Re: Disappointed-Endo is a complex thing!
From: anonymous (anonymous@obgyn.net)
Wed Dec 31 19:54:51 2008
Kristy,
Again I must ask, what kind of endo supposedly does NOT recur? I'm
pretty sure that ALL endo can and does recur.
At Thu, 25 Dec 2008, Kristy wrote:
>
>I have had 4 surgeries thus far (1 to diagnose, and 3 to check the
>status and clean out if necessary).
>
>I ran about 2 years between surgery #1 and #2, and then 3 years between
>#3 and #4, and I am now almost 3 years since lap #4 which was in 2006.
>
>I thank you for your opinion but the choices I have made work best for
>me and my endo.
>
>Even if I went to one of the top experts like in Atlanta, I would need
>surgery again even after them. I know my endo well.
>
>Just would have been nice if the doctor that is considered the expert
>for my area would have told me that my endo was the kind that recurred.
>
>At Thu, 25 Dec 2008, anonymous wrote:
>>
>>Kristy, how many surgeries have you had, can I ask?
>>
>>And 'how often' do you need surgery to 'get cleaned out'? This is not
>>the best way to go, IMO.
>>
>>At Wed, 24 Dec 2008, Kristy wrote:
>>>
>>>Nweber,
>>>
>>>For some of us the risk of taking the medication (Lupron or Zoladex) for
>>>more than 6 months is worth it if it's going to help keep the pain of
>>>endo in check.
>>>
>>>Even though a company may stipulate a guideline (and same with the FDA
>>>in this country) as to how often to give it it is still up to the doctor
>>>to decide how long the doctor gives it to the patient to treat a
>>>problem.
>>>
>>>When I had talked to TAP several years ago they also stated this.
>>>
>>>Also, while it is true that most doctors in this country get kickbacks
>>>for prescribing various medicines like Lupron or even some of the
>>>medicines used by cardiologists for their patients (because my mom's
>>>cardiologist is trying to push her in to taking Caudet and I told her no
>>>and had to remind her about the cyst on her liver of which the doctor
>>>said he felt it wouldn't be a problem we know that for her it will be a
>>>problem since she is also a Breast Cancer survivor) not all doctors are
>>>like this.
>>>
>>>My doctor is not one of them. When I told her no to Lupron she
>>>respected my wish on that but I chose Zoladex instead and it's been the
>>>best choice for me.
>>>
>>>Yes, there are risks from taking it for longer than 6 months or more
>>>than one course of 6 months just like with the Lupron (for those that
>>>have done more than one course of it and I know of several that have)
>>>but those things that are risks with the drug I was already at risk for
>>>long before I ever started taking the medication.
>>>
>>>Surgery as I need it to get cleaned out, the pill (when I am on it), and
>>>Zoladex (when necessary) are the best choices for me and my endo. And
>>>this is the same situation that some other ladies fall in to as far as
>>>choices.
>>>
>>>This is what they and their doctors feel works best for them.
>>>
>>>At Wed, 24 Dec 2008, NWeber wrote:
>>>>
>>>>Of course a doctor can give the prescription multiple times, doesn't
>>>>mean he should be.
>>>>
>>>>You are taking your own risk if you are taking this drug more than 6
>>>>months. It is not recommended.
>>>>
>>>>Just like she said, in Australia they CAN'T take the drug more than 6
>>>>months. Unfortunatly here in the United States the doctors get huge
>>>>kick-backs for these drugs, so of course they try and prescribe them
>>>>longer.
>>>>
>>>>At Tue, 23 Dec 2008, Kristy wrote:
>>>>>
>>>>>Here in the U.S. the company that makes Zoladex allows the doctor to
>>>>>give it to the patient for one year if they (the doctor after discussing
>>>>>how the patient is doing) so choose.
>>>>>
>>>>>With Lupron the doctors here can prescribe it multiple times if
>>>>>necessary to treat a patient.
>>>>>
>>>>>At Tue, 23 Dec 2008, Nicki wrote:
>>>>>>
>>>>>>Kristy and others,
>>>>>>Now I am beginning to understand so much distress in the states about
>>>>>>this. I'm in Australia, and I have to say our systems are doing
>>>>>>different things. My specialist informed me that I cannot take Zoladex
>>>>>>for more than 6 months (even though she is only recommending 3) and that
>>>>>>I would never be allowed another perscription. OUr system is set up
>>>>>>that when the specialist orders the drug she has to get authority and it
>>>>>>goes on my record how much I've had/got and the system will never allow
>>>>>>it to be perscribed more than 6 months. This is for Zoladex I might
>>>>>>add...so I don't know what would happen for Lupron - I have a hunch that
>>>>>>it would be the same.
