Research Studies

Research OutSmarts Endometriosis Study is ongoing

| Bloomin' Uterus
ROSE-logo-FINAL1

The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help.  They received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!!  I’ve participated in the study and so can you. Yes, you!!  But you must be over the age of 18 and NOT pregnant or breastfeeding.   Don’t live in the New York area and feel like you can’t help in any way? That’s not true!  You can work via e-mail and express mail.

What’s the study all about?  Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”

What do you have to do?  You sign a consent and answer a few questionnaires.  Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totally optional). When I first participated in the study in late 2014, they only used a diva cup for collecting menstrual blood (which, due to my double cervix, I couldn’t do). But now they’ve offered the use of a small sponge to collect menstrual fluid, too. SO I GET TO DO IT NOW! 😀

I’ve also kept in touch with my contact with the ROSE study and sent them the op reports, pathology reports, and photographs from my 2016 and two 2018 surgeries. If you’ve already participated in the ROSE study and have had subsequent surgeries, please feel free to keep them updated!

Also, the folks at ROSE still need the help of parents, siblings, or children of someone who suffers from Endometriosis.  This goes for men and women!  I know I’ve poked my brothers and mum to help with this one!  Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would).  I always hear, “I wish there was something I can do to help…” and now they can!

Don’t have Endometriosis?  YOU CAN STILL HELP!  The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis.  You’d go through the same process:  questionnaire, DNA sample, period sample (again…this last bit is totally up to you).

Reach out to someone on the ROSE team by contacting them:

Telephone: (516) 562-ENDO (3636)

Email: ROSE@northwell.edu

Webpage: https://www.feinsteininstitute.org/rose-research-outsmarts-endometriosis/how-get-involved/

A flyer for the ROSE Study can be read here if you’d like more information: ROSE Endo Flyer 2018_0522

*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*

Together we can help push for a better understanding of Endometriosis…and one day: a cure.

Online Research Study: Endometriosis – Emotional & Social Effects

| Bloomin' Uterus
Endometriosis Study for Emotional Issues

I’ve learned of a new study that we EndoWarriors can all pitch in to help. A few students at
Cairnmillar Institute in Melbourne, Australia are working on a study regarding the psychological and social impact of Endometriosis in women 18 years old and older.

This survey should take around 25 minutes to complete.

If you have any questions or concerns, please contact the study authors by email . They’d be happy to answer any questions or provide additional information. And again, if you’d like to answer a few questions, they’d LOVE your participation and help.

Endometriosis & the Pancreas

| Bloomin' Uterus
Diagram of liver, stomach, pancreas, and gallbladder

I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.

As usual, this isn’t meant to scare you. Just inform you…

As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!

Continue reading →

Endometriosis & the Kidneys

| Bloomin' Uterus
A doodle of a human kidney pointing at a diagram of the renal system

In the past, I’ve researched how Endometriosis can affect the renal system, specifically the bladder or ureters, and how that could even cause blockages that cause kidney issues and severe problems.

Today, I’m going to talk about Endometriosis and the actual kidney.

A study published in October of 2018 discussed a 45-year-old woman who had flank pain and blood in her urine.  Imaging studies found a mass on her left kidney.  A surgery was performed to remove the suspected renal mass and a portion of her kidney, and pathology confirmed it was an Endometriosis lesion.  It was removed from her “renal parenchyma,” which is the solid part of the kidney that filters blood and makes urine.

Continue reading →

Endometriosis Caused Leaking Out of a Hole by the Hip?

| Bloomin' Uterus
Drainage ditch leaking sewage

What the heck am I talking about?

There’s a study published in August of 2018 that I just read, and it threw me for a loop. So I wanted to share it with you.

A 52-year-old woman went to her Primary Care Physician because she had a weird leaking hole near her right hip.  It just drained a nasty discharge.  He put her on antibiotics for two weeks, but it didn’t resolve.  After suffering from the drainage for two months, she went to the emergency room.  If you’re curious, you can see a photograph of her little hip-hole.

Continue reading →

Orilissa: AbbVie’s New Drug to Manage Endometriosis Symptoms

| Bloomin' Uterus
Screenshot of FDA Drug Label for Orilssa
Screenshot of FDA Drug Label for Orilissa, July 24, 2018

You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain.  I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.

I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same.  And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance).  Orilissa is estimated to hit markets for prescriptions in August of this year.

Continue reading →

An Endo Study in the UK is Looking for Participants

| Bloomin' Uterus
A fountain pen resting on a page containing the definition of research

Are you a South Asian Muslim woman living in the UK and have you been diagnosed with Endometriosis?  This one is for you!

Shabnam Jheengoor is a student at the University of Derby and she is working on her a research study for her Master’s in Psychology thesis.  Her work is being supervised by Dr. Sophie Williams.

She will be exploring the experiences of endometriosis of South Asian Muslim women in the UK.  Why?  Research suggests that culture/faith can influence one’s experience of living with endometriosis. Little is known about the challenges, concerns, needs, and experiences of South Asian Muslim women in the UK with endometriosis.   Shabman wishes to shed some light on that subject.  And offer these women a voice.

Qualified participants will be expected to take photographs of their daily life of living with endometriosis. The participants will be given 2 weeks to take photographs and the choice of photographs is theirs, following ethical photography guidelines of course.

