ENDO Messages for May, 2007: Re: 2nd month of Lupron

Re: 2nd month of Lupron

From: D (anonymous@obgyn.net)
Thu May 3 20:05:02 2007

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In reply to: Amanda: "Re: 2nd month of Lupron"

One of the problems with Lupron is that it doesn't work for everyone, only about half the women who have endo and use it get relief. But even if it does work, you can't stay on it for more than one year and when it's stopped the pain usually returns with the menstrual cycle. I'm sorry, but I think the best way to get through this is to stop the Lupron and find a doctor who can thoroughly remove the disease. And see a pain management doctor if necessary in the meantime!

The best chance for long-term relief is to have the endo thoroughly excised (cut out) - the top excision doctors have recurrence rates below 20% five years after surgery. Most doctors don't excise the disease, they use one of several methods of burning it. Ablation, fulgeration, and cauterization are all ways to burn it off, and none of them work as well as excision. If they find endo on sensitive healthy tissue, like bladder or bowels, it cannot be burned off and if the doctor can't excise it the disease will be left to continue causing pain and symptoms. Even if all the lesions are in places that can take the heat they may be too deep to burn out completely - imagine burning the top off of a weed and leaving the root, of course the weed grows back. Here's a link that explains more:

http://www.endoexcision.com/rationale.asp

It can be a little confusing because lasers can be used to excise endo, which is a perfectly good method - excision is excision. Unfortunately, it seems to be more common for doctors to use lasers to do laser ablation, which is just another way to burn the top off of it.

Amanda and Jesi - are your doctors treating your pain? They should be! And not just with Lupron. I'm sorry it doesn't sound like either of you are getting much help with that, and that stinks. You might try asking for referrals to pain management - lots of doctors aren't comfortable prescribing the quantities of drugs that endo patients often need to deal with the pain, but that's what pain specialists do. Keeping a pain diary can help communicate your needs to your doctors, and it can help them feel more at ease knowing there is documented evidence that you really need the drugs. Here's a link to the American Pain Society website which is full of information and advice:

http://www.painfoundation.org/

I hope this helps!

At Thu, 3 May 2007, Amanda wrote: >
>At Thu, 3 May 2007, Jesi wrote:
>>
>>Hi Ladies. I am in my second month of Lupron and I started Prempro
>>about 2 weeks ago. I am still experiencing severe pain and cramps. My
>>OB said the lupron would make the pain go away, but I am still
>>suffering. I also feel so crazy, the mood swings and hot flashes are
>>getting the best of me.
>>
>>I would love and advice or suggestions on how to get through this.
>>
>>Thanks so much
>
>Hello, I am on Lupron and I am also in pain. I just saw my specialist
>yesterday and she said that her concern now is that it may be scar
>tissue. Perhaps that is why you're still in pain. I'm going for my 3rd
>surgery on May 18th to hopefully clear everything up with laser surgery.
>To be honest...I don't think the pain will ever go away.
>
>Have a great day

-- 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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In reply to: Amanda: "Re: 2nd month of Lupron"

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