>>>>>>
>>>>>>At Mon, 22 Dec 2008, Kristy wrote:
>>>>>>>
>>>>>>>For about the last 2 years the FDA has allowed the Lupron to be given
>>>>>>>for a year if it has helped the woman who has tried it.
>>>>>>>
>>>>>>>I knew that was coming because when I called the company about 4 years
>>>>>>>ago to ask some questions they told me that they were going to ask to
>>>>>>>get approval for doctors to prescribe it for a year. The FDA granted
>>>>>>>permission.
>>>>>>>
>>>>>>>I know of someone who had done Lupron for 3 years and that was several
>>>>>>>years back even before this and as far as I know she has not had any
>>>>>>>problems from doing so. Of course, I have not talked to her in the last
>>>>>>>few years to find out how she is doing since that time to see what kind
>>>>>>>of problems she may have run in to from having done so.
>>>>>>>
>>>>>>>At Mon, 22 Dec 2008, NWeber wrote:
>>>>>>>>
>>>>>>>>To add to the Lupron info:
>>>>>>>>
>>>>>>>>Please keep this in mind with Zoladex and Lupron, both can cause birth
>>>>>>>>defects if it is lingering in your system. Please remember this for all
>>>>>>>>of you out there trying to conceive after taking this drug.
>>>>>>>>
>>>>>>>>Also THIS DRUG IS NEVER TO BE TAKEN MORE THAN 6 MONTHS. This is listed
>>>>>>>>in the dosage information. It will deplete your bone mass, even with
>>>>>>>>add back therapy and calcium.
>>>>>>>>
>>>>>>>>If you decide to take this drug, please be sure you are being prescribed
>>>>>>>>it safely. There are tons of doctors that will try and push it more
>>>>>>>>than six months, all because they receive kick-backs for prescribing.
>>>>>>>>
>>>>>>>>I have voiced my opinion on this drug and would never take it again, so
>>>>>>>>I won't beat a dead horse. Just make sure you your doctor is following
>>>>>>>>the dosage instructions.
>>>>>>>>
>>>>>>>>At Mon, 22 Dec 2008, anonymous wrote:
>>>>>>>>>
>>>>>>>>>Hi Nicki,
>>>>>>>>>
>>>>>>>>>My pleasure. PLEASE don't get discouraged. This disease is hard enough
>>>>>>>>>to deal with as it is.
>>>>>>>>>
>>>>>>>>>I had lap surgery in june after going to the ER; I had never heard of
>>>>>>>>>endo, so the doc basically said, "we have to give you this shot for 6
>>>>>>>>>months post treatment. You'll be back to 90% after the first month." He
>>>>>>>>>told me that for four shots and the last time i went he said that i
>>>>>>>>>might need 9 shots instead of 6.
>>>>>>>>>
>>>>>>>>>I didnt know anything about Lupron, so i trusted my doc and figured I'd
>>>>>>>>>give it a try. Honestly, my pelvic pain is worse than it was before I
>>>>>>>>>had the surgery. I had a bit of hair loss, exhaustion/fatigue,
>>>>>>>>>nauseated ALL the time, i basically forced myself to eat.(though on the
>>>>>>>>>plus side I lost 10 pounds ha ha ha..sorry, important to have a sense of
>>>>>>>>>humour.) I was vomiting frequently, memory problems, mental fogs,
>>>>>>>>>trouble focusing. I'd be standing in front of my best friend and
>>>>>>>>>couldnt remember her name. I bruised easily all over and the spot where
>>>>>>>>>he gave the shot would always hurt for a couple of days afterwards, one
>>>>>>>>>time my whole arm felt like it was burning. Hot flashes. After the
>>>>>>>>>third shot and no pain relief i started digging. I found one of the
>>>>>>>>>actual studies that was submitted to the FDA for approval and here is
>>>>>>>>>what helped me decide to quit (among the above and some other things)
>>>>>>>>>
>>>>>>>>>*lupron is only effective on a small percentage of women that use it
>>>>>>>>>(cant remember specific number but i THINK it was around 30%). Those
>>>>>>>>>women that see success with it are 90-something percent stage I or II -
>>>>>>>>>I am stage IV.
