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Re: Pain Clinic telling me I am still having Endometriosis symptoms.....
From: Stephanie (anonymous@obgyn.net)
Thu Mar 26 15:12:26 2009
At Thu, 26 Mar 2009, Tanya wrote:
>I just sent you and email and actually i didnt write it but the nurse for my doctor did just say that they dont believe its Endo because i didnt respond to the Lupron or Depo or Birth Control. I do not have any children, although I hope to someday. I've been with my boyfriend about a year and half and have never been pregnant before. I live about 10-15 minutes outside of the Boston Mass area. My concern with the fact that its still Endo is because according to doctors your best chances of getting pregnant is right after surgery and although I wasnt trying, I didnt get pregnant after relations with my boyfriend or anytime after that point.
>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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