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Re: Pain Clinic telling me I am still having Endometriosis symptoms.....
From: anonymous (anonymous@obgyn.net)
Fri Mar 27 16:01:31 2009
That's ok. A lot of doctors and patients do not know this, and it's
helpful. I wish I had known years ago!!!!
At Fri, 27 Mar 2009, Tanya wrote:
>
>I agree with this. I only had it done because i was having a
>hysterectomy for endo and 5 years of battling pre cancer cells on
>cervix. I do have to say I feel great now.
>
>At Thu, 26 Mar 2009, anonymous wrote:
>>
>>For other women having this problem, look into endo experts who can
>>remove the endo w/o removing the uterosacral ligament.
>>
>>At Thu, 26 Mar 2009, Tanya wrote:
>>>
>>>Yes my pain was EXACTLY like that and until I went to Emory I didn't
>>>understand how it was possible I was taking 2 7.5 mg vicodin every 6
>>>hours by the end EVERY DAY. My ob/gyn was great but he wasn't as
>>>familiar with the uterosacreal ligment endo. I even had a urologist
>>>tell me i didn't have endo because i wouldn't still be in pain after my
>>>lupron shots. UGH This is the most painful kind of endo because it is
>>>embedded in the ligament when you are born. Do you have any children or
>>>plan on having any? Where do you live? If you would like you can also
>>>send a message to my email tjenkins_8@yahoo.com.
>>>
>>>At Wed, 25 Mar 2009, Stephanie wrote:
>>>>
>>>>At Wed, 25 Mar 2009, Tanya wrote:
>>>>>wow! the fact that you were back in pain 3 months later seems to make me feel at least a little relief that this isnt all in my head. I figured I could never feel that way since my first doctor when i was 16 told me i was crazy when in fact I had endometriosis but after having the excision surgery with another doctor last October and feeling worse in January than I was before the went to see the doctor at MGH and being told ITS NOT ENDOMETRIOSIS, i was beginning to feel like maybe he did get it all and maybe i'm wrong. I just feel like the pain is the same as in placement but the intensity is so much greater. My doctor wont prescribe me anything for the pain because as i said before he's so sure its not endo that he didn't even examine me and referred me to a muscle specialist and probably feels that I'm using the Endo as a reason to get all hopped up on pain meds but in fact I'm only trying to live a normal life. Something i've been after since I was 16 years old and have yet to achieve. Were your symptoms similiar to mine when you when to Emory?
>>>>
>>>>EXTREME PAIN WITH INTERCOURSE
>>>>EXTREME MENSTRUAL PERIODS
>>>>PAIN GREATER IN LOWER ABD THAN IN BACK BUT BACK PAIN IS A DIRECT
>>>>CORROLATION TO THE ABD PAIN
>>>>
>>>>>I had this same problem. It was only 3 months after my excision surgery
>>>>>that my endo pain was even worse than before. We Couldn't explain it so
>>>>>I did a bunch more hormone injections and pain meds for 2 years. Then
>>>>>my doc sent me to a specialist at Emory University Dr. Carla Roberts.
>>>>>After seeing her she told me that I had endo embedded in my utersacral
>>>>>ligment. She said that you really need to take that ligment out for the
>>>>>pain to ease and mine was missed on the first surgery because it is
>>>>>embedded and my other doctor was not looking for it. I was in constant
>>>>>pain. She gave me a few options but since my husband and I decided we
>>>>>weren't going to try for any more children I let her remove the ligmant
>>>>>and do a total abdominal hysterctomy because of other issues also. I
>>>>>kept both ovaries. that was sept of 2008 and after 5 years of endo pain
>>>>>I have NEVER felt better. I hope this helps
>>>>>Tanya
>>>>>
>>>>>At Wed, 25 Mar 2009, Stephanie wrote:
>>>>>>
>>>>>>At Wed, 25 Mar 2009, NWeber wrote:
>>>>>>>He stated that he excised it. He works out of MGH in Boston. Dr. Petrozza. My thoughts were he may not have gotten it all but he was so persistant that I was incorrect and that he removed it that I didnt feel I wanted to waste my time argueing a point that I wasnt going to win.... Where is the pouch of douglas located? Is it common to have Endo in that location?
>>>>>>
>>>>>>>Do you know for a fact that they did excision during your surgery? Who
>>>>>>>was the doctor who did the surgery? Sounds like to me they didnt get all
>>>>>>>the endo when they did your surgery.
>>>>>>>
>>>>>>>I would be sending your records to Dr. Redwine or the CEC for a review
>>>>>>>instead of wasting time going to a musculoskelatal doctor. They aren't
>>>>>>>going to be able to help you if its endo. It is most likely in the area
>>>>>>>of the pouch of douglas area and near your tailbone. I had that
>>>>>>>horrible before I had my surgery.
>>>>>>>
>>>>>>>At Wed, 25 Mar 2009, Stephanie wrote:
>>>>>>>>
>>>>>>>>along with some nerve issues. I went to see my "specialist" last month
>>>>>>>>complaining of increased pain and feeling absolutely aweful. He
>>>>>>>>referred me to a musculoskelatal specialist who will not see me until
>>>>>>>>middle of April because he stated it was NOT ENDO because it hasnt been
>>>>>>>>a long enough gap in time and he got it all apparently. if he got it
>>>>>>>>all then why is the pain clinic telling me a month later that endo is
>>>>>>>>partially to blame for what I am feeling?? I'm just so frustrated and
>>>>>>>>aggrivated and feel like I'm just being passed off from one doctor to
>>>>>>>>another....any thoughts? I know I should probably look into seeing a
>>>>>>>>specialist elsewhere that may be able to look deeper into this issue but
>>>>>>>>I'm trying to get some other suggestions before going ahead and doing
>>>>>>>>this.
>>>>>>>>
>>>>>>>>My symptoms are:
>>>>>>>>
>>>>>>>>Chronic lower abdomonal pain with intermittent lower back pain
>>>>>>>>Stabbing in my abd, more of an aching in my lower back
>>>>>>>>Pain extreme on sexual intercourse, so much that I've actually stopped
>>>>>>>>it
>>>>>>>>Pain extreme when menstruating as well
>>>>>>>>
>>>>>>>>This has interfered with my daily life for the past 7 yrs and I'm just
>>>>>>>>so tired of it. I just want to be healthy.
>>>>>>>>
>>>>>>>>The excision surgery was last Oct 2008 and supposedly I shouldnt still
>>>>>>>>feel like this according to my doctor....BUT THE FACT IS THAT I DO AND
>>>>>>>>I'M BEGINNING TO LOSE FAITH THAT I WILL EVER FEEL NORMAL AGAIN.:(
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