>>>>>>>>>
>>>>>>>>>*lupron is a medication that was designed as chemotherapy for men with
>>>>>>>>>prostate cancer, it is not specifically designed for what we have. So
>>>>>>>>>basically I felt like i was being shot up with a bunch of chemicals that
>>>>>>>>>were messing up a bunch of other things in my body to kill the endo.
>>>>>>>>>
>>>>>>>>>*of those women that did find pain relief from the shot, 90-something
>>>>>>>>>percent were also on pain meds - vicodin and other narcotics.
>>>>>>>>>
>>>>>>>>>*lupron was a temporary fix, not a long term solution, and endo was
>>>>>>>>>likely to come back after I stopped the shots
>>>>>>>>>
>>>>>>>>>I just found a few holes and contradictions in the study that made me
>>>>>>>>>uncomfortable.
>>>>>>>>>
>>>>>>>>>NOW...with all that said, the last time I went to see this doc, I
>>>>>>>>>basically didnt believe anything was working since there was still pain,
>>>>>>>>>so I made him do an exam...which showed that the endo was indeed
>>>>>>>>>shrinking. I made him show me before and after pics from the exams. (I
>>>>>>>>>know I'll take a lot of heat for saying that, but its the truth.)
>>>>>>>>>
>>>>>>>>>Our situations are different though; I do not want children, you do. I
>>>>>>>>>am having severe pain; you are not. If you wish to take lupron to slow
>>>>>>>>>the growth and then have children, I understand. (I know I'll take heat
>>>>>>>>>for that too...but whatever.) I would say just make sure you research
>>>>>>>>>the drug carefully before you make your decision, though it sounds like
>>>>>>>>>you need to do something to stop/slow the growth before you conceive and
>>>>>>>>>obviously birth control pills wont work. If Lupron works for you, that
>>>>>>>>>is awesome. I did, too, in my travels, find a few women that said
>>>>>>>>>Lupron did work for them, but admittedly the majority were not good
>>>>>>>>>experiences. Additionally, I did not spend a lot of time researching
>>>>>>>>>Lupron as it relates to fertility, so I cannot speak to that
>>>>>>>>>specifically; my primary goal is pain relief.
>>>>>>>>>
>>>>>>>>>I don't think you indicated if you were seeing a regular obgyn or a
>>>>>>>>>specialist and I have to say, I'd recommend a specialist. I don't think
>>>>>>>>>the obgyn's (for the most part) are maliciously trying to harm us, they
>>>>>>>>>just are not educated on proper treatments for endo or don't know how to
>>>>>>>>>do excision properly. Most endo specialists are also fertility
>>>>>>>>>specialists, so seems like that would be your best bet.
>>>>>>>>>
>>>>>>>>>Well, I think that's it. Feel free to message/email me if you have
>>>>>>>>>other questions. I don't know much, but I'm happy to help any way I
>>>>>>>>>can.
>>>>>>>>>
>>>>>>>>>Hang in there and don't let the negativity get to you. THere is a lot
>>>>>>>>>to be learned here - by ALL of us. Please message or email back and let
>>>>>>>>>us know how you're doing when you figure it out.
>>>>>>>>>
>>>>>>>>>Much love and hugs.
>>>>>>>>>
>>>>>>>>>At Mon, 22 Dec 2008, Nicki wrote:
>>>>>>>>>>
>>>>>>>>>>Hi anony
>>>>>>>>>>thankyou. THis is exactly what I mean. Of course let us know if you
>>>>>>>>>>have other information, but it is HOW it is being done that is the
>>>>>>>>>>problem. I'm quite blown away by it all actually...that some people
>>>>>>>>>>respond the way they do. Some responses are downright rude,
>>>>>>>>>>condescending and mean.
>>>>>>>>>>Thanks again. And see now I am more inclined to ask you why you
>>>>>>>>>>discontinued - What was you're experience like if you'd like to share?