Their participation will remain confidential and anonymous and is completely voluntary. Participants may also withdraw from the research before, during and after participation.

For more information on the study, please check out the participant form or you may contact Shabnam directly by email.  The recruitment period will close at the end of August 2018.  So, if you are able and interested, please get in touch with Ms. Jheengoor.

Recruitment flyer for endometriosis study

An Endometriosis Study Needs Our Help

| Bloomin' Uterus
Research Outsmarts Endometriosis logo

The ResearchOutSmarts Endometriosis (ROSE) Study has been ongoing for a few years and they still need our help.  They’ve recently received the 2018 Innovation Challenge Award for researching potential diagnostic tests for menstrual effluent (aka period blood) – congratulations you guys!!  I’ve participated in the study and so can you. Yes, you!!  But you must be over the age of 18 and NOT pregnant or breastfeeding.   Don’t live in the New York area and feel like you can’t help in any way? That’s not true!  You can work via e-mail and express mail.

What’s the study all about?  Per their webpage, “The goal of the ROSE study is to investigate the causes of endometriosis and bring improved diagnostics and treatments for women with endometriosis…Researchers involved in ROSE are using several approaches to study endometriosis. These include efforts to better understand the genetic basis of the disease and relate this what is occurring at the cellular level in the disease, with particular emphasis on the role of stem cells and the immune system.”

What do you have to do?  You sign a consent and answer a few questionnaires.  Once enrolled, you provide a DNA sample either through a mouth swab or a blood sample (if you’re local), provide an authorization to collect tissue samples from your prior/future surgery(ies), and provide a sample of your menstrual blood (this part is totally optional).

Also, they’d still like the help of parents, siblings, or children of someone who suffers from Endometriosis.  This goes for men and women!  I know I’ll be poking my brothers and mother for this one!  Please feel free to pass the ROSE Study link on to your immediate family members! They would answer a questionnaire, provide that same mouth swab DNA sample (or a blood sample), and have the option to provide some period blood (well, the ladies would).  I always hear, “I wish there was something I can do to help…” and now they can!

Don’t have Endometriosis?  YOU CAN STILL HELP!  The ROSE study is looking for control groups (aka women without Endometriosis) to compare to those with Endometriosis.  You’d go through the same process:  questionnaire, DNA sample, period sample (again…this last bit is totally up to you).

Reach out to someone on the ROSE team by contacting them:

Telephone: (516) 562-ENDO (3636),  send them an email, visit their webpage, or view their Flyer.

*And if you talk to Margaret, tell her Lisa and Bloomin’ Uterus say hello*

An Update: Endometriosis in Cynomolgus Monkeys

| Bloomin' Uterus
macaca_fascicularis - monkey

Last year I wrote about a study involving Endometriosis being found in Cynomolgus monkeys.  Recently, a new study was published in Human Reproduction about those monkeys and Endometriosis, and here I am to regurgitate it to you in my layman understanding.

At the Tsukuba Primate Research Center in Japan, 614 female cynomolgus monkeys were evaluated between 2008 and 2012.  Of those, 29 were chosen to be screened on a routine basis, including monitoring menstrual cycles, fertility, bloodwork (including CA-125 levels), and physical examinations.  Surgeries were performed and 15 of the 29 monkeys had surgically confirmed cases of Endometriosis.

Let me repeat that:  fifteen of the 29 monkeys had surgically confirmed cases of Endometriosis.  These monkeys were not implanted with Endometriosis as lab rats often are.  It grew on its own.

These 15 monkeys ranged in age from 8 years old to 20 years old.  They discovered that CA-125 levels tended to be elevated in the monkeys that had chocolate cysts present and lower in those who did not have endometriomas.  They also discovered that painful palpation examinations and abnormal feces were both commonalities with these monkeys.  Also of note, the monkeys ate less food during their menstrual cycles, which may be attributed to increased pain and a decreased quality of life.

During the time of the study, the remaining monkeys who did not have Endometriosis were monitored to make sure they did not develop the illness.  Four of them DID develop Endometriosis!

Even though the monkeys were small in comparison to humans, the surgeons were able to easily identify Endometriosis lesions (and their various colors: red, pink, brown,  blue, black or white), endometriomas (chocolate cysts), and adhesions while performing the laparoscopies.

Based on these findings, the authors suggest that screening, diagnosing, and monitoring Endometriosis in monkeys should include palpations, fecal monitoring, and CA-125 testing.

The findings of the study were that cynomolgus monkeys with spontaneous endometriosis may prove to be a good model to evaluate the disease, as well as drug efficacy.  I would hate to think that that means they may one day end up as lab rats for drug companies.  My animal-lovin’ brain takes me down that dark path, though.

I am constantly amazed by the presence of Endometriosis in non-humans.  And saddened at the thought that these animals cannot vocalize the pain I know they feel.  But knowing that the illness affects other species makes me hope that it may one day get the attention of the scientific and medical communities that it deserves.

RESOURCES:

Human Reproduction –  (April 2018) – Spontaneous Endometriosis in Cynomolgus Monkeys as a Clinically Relevant Experiment Model (entire article)

~ Again, I am a layman. I do not hold any college degrees, nor mastery of knowledge. Please take what I say with a grain of salt. If curious, do your own research 😉 Validate my writings. Or challenge them. And ALWAYS feel free to consult with your physician. Always. Yours ~ Lisa