Aly Needs Our Help: An Endometriosis Survey

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Yesterday we shared Aly’s story with you.  Today, we’d like to share an Endo project that Aly is working on…and she needs our help!

If you didn’t read Aly’s Endometriosis journey, you can do that here.  Or here’s a quick introduction from Aly regarding her project:

I have been struggling with endometriosis for 7 years now plus 7 other chronic illnesses and I am only 21. I am a graphic design student and for my senior project, I want to create a catalog/brochure that would be available in doctor’s office or clinics to:

  • give patients information about the disease
  • ways to help with the pain and symptoms
  • share stories
  • find support
  • to help bring awareness about endometriosis
  • and a way to let women know they are not alone in the fight.

She has created a survey that she is asking people to take to help her with my research to create a catalog/brochure that people won’t just throw away. She’s also open to suggestions for the content, as well.  If you’d like to participate, here is the link to her survey:  https://apps.facebook.com/my-surveys/endometriosis?from=admin_wall&seed=838

I’ve taken the survey and it took a few minutes and had some valuable questions to answer.

An Endo Study in the UK is Looking for Participants

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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.

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An Endometriosis Study Needs Our Help

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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)

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*

 

 

An Update: Endometriosis in Cynomolgus Monkeys

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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

~ 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

 

 

New Study: Endometriosis, Anxiety, and Depression

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A recent study published in New Scientist magazine discovered that mice with Endometriosis proved to be more anxious and depressed than mice that did not have Endometriosis.  Behavioural changes in the mice with Endometriosis led to this conclusion.  It is believed by the authors that Endometriosis actually reprograms the brain, but it’s unknown as to how these changes occur.

Others believe that the anxiety and depression women with Endometriosis experience may be tied to their pain and infertility issues.  They believe that the way the body perceives pain has been altered, which affects anxiety and depression.

The authors hope that their findings now instigate more research as to how Endometriosis affects the central nervous system; not just reproductive health.

I myself will be doing more research into this topic, too!  Expect more ahead!

Resources:

issuu.com – (Article; November 2017) Endometriosis Affects the Brain (if you’d like to read the article, it’s on Page 16)

New Scientist (November 2017) – Endometriosis Affects the Brain

~ 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

New Case Study: a woman with severely aggresive external Endometriosis

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A newly published study about a 35-year-old woman with a case of crazy-insane-aggressive Endometriosis hit my inbox.  I was going to fit it into a previously-written blog about hysterectomies and Endo or extra-pelvic Endo…but it was so fascinating that I decided to create today’s blog entry.

Initially, this young woman had abdominal surgery to remove her right ovary because of a ruptured ovarian cyst.  She subsequently had three additional surgeries to excise Endometriomas (chocolate cysts) and adenomyosis via a total hysterectomy which also took both of her fallopian tubes and remaining ovary.

After her 2007 surgery, her pain levels were still severe and present.  Her physicians started her on daily doses of 2.5mg Letrozole, even though she was already on Danazol every day.    It provided her with some relief and in 2012 she asked that her Letrozole dose be increased to 7.5mg.  Her physicians allowed it, but with it came increased side effects of weight gain, headaches, extremity pain, dizziness, insomnia, and memory impairment.  She asked that they decreased the dosage to 5mg.

With the decrease to 5mg, her Endometriosis relapsed and was found present in her abdominal wall, vulva, and labia majora.  They increased her Letrozole dosage back up to 7.5mg and surgery was performed (and continued to be repeated in the future).  The only pain relief she ever received was after surgeries to remove the Endo lesions and while she maintained an increased dose of Letrozole.

This poor woman had a total of 175 (yep; you read that right) surgical procedures from 1998 to 2013 to treat her aggressive Endometriosis.  Her only pain relief was on a triple-the-usual dosage amount of Letrozole which she then had the severe side effects from the medication to deal with.

I cannot even imagine!!!  Although I do wish the study outlined further details: what types of procedures, ablation or excision, diet, exercise, lifestyle, family history, etc.  A lot of different factors may affect pain and symptoms (although I’m not belittling her experience at all) – I would just really like to know…

If you’d like to read the entire study (and see the photographs), please click on the link below.