>>>>>>>>>>
>>>>>>>>>>At Sun, 21 Dec 2008, anonymous wrote:
>>>>>>>>>>>
>>>>>>>>>>>Goodness ladies, can we all just grow up and be nice to each other? I
>>>>>>>>>>>have no problem with warning others of the downfalls of some of the
>>>>>>>>>>>medications that are out there, but this sarcasm/anger at the OP is
>>>>>>>>>>>uncalled for. This forum is for support and to help answer questions
>>>>>>>>>>>for others that are not in the know. You can do that without being a
>>>>>>>>>>>jerk.
>>>>>>>>>>>
>>>>>>>>>>>Nicki, I completely understand; I was doing lupron shots and received
>>>>>>>>>>>some not so nice responses as well when I initially posted. Through the
>>>>>>>>>>>gentle and kind encouragement of the other responses, I decided to do
>>>>>>>>>>>more research and now that i know what it can do (from research AND
>>>>>>>>>>>experience) I've discontinued the shots. I think that people are trying
>>>>>>>>>>>to warn/educate you they are just being condescending jerks about it.
>>>>>>>>>>>
>>>>>>>>>>>I decided to stick around on this forum b/c honestly, this is probably
>>>>>>>>>>>the best source of information i have about endo: from other people that
>>>>>>>>>>>have experience with it. I hope you do find some use from this forum,
>>>>>>>>>>>the good support is still there, apparently you may just have to sift a
>>>>>>>>>>>little to find it. You do what is best for YOU.
>>>>>>>>>>>
>>>>>>>>>>>Again: let's all grow up and not treat each other the way some of the
>>>>>>>>>>>medical professionals are treating us.
>>>>>>>>>>>
>>>>>>>>>>>Hugs to all.
>>>>>>>>>>>
>>>>>>>>>>>At Sun, 21 Dec 2008, anonymous wrote:
>>>>>>>>>>>>
>>>>>>>>>>>>Thanks for the positve comments. I am new to this site and to posting
>>>>>>>>>>>>and was shocked at the negative feedback I got from my question about
>>>>>>>>>>>>Trelstar, another medication that causes chemical menapause. This first
>>>>>>>>>>>>one I got was a sarcastic comment about how my prostate cancer will go
>>>>>>>>>>>>away. Maybe during different times I may have appreciated the humor but
>>>>>>>>>>>>not in my current and desperate state. I was ready to give up and not
>>>>>>>>>>>>read any more but your post made me realize that maybe some other woman
>>>>>>>>>>>>who are more positive will be able to help me through this difficult
>>>>>>>>>>>>time. Thank you
>>>>>>>>>>>>
>>>>>>>>>>>>t Sun, 21 Dec 2008, JD wrote:
>>>>>>>>>>>>>
>>>>>>>>>>>>>Hi Nicki
>>>>>>>>>>>>>
>>>>>>>>>>>>>I am also in Australia (qld) and was diagnosed with severe Endo 3 years
>>>>>>>>>>>>>ago. I had a lap in Oct 2006 followed by 6 months of Zoladex njections
>>>>>>>>>>>>>(maybe what you are talking about...) 2 months into the injections I
>>>>>>>>>>>>>started add-back therapy to balance out the hot flushes and crawling
>>>>>>>>>>>>>skin feeling. While the injections made me feel pretty darn crappy for
>>>>>>>>>>>>>about 6 months, I did feel margionally better for a good 12 months
>>>>>>>>>>>>>afterwards. I personally wouldn't have them again though, but at the
>>>>>>>>>>>>>time I felt it was my only option because the surgeon that performed the
>>>>>>>>>>>>>lap wasn't a specialist and said he couldnt remove much so he would try
>>>>>>>>>>>>>to shrink it.
>>>>>>>>>>>>>
>>>>>>>>>>>>>However, I have just had excision surgery 1 month ago with Dr
>>>>>>>>>>>>>Wynn-Williams from Eve Health is Brisbane and am feeling pretty
>>>>>>>>>>>>>confident that it was successful. And as I do not want to have children
>>>>>>>>>>>>>I was happy for him to do what he could to get it all, my health is more
>>>>>>>>>>>>>important to me than the ability to have children. I do not have
>>>>>>>>>>>>>private health so it did cost me $4500 as an intermediate patient but I
>>>>>>>>>>>>>would have had to wait 12 months if I wanted to go public.
