ENDO Messages for June, 2007: thank you & thank God for all of you, I'm so scared

thank you & thank God for all of you, I'm so scared

From: andrea (anonymous@obgyn.net)
Sat Jun 23 23:06:05 2007

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In reply to: Lynn: "Re: I got some bad news, now I don't know what to do..."
Next in thread: Elisa: "Re: thank you & thank God for all of you, I'm so scared"
Reply: Elisa: "Re: thank you & thank God for all of you, I'm so scared"

I have been to 10 different OBGYN's in the last 10 years, (but never found anyone I trusted to do a surgery) tried all kinds of pills and now I am seeing a great specialist. He knows Dr. Redwine very well (the specialist everyone talks about on here and says is awesome) I have had ultrasounds before, but this one was done inside my vagina and it was some new high-tech machine I had never seen before. The instrument they said emits ultrasound and light waves that bounce off your organs to show more and I guess the ultrasound is supposed to just go through the walls of your uterus unless there is a blockage of some kind and thats what they said I had. The doctor said if the light waves don't go all the way through the walls smoothly, then there's most likely adenomyosis. (they would have to do a needle biopsy to be 100% sure) which I may have them do with the laparscopy to make sure.

The sonographer was also trying to move my ovaries around to get different views, and they were immobile, wouldn't move at all. This is the second specialist I've talked to, Dr. Dulemba, and he is supposed to be one of the best in TX. I feel good in his hands... It's just now.....do I get the surgery, spend all that money knowing NOW that he for sure can't remove all the endo? He said the pain COULD be gone after, or it could stay the same. He leaves a morphine pump, with tubes in your incisions for 2 days after surgery - has anyone had that?

I could tell he was frustrated that I was so adamant about NOT even trying Lupron, but that to me is a last resort, like chemo is with cancer. I don't think something that has the potential to make you so extremely sick should be used unless your life is in danger. He told me Dr. Redwine (in Oregon) is totally against Lupron....I would be curious to get his opinion on how to deal with the adenomyosis.

Should I still take the risk of surgery? Or take narcotics for 3 days a month forever? I'm scared surgery could just create more problems for me. If I was married it would be another story. Having someone to help me and have 2 incomes, but I worry about being able to support myself in the future if I don't get something done NOW. It's hard for me to work enough already. I am only able to work part-time because my pain interferes. If I had a husband, I would just take my pain pills 2-3 days a month like I do and I think I could cope with that just fine. My last boyfriend dumped me a year ago because every time we would try to make plans, somehow my periods would interfere and I think he just got sick of it.

I've been dating someone new now for 3 months and so far, he is the sweetest, most understanding man I have ever met about all this crap I deal with. He has taken me to my doctor appts, and rubs my back when I have cramps. I hope and pray that he will stay by my side and help me through all of this, no matter what I decide.

At Sat, 23 Jun 2007, Lynn wrote: >
>Ultrasounds can be tricky and sometimes it all depends on the tech and
>the reader - the one thing I am very confused about is - and many
>radiologists and doctors have told me they can not see adhesions on an
>ultrasound - I am surprised that they have not suggested an MRI (and
>even mri can not tell adhesions either). I had an ultrasound done and
>the report stated I had a hard mass on my ovary that could be
>endometroma or a cancerous tumor - had another ultrasound 1 week later
>it was clear - please get a second opinon as well as an MRI- also I had
>my uterus removed 9 years ago and have been through a great deal with
>endo - the only way to determine adenomosis is through a pathology
>report - Please get a copy of the ultrasound as well as the written
>report - request an mri with and without contrast - think positive - I
>also strongly recommend due to your age and not already having children
>find a good reproductive endocrinologist - they deal with this all the
>time and are excellent at preserving organs for fertility.
>Your in my prayers -
>
>At Sat, 23 Jun 2007, andrea wrote:
>>
>>I can't stop crying.......Thursday I went in for an ultrasound and they
>>found Adenomyasis (Endo deep inside my uterine wall) and the doctor said
>>this can't be reached or removed with laparscopic tools during surgery.
>>He said the only way to get that kind of endo is to take Lupron to
>>shrink it and your body will absorb it naturally. The doctor also said
>>there is massive lesions around my ovaries and probably my bowels too.
>>For all of you who have read my posts, you know I am totally against
>>Lupron and scared to death of it. Now, I am thinking....do i get the
>>surgery at all??? My insurance only pays half and the cost is $25,000!
>>He said even if he got it all, but NOT the adenomyasis, I could still
>>have the same pain I have now.
>>
>>I'm wondering now if a hysterectomy would get rid of the adenomyasis? I
>>don't have kids, but would be willing to give up my uterus if I could
>>just be pain free. I would rather do that than take Lupron too. But, I
>>am wondering what your body feels like without a uterus. I would keep
>>my ovaries. But I hear that your organs fall, and your insides feel
>>different after a hysterectomy. Would sex feel the same? I have all
>>these questions. Please give me some advice if you know about
>>hysterectomies....I think that may be my only option now.

Next message: Elisa: "Re: thank you & thank God for all of you, I'm so scared"
Previous message: lori: "ovary romoval leads to pre-mature death in reproducitve women"
In reply to: Lynn: "Re: I got some bad news, now I don't know what to do..."
Next in thread: Elisa: "Re: thank you & thank God for all of you, I'm so scared"
Reply: Elisa: "Re: thank you & thank God for all of you, I'm so scared"

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