Re: To all with ENDO after HYSTERECTOMY....(Kathy)
From: Lisa (anonymous@obgyn.net)
Sat Sep 29 06:06:35 2007
I had my lap done last Friday to remove any endo on my colon (still had
cyclical issues that affected bowels - possible colon resection needed).
As previously posted, I had total hyst and have been on HRT's for 4
years now after FSH levels were tested as rock bottom. Goods news was
no endo to be found....none had grown back and no new scar tissue or
adhesions. However still have the cyclical pain (just arrived this
week). Both OBGYN and COLON Dr did the lap and together they looked at
everything in there....all clean. Just don't understand what goes on in
there....maybe never will. It is good to know that I can take the HRT
(Estratest HS)which eleviates all those other irritating hormonal issues
and at the same time didn't cause new endo growth.
Still doesn't explain the cyclical nature of the pain....and still
trying to deal with the lymphedema. I KNOW there has got to be a
connection! Thanks for the links...I'll check these out. :)
--
Lisa S.
At Thu, 23 Aug 2007, deirdre wrote:
>
>I think I have lymphodema...
>
>please see this site for help on your problems
>
>http://health.groups.yahoo.com/group/erc/
>
> http://health.groups.yahoo.com/group/EndoDocs/
>
>and read these
>
>http://www.endometriosistreatment.org/html/reprint7.html
>
>http://www.endometriosistreatment.org/html/reprint9.html
>
>At Thu, 23 Aug 2007, anonymous wrote:
>>
>>At Sun, 29 Jul 2007, dorothy wrote:
>>>
>>>At Sun, 20 Aug 2000, Peggy wrote:
>>>>
>>>>At Sun, 20 Aug 2000, Kathy wrote:
>>>>>
>>>>>Good morning all,
>>>>>
>>>>>I've had a total hyst 10 yrs ago, and recurrent endo is back with a
>>>>>vengance. Can anyone who has been through this let me know how and what
>>>>>they are doing? Was your next endo surgery successful? Are you on any
>>>>>new meds? Did your Dr. laser or cut the disease out?
>>>>>I have a pre-op consult on tues, and I am nervous to go through this
>>>>>stuff again, but I would like to know how everyone else in my similiar
>>>>>situation is making out. Currently I have halted all my estrogen 5
>>>>>weeks ago, to try and shrink the endo tissue from the outside.
>>>>> Any comments are appreciated!!
>>>>> Kathy in Conn.
>>>>
>>>>Kathy,
>>>>
>>>>Welcome to the group, I had a total hysterectomy and both ovaries
>>>>removed and am still suffering with pain that I believe to be endo
>>>>related.With being diagnosed with endo and being on estrogen replacement
>>>>you were fighting a losing battle! Estrogen feeds endometriosis. I had
>>>>my hysterectomy and left ovary out in 4/98 and then the right ovary
>>>>removed 11/99 between these surgeries I had 2 other laporoscopies for
>>>>adhesions. It was not until the last surgery that I was daignosed with
>>>>having endo.Have your Drs. checked your hormone levels since being off
>>>>of the estrogen ? I was on HRT for 1 1/2 weeks in December but the pain
>>>>increased so much my Dr. had me discontinue taking it. I went into a
>>>>menopause state but by February all the symptoms stopped. I had my
>>>>levels checked and the FSH was 36.9 and the estradiol was 57 the fsh was
>>>>in the menopause range ,it should be over 23 but the estradiol was
>>>>abnormal it should be under 25 .I had asked about doing Lupron so my Dr.
>>>>gave it a try, Unfortunatly it did not help. For the first 3 months I
>>>>was having all the menopause symptoms again but it all stopped , Dr.
>>>>check levels and the FSH was 17 and the estradiol was 42. He
>>>>discontinued the lupron therepy .Someone on here had posted about an
>>>>aromatase inhibitor so I looked into this further and found that there
>>>>is a Dr. out in Chicago doing a study on endometriosis using an
>>>>aromatase inhibitor, I e-mailed this Dr. and he sent me a research
>>>>paper that he did,it sounds so promising that I printed it off and sent
>>>>it to my gyn and asked that he read it to see if it would pertain to me.
