Re: 3 mos post-hysterectomy chronic pain
From: Dena (anonymous@obgyn.net)
Sun Mar 3 16:37:11 2002
Mary,
I am also in the Boston area. Belle sent me a list of specialists
recently. There are a couple that I am looking into from Boston. If
you would like the information I would be happy to e-mail it to you. It
is my understanding that we cannot list doctors names on this forum.
--
Dena
dpayne4321@yahoo.com
At Sun, 3 Mar 2002, Mary wrote:
>
>Suzanne---I have a fairly similar situation --the central issue of
>removing the endo properly is my main concern. I had a partial hyst in
>May 2001 (uterus only--suspected adenomyosis). I have a long history of
>endo (I am 44). It was not diagnosed until very late and I had a lap in
>1996, which successfully removed endo and I was pain free while on
>continuous BCPs for five years. Pain returned in late 2000, but a lap
>in Jan 2001 revealed no endo lesions at all, although I was in severe
>pain. I do have fairly extensive scar tissue on colon, bladder, etc. I
>was shocked that no lesions were found. My doctor suspected adenomyosis
>but MRI did not show it (this is common). Pain was unbearable and
>constant by then and after Synarel completely relieved the pain, my
>doctor felt it must be adenomyosis. Nothing showed up on pathology
>after surgery but I was completely pain free for 10 months until last
>night. I am of course quite devastated that it has returned so quickly.
>I fought to keep my ovaries and cervix despite the risk of recurrence. I
>am now terrified of having a total hyst if pain may recur--no lesions
>were seen at surgery last May, only scar tissue. I guess scar tissue
>could cause this pain but I am afraid the doctors do not know how to get
>rid of the endo and a total hyst may not end the pain. Who did you see?
>How did you go about it? Was it through a primary doc or on your own? I
>am in the Boston area and we have terrific medical care here, but I need
>to find a new doctor who is a specialist in endo. Did your health
>insurance cover it OK? My husband has great insurance and finances are
>fine, but this could still be a time consuming, difficult issue as far
>as finding the right resources. Any thoughts will be MOST appreciated.
>Thank God you found such a great doctor!!!!
>
>Mary
>At Sun, 3 Feb 2002, anonymous wrote:
>>
>>At Fri, 2 Mar 2001, suzanne wrote:
>>>
>>>I had tah/bso for severe endo, adhesions and adenomyosis. Within 2-3
>>>months after that surgery my pain came back with a vengence. I also had
>>>severe bladder and bowel symptoms. Hysterectomy is not a cure for
>>>endometriosis, so there is a chance you may still have endometriosis in
>>>your pelvis.
>>
>>>I had surgery with an endo specialist 8 months after the tah/bso and he
>>>found a great deal of endo left in me (even though the first doc swore
>>>he got it all!).
>>>
>>>Endo was found on my bladder, ureters, colon, rectum, vagina, and broad,
>>>round and utersacral ligaments. Plus my entire peritoneum was invaded
>>>with endo. If your surgeon is not an endo specialist, he may not be
>>>familiar with the many appearances of endo, including microscopic and
>>>may have left some.
>>>
>>>The Endometriosis Sourcebook contains much information regarding
>>>endometriosis continuing after hysterectomy. Also the following website
>>>may be helpful: http://www.scmc.org/endo/html/reprint7.html
>>>
>>>It was a difficult time in my life, especially after going to the endo
>>>of the line and still be suffering. But I am happy to say I am endo
>>>free and pain free after 26 years with this disease. I only wish I had
>>>known about the endo specialists sooner.
>>>
>>>You can e-mail me anytime at living@nwlink.com
>>>
>>>--
>>>suzanne
>>>
>>>At Wed, 28 Feb 2001, anonymous wrote:
>>>>
>>>>Hello everybody,
>>>>I am 3 mos post-op TAHBSO,for uterine wall thickness endo.I also had a
>>>>prolasped sigmoid colon,cystic cervix & ovaries.My left ovary contained
>>>>a large 4cm abcess.I was re-hospitalized 7 days post-op for multiple
>>>>seroma's(fluid collections)recieved 7 days of IV antibiotics.I have been
>>>>closly followed by my surgeon,CAT scans,labwork.All but one seroma has
>>>>resolved and it is 3mm round buy 4 inches long and is located between my
>>>>bladder and rectum.I have been on oral antibiotics(leviqin)until 2 weeks
>>>>ago.
>>>>I have chronic pain(threw away pain pills..didnt help noway)in my lower
>>>>addomen,sharp,and intensed by walking,sneezing,laughing,and peeing.I
>>>>have a chronic clear vaginal discharge which cultures negative for
>>>>bacteria.I have been treated by my urologist twice this month for UTI.
>>>>My spouse and I only recently attempted intercourse and noticed that the
>>>>discharge became very heavy and I felt a sharp pain in the upper left
>>>>vagina and left side pain.I also have developed right elbow
>>>>pain,bilateral hip pain and sharp shooting pain down the backs of both
>>>>legs when i stand from a sitting posistion,sometimes I have rectal pain
>>>>as well.Sorry i have rambled,but I am really concerned,my Gyna just
>>>>keeps telling me about the same.Will see him in the morning.Is this
>>>>common so far out after surgery or has anyone else have or had the
>>>>same??? Thanx
>>>
>>I just had a hysterectomy 3 months ago for fibroid tumors and had my
>>cervix removed. I never imagined what was in store for me. I wish I
>>would have researched possible complications w/ hysterectomies more
>>thoroughly before I proceeded with it. I also had severe spasms of the
>>bladder with incontinence (which really freaked me out - because I have
>>never had bladder problems in my life) and bowel symptoms - severe
>>constipation and gas. I don't have ENDO. I had severe lower back pain
>>and pain running down my legs. The urethral incontinence and the back
>>pain stopped after I had a procedure by an anesthesiologist who put a
>>short catheder under the skin over the sacral nerves and injected it
>>with depo-medrol. The back pain and leg pain went away almost instantly
>>and has not returned and it has helped stop the urethral incontinence.
>>It appears that during a hysterectomy or other major surgery the nerves
>>in your back get traumatized and quit working until they regenerate -
>>this may take up to six months. With the depo medrol injection it
>>reduced the inflammation in the nerves in the lower back and the bladder
>>started responding again and I started regaining control. This helped
>>me, but there could be serious side effects by using depo medrol - but I
>>did not experience any problems. I still experience excessive vaginal
>>wetness and I don't know what I will do about that. I hope I have
>>offered some information.
>
>--
>Mary
>
--
Dena
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