins now.
>>>
>>>I know the symptoms of endo, so when I felt them coming back last year,
>>>I went back to the doctor (same doctor) and said I am having alot of
>>>pelvic pain and pain on my lower right side and asked "is my endo back"
>>>and he said that he didn't think so. I asked if we could do another lap
>>>and he kind of said it probably wasn't the endo and the lap would only
>>>be a "temporary fix" and suggested a hysterectomy. I met with him
>>>several times that year and after what he said, I said okay to it. I
>>>should have known better...in the back of my mind I still felt that it
>>>was endo again...but I went ahead with the surgery. Right before I went
>>>under the last thing I said to my husband was "make sure you ask him if
>>>he found endo". After the surgery my husband told me "they found endo
>>>again"....I was blown away, but couldn't change anything at that point.
>>>All I thought was "okay...I will deal with this..at least I won't have
>>>it again.
>>>
>>>Unfortunately after being released from the hospital, I was unable to
>>>void at all. Long story short....I am now living with a "dead" bladder
>>>and will have to self cath myself for the rest of my life because of
>>>this surgery. I was never told of any common complications from this
>>>surgery and feel stupid for just trusting this doctor...anyway..that is
>>>another story.
>>>
>>>Okay...my main question is....can I still have endo again? After my
>>>surgery and being on the internet I found people that are suffering from
>>>endo after a hysterectomy. I had a radical hysterectomy as
>>>well...another dumb thing I did on misinformation....anyway....can I
>>>still have endo and can it come back? I will be mortified if I can. I
>>>can't tell you how sick endo made me. Throwing up, passing out, pain,
>>>etc. Please....can someone give me the answer?
>>>
>>>--
>>>Julie
>>>
>>--
>>Find an endo specialist in the ERC's EndoDocs group:
>>http://groups.yahoo.com/group/EndoDocs/
>>
>>Try an excellent endo support group:
>>http://groups.yahoo.com/group/erc/
>>
--
Find an endo specialist in the ERC's EndoDocs group:
http://groups.yahoo.com/group/EndoDocs/
Try an excellent endo support group:
http://groups.yahoo.com/group/erc/
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)