Re: To D
From: andrea (anonymous@obgyn.net)
Wed Jul 18 15:17:01 2007
D,
Thanks for your suggestions! I do feel confident in my specialist, Dr.
Dulemba. He is supposed to be one of the best here in TX. He spent
over an hour explaining things to me and about the risks and talked to
me like I had known him for years. Just things that could go wrong
scare me so much, like having a colostomy bag if I get an infection!
Yuck!
I definately didn't feel like he was trying to talk me into anything how
most other doctors have. He did mention the option of Lupron, though,
which I told him I knew all about and wanted nothing to do with it! He
said he was also willing to just be my pain doc if I did not want
surgery right now.
He did a vaginal ultrasound on me that had different colors of light to
show what was what inside me. I had never seen an ultrasound so
detailed before. The one they do on your tummy doesn't show nearly as
much..... I had just gotten done with my period the day before my
ultrasound and he said my uterus lining was very very thick, like I was
going to have another period aleady! He said that is a real sign of
Adenomyosis. Unusual thick lining of the uterus, but of course a biopsy
would tell for sure 100%. I also had a cyst on my right ovary and my
ovaries wouldn't move, which meant they were fastened down by scar
tissue.
I also have a PPO. Mine is Blue Cross. I only pay $176 a month, but my
deductible is $10,000! I get it on my own, not through a job. ( I am 36
by the way, with no kids too.) I had to keep raising my deductible or
otherwise my monthly premium would be about $600 by now. So, that is
another issue. I would at least be paying 10k for the surgery out of my
own pocket. I guess I have a while to think things over though. I am
so glad I found this forum. We can help keep each other strong through
all of this! :) Have a good week.
At Wed, 18 Jul 2007, D wrote:
>
>Hi Andrea -
>
>Thanks! I'm having surgery with Dr. Cook here in CA. His office is
>about an hour's drive from where I live, so the geography was a big
>factor in my decision to go to him, but so far I've been very happy!
>
>I'm sorry I don't remember how you know that you have adeno? It's
>suspected that I have it, too, they aren't sure, but Dr. C thinks it
>may be a "secondary" cause of my pain. I'm really hoping that's not it!
>I also suspect I might have some endo on my diaphragm, which would be a
>drag because they often have to do a large incision to get it all out,
>and the recovery time would be several weeks longer.
>
>I'll talk to him more about the possiblity of adeno at the pre-op the
>day before surgery (he'll do another ultrasound, where he saw the
>evidence before). It's difficult - I don't have children and don't plan
>on having any (I'm 41) but I'd like to keep my uterus anyway! Right now
>I'm planning to keep it, and if it turns out that it is adenomyosis I'll
>have the hysterectomy when I'm really sure. You know you can tell your
>doctor what they can and can't take out, and they have to follow your
>instructions! If it comes to it, I definitely want to keep my ovaries.
>
>I don't know if I'd wait or not, if I were you... If you can manage it
>with pain meds, three days a month isn't so bad - but I know that even
>just a few days each month is often enough to really interfere with work
>and other plans. Some businesses won't deal with an employee
>consistently needing time off every month - I'm a teacher, and I know I
>would HATE to have to miss time like that, neverevenmind what my
>principal might say.
>
>I will say that I wouldn't have a lap unless I was very sure of the
>doctor doing it! The obgyn who did my first lap couldn't find any cause
>for my pain! I really don't think she tried - she didn't see anything
>obvious, so she sewed me right back up. Nevermind that before I stopped
>my menstrual cycle with BCPs I was having rectal bleeding with my
>periods! Or any of the other symptoms! I woke up and she told me I
>probably had IBS - I wanted to slug her, but instead I cried.
>
>The thing that most slowed up my treatment was my insurance - first I
>didn't have any, then I got an HMO plan that had no good endo doctors in
>network but still wouldn't let me go out of network. Finally, I just
>switched to a PPO plan, which is how I'm having surgery. I really
>recommend that everyone should have a good understanding of how their
>insurance works, what they will cover, and what their options are! I'm
>paying very high COBRA rates for my insurance, but it's worth it to
>finally be able to get this done.
>
>One thing about waiting to have surgery is that endo is progressive -
>you don't want to wait too long! I think if I were you, I'd start
>looking into my options, that way if it does start to get worse you'll
>have something of a plan. Or you may end up like I did - I had to wait
>for an open enrollment period to change from the HMO to PPO, open
>enrollments only come up once a year so if you need to make a change
>it's good to have it planned out!
>
>Well, I'm going on and on when I really need to get up off this couch
>and try to move around some! Dr. C's nurse gave me a prescription for
>Reglan for nausea and I'm so happy that it works! And it's liquid so
>it's easy for me to take a very small dose which is great because I
>don't need much, and at higher doses these anti-nausea drugs have a bad
>effect on me. It's so nice to not feel so queasy.
>
>Best,
>D.
>
>At Wed, 18 Jul 2007, andrea wrote:
>>
>>Hi there,
>>
>>Please let me know how your surgery goes! I am scared to even schedule a
>>lap now that I know I have adenomyosis too, not to mention having my
>>bowels and bladder messed with.
>>
>>I told my doc that Luupron is not an option for me, so the only other
>>solution for trying to get ALL the endo is having my uterus out. I'm
>>wondering if I should just leave it alone and do pain management. I
>>only have severe pain 3 days a month, but sometimes some mild to
>>moderate pain too when I ovulate. Would you leave it alone and wait?
>>There's a girl at my job who's had it done too who I need to talk to
>>more about it. What doctor are you going to? I hope it does wonders for
>>you! Thanks for all your sharing on here.
>>
>>--
>>Andrea :)
>>
>--
>Find an endo specialist in the ERC's EndoDocs group:
>http://groups.yahoo.com/group/EndoDocs/
>
>Try an excellent endo support group:
>http://groups.yahoo.com/group/erc/
>
>Info on pain management:
>http://www.painfoundation.org/
>
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