Thalidomide. The drug which is known to have a side effects list a mile long, including neuropathy in people taking the drug, and severe birth defects in children born to parents taking the drug. The drug which comes with the following warning, “you should know that thalidomide is present in your blood and body fluids. Anyone who may come into contact with these fluids should wear gloves or wash any exposed areas of skin with soap and water.”
Does that mean that people taking Thalidomide should not be working? I’m a school teacher with stage III endometriosis and ovarian endometrioma - I’m your perfect candidate for treatment, but I work with children - wouldn’t they be at risk? Therefore people on this treatment are likely treated as patients - homebound - isolated from the general population, like those with Hepatitis C - unable to share eating utensils and bathrooms, right?

Thalidomide. The drug with such known side effects as “uncontrollable shaking of a part of the body”, “seizures”, and “nerve damage that can be severe and permanent. This damage may occur any time during or after your treatment”.

The first wind I got of Thalidomide being used to treat endometriosis was when I checked my Google News Alerts today and found the article titled, Health News: A pill to treat endometriosis:
By DAILY MAIL REPORTER
Last updated at 1:41 AM on 21st July 2010

“The controversial drug thalidomide is being used to treat endometriosis in a new trial.
Previous smaller studies have shown eight out of ten women went into remission after treatment.
The drug is thought to work by stopping new blood vessels growing.
Endometriosis is a condition where cells that usually line the womb are found elsewhere in the body, such as in the ovaries.
These cells behave in the same way as womb cells, so every month they grow and shed as a bleed. This leads to pain and swelling. It may also cause fertility problems.
The new treatment focuses on a side-effect of thalidomide - blocking the growth of new blood vessels. As endometriosis requires a blood supply in order for the cells to implant and grow, the theory is that thalidomide prevents any new development.
During the U.S. trial, women will take the drug daily for 14 to 16 weeks, and will be followed up six months later.”

I then googled “thalidomide endometriosis” and found the following:

Open Label of Thalidomide in Treatment of Women With Chronic Pelvic Pain Associated With Endometriosis
Summary:
Patients will undergo a standard history and physical examination detailing objective clinical exam findings performed by one of the co-investigators. The research coordinator will obtain baseline values for intensity of pain, quality of life, and coping strategies. Baseline serum levels inflammatory markers will then be measured. Over the course of 12 weeks Thalidomide will be titrated as tolerated to achieve a minimum of a 30% reduction of pain on VAS from week 2.

Start Date: October 2006
Projected Completion Date: February 2010
Status: Recruiting
Phase of Study: Phase 4
Study Type: Interventional
Study Design: Allocation: Non-Randomized, Intervention Model: Single Group Assignment, Masking: Open Label, Primary Purpose: Treatment
Study Information Provided By: University of North Carolina, Chapel Hill
Oversight Provided By: United States: Food and Drug Administration
Sponsors:
Celgene Corporation
University of North Carolina, Chapel Hill

Health Issues Studied:
Endometriosis

Study Interventions:
Drug: Thalidomide

Description:

Study Eligibility Requirements
Genders Eligible for Study: Female
Ages Eligible for Study: 18 Years - N/A
Does Study Accept Healthy Volunteers: No

Inclusion Criteria:
1. Age > 18 years

2. Histologically/laparoscopically confirmed endometriosis

3. Chronic pelvic pain defined as non-menstrual pain for at least two weeks in the
previous month for at least 6 months

4. VAS of 6 or more at baseline

5. Failure, completion or intolerance of standard treatment modalities (oral
contraceptive therapy, danazol, Depo-Provera, Depo-Lupron)

6. Patients must give written informed consent.

7. Patients must be willing and able to comply with the FDA-mandated S.T.E.P.S.
program.

Exclusion Criteria:

1. Pregnant and/or lactating female

2. Users of other angiogenesis inhibitors

3. Current use of Rifampin, rifabutin, barbiturates, glucocorticoids, phenytoin,
carbamazepine, chlorpromazine, reserpine, penicillin derivatives, or St. Johns Wart
in user of oral contraceptive therapy

4. Use of aromatase inhibitors, Etanercept (Enbrel), GnRH agonists (Depo-Lupron), and
Danazol within the past 3 months

5. Use of norethindrone acetate (Aygestin) in the prior month

6. Seizure disorder

7. Hepatitis, or any active infection (upper respiratory infection, PID, etc)

8. History of thromboembolic disease.

9. Baseline neutropenia (ANC < 1000/mm3)

10. Any severe physical or metal illness that would interfere with the completion of the
protocol

11. Illicit drug or alcohol abuse

Study Contacts
Primary Contact Information:
Name: Denniz Zolnoun, MD, MPH
Phone: 919 966 9189
Email: zolnound@med.unc.edu

Study Locations:
UNC Chapel Hill
Chapel Hill, North Carolina 27599 United States

University of North Carolina at Chapel Hill
Chapel Hill, North Carolina 27599 United States

In 2008, the following research was published:
Mechanistic and Therapeutic Implications of Angiogenesis in Endometriosis
Robert N. Taylor, MD, PhD, Jie Yu, MD, MSc, Paulo B. Torres, MD, Aimee C. Schickedanz, MD, John K. Park, MD, MSc, Michael D. Mueller, MD, and Neil Sidell, PhD
Department of Gynecology and Obstetrics, Human Uterine Biology Program, Emory University School of Medicine, Atlanta, Georgia
Address correspondence to: Robert N. Taylor, MD, PhD, Woodruff Memorial Building 4217, Department of Gynecology and Obstetrics, Emory University School of Medicine, Atlanta, Georgia 30322. Email: robert.n.taylor@emory.edu

Published in final edited form as:
Reprod Sci. 2009 February; 16(2): 140–146.
Published online 2008 November 11. doi: 10.1177/1933719108324893.

