Well, it’s been an extremely busy week for me; sorry I haven’t done much blogging. BUT it’s Friday! Another week is passed.
Today’s quote was provided to me by my Mum, and is from Mahatma Gandhi:
“In a gentle way, you can shake the world.”
Whether it be helping a friend through a hard time, sparking up a conversation with a stranger, helping out with a non-profit, volunteering at an animal shelter, reaching out to those in need, or even something as grand as writing your Congressman ~ the action doesn’t have to be momentous to make a difference.
Have a wonderful weekend. And go shake the world a bit…
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.
Braave – online support network for partners of women with Endometriosis
Woohoo! I got a hankerin’ to do more fundraising! And as usual, all of the profits are donated to the Endometriosis Foundation of America! None of this goes in my pocket. Why should it?
Now’s your chance (well, until July 10, 2017) to purchase your very own Bloomin’ Uterus mug ($10 for an 11 ounce mug) or Bloomin’ Uterus sticker ($6 which is roughly 3″ x 5″…or they have a larger size available, too). After July 10th, Teespring will end this campaign and send everything off to the printer!
Mugs: Enjoy your morning coffee or tea while reading our blog? Why not enjoy it in your very own Bloomin’ Uterus mug? Support Endometriosis research and awareness – 100% of the profits (that’s $2 per mug) are donated directly to the Endometriosis Foundation of America. Don’t have Endometriosis but know someone who does? Surprise them with this beautiful mug. Let it remind them daily that they truly are still beautiful, even on those bad pain days.
Stickers: Looking to decorate? Slap a Bloomin’ Uterus sticker on all the things!!! 100% of the profits are donated directly to the Endometriosis Foundation of America . Spread some Endometriosis awareness! Share some information! Get out there and put stickers on eeeevvvveeerrryyytthhhiiinnnggg!
I will be ordering mine tonight 🙂 Will you?
(If you have any issues with the link or procuring your goods, please shoot me an email, comment, or note).
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:
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.
And it is! Boring adventures, fun adventures, adventurous adventures! But adventures, nonetheless! If you can’t squeeze a wondrous new adventure in every day – try to at least once a week….or once a month. Have fun! Learn new things. Go exploring! Help a friend. Read a book. Step outside your comfort zone…ADVENTURE!!!!
Have a glorious weekend – and may it be filled with some sort of wonder.
Blogs I’ve updated this week:
C-Sections & Endometriosis – added a case study of a 37-year-old woman who developed a painful, leaking lump in her cesarean scar, published in the Feb. 2017 edition of Case Reports in Obstetrics & Gynecology
Endometriosis & The Lungs – added a case study of a 20-year-old who woman continued to cough up blood every month when she wasn’t on birth control pills, published in 2017 by The Japanese Society of Internal Medicine.
Endometriosis On Your Skin – added a case study of a 30-year-old woman who developed painful, bleeding bumps in her belly button after stopping Depo Provera, published in the May 2017 edition of Journal of Rare Disorders: Diagnosis & Therapy.
Support Group – updated to reflect our June 22, 2017 support group meeting
Oh man. If you know me, you know I love my heating pads. I have an electric one by my bed, a microwaveable one for when I’m watching TV, another microwaveable one for work, and even those ones you stick on your clothes for discreet heat.
Well, in April I received an email from Babette, the President of Pelvic Pain Solutions (and fellow EndoSister), offering me a free sample of their EndoFEMM heating pads (you can see them here). If I liked it, I agreed I’d share about my experiences. First off, I thought “free sample” meant I’d be getting like a 3″x3″ square of it so I can take it for a test drive; nope – it was the entire EndoFEMM heating pad in all it’s “Paris Girl” glory! So, here I am today…which means I obviously liked it.
It’s a strap-on kind of heating pad that I can wear around the house, hands-free, and have a lovely, heavy weight and pleasant pressure on my pelvis, as well as constant heat! I microwave it for a minute or two, but ALSO have the option of cold therapy (brrrrrrr, I hate the cold).
First impressions? My husband said I looked like a sumo wrestler, so in good humor I stomped around the house in my best sumo pose. BUT I cannot sing the praises of the EndoFEMM enough – it’s large enough to cover ALL of my painful pelvic area, even my mons! I absolutely looove the heat and pressure on my hips. And if my lower back is giving trouble, I just shift it around so the heat is on my backside. A word of warning, though: it’s HOT – and when you fasten something HOT to your body…you get HOT! So you may want to wait a minute before strapping this bad boy to your belly, or check to see if the heat is okay…
I love it. It’s now my favorite heating pad and I absolutely want to buy the travel size one to keep at work.
So, on April 22, 2017, I started my period. My EndoFEMM arrived juuuuuust in the nick of time. Granted it doesn’t take away my pain and Endo symptoms…but it does ease them. Heat has always been a comfort. And now I have hands-free heat, comfort, weight, and pressure. Like a purring cat on my lap.
Next, on May 20, 2017, I started my period again. And happily reached for my EndoFEMM. Again, I was met with warm, heavy, comforting goodness. And HANDS-FREE! I think that’s my favorite part. I just wear my heating pad around the house and can still do things like…pet the cat, reach for the remote, carry a glass of wine from the kitchen to the couch…ha. I love it