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

It’s Not Always Bad…

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So, I blog a lot on here about the symptoms of Endometriosis, the misery, the agony, the pain (both physical and emotional).  I share your stories, some good, some bad.  I do all I can to make this disease real to people who may not understand it.

But today, I want to share that there are times where this battle may not be all bad.  I often feel guilty for the good days.  BUT there are good days…and I hope that if you suffer from Endometriosis, that there are times when you have a good day here and there. Embrace those days.  Hold onto them to help you get through the painful ones.

It could be the effects of my 2016 excision surgery.  It could be I’ve been trying hard to be good with my diet.  It could be that I skipped my period in October completely (and, no…I’m not pregnant).  It could be that my recent cataract surgery stressed out my body and threw my cycle out of whack.  Whatever the reason, this October has been absolutely incredible.  Sure, I had the cramping on October 14th, but that totally turned out to be triggered by constipation. Yes…poop.  I talk about that here, too. *wink*  I’ve discussed this skipped cycle with my physician and I’ll just be tracking them until my annual check-up next April.

I cannot stress how important being able to experience a pain-free day can be to your mental health and quality of life.  I wish all of my EndoSisters could have them more often…or, in some cases, just have one!

I do not know what made October so different, but I leave you with these pearls:

  • Find a physician that listens to your concerns and needs.
  • Find a surgeon who is familiar with Endometriosis and who practices excision (not ablation).  I cannot stress this enough.
  • Identify and eliminate foods that trigger or worsen your symptoms.
  • Do not be afraid to ask for stronger pain medication.
  • Seek complementary forms of treatment.  I’ve heard great things about acupuncture, pelvic floor therapy, meditation, biofeedback, and supplements.
  • Bond with a support group.  Share ideas, share your story, learn from one another.

I’ve no idea if November will be as marvelous as October.  But there’s only one way to find out.  And you can rest assured I’ll keep you posted.

I hope that you are able to celebrate the good days.  And if you aren’t allowed a pain-free day, I hope that you have at least a good moment during the day.  Take a breath and savor it.

Pelvic Pain Solutions: Limited Time Discount!

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http://www.pelvicpainsolutions.com

Our friends at Pelvic Pain Solutions are offering a deal for our Readers. ❤

If you’re in the market for pelvic seat cushions or pelvic therapy pads, you’ll receive 15% off by using the discount code, LW15!  But hurry…the coupon expires on November 1, 2017.

If you haven’t heard of Pelvic Pain Solution’s pelvic therapy pads, they offer hands-free hot or cold compresses: the EndoFEMM Pad, the Endo-lite Travel Pad, the  Pelvic Floor pad (which extends from pelvic bone to tailbone), and the Multi-Comfort Pad (which sounds divine: coverage of the tummy, pelvic area, lower back, and tailbone!)  I have my EndoFEMM and freakin’ LOVE it!  I wrote a little review of my experience here.  I own the full size and the travel size versions.

I’m workin’ the fitting the pelvic seat cushion into my budget, but Pelvic Pain Solutions (and other people who have purchased them) say they’re helpful for pelvic discomfort and relieving pain and tension.  I’ve recently discovered the life-changing benefits of having a lumbar pillow on the back of my chair at work at in my Jeep and have high expectations for a pelvic cushion!

Thanks, Babette, and everyone at Pelvic Pain Solutions for all that you do. ❤

 

#MakeItVisible Campaign!

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For the month of October, Healthline is hosting an awareness campaign of ALL invisible illnesses and they’d like OUR help!

Do YOU have an invisible illness?  Why not participate? There are two weeks left in October. 🙂  Let’s inundate the internet!

WhyTo educate and raise awareness that not all illnesses are inherently visible and to raise financial support for the U.S. Pain Foundation in support of all invisible illnesses.

WhenThis campaign was launched on October 1 and will continue through October 31, 2017.

What: Share an image on Social Media that makes your condition visible with the hashtag #MakeItVisible. For every #MakeItVisible submission Healthline is donating $1 to the U.S. Pain Foundation until we reach our $5,000 goal. 

Who: You! With your support, Healthline will be able to bring more communities in to unite and honor all invisible illness communities in order to break the stigma that one has to “look sick” to be living with a condition.

