Re: Hi..
From: D (anonymous@obgyn.net)
Mon Apr 30 09:21:35 2007
Hi Gina -
Please be careful with the ibuprofen - 800mg every 3-4 hours is a pretty
high dose and it can really mess with your stomach. I developed a
couple of small ulcers thanks to ibuprofen and/or naproxen, my GI doctor
found them last summer before they got too bad. The only symptom I had
was I was starting to get heartburn in the evenings. Your pharmacist or
doctor should be able to tell you ways to reduce the risk, like always
be sure to eat when you take it, and maybe adding an acid reducer or a
drug called a "proton pump inhibitor".
I don't know of any endo specialists in your immediate area (a lot of
women find they have to travel to see a specialist), but there is a very
highly recommended doctor in Maine - Dr. Robbins. His website is the
one I linked to before:
http://www.endoexcision.com/
You might also try the endodocs yahoo group, linked to at the bottom of
this post, and the endo victims doctor's list:
http://www.geocities.com/endovictims/endodocs.html
One thing I've heard to be careful of with a Gyn Oncologist is that they
may tend to be more aggressive removing organs, rather than removing the
endo and preserving the organs, I suppose because that is the more
common strategy when trying to eradicate cancer. The "real" endo
specialists are doctors who make endo patients the primary focus of
their practices. A GO is not likely to see as many endo cases, and may
not have the same skills. I don't mean to be too negative about the
doctor you are seeing, just hoping to give you some ideas on what to
look for!
Also, don't be too surprised if your primary doctor doesn't know a whole
lot about endo - I've read posts from women on these forums who have
turned their PCPs on to their endo specialists, and at least one woman's
PCP went and had surgery with the same doctor after they did! (I think
it was Dr. Robbins, too.)
The other yahoo group I link to in my sig (below) is another really good
endo support group you might want to try. There are a lot of
knowledgeable women on there, I learn a lot from them! They also have
some helpful files posted in the group, like one on "how to find a
doctor". One of the best things you can do right now is learn all you
can about the disease in order to make good decisions about your
treatment. One of the worst things about endo, in my opinion, is that
there are a lot of doctors out there still administering treatments like
laser ablation that just don't work, and hormonal treatments which are
all temporary at best. Sorting through it all can be a lot of work, but
it's worth it!
Hope this helps!
D.
p.s. sorry the pain is getting worse - endo is a progressive disease,
so that's usually what happens, unfortunately. It sounds like you are
somewhat undertreating the pain if you are having to spend days in bed -
I think it's better to go ahead and take the pain meds you need! The
chances of getting addicted when using these drugs for pain is very
small, and those days in bed start to add up fast, I know. Here's a
link to the American Pain Foundation, they have some really good info
about pain management:
http://www.painfoundation.org/
This is a pdf download of their publication "Treatment Options: A Guide
for People Living with Pain":
http://www.painfoundation.org/Publications/TreatmentOptions2006.pdf
Good luck!
At Mon, 30 Apr 2007, Gina wrote:
>
>Hi,
>thanks for replying to my question about surgery, it seems I need to
>find a specialist in dealing with endo. I think I should ask the
>surgeon some questions when I got to see him. He is an Gynecologic
>Oncologist. Im not really sure what to do at this point. My concern is
>the amount of pain and how it seems to be increasing.
>
>I did go over my records for the surgery I had before to see if maybe I
>just didn't pay attention to the diagnosis of endo, I dont see anything.
>It seems like a blur to me in looking back and trying to sort out what
>went on then but I did learn something..pay more attention. In all
>honesty I truely believed that the removal of the endometrioma would be
>the solution to my problems with pelvic pain. This is someting I have
>had most of my adult life and as I am getting older the pain is getting
>worse and it is lasting longer.
>
>My doctor (fP) is the one who is stressing the diagnosis of endo because
>she has endo as well and birth control has helped her case. I will see
>her again at the end of the month and ask her about a specialist in the
>area.
>
>I have been fortunate so far in that OTC's are enough for the pain and
>help quite a bit, I am just a little concerned about the amounts that I
>have to take ..usually 800mg of ibuprophen every 3-4 hours just about
>every day, sometimes it takes a vicadon as well, on those days I am
>usually in bed.
>
>Again thanks for your replies, I have alot of info to read up on now.
>oh and my name is Gina, Im 36 and I live near Portsmouth NH.
>
>Its good to see so many nice people supporting each other on this forum.
>
>At Sun, 29 Apr 2007, D wrote:
>>
>>Hello --
>>
>>I'll add that I agree with the advice to find an endo specialist - a
>>really good doctor is key to dealing with this disease. Also, I agree
>>that it's odd they removed an endometrioma, but didn't diagnose endo -
>>but it is not uncommon, the same thing happened to one of my sisters.
>>She's lucky that she hasn't had any further problems, but she was also
>>closer to menopause when she had the endometrioma removed.
>>
>>One of the big differences between doctors is the method they use to
>>remove the disease - basically it's either excised (cut out) or it's
>>burned off. Excision is more thorough, and the results last longer.
>>Burning is also called cauterization, fulgeration, or ablation -
>>whatever it's called, there are significant limitations to burning the
>>lesions. They can't go deep enough, for one thing, for another they
>>can't remove lesions from sensitive tissues like bladder, bowels, etc.
>>Here's a page that explains it better:
>>
>>http://www.endoexcision.com/rationale.asp
>>
>>The top excision doctors have recurrence rates below 20% five years
>>after surgery, much better than what medical treatments can offer.
>>
>>Hope this helps!
>>
>>At Sun, 29 Apr 2007, M wrote:
>>>
>>>Hi
>>>I agree with Michelle. I think its a little strange that you were not
>>>given a diagnosis of endo at the time of surgery.
>>>I had a laparotomy in Jan 07 to remove an 11cm endometriomas and left
>>>ovary and was diagnosed with endo.
>>>I was surprised that my doc didn't remove the endo. I was told that it
>>>was too much and too spread. It kind of irritated me, but I'm guessing
>>>that she just wasn't able to handle those delicate areas. I also have
>>>another endometriomas growing back again which makes me wonder iif the
>>>first was thoroughly removed or if they are just grwing fast.
>>>I would agree you should def find a specialist for endo. That way you
>>>are not wasting time and going through surgery after surgery with no
>>>relief. Hopefully if you can find a specialist you will be able to have
>>>longer lasting pain relief.
>>>I know its hard to be in pain and not worry, but I def think that
>>>stress/worry makes it worse. Hope you find some relief soon.
>>>Hang in there!
>>>Melissa
>>> At Sun, 29 Apr 2007, anonymous wrote:
>>>>
>>>>Hi,
>>>>I am new to this forum. I have been reading through the site and when I
>>>>found this forum on endo I started reading some of the stories and
>>>>questions and I feel a little scared about the pain of having endo.
>>>>I have not been diagnosed with endo but 2 years ago I had an
>>>>endometrioma removed, and also the tube and ovary was removed on left
>>>>side. It was large but they were able to remove it with laproscopy.
>>>>Anyhow the pain never really went away, and so now I have been referred
>>>>back to my surgeon because my doctor thinks I have endo. I am a bit
>>>>nervous because I really dread having to go through surgery to try to
>>>>fix the endo or whatever, only to have the pain never go away. what I
>>>>am a curious about is the success rates of surgery for endo. Is it
>>>>really worth it? does the pain ever really go away?
>>
>>--
>>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/
>>
--
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/
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