Suffering from endometriosis?

Calling all endometriosis sufferers, please see this divine note from a blog reader below.  Please participate in this study, if you can as us infertiles need all the help we can get!!

I am writing to you with a professional request that I hope you will consider.  I work for a small US biotech company who has a clinical stage development program for the treatment of endometriosis. While I do not myself suffer from endometriosis, I have interacted through my work with many patients and quite aside from the impact on their fertility, I’ve been extremely moved by their pain and frustration in seeking treatment.  That is why I’m very proud to be part of an organization that may have something new to offer endometriosis patients.  As an aside, this treatment (an oral GnRH antagonist) has already resulted in several women in our clinical trials getting pregnant who had otherwise been infertile due to their endometriosis.   

One of our ambitious goals is to raise awareness of the magnitude of the problem in the US (we’ve collaborated with the Endometriosis Association towards this goal also), however our funding is limited so we are trying to be creative.  At the moment, we’ve just completed an important clinical study and would like use some of these results to gather thoughts from endometriosis patients.  We would like to conduct a market research study with women with endometriosis and ask them how they suffer from their disease, what are their thoughts on current treatment options, what success they’ve had with treatment, and their thoughts on a new treatment that we would describe. With these results we may be able to raise funding to continue our clinical work and actually bring this first in class treatment to market.  It is somewhat difficult to identify endometriosis patients, since disease awareness is low in the general population (and many women are undiagnosed), but I had an idea that perhaps among your readership and readership of other major infertility and endometriosis blogs we could obtain more than enough participation in a survey to get robust results. 

So darling blog readers, please read on and participate in this worthwhile study.  It is just a few questions that you need to copy and paste into an email and send off.  Yay! Love you, mean it.

Neurocrine Biosciences of San Diego, CA (

USA

) is a product based biopharmaceutical company focusing on the development and commercialization of innovative pharmaceutical products to treat unmet medical needs. Our lead product candidate, elagolix, is in Phase 2b trials for the treatment of endometriosis. As part of an outreach program to ascertain the unmet needs of endometriosis patients and raise awareness about this condition that impacts the lives of so many women, we invite you to participate in a patient research survey that will inform our efforts and support us in our continuing development of the registration program for elagolix. The survey is completely confidential, and all results will be used at the aggregate level and only for research purposes. More about elagolix and our company can be found here: www.neurocrine.com. More about our clinical trials can be found here: http://www.clinicaltrials.gov/ct2/results?term=NBI-56418.

 

Please cut and paste the table below including your responses into an e-mail and send to [email protected]. We will then communicate with you directly to request your participation in the full patient survey. Thank you for your help!

 

PLEASE RECORD YOUR RESPONSES IN THE TABLE BELOW:

 

                                                     

QUESTION NUMBER		RESPONSES (#s)
1
2
3
4
5
6
7
A
B
8
9	Email address:

 

1. What is your age? 

<18........................................................................................................ 1

18-24.................................................................................................... 2

25-34.................................................................................................... 3

35-44.................................................................................................... 4

>45........................................................................................................ 5

 

2. Which of the following regions best describes where you live?

 

United States...................................................... 1

Europe.............................................................. 2

Asia (except Japan) .............................................. 3

Canada............................................................. 4

Africa................................................................ 5

Australia............................................................ 6

Japan.................................................................................................. 7

Mexico/ South America /Central America.................. 8

  

3. Of the following conditions, please indicate those that your physician suspects you may have without having made an official diagnosis. Select all that apply.

Infertility............................................................................................. 1

Endometriosis................................................................................... 2

Uterine Fibroids................................................................................ 3

None of the above............................................................................ 4

 

4. Of the following conditions, please indicate those for which you have a confirmed diagnosis by your physician. Select all that apply.

Infertility............................................................................................. 1

Endometriosis................................................................................... 2

Uterine Fibroids................................................................................ 3

None of the above............................................................................ 4

 

5. If you have indicated endometriosis above, which of the following symptoms do you have related to your endometriosis?

General pelvic pain......................................................................... 1

Pain during menstruation............................................................. 2

Pain during sexual intercourse................................................... 3

Bleeding.............................................................................................. 4

GI obstruction................................................................................... 5

Other:................................................................................................... 6

None reported................................................................................... 7

 

6. Who do you consider to be your primary care physician?

Family physician............................................................................. 1

OB/GYN............................................................................................ 2

Other:................................................................................................... 3

 

7. If you have indicated endometriosis above, have you at any time received treatment for your endometriosis? Yes or No

 

A. [If Yes] Please specify the treatment(s) you received?

Lupron................................................................................................ 1

Zoladex............................................................................................... 2

Oral contraceptive........................................................................... 3

Pain relievers (acetaminophen, aspirin, ibuprofen).............. 4

Depo Provera..................................................................................... 5

danazol............................................................................................... 6

Other.................................................................................................... 7

 

B. [If Yes] Please specify when you last received your treatment?

Less than 1 year ago........................................................................ 1

1-3 years ago...................................................................................... 3

>3 years ago....................................................................................... 4

 

8. If you have indicated endometriosis above, currently, at what stage is your endometriosis as indicated by your physician?

Stage I: minimal................................................................................ 1

Stage II: mild...................................................................................... 2

Stage III: moderate............................................................................ 3

Stage IV: severe................................................................................. 4

Don’t Know....................................................................................... 5

9. If you are interested in participating in our full endometriosis survey,  please provide an email address by which details, i.e., the website location, can be forwarded at a later date (this contact information will be not be used for any other purpose nor made available outside our company). Email address__________________________________­­­­­­­.

Comments

[RainbowW]

only person i've ever known personally to have endometriosis was best man at my wedding. she had sufficient pain during her periods to need morphine for pain control. hormone therapy made it worse; surgical removal of the growth only resulted in more growth that was even worse. the internal bleeding was so bad that she'd have abdominal swelling so bad people would mistake her for six months pregnant (assuming they saw her out of her bed, which she'd generally stay in writhing in pain).

she also had been pregnant a number of times, which seemed to end prematurely because of cervical incompetence of one sort or another. she indicated that if she tried it again, they'd have to sew her shut and keep her in bed for the whole thing.

eventually, she opted for a full hysterectomy. that pretty much took care of it.

[Tracey Dixon]

Just a point regarding endo - I have endo, it was diagnosed when I had my ectopic and I was told my tubes were a mess... proceed straight to IVF.

I read in a magazine that pycnogenol (pine bark) helps with endo, so I started taking it.

Penetration pain during intercourse decreased notably. My period cramping decreased notably.

My subsequent IVF cycle was a success.