Endo & Nutrition Workshop in San Diego!

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Optimal Nutrition to Manage Endometriosis

Join us for a discussion on how diet and nutrition can best support those living with Endometriosis. Merritt Jones is an EndoSister, certified nutritionist, licensed acupuncturist and primary care provider here in San Diego. She is excited to share with you what she’s learned over the years about how nutrition can impact Endometriosis.

We’ll discuss:

– The connection between food, digestion and endometriosis

– Foods that reduce inflammation/reduce endo signs and symptoms

– Foods that may make endo signs and symptoms worse

– Tools to manage endometriosis signs and symptoms naturally

– The emotional implications of nutrition for Endo (you don’t have to be perfect!)

– Much more!

Date:  October 25, 2017

Time: 6:00pm – 7:30pm

Location: Mission Valley Library (in their Community Room); 2123 Fenton Parkway, San Diego, CA 92108

If you’d like to come, please email me here.  Space is limited.  As usual, this is FREE!

If you’d like to share with others, we also have a Facebook event page:  https://www.facebook.com/events/727045307488736

If you have a question for Merritt (even if you can’t attend), please feel free to e-mail her confidentially at Merritt@JonesFamilyAcupuncture.com. There is no question too silly/personal etc.

 

Free Endometriosis Webinar: Dr. Justin Lin

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Our good friends at the Endometriosis Family Support Group in Riverside at doing it again! July 19, 2017, they’re offering a free online webinar by Dr. Justin Lin entitled “Fearing Endometriosis and Your Function.”

If you’d like to log on and attend, please email Megan at Megan@RMCcharity.org or follow this link.  Registration is free, but required.

A huge thank you to Megan and the Endometriosis Family Support Group for all that they do!  For more information on their organization and when they meet, please click here.

 

 

 

Endometriosis in Rhesus Monkeys

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In the past, I’ve written about Endometriosis being found in two mandrillus sphinx,  a German Shephard and cynomolgus monkeys.  I know when I think of Endometriosis, I often simply think of it as a women’s disease…but have to remind myself that men can get it, as well as animals.  A study hit my inbox this morning about monkeys, rhesus macaques, developing Endometriosis.

The 2017 study published in Primate Biology discusses rhesus macaques (aka rhesus monkeys) that were housed at the Biomedical Primate Research Centre in the Netherlands and the New England Primate Research Center in the United States.  Not only did the study discuss the spontaneous development of Endometriosis in these creatures, but it focused on the genetic similarities between humans and these monkeys in the hopes of continuing the studies of finding genetic links to the illness.

Eight monkeys from the Biomedical Primate Research Centre had Endometriosis.  Their ages ranged from 12 to 21 years of age; none had prior surgeries.  Seventeen monkeys from the New England Primate Research Center had Endometriosis, and they ranged from 12 to 20 years old.  Four of those 17 had previously delivered offspring via cesarean sections.

In both facilities, the monkeys were housed in large social groups in the hopes of “mimicking the natural ecology” of uncaptive life. They were fed monkey chow, fruits, vegetables and grains.   And, as a matter of procedure, anytime an animal passed away (either naturally or by euthanasia), an autopsy was performed.  Tissues were flash frozen and set aside.  The study reviews those detailed medical and histology records of each monkey, as well as any preserved tissue samples.  Almost all of the monkeys were of Indian origin, with the exception of a few mixed breeds and one with Burmese descent.

Many of the monkeys who were posthumously diagnosed with Endometriosis had previously exhibited the usual signs and symptoms: bloating, pain, painful periods, or “cystic lesions” detected via ultrasound.  Every time I read of an animal with the disease, it breaks my heart; we, at least, can express our pain.  They cannot.

The DNA and genetic analysis of the study goes waaaaaay over my head…so I’m not even going to try to summarize it for you.   It did clearly mention; however, that it may result in an altered immune response, which may affect Endometriosis.  But you can read it for yourself via the link in the Resources section below.

As usual, more studies are needed!  And that’s the hope: to spawn one that may lead to a better understanding of the cause of Endometriosis.

Resources:

Primate Biology (Article, June 2017) – Spontaneous Endometriosis in Rhesus Macaques: Evidence for a Genetic Association with Specific Mamu-A1 Alleles

Primate Info Net

~ 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