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Re: Please help if you can
From: Alyson (anonymous@obgyn.net)
Sun Feb 11 10:57:10 2007
Christy,
I would hesitate to have this same guy remove your endo unless he has a
really good reason for why he didn't do it before. Laser ablation is
certainly better than electro cautery, but most specialists use excision
to remove it most effectively (actually cutting with a laser or scalpel
as opposed to burning it off). A specialist is also usually well
trained in recognizing endo in all of its forms. It isn't necessarily
always obvious to spot. So, I think you really want to consider surgery
with someone who is very experienced with recognizing and removing endo.
It isn't uncommon to have the surgery and then follow that up with some
type of hormone treatment aimed at suppressing your cycles so as to
hopefully slow down the possibility of the endo returning. (The major
excision specialists in the country believe their method is so effective
that they have a low percentage of recurrence)
So, definitely find out why he hasn't removed the endo and still seek a
second opinion with another doc (preferably a very experienced one).
Keep reading up on this forum. Its probably the best education you can
find!
Alyson
At Sun, 11 Feb 2007, Christy wrote:
>
>At Sat, 10 Feb 2007, Alyson wrote
>>
>>Christy,
>>I actually find it extremely weird that in three surgeries your endo has
>>not been removed. One diagnostic lap with a biopsy of suspected endo
>>implants should be ample for diagnosis. I can't for the life of me
>>figure out why a doctor would open you up a second and third time just
>>to look around and take pictures unless he does not feel that he is a
>>skilled enough surgeon to remove your endo. The treatments you've
>>described are typical of endo treatment in that the whole idea is to
>>suppress your cycles to prevent the endometriosis from causing you pain
>>and advancing. Sometimes a doctor will perform a strictly diagnostic
>>lap the first time just to look and see what is going on and then give
>>you your options (further surgery to remove the endo either with him or
>>a specialist, or hormone treatment).
>>I really think you should keep your appointment for the IC and look into
>>finding an endometriosis specialist to treat you. Alot of women find
>>themselves at the last resort of hysterectomy, but I would hate to see
>>you do that without getting a second opinion. It really sounds like you
>>might just need someone who knowd what they are doing.
>>Here is a link to a web site with a patient recommended doctor list that
>>also has links to other doctor resources:
>>http://www.geocities.com/endovictims/endodocs.html
>>
>>--
>>Alyson
>>
>>At Sat, 10 Feb 2007, Christy wrote:
>>>
>>>I have always had severe menstrual pain ever since I started my period
>>>at age 8. I thought that was just how it was supposed to be. About 5
>>>years ago I was on the Depo Provera injection for birth control and I
>>>ended up in the ER with a cyst on my ovary (I thought it was my
>>>appendix). The ER docs suggested that the Depo might have caused the
>>>cyst so I stopped getting the injections and my husband and I used only
>>>condoms for birth control. Then about three years ago my period pain
>>>became so unbearable and I can a terrible pain and pressure in my
>>>abdomen all the time. I was diagnosed with endo my laparoscopy. Since
>>>then I have been on Seasonale for 6-9 months (I forget exactly how long)
>>>Depo Lupron for 9 straight months Depo Provera for six months and now
>>>the doctor is prescribing a different birth control pill because I don't
>>>like the side effects of the Provera. He is prescribing each of these
>>>to treat the endo (I wouldn't choose to be on them just for birth
>>>control measures). I had had a total of three laparascopies for the
>>>purposes of diagnosis and "looking around" but nothing has ever been
>>>removed or lasered. I did have an ovary removed because of persistent
>>>cysts and constant terrible pain and during that operation, my Dr. took
>>>more pics of my endo and while it hasn't;t worsened, it has not improved
>>>one bit. So... here I am in terrible pain and trying not to "live" on
>>>pain meds (but sometimes I have to) and there doesn't seem to be an end
>>>in sight. Is my Dr. just stringing me along and using a trial and
>>>error method for treatment? If the shots and birth control pills aren's
>>>a cure (as I have read) and they arent helping me, then why do we just
>>>keep trying different ones? Is it helpful to have the endo lasered off?
>>>I have an appt in a few days where my Dr. is going to test me for
>>>interstitial cystitis as well. I like my Dr. but I am wondering if he
>>>may not be as well-versed in the endo world as someone else might. But
>>>I am also afraid to start with a new Dr. who might just take me down
>>>this same long road again. Plus, my Dr. is very sympathetic to my pain
>>>and I dont want to risk going to a Dr. that may not be (from some of
>>>the horror stories I have read/heard). Or does this course of treatment
>>>sound correct? At this point, I would love a hysterectomy. I am 29 and
>>>I have an 8 year old daughter-my husband and I are done having kids. If
>>>anyone out there can just help me by telling me if I need to get a new
>>>Dr. or if what he is doing sounds right. Should I have the endo
>>>lasered off? Should I push for the hysterectomy? Any help would be much
>>>appreciated!
>>
>Dear Alyson,
>
>Thanks so much for the link. I really appreciate it. I will ask why
>nothing has ever been removed at this next appt. Hopefully he will
>schedule to have it done then. Is that type of removal worth it? Or
>does it just come back so soon that its not worth the time and recovery?
>I am just tired and frustrated and looking for a new solution. Tahnks
>again!!!
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