“…At the present time, the authors are aware of only 1 clinical trial of an antiangiogenic agent for the treatment of pain associated with ovarian endometrioma. In an abstract presented at the 2002 meeting of the ASRM (Seattle), Scarpellini et al59 reported that 8 of 10 women with stage IV endometriosis achieved remission of pain and resolution of ovarian cysts following a 6-month course of combined goserelin (GnRH analog) and thalidomide (300 mg/d). In some women, the symptom relief persisted following discontinuation of the GnRH analog while the patients received only thalidomide therapy. These promising pilot findings are well supported by a series of studies examining antiangiogenesis in preclinical models of endometriosis. Thalidomide was shown to inhibit IL-8, an angiogenic cytokine, in endometriotic stromal cells via interference with the transcription factor NF-κB.6.”

“…Future therapeutic strategies to target VEGF have the potential to block the establishment or progressive growth and invasion of endometriotic lesions. However, we must not ignore the likely teratogenic* actions of these same antiangiogenic drugs and cotreatment with effective contraceptives is prudent in reproductive-age women.”

*te·rat·o·gen
–noun Biology .
a drug or other substance capable of interfering with the development of a fetus, causing birth defects.

This study was reupped in December, 2009, and was supposed to have been completed in January or February 2010, which is why we’re now reading about it in mainstream media like The Daily Mail, UK.

Based upon the last Clinical Trial news in December, 2009, it looks like only 14 women enrolled in this program. That’s an embarrassingly small sample of women. If the researchers are backed by huge Pharma and the FDA, this will pass as legitimate and be marketed to women, if it is not already being done.

And so a whole new generation of women and their offspring will be wrecked by Thalidomide.

Wonderful.

I must note that once again, not only is the treatment worse than the disease itself, but we are still being used as guinea pigs.
Not only do endometriosis patients treated with Thalidomide have to watch where their precious bodily fluids end up, for fear of poisoning others with the toxic Thalidomide, but those women who embark on this treatment must understand that they can NEVER have children, EVER, after putting Thalidomide into their bodies. You KNOW that is not going to get communicated properly.

Why, in the 21st century, must we still be experimented on, just because we are female?

There truly is no hope for humankind.

Columbia scientists working to combat injury-related depression, substance abuse and suicide due to unremitting, persistent pain may have discovered a new way of treating that pain: a powerful analgesic dubbed N60 that leads to neither tolerance nor addiction.

Pain is a perception in the brain triggered by signals sent along nerves in the peripheral nervous system. It is a sensation that serves as a defense mechanism for the organism but how it works is only beginning to be understood. Scientists now know, though, that there are several pathways by which the brain perceives different types of pain.

The research team, led by Dr. Richard Ambron, Professor of Pathology & Cell Biology at Columbia University Medical Center, began to develop N60 after his colleague, Dr. Ying-Ju Sung, Assistant Professor of Clinical Pathology, discovered the pathway that neurons use to inform the brain of an injury. Left uncontrolled, this pathway persistently alters the electrical properties of the neuron, ultimately causing chronic pain. The Columbia team found that a specific protein in the pathway, called PKG, acts like a switch. As long as the switch is on, the pathway is activated and the brain continues to receive signals that are perceived as pain, even after an injury has healed.

Sung and Ambron quickly realized that PKG would be an excellent target for drug development. Since PKG is specific for biochemical signaling involved with chronic pain, shutting off PKG will not prevent a patient from feeling fresh injuries. It also operates in the peripheral nervous system, rather than the central nervous system. This means that a drug that blocks PKG does not have to cross the blood-brain barrier, a formidable challenge in drug development.

“The only drugs that work consistently on chronic pain are opiates and anti-depressants,” said Ambron. “A significant problem with opiates is that extended use often leads to addiction.”

“Everyone is looking for a solution that is not addictive,” Sung added. “There’s increasing concern, from clinicians, patients, and regulatory agencies, with drugs that act on the central nervous system where addiction can develop.”

Once they understood the function of PKG, the team began to work with medicinal chemists in Dr. Donald Landry’s group, also at Columbia, to design a compound that would block PKG from sending signals to the brain. After considerable effort, they discovered N60, which laboratory tests have shown to be a powerful and very selective PKG blocker.

