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Adrite-N-Endo: Part deux (the latest doc update) Adrite-N-Endo: Part deux (the latest doc update)

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  #1  
Unread 04-12-2001, 06:32 PM
Adrite-N-Endo: Part deux (the latest doc update)

Howdy friends and neighbors! Here's the latest edition of the adrite/endo saga:

Saw doc X today who said that he no longer wanted to treat me. I wasn't angry. I had asked him to tell me if he didn't think he could handle my surgery. He said that I shouldn't have surgery unless I could find someone that I had 100% confidence in. I told Dr.X at this point that wasn't possible, but that I'd have to take my chances. He still firmly believes that my pelvic pain is from an ovarian remnant (due to low FSH levels). He is sending me to another doctor I've never seen. He says that he doesn't want my care to be "fragmented" so I should see just this doctor and one other for a third opinion. Translation:He's tired of dealing with me

But, I appreciate his honesty in just telling me to get lost instead of having me come back every two weeks until I die or the moon falls from the sky which ever comes first while showing no improvement in this excruciating pain. I couldn't even tolerate the exam today...not at all! Pain medication isn't doing a whole lot to help (yes I finally got some for that...now that I can't even make it to work -- uugggghhh).

I talked to Dr.Cook (whom I mentioned before) on the phone. He reviewed all my records this morning, and when I called asked me to call back because he wasn't finished going over them (he read my chart! he read my chart! he actually READ my chart!). So, I called back and we talked for almost an hour. He asked me to describe the pain and anything that I thought was "suspicious". I told him how it gets alot worse with exercise or just by being "up" and how emptying my bladder or bm's just kill me and how my scars really hurt (yes I know that sounds wierd, but he didn't think so), and how when I use vagifem I sometimes get ALOT more tender to the point of not being able to be touched. I also told him that Dr.X thought it was an ovarian remnant and should be off hrt for 3 weeks or 8 weeks to find the thing.

He said (are you ready now) ?:

It may very well be an ovarian remnant because the chances look very good from my surgical reports,but I wouldn't have to go off hrt to find it. He said that endometriosis is considered to be a systemic disease, and that it sometimes requries total body treatment. Not just a one time surgery, but testing for sensitivity to certain hormones. He also said (I saw this over on the HJ this morning as well) that you can have hormone "allergies" which are not allergies per sey, but a hightened sensitivity to certain hormones and that they could test for that and then work to decrease your sensitivity by using "drops" under your toungue.

He reviewed all my surgical reports and went thru each one of them. He said that the one where I had my ovary removed could have caused an ovarian remnant, but more importantly the endo was never removed, and had been "embolized" or "bipolarized" and that this alone could cause some serious scarring to my insides. He went on to say that he felt you had to cut down to the healthy tissue to get rid of the pain (thru what is sometimes leather-like scarring). He said that he'd treated patients who'd had up to 30 surgeries for endo plus and minus tah/bso. He went back and said that the surgery I had in 1991 seemed the most thourough (I already knew that, she was the best doc I've ever had! But regretfully she retired! I had almost 3 years of pain relief!!!!) He said that the surgeon who did my tah/bso may have left some information out as he didn't see where she'd even attempted to remove the endo implants that were on my bowel, uterus, pelvic cavity, and bladder. I said that I knew that and had discussed it with her before surgery and she said she would remove it, then didn't and I found out about it and asked her why and she said that the "text books don't dictate that you do that". He said, "That's just WRONG" and went on to explain why (in detail). He said, "If you had cancer would she have removed a healthy uterus and left the cancer and still expect you to get better!". I was exhonorated. Finally, someone understood.

I said, "After my hyst I felt like I just fell apart. I still had pelvic pain and all this new stuff to deal with". He said, "No doubt".

I asked him what they did to prevent adhesions and he said that he did use intercede and also good surgical techniques plus a second look laparascopy a few weeks later to remove any adhesions as they were beginning to form.

I go see Dr. Martin next week....he's in my home state and it would be cheaper, but at this point, It's JUST a matter of money. Yeah Dr. Cook!!!!

------------ me whining---------------------------
I'm not sure what to do...let Dr.Cook do it and pay what is a good deal of money to me (if mortgaging my house again would help...I would). See this new doc, start over and take my chances. Beg Dr X. to try, try again. See Dr. Martin and take my chances (Dr X seemed to think he'd want to do surgery right then and there before I even come home THE day of the visit !) or stick my head in the oven

all this on top of that nasty menopause crap is driving me insane...and it's a short trip....