>>>>I saw my Dr. last Thursday and he told me that what the Dr. in Chicago
>>>>is studying is exactlly where I am at with having estrogen levels after
>>>>having had a hysterectomy.He has e-mailed this Dr. to get more
>>>>information . THe Dr. in Chicago told me that he would work with a Dr.
>>>>here, that the Dr. would have to get the treatment protocol from him.
>>>>So this is where I am at. Waiting to hear back from this Dr. If you
>>>>would like I will e-mail you the article that I have .Just let me know.
>>>>I hope that I have helped in some way. If you have any questions please
>>>>feel free to ask
>>>>
>>>>--
>>>>"FRIENDS THAT STICK TOGETHER" Peggy K.
>>>>
>>>>What lies behind us and what lies before us are tiny matters, compared to what lies within us.
>>>>
>>>>-Ralph Waldo Emerson (1803-1882)
>>>>
>>>--
>>> after my hysterectomy 2003, i've continued to experience all the "wonderful" endo
>>> symptoms without the bleeding. my gynie's answer "well, i told you a hysterectomy
>>> might not relieve your "symptoms". the usual, i don't know what to do, so i'll be
>>> dismissive. go away and suffer in silence!! anyway, the incrediable thing is that
>>> i still have all the terrible pain in my digestive systems, my low pelvic area and
>>> my bowel,sometimes on a monthly basis, it can be more severe and i hav e a brown
>>> discharge. i use panty liners quite often,four years later. and now they tell me i
>>> need to use estrogen therapy because my estrogen level is low. i terrified to do this
>>> and possibly feed my endo tissue. which i believe still thrives in parts of my
>>> body. many miscarriages, lupron injections and over doses of otc drugs later,
>>> i'm back to square one, full speed ahead into the big brick wall. what a nightmare.
>>> my only help has been occasional family and friend support and cymbalta, zoloft
>>> & wellbutrin. these are the only reasons i'm still walking this earth.
>>>
>>I had a hysterectomy 5 years ago (partial). 6 months later I had
>>surgery to remove my ovaries. Was having a major "cramp" AFTER
>>intercourse. No pain during but major pain and cramping immediately
>>after. After an ultrasound found my ovaries fused to my colon, I had
>>them removed via lap surgery. Even after all this, I continue to have
>>"monthly" pain. Very cyclical pain. Its as if I still have my uterous
>>and ovaries. The pain is severe causing me to take Lortab during that
>>time of month. 2 years after the ovaries were removed, I had another
>>lap surgery to remove scar tissue and more nodules of endo. This was
>>just last March. Almost a year to the day of the surgery, I started
>>having pain after intercourse again. This time it is several hours
>>later and am awakened with the pain. It takes a good 24 hours to
>>recover from the abdominal and back pain caused. I currently take
>>Estratest HS - very low dose. I was tested after the ovaries were
>>removed and FSH levels were rock bottom. I went cold turkey for 6
>>months but continued to have endo pain. Once I started the Estatest my
>>pain remained the same. I just went for my annual checkup and again
>>endo was the topic of discussion. I have been referred to a specialist
>>and met with him to consider lap surgery and the removal of endo that
>>most likely is on my colon and bowels. I know they will find
>>some....too much pain in that area and have never had a month without
>>pain. I am 39 years old and have suffered with endo since the first day
>>of my period. I read somewhere that women were born with endo and that
>>the hormones activate it. I believe that. I remember my first period
>>was HORRIBLE. I was put on birthcontrol pills later in HS because I has
>>such violent episodes...nausea, diarehha, vomitting...the works. Another
>>thing that I find curious is that I also developed lymphadema around the
>>same time as my first period. Both are autoimmune diseases. Something
>>tells me that endo is responsible for the lymphadema. Has anyone ever
>>made a connection between endo and lymphadema?
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