ENDO Messages for December, 2006: Re: Adenomyosis with severe pain?

Re: Adenomyosis with severe pain?

From: anonymous@obgyn.net
Mon Dec 18 16:40:24 2006

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In reply to: Kristen: "Re: Adenomyosis with severe pain?"

Dear Olivia, Mindy Jo, and Kristen,

Thank you for your posts. I think I have adeno b/c I'm two months out of excision of endo off my uterus by a specialist, and while I am no longer in constant pain, I was in pain as bad as I have ever had for all six days of my period (and for me, bad is incapiciatating).

>From what I've read a hyst is the definative cure for adeno, the other
treatments are all homonal and so won't work with ttc. I was on Lupron for endo and I would not recommend it, ever, it caused lots of new problems and didn't help much at all.

I'd talk to a specialist about taking your ovaries out...they can excise all the endo and remove the uterus, then there shouldn't be any endo or adeno left for estrogen to feed. Anyway, the ovaries are not the only source of estrogen (which is something we really do need) and so taking them out isn't a sure bet for solving the problems in the first place. (See my post to the young woman seeking opinions earlier today for a list of specialists.)

As far as I can tell, the treatments for adeno are 1. BC pills 2. progesterone only 3. progesterone or danazol IUD (local delivery, danazol is an androgen) 4. Lupron (but don't do it) 5. hyst (or partial or just adeno lumps=alt hyst, see Dr. Toaff)

Here are some useful links a friend sent me. I found http://humupd.oxfordjournals.org/cgi/reprint/4/4/323.pdf the most interesting. In it the author says he uses rectal suppositories of a strong antinflammatory, indomethacin, for the pain (C. Wood 334).

Dr. Redwine has a good article here http://www.endometriosistreatment.org/html/adenomyosis.html addressing adeno. Also, Dr. Toaff talks about possible treatments here: http://althysterectomy.org/adenomyosis.htm. Unfortunately, he talks about the use of Lupron, etc. as an option. I'm sure you're not looking to have that! Dr. Cook also talks about adeno here: http://www.drcook.com/adca14.html. Lastly, there is an older, but really good, in-depth journal article here which you can access in full: http://humupd.oxfordjournals.org/cgi/reprint/4/4/323.pdf. You might find that interesting reading (I hope so!).

UAE (uterine artery embolization) is also a novel area of treatment for adeno; you can read one study on the limited efficacy of that procedure here: http://cat.inist.fr/?aModele=afficheN&cpsidt=1097198.

Jenn

At Mon, 18 Dec 2006, Kristen wrote: >
>Hi,
>
>I have been dealing w/ endometriosis and polycycstic ovarian syndrome
>for about 6 years now, and was just recently diagnosed also w/
>adenomyosis. I am still trying to find something to help. I have had
>several laps, tried all different pain meds, depo shot and will probably
>move onto trying lupron soon. The pain is too much...it is affecting
>everything in my life. Fortunately, I already have two children and w/
>my second, i had a c-section and had my tubes tied at the same time. So.
>a hysterectomy is not a huge deal to me, buy my doctors insist i need to
>remove my ovaries, not just my uterus to get relief, b/c of my endo
>also. do you have endo? Were you recently diagnoses w/ adeno? I hope
>you find something that helps, i do get some relief w/ a bath, three
>motrin and two percocets...you may want to give it a try. are you
>taking any meds now for the pain?
>feel well,
>kristen
>
>At Mon, 18 Dec 2006, anonymous@obgyn.net wrote:
>>
>>Hi
>>
>>Has anyone had adenomyosis with severe menstral pain? If so, have you
>>found anything that helps?
>>
>>Thank you
>>
>>Jenn

Next message: Jamie: "Painful Intercourse Help"
Previous message: Erica: "Sacroiliac joint pain and Lupron.. any connection?"
In reply to: Kristen: "Re: Adenomyosis with severe pain?"

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