Need help
Chris
very painful periods and fatigue, but my main problem has been
gastrointestinal (nausea and diarrhea). I can hardly eat and the pain
is constant. It has been debilitating. My other problem is that due
to a heart condition, it is dangerous for me to go under anesthesia to
make a definite diagnosis with laparoscopy. The first specialist I
went to was very good and felt that with my history, test results and
exam it was endo, probably intestinal. I also had a small ovarian
cyst at the time and had developed bladder pain. He felt I also
probably had adhesions due to a previous c-section because I have
constant pain around my bellybutton. His only option for me ws to go
on Lupron. After looking into it, I decided there were too many
dangerous side-effects. I went to another specialist, but he is a
reproductive endocrinologist and he only wants to do a laparoscopy if
my cardiologist says ok. Unfortunately, he would not be able to
perform the surgery at his hospital because they need a specialist for
my heart. I feel I'm getting conflicting opinions. My regular
gynecologist wanted to start me on Seasonale, but really doesn't seem
very knowledgeable about endo (she didn't suggest any tests and has
been seeing me for years without suggesting it as a possibility).
I am concerned that the repro endocrinologist only sees infertile
patine=ts with endo who may not be sick (he didn't even do a pelvic
exam). How do I find someone who has experience in treating patients
who are sick with endo, not just trying to get pregnant and that will
discuss all of my options. Personally, I would like to take the
Seasonale and see if that helps for now.
Any advice would be greatly appreciated.
Thanks,
Chris
Susan
We can't really offer advice, but hopefully it will be helpful to discuss this
and share our experiences.
It's maddening when doctors divide up our bodies according to their specialties,
and no one seems to be able to address the whole woman. REs do tend to focus on
fertility rather than pain issues. It does seem like a good idea, though, to
keep looking for a doctor who can consider the broader issues. There are some
out there but they aren't always easy to find.
My most debilitating symptom of endometriosis was gastrointestinal, and it was
very difficult to find a doctor who could address gastrointestinal issues and
endometriosis simultaneously.
Your heart, of course, has to take priority. Endometriosis pain is miserable,
but heart trouble has immediate life-threatening consequences.
My own experience with lupron was extremely unpleasant. Doctors often neglect
to explain that if lupron helps, it only helps during the course of treatment
and for a short time afterwards. Lupron doesn't remove endometriosis tissue
from the body, so it's not really making progress toward fighting the disease.
The same can be said of birth control pills, but usually the side effects are
much more tolerable than the side effects of lupron. I would tend to agree with
you that an extended-cycle birth control pill regimen like Seasonale does seem
like a reasonable place to start. If this doesn't help or makes the pain worse,
of course, it's better to move on to another treatment, but it does seem worth a
try.
Some of the top endometriosis doctors are Dr. Redwine in Oregon, Dr. Reich in
New York, Dr. Albee and Dr. Lyons in Atlanta. There are others, as well. You
might want to contact local endometriosis support groups. Although as an
organization they won't recommend specific doctors, conversation with other
participants will surely turn up some names.
Remember that there are many issues which can cause pelvic pain and heavy
menstrual bleeding, and not all of them are related to endometriosis. An
accurate diagnosis is important to finding the right treatment. With
endometriosis, both diagnosis and effective long-term treatment involve surgery,
so I hope you will be able to find a gynecologist who can coordinate with a
cardiologist to make sure that all your health issues are being attended to
properly.
Keep us posted!
--Susan Strandskov
In article <6gqs905drdckinnju...@4ax.com>, Chris says...
Chris
Thanks for the inforation. I had heard of Dr. Reich in the past, but
it seems that he is now only in Pennsylvania, not New York. I also
heard of Dr. Eric Daiter in New Jersey. Have you ever heard of him?
Thanks again for the help,
Chris
Susan <sta...@sprintmail.com> wrote in message
news:<oqkv90hccn5nmfmug...@4ax.com>...
Chris
I understand what you mean. I will check into that further through
the medical journals. Again, I apperciate your help and the
information. I ahve been very confused about how to move forward in
all of this.
Chris
Susan <sta...@sprintmail.com> wrote in message
news:<9cu5a0phofbfp8ef9...@4ax.com>...
> One of the difficult things in tracking down a good endometriosis doctor is
> guessing the meaning of name recognition. There are some doctors who are truly
> at the leading edge of research who can offer the best endometriosis treatment
> available in the world today, and their names are recognized because of their
> expertise. Then, on the other hand, there are some other doctors who are kindly
> willing to talk with patient support groups, but their knowledge of treating the
> disease is about the same as the average doctor. A doctor who is kind enough to
> be helpful to support groups and answer patients' questions can gain a lot of
> name recognition without possessing a particularly high level of expertise in
> administering treatment.
>
> It can be a dilemma, especially if you are considering traveling for treatment.
> Is the doctor only well-known because he's kind and helpful to patient support
> groups? Or is the doctor well-known because he is truly among the world's
> leading experts? You might check on on whether he has published research
> articles in medical journals, this is sometimes enlightening.
>
> You will of course have to consider your own set of circumstances (such as
> location, finances and the restrictions of your insurance plan) when you choose
> a doctor. In any city, there are some doctors who are better than others at
> treating endometriosis. And, whether he's a leading expert or not, a doctor who
> has indicated interest and concern about endometriosis treatment is usually a
> better choice than a doctor who doesn't like to be bothered with endometriosis.
>
> Hang in there!
>
> --Susan Strandskov
>
>
> In article <fdu1a0hpa98env2ng...@4ax.com>, Chris says...