>>>>>>>>>>>>>
>>>>>>>>>>>>>I have not been on this forum for over 6 months, although I have read
>>>>>>>>>>>>>the odd post (like yours yesterday) and I have to agree that it can be
>>>>>>>>>>>>>quite negative and downright bitchy sometimes. I know we are ALL
>>>>>>>>>>>>>frustrated but we need to be supportive of others and not just out to
>>>>>>>>>>>>>push 'our story' so much.
>>>>>>>>>>>>>
>>>>>>>>>>>>>It is nice to hear from someone over this side of the world!!
>>>>>>>>>>>>>
>>>>>>>>>>>>>Jaime
>>>>>>>>>>>>>
>>>>>>>>>>>>>>At Sun, 21 Dec 2008, Nicki wrote:
>>>>>>>>>>>>>>>
>>>>>>>>>>>>>>>Hi all who read this
>>>>>>>>>>>>>>>I'll make this short, I don't want to ramble on.
>>>>>>>>>>>>>>>I came here looking for information and support. I have certainly got
>>>>>>>>>>>>>>>that from many here and I thankyou deeply. When you are told you have
>>>>>>>>>>>>>>>this 'thing' and don't know much about it comming somewhere like this
>>>>>>>>>>>>>>>can be very comforting.
>>>>>>>>>>>>>>>I'm just disappointed with some of the, well, almost 'argueing' about
>>>>>>>>>>>>>>>topics, and some of it is not comming over very nice at all...which is
>>>>>>>>>>>>>>>very disappointing for a place that is supposed to care and support.
>>>>>>>>>>>>>>>Someone recently started a thread about it being negative here, and I
>>>>>>>>>>>>>>>think it has continued to be!
>>>>>>>>>>>>>>>Look, in the end endo is a complex and not well understood condition.
>>>>>>>>>>>>>>>Sure I don't doubt it that there are some Dr's out there who are giving
>>>>>>>>>>>>>>>wrong/bad info, which is terrible. So yes it is up to us to be our own
>>>>>>>>>>>>>>>advocates and find out information. But in the end we have to make
>>>>>>>>>>>>>>>decisions about our own health care, and what is best for us. And sure
>>>>>>>>>>>>>>>if someone doesn't understand - inform them...but make sure you have
>>>>>>>>>>>>>>>accurate information, know their story well enough to make comment and
>>>>>>>>>>>>>>>above all do it in a respectful way! For example, I'm going to have the
>>>>>>>>>>>>>>>drug that puts you into menopause for 3 months rather than have my bowel
>>>>>>>>>>>>>>>cut from my uterus and endo taken away from there. Some have slammed me
>>>>>>>>>>>>>>>for this almost without knowing (or bothering to ask) that I've chosen
>>>>>>>>>>>>>>>this because my goal at this time in my life is to preserve my
>>>>>>>>>>>>>>>fertility, which would be compromised with such a big operation (mass of
>>>>>>>>>>>>>>>scar tissue on my uterus). I will seek surgery after I've had my
>>>>>>>>>>>>>>>children. I will be going to IVF and this drug is used there too before
>>>>>>>>>>>>>>>an IVF cycle begins and has been shown to increase rates of pregnancy.
>>>>>>>>>>>>>>>Everyone's story is different.
>>>>>>>>>>>>>>>I'm sure most who come here are at one stage or another not unlike me -
>>>>>>>>>>>>>>>scared, worried, confused, frustrated, seeking information and perhaps
>>>>>>>>>>>>>>>guidance. They need kindness and support not negativity and more
>>>>>>>>>>>>>>>confusion.
>>>>>>>>>>>>>>>I wish everyone with endo the very best in their journeys to beat this
>>>>>>>>>>>>>>>terrible condition.
>>>>>>>
>>>>>>>--
>>>>>>>=====
>>>>>>>Kristy :)
>>>>>>>
>>>>>>>http://www.geocities.com/sokokl/Kristysstory.html
>>>>>>>
>>>>>--
>>>>>=====
>>>>>Kristy :)
>>>>>
>>>>>http://www.geocities.com/sokokl/Kristysstory.html
>>>>>
>>>--
>>>=====
>>>Kristy :)
>>>
>>>http://www.geocities.com/sokokl/Kristysstory.html
>>>
>--
>=====
>Kristy :)
>
>http://www.geocities.com/sokokl/Kristysstory.html
>
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