Ideas, opinions, comments, and PRAYERS are appreciated.
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  #2  
Unread 04-12-2001, 06:55 PM
Adrite-N-Endo: Part deux (the latest doc update)

{{Angie}},
I'm still prayin for you! Dr Cook sounds very impressive. I have read GOOD things about the second look Lap to take down the new Adhesions I'm sure you will be speaking to Dr Martin also, so I think I would go from there after that consult! Your a very strong willed gal and I know you will make the right decision for you
  #3  
Unread 04-12-2001, 07:17 PM
{{{{{{{{{angie}}}}}}}

No matter what they did to you it didn`t hamper your sense of humor! That will go a long way to getting through this new maze.
I like Dr. Cook from all you have said. Now...if he suggested Dr. Martin, he must trust him. It sure won`t hurt to see him.

Whatever you decide...my prayers are with you. If you need a hug, you just look me up!

{{{{{{{{{{big hugs!}}}}}}}}}}}}

kaatie
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  #4  
Unread 04-12-2001, 08:41 PM
(((((Angie))))))

Angie,
I am praying for you. Did Dr. Cook recommend Dr. Martin or did your current doctor "Dr. X" recommend him?
I am in shock that your doc who did your TAH/BSO did not remove all your endo implants. Mine went in with the laser at the ready--but, I still have my ovaries, and know that my endo MAY return. I feel so terrible for you that you have been thru so much pain and so much h*** over this. My endo/adeno suddenly seems like a walk in the park!

I wish your insurance would cover Dr. Cook!

(((((hugs))))))) and all my prayers,
Sunny
  #5  
Unread 04-12-2001, 10:11 PM
Adrite-N-Endo: Part deux (the latest doc update)

Angie,
Your Doc Cook sounds like a hot ticket. I am amazed/mortified that your original doc didn't take many measures to rid you of your problem...but I am so happy for you that you've found someone who "cares" and is taking you seriously.

After reading about your story, I'm thinking that sooo many of your problems could have been averted if someone had paid more attention/really listened to you.

Why do women suffer needlessly?....... MEN!

(kidding, really, I think).

With lots of positive energy sent your way,

Sheila
  #6  
Unread 04-13-2001, 07:21 AM
Adrite-N-Endo: Part deux (the latest doc update)

Angie,

Dr. Cook sounds very knowledgeable. Makes you wish that magic wands came with these crowns of ours! Is there any way around the insurance issue? Some plans allow for doctors they don't have, if there is a referral from your current doctor and the need for the services cannot be met by a doctor within their plan. Many plans do not have "Specialists for a particular diagnosis" just "Specialists in a broad spectrum, i.e. OB/GYN" Keep your appt. with the new doctor, but discuss all the information you have received from Dr. Cook. Maybe this new doctor would be willing to discuss the findings with Dr. Cook. Keep us updated! I will continue praying for you!
  #7  
Unread 04-13-2001, 07:25 AM
Thanks guys...

Yuppers...arrogance is a TERRIBLE thing and ignorance is even worse...I've suffered at the hands of both.

I found Dr. Cook from a friend(s) of mine who's spoken to him/gotten treatment from him. I found Dr. Martin thru the endometriosis association web site. Dr. X seems to think he's wonderful and that I'll just love him...but I've heard some rumblings from others that he's "all talk and no walk". If anyone's had any experience with him...give me a shout! I think Dr. X was just glad to get rid of me. Can't say I blame him...I can be quite...shall we say...."determined"?

Keeps those good thoughts and prayers coming! I'm terrified! And yet relieved all at the same time....
  #8  
Unread 04-17-2001, 10:05 PM
Adrite-N-Endo: Part deux (the latest doc update)

Bless your heart! I am so sorry for the suffering that you have been through. I will keep you in my prayers. Sounds like brighter days are headed your way though. Maybe doctor Martin would be interested in consulting with Dr. Cook? Sometimes you can find doctors who will put their pride away long enough to help a patient. It certainly would be cheaper than having to go to CA. It might be worth a try to ask if both of them would be willing. In the meantime, remember that there are alot of prayers being sent your way.
  #9  
Unread 04-17-2001, 10:28 PM
Wish me luck...

I see Dr. M tomorrow -- I'll let you all know what he says...<<<jitters!>>>
  #10  
Unread 04-17-2001, 10:40 PM
Adrite...

Good luck, many prayers and.....

{{{{{{{{{{big hugs}}}}}}}}}}}

kaatie
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