Comments on: New Understanding of the Causes of Endometriosis Offers Hope for New Treatment

By: Shelley Binkley

Shelley Binkley — Sat, 30 Apr 2011 16:11:16 +0000

Hi, I’m sorry the link is broken. I’ll try to get it fixed quickly. Aromatase inhibitors (e.g. anastrazole) block estrogen production at the cellular level. By blocking estrogen production within endometriosis implants, they may have value in reducing the size, number, and overall burden of the implants (e.g. production of inflammatory molecules). Some studies have shown 30-50% reductions in endometriosis symptoms with a 90-day trial of daily anastrazole. There are also more recent studies emerging on the use of progesterone-blocking chemicals to treat endometriosis, fibroids, and adenomyosis. I will try to put this information on the site as soon as I have the time to get it together and assemble it inot a coherent post. Thank you very much for your comment and for reading the blog. -SB

By: liz

liz — Tue, 19 Apr 2011 20:24:06 +0000

Hi everyone i need your suggestions this is my endo story. I am 19 right now and was diagnosed with endo at 11. I have had 2 surgeries for it in the past. i have tryed everything out there to start with birth control taken normally, birth control skipping placevos,and then taking the first three placevos and then another month only 2.i have tryed every kind of birth control on the market. when i was younger my periods were HORRIBLE i would where childs diapers as pads and would go through about 12-14 a day. Then i was put on a pill that quit your period with birth control. then i went to see this one of a kind specialist who put me on lupron then once it wore off my period started. went back on lupron and birth control at the same time so that when lupron quit birth control would work. nope didnt work. now im back on lupron for the last time with another birth control but i am not thinking it will work. along with it all i have severe back pain from endo i am on anti depressants for the back which helped but now quit so they up the dose and is ok but not working as well as hoped. Also i have interstital cystitis. please help me with all of this i am young and want to have kids someday!

thanks so much,
liz

By: Eve

Eve — Tue, 12 Apr 2011 10:20:40 +0000

I had endo for many years up until twelve years ago when I had laser treatment and then very miraculously fell pregnant with my daughter. She is nearly eleven now, and the endo is back. For the last three years I have suffered with pain in my lower rib region, and have been hospitalised three times. I had thirteen attacks of this abdominal pain always during a period, and was diagnosed with idiopathic pancreatitis. Now there has been a question raised amongst my consultants that the endo could be causing the pancreatitis.. ( I have had scans and the docs say that my pancreas looks perfectly normal but the amalayse count after each attack is high). Is it possible that the endo is causing the pancreatitis? and if so what is the best treatment to erradicate the cause? This is really affecting my home and work life as I am almost totally incapacitated for maybe a week or more every month.. thanks for any comments

By: Shelley Binkley

Shelley Binkley — Mon, 04 Apr 2011 20:48:20 +0000

AI’s can be used “off label” for treatment of endometriosis. In other words, they are FDA approved for one diagnosis (breast cancer), but can be used for other situations if the use is appropriate and scientifically based.

By: diana radu

diana radu — Thu, 06 Jan 2011 13:56:38 +0000

Dear friend,

My name is Diana….I have already been on this site, I am back.
I had 2 laparoscopic surgeries during last 5 years. I thought that I can beat the illness. Last month I tried FIV. Monday we got the result. Negative. No change. I thought I can win.
It was our last chance. I don’t know what to do know. I have a cyst o 6 cm. I should operate, but than I’ll never have babies again. And endometriosis can return, like before.
It is a hopples situation; I am so tired, because of pain, lack of hope, financial issues (in Romania FIV cost almost 5.000 euro.)
I don’t know what else to do, now one knows any treatment, I have tried everything: surgery, medicine- injection and FIV. Nothing works.
Thanks for reading my story.
Wish you all a great life!

By: Sherry

Sherry — Sat, 11 Dec 2010 19:54:10 +0000

Dana, have you been on continuous bc pills without a breakthrough bleed? I am diagnosed with stage 4 endo as well and am a bad case of the disease – 2 laps for large endometriomas on both ovaries with my left ovary stuck to the bowel and uterus. After a few months on Zoladex (GnRH agonist), I am to be on continuous bc pills back-to-back packs with no breakthrough bleed. Any idea how safe must this be?

This is a very interesting and useful website for us endometriosis sufferers. Dr Shelly, are the aromatase inhibitors already available for treatment? Thanks for all your help.

By: Dana

Dana — Fri, 10 Sep 2010 23:29:49 +0000

Discovered aggressive endo at age 14 with two orange size endo cysts on ovaries and endo in various locations within abdominal cavity. Treatment included lap and birth control pills. Still on the pill 20 years later. This seems to have controlled the situation but I don’t live near my original doctor-he was a cutting edge endo doc at the time- Never had children. I’m very concerned about still being on the pill continuously and I’m eagerly awaiting any new treatments. I seem to do ok with “YAZ” although we are thinking I have chronic pancreatitis because of it. Not sure what to do.

By: LuAnne

LuAnne — Tue, 30 Mar 2010 11:49:28 +0000

I am 51 and had a hysterctomy and both ovaries removed 8 years ago. The surgery took 6 hours with several surgeons working to remove all the endo they could find. I started having pain about a year and a half ago saw several Drs. told them it felt like endo they told me not posssible. Six weeks ago I had severe abdominal pain for hours then I had a seizure. My husband called 911, when the paramedics arrived my blood pressure was 50/26. A CAT scan revealed a large abdominal mass (12x7x5)cm. It had been bleeding and this caused the pain and loss of conciousness. After several inconclusive biopsys a lap revealed that the large mass and several smaller ones are endo. The large mass is behind my stomach and surrounded by scar tissue. I have been in pain daily since this happened. I would like to have it surgically removed, but the GI Dr. says it is too risky. The Gyno Dr. says she can’t do surgery on that area. Waiting to see if my health insurance will approve Aromatase as a treatment. I am concerned about bleeding out again, and wondering how effective the Aromatase will be in shrinking the mass and helping to get rid of the pain.

By: sally

sally — Sat, 07 Nov 2009 23:12:49 +0000

I am just finishing 6 months of Synarel and am scared to stop. For the first time in 20 years I have had no pain. I have stage IV endo in usual placves and on bowel nd diaphragm. Any ideas what I can take after Synarel? I love it. I had hot flushes, tiredness and a bit of nausea but no pain, clear skin and lost weight. Want to take it for ever!

By: Shelley Binkley

Shelley Binkley — Sun, 11 Oct 2009 23:59:25 +0000

I can’t make recommendations specific to your situation without doing a full history and physical. However, Mirena is a good option for some women with endometriosis. Other options include Lupron, aromatase inhibitors, and laparoscopy (surgical evaluation for diagnosis and treatment of pelvic pain). People who don’t respond to one treatment for endometriosis will often respond to another. Some women seem to have “progesterone dominant” endometriosis, and respond to Mirena well. However, other women seem to have “estrogen dominant” endometriosis; and they respond better to suppression of estrogen pathways with either Lupron or aromatase inhibitors. There is some scientific evidence to support this: biopsies of endometriosis implants from women with “estrogen dominant” endometriosis seem to have greater capacity to produce and respond to estrogen; while the complement is true in women with “progesterone dominant” endometriosis. If you’re not responding to a treatment within 3 months of using it, it may be beneficial to evaluate other options.