Re: At my WITS END!! I need real answers and real solutions!!
From: Leyna (anonymous@obgyn.net)
Tue Oct 28 00:58:16 2008
Heylo,
I'm sorry to hear about your doctor problems. I am just stumbling onto
all my problems with endo and am not that well-versed, but I can tell
you that I am 23 and have been on about 10 different birth control pills
since I was 14 for other reasons and none of them helped to prevent my
endometriosis... nor did Nuvaring once my doctor found it; and my pain
hasn't reached the level yours is at, but otc medicines dont help.
Have you thought about having another excision, or a more in-depth
exploratory surgery to look for deposits other surgeries might have
missed or to look for adhesions that may have formed? Maybe a
hysterectomy? I don't know who your insurance covers or what the area
you live in is like, but if I were you I would get online and do some
research and see if there are any highly-recommended ob-gyns or
specialists within any sort of remotely reasonable driving time from
you... one, two, even four hours... because the doctors you are seeing
not only aren't cutting it, they sound like they just don't care, and
that's worse.
Please keep us up to date!
--
Leyna
At Sat, 4 Oct 2008, Michelle wrote:
>
>Hello,
>
>I am sorry you are going through all this.
>I am 28 and have had three surgeries (endo specialist for the third).
>With endo you have to be really proactive and teach yourself. There are
>a multitude of doctors who don't understand just how painful and
>debilitating this disorder is. There is a lot for doctors to know, but
>for a disorder that can cause so many problems it is not taught as well
>as it should be. If men had it, I am sure we would have a cure by now!!
>
>Anyways, for Birth control pills you must stay away from the pills that
>are made primarily for estrogen (a little bit is common but
>progestin/progesterone only pills are available). Mostly estrogen pills
>can make the endo worse.
>I looked up a little about kavira and it doesn't appear to be mostly
>estrogen but you can look at the actual amounts on the package. I too
>have asthma and while I haven't come across that in my birth control
>pills I have had other prescriptions that did. Every possible side
>affect has to be listed, even if highly unlikely. It is hard to know
>how to sort all the info out.
>Also, most people are not satisfied with Lupron and very few even
>prescribe Depo anymore! It just masks the endo in most cases.
>Ibprofin, motrin is the best for pain.
>
>Get the book, you will laugh at the title...
>Endometriosis for Dummies. I have found it to jive with all the
>readings I have done including journals in an easy to understand/quick
>way. I have other great references and could get those names for you as
>well. The Endometriosis Association has good books listed on their site
>as well. They also have lists of doctors who are highly recommended by
>other women. Maybe one would be near you. You should have better pain
>control. I have it and use it wisely! Doctors should not be saying
>stuff like that to you.
>
>I have to go, but you are welcome to email me with questions. I have a
>similar story. I have done much research and have learned a lot.
>
>--
>Michelle
>greywolf112000@yahoo.com
>
>At Fri, 3 Oct 2008, Heather wrote:
>>
>>Hi all,
>>
>>Im new here aand I need your hekp! I have had endo for 12 yrs now. I am
>>28 yrs old. I have been on a mulitude of birth control pills, Ive used
>>Synerel, the Depo shot, you name it.
>>
>>Currently, I take bp continuously and dont have periods, havent in years
>>and years. I have advanced endo. so this is best (I assume or so Im
>>told).
>>
>>I have an 'episode' around 4 times a year and either am instructed to
>>'ride it out' or my meds are changed. I have been through 3 different
>>Drs in the last 3 years b/c I cant seem to get anyone to really listen
>>and discuss options and basically, just act concerned rather than
>>prescribing me something w/o discussing the side effects, etc and
>>shoving me right on out the door.
>>
>>Recently, my pain had been so bad for the last 3 months consistently
>>(off and on, and especially when there is physical activity involved)
>>that I cannot carry on with my normal activities. I am an active girl,
>>I have a horse, I do a lot of outside stuff, etc.
>>
>>The new Dr I am now seeing just prescribed me a pill (Kariva) that warns
>>people with endo and asthma (I also have asthma) to stay away from (I
>>looked it up on WebMD). So again, there isnt any real involvment and no
>>level of concern coming from the Dr I am paying (well) with my insurance
>>plan. I have had it UP TO HERE Im at my wits end!!! AND if I
>>hear..."No, we dont prescribe pain pills for period pain" and "just ride
>>it out" one more time I think I will have to SCREAM!!!!
>>
>>So, again, I am on the hunt for a new Dr. I cant take it anymore!! Can
>>someone help me, give me some advice? I just want to talk to someone who
>>is going through similar issues with endo pain, treatment decisions,
>>etc.
>>
>>I would also be thrilled to know what you all are doing to control your
>>symptoms? Clealy I am having to do what I am paying my Dr to do which is
>>research and decide what method of treatment is right for me. I am
>>researching birth control pills like a made woman but there are soo many
>>that treat endo that I just am at a loss as to where to begin.
>>
>>Anyone have any advice?? Im painfully desperate!
>>
>>--------------------------------------------------------------------------------
>>
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
>>Last Updated: March 21, 2007
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
>>
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
>>--
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
>>
>>--------------------------------------------------------------------------------
>
>>--------------------------------------------------------------------------------
>>--------------------------------------------------------------------------------
![[ endo@obgyn.net ]](../../images/endo_at_obgyn.gif)