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Re: Comparing pain
From: Abigail (anonymous@obgyn.net)
Sun Jul 24 11:53:36 2005
Thank you for clarifying that... I will reread the report, This board
really does give one hope. I appreciate all of you & the time you give
to this board. I am thrilled you are doing so well. Keep up with the
wonderful health & attitude, you deserve it after all these years!
At Sun, 24 Jul 2005, anonymous wrote:
>
>The doctor can excise the endo using a laser, so make sure you find out
>if she excised it with a laser or cauterized it with a laser before you
>get upset. I had my endo cauterized with a laser six years ago and had
>it excised with a laser last summer. Since the excision, I am a new
>person. I went to Dr. Albee in Atlanta to do my most recent surgery. I
>also had to have a few organs removed, but am functioning at a level I
>never thought I would ever be able to in my whole life. As for the
>pain, I had painful periods my whole life, but the 24/7 pain didn't
>start until years into my periods. I had been on bcp to help my painful
>and long periods since I was 15, but when the pain went from period time
>only to 24/7, I went back to my doctor. It took me a year of calling
>every week before he finally believed that I was in pain and gave me an
>appointment. He did the lap to shut me up. I had never heard of endo.
>He said he was 100% certain that I didn't have it, but I had stage IV.
>He apologized for ever after my surgery, but the surgery didn't help
>any. After several more years of suffering, and I was on continuous
>bcp!, I finally made an appt with Dr. Albee. After being in bed too
>sick and in too much pain to enjoy life for all of my teen years and the
>first half of my 20's, I am finally able to work 40+ hours a week and go
>to school for my master's degree. It is like I am a new person. Still
>in some pain, mind you, but not debilitating pain. Seeing a specialist
>is at least worth looking in to. And it is definitely worth the cost.
>
>God Bless!
>
><><
>
>At Sat, 23 Jul 2005, Abigail wrote:
>>
>>Do you know how important that info is? I have been reading it must be
>>excised, I thought we had had it done. Nope, she used a laser, She told
>>us plain as day. I really don't ever remember reading that on the web
>>anywhere. I assumed it was the same thing.
>>As I wrote on the last remark to Jessica, I found Morgantown's Dr.
>>Harmon thru pelvicpain.org & tho it felt like I was pulling a name out
>>of the hat... He was very sympathetic, & prescribed the new Danazol.
>>For info on this drug, google: "Janicki danazol" It is about the only
>>article I found. but there were A couple of trials out of Japan.
>>Good luck with New Dr., Lap & LUNA, Let me know, how things go, & you're
>>in my prayers.
>>Abigail
>>At Fri, 22 Jul 2005, Terrya wrote:
>>>
>>>The first lasps only helped for about a month and half after each
>>>one...but this was before I saw and endo specialist. Now that i have
>>>finally found one and seen my medical records, I can see that my regular
>>>OBGYN had no idea how to treat my case. He was cauterizing the endo. He
>>>told me he was going to do this the first surgery and then the 2nd
>>>surgery he told me that he was going to laser it. But after I read the
>>>operative note, I can see that he cauterized it again. He also was
>>>supposed to do a LUNA proedure, which he did not do or did not mention
>>>in the operative report. The endo speciailist that I have recently
>>>found in my area has said that you HAVE to cut or excise the endo out,
>>>not just try to burn it away, which is why I probably haven't had much
>>>relief from the surgeries. So if she does get surgery make sure they
>>>are going to excise the endo. Also this is supposed to decrease the
>>>likelihood or severity of adhesions after surgery. Cauterizing causes
>>>many adhesions, which I think is not a BIG part of my chronic pain
>>>problem. I have also tried Lupron, anti-depresants, and narotics, as
>>>well as continuous BCPs for the pain. None of this has helped me. If
>>>your daughter is seeing a regular OBGYN for endo...get a 2nd opinion
>>>ASAP. Research as much as you can to find an endo specialist. The
>>>advisors to the endometriosis association are a good place to start.
>>>This is where my new doctor is from. I'm sure there is someone in your
>>>area or not too far away. i have to drive about an hour to see my doc
>>>and i live in a major metropolitan area, but i think it is worth the
>>>trip. Regular docs just don't understand this disease. You have to
>>>have somebody who specializes in it. You can also post a message on
>>>here and see if somebody has a doc they would refer you to in your area.
>>>I found my doc through an online support group and just askin people.
>>>Please feel free to email me offline at thafinestfemale@yahoo.com if you
>>>have any more questions or think i can help more. Wishing your daugter
>>>pain free days...Terrya
>>>
>>>At Fri, 22 Jul 2005, Abigail wrote:
>>>>
>>>>Thank you, You are the first person to say pain came on fast & hard &
>>>>everyday. Now did your laps help at all?
>>>>They have put my daughter on the danazol vaginal suppository. It has
>>>>only been a week & a half. We are waiting.
>>>>I do believe her. I can see it in the way she walks, in her eyes. It
>>>>is killing me.
>>>>Abigail
>>>>
>>>>At Fri, 22 Jul 2005, Terrya wrote:
>>>>>
>>>>>Actually this was my situation. I was having pain daily for 2 years but
>>>>>did not have isnurance to go to the doctor to really find out what it
>>>>>was. It was worse on the left side and hurt really badly when I walked.
>>>>>I was about 19 when it started. Now I am 23. I was diagnosed last June
>>>>>and have had 2 laparoscopic surgeries since then and am about to have
>>>>>another one. Please believe your daughter when she tells u she is in
>>>>>constant pain because I'm sure her pain is real. It doesn't matter how
>>>>>much endo a person has, there is no correlation between the amount of
>>>>>endo and the amount of pain. I hope your daughter finds something to
>>>>>help her feel better.
>>>>>
>>>>>At Fri, 22 Jul 2005, Abigail wrote:
>>>>>>
>>>>>>My daughter was diagnosed with endo fairly quickly. We have tried a few
>>>>>>things.
>>>>>>But.... I was wondering..
>>>>>>Her pain came on in Sept 2003. It came on hard & every day. There was
>>>>>>no starting with pain during her period, & building up to everyday. It
>>>>>>was everyday from the git go.
>>>>>>She had a lap...One dot of endo & 4 adhesions...No pain relief.
>>>>>>She depo-provera 6 months... no pain relief.
>>>>>>She did have something (hernia like) pop out & go back in ...Diagnosed
>>>>>>as no hernia. CT.. no hernia
>>>>>>
>>>>>>Does this sound like anyone else's endo? Pain every day from the
>>>>>>beginning?
>>>>>>Thank you, for your time.
>>>>>>Abigail
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