 

Resources:

Journal of Clinical Case Reports (Article; 2017) – A Severe Case of Recurrent External Endometriosis in an Ovariectomized Young Woman

 

~ 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

Two New Studies: Endometriosis & Effects on Partners

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In June 2017, two new studies were published both focusing on the effects of partners of women with Endometriosis.

In the first study we’ll be discussing (from The Journal of Obstetrics an Gynaecology Research), 51 partners of women with Endometriosis completed and returned questionnaires.  A breakdown:

  • 75% reported a negative affect on their own day-to-day life;
  • 52% felt their finances were affected (partly due to the fact that their partner’s weren’t able to work as much, if at all);
  • Although 70% of the partners were involved in the healthcare decision-making process, only 34% felt that healthcare providers had engaged them in that process;
  • 80% stated they hadn’t received information about dealing with Endo as a couple;
  • 74% reported on affect on sex life, mostly due to the pain it causes their partners. (All except 8 partners said they could not have sex because of the pain it caused);
  • 56% reported on affect on their relationship; and,
  • It suggested that better education and support be provided to partners of women with Endometriosis.  And it stated, “Involvement of partners from the beginning, normalization of symptoms, and education may assist in dealing with the burden of the disease.”

The second study, published in the Oxford Academic publication, Human Reproduction, included 22 male partners of women with Endometriosis answering questions.  In summary:

  • Nearly half of the participants stated sex was rare to non-existent.  This was due to pain, lack of desire due to medication, fatigue, stress, bleeding before/during sex, or even just feeling unattractive.  Four of the men stated matter of factly that they don’t want to pursue sex because it hurts their partners;
  • It affected the ability of many to have children, or frustrated efforts to conceive;
  • Many men reported a difficulty in their work due to taking time off of work to be with their partners, childcare, or household tasks.  Many of these men felt an added pressure to provide more income due to their partner’s inability to work as much (if at all);
  • New roles in the relationship developed since the diagnosis: accompanying them to appointments, taking time off work to care after surgery, household chores and tasks, child care, and a much deeper support role emotionally;
  • Most men expressed feeling helpless, frustrated, worried, and angry (anger was directed toward healthcare) regarding Endometriosis;
  • The majority of men felt there was a lacking of support for partners of people with Endometriosis.
  • And my favorite?  Many described that since the diagnosis, they’ve learned to become better partners:  caring, listening better, more supportive, has brought them closer, strengthened the relationship.

I am grateful for an understanding and supportive partner, but I also know that many women don’t have a partner who is as understanding.  And that breaks my heart.

If YOU are the partner of someone with Endo and are searching for support, consider joining the Braave support network (they’re on Facebook here); it’s specifically for partners of EndoSufferers.  If you know of any other support groups for partners of people with Endometriosis, please let me know! I’ll add them here.

And, both studies are linked below in our Resources section, if you’d like to read them.

 

Resources:

Braave – online support network for partners of women with Endometriosis

Oxford Academic Human Reproduction (Article, June 2017) – A Qualitative Study of the Impact of Endometriosis on Male Partners

The Journal of Obstetrics and Gynaecology Research (Article, June 2017) – Exploring the Impact of Endometriosis on Partners

 

A 1946 Study on Endometriosis

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While doing a bit of research for a recent blog entry, I ran across a study from 1946 describing Endometriosis.  I found it fascinating!

Written by Drs. Fallon, Brosnan, and Moran in Massachusetts, The New England Journal of Medicine published the study on November 7, 1946, and I wanted to point out some quotes that I found of particular interest:

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To read the entire study yourself, please click here.  Groan if you will at reference to retrograde menstruation, treatment with castration, becoming a baby-factory, regression of the disease once the ovaries are removed, and…a cure. I just severely enjoyed the verbiage and disease descriptions from  70 years ago and wanted to share it with you.

Have a wonderful day!

~Lisa