“We found in PKG a well-defined target that has been implicated in several types of pain that are particularly refractory to treatment,” Ambron said. “Now, we have an excellent inhibitor of the target which imparts no evident toxic or behavioral side effects and which also alleviates chronic pain in animal models of nerve injury and inflammation. N60 is non-addictive and non-sedative, and a single dose attenuates pain for at least 24 hours.”

Ambron and Sung believe N60 may have particularly meaningful impact for military personnel, who are at particularly high risk of suffering from chronic pain due to combat-related physical injuries and emotional stress. Recent pilot studies show analgesic effects in an animal model of neuroma, an abnormal growth in nerves. Neuromas can be extremely painful and result from injury to nerves, such as that caused by limb loss from trauma, amputations, or from other surgeries. Additionally, a growing body of research is finding direct biochemical connections between chronic pain and Post-Traumatic Stress Disorder (PTSD), anxiety, depression, and suicide.

Funding to-date has allowed the Columbia team to manufacture pharmaceutical (GMP)-grade compound, ready for studies which will evaluate the safety of the drug.

“We’ve got the drug, we’re confident in its efficacy, and we are actively looking for investors and experienced partners to help us put this through clinical testing,” explains Jerry Kokoshka, a representative from Columbia Technology Ventures, the university office that oversees commercialization of novel technologies. “Anyone who has ever experienced the suffering of chronic pain, personally or through a family member or friend, knows the intense frustration and emotional burden of this problem.

“We believe a compound like N60 has significant potential to transform the way chronic pain is treated ,” Ambron said. “If it works the way we think it can, we may be able to alleviate chronic pain in some of its most intractable forms without the risk of addiction, a problem that conveys a whole set of economic and social issues for our country and society at-large.”

Source: Columbia Technology Ventures

Copyright: Medical News Today

Think about that - 30 to 40% of women with endometriosis either cannot have a baby, or have to try for years before succeeding in birthing their own child.

Sure, on the bright side, it means that 60-70% of women with endometriosis are still quite fertile.

But let’s look at the numbers again. “This is two to three times the rate of infertility in the general population”, according to IVF.com.

Today, a friend sent me a video about infertility. Please watch this video in order to add to your attempts at understanding the myriad painful emotions a woman with endometriosis has to endure.

It’s not enough to feel like you’re giving birth every month because the endo pain is so bad, but then to find out you actually CAN’T have a child if you’ve been wanting one or just assumed you COULD? Women are crushed, devastated, destroyed by this.

Now, add to that the idea that women still carry around with them even in the 21st century - “It’s taboo to talk about endometriosis because it means talking about my monthly period.”

“It’s taboo to talk about infertility because people act the same way towards me as one who says they have cancer.”

“Well I have BOTH, and it’s destroyed my life, and I am expected to suffer in silence because it’s too depressing for people to know I can’t have a baby, and it’s too embarrassing for others to think about a disease tied to my period.”

Even the Endometriosis Research Center makes it sound like a cake walk, by saying, “While Endometriosis can cause infertility in approximately 35% of women with the disease, with the right treatment and partnership of the right healthcare professional, pregnancy can certainly be achieved by a woman with the disease.”

It’s a fine line, actually. Doctors are still telling women or giving them the strong impression that “you’d better get pregnant now, because endometriosis WILL leave you infertile.”

It’s a myth that endometriosis always causes infertility, but please do not think for one second that women with endo who are infertile can just skip over to the doctor, easily correct the problem, and have a baby right away without complications.

Endometriosis is not what led to infertility for the woman who made the video below. However, her point gets across so well that it is important that everyone sees her video.

What IF? A Portrait of Infertility from Keiko Zoll on Vimeo.

Some of what Keiko wrote on the white board can also apply to those of us with endo - what if we stop defining ourselves by endometriosis? What if we live in the moment instead of living in an uncertain future? And yet, like women with infertility, it seems impossible to stop identifying ourselves by our illness; to stop living an uncertain future; because our illnesses are in our faces, robbing us of our IDEAL lives, stealing precious Time from us.

I made the choice to not have children. People who struggle with infertility have the choice made already, without consent. I may not be ready for children even in my late 30s, but the moment I was told last week that I have a diminished ovarian reserve, the first thing that went through my head was a giant ticking clock, followed by a sense of urgency and panic, followed by a HUGE wave of confusion, since I thought *I’d* decided I didn’t want children.

People can’t understand unless they have their fertility endangered or removed somehow. I’m asking you to watch Keiko’s video, and to share her video, to raise awareness and understanding.

The next time you are strolling through the park, shopping at the grocery store, or walking down your street, take notice of how many parents or parents-to-be are in your line of sight.

The next time you are hanging out on the Internet on your favourite social network, take notice of how many people post about a new baby on the way, or post pictures of their children, or post an ultrasound of a baby in the womb. Take notice, and then really THINK about how that makes a person who is infertile feel to know they aren’t the one who can post such things, who can’t stroll through the park or the grocery or down the street with their biological child or children that they carried to term and birthed themselves.

Thank you.

Let me know how the new site design looks, if it is navigable, and pleasing to the eye.

If you have any question on where certain content might have gone, let me know and I’ll be happy to point you in the right direction!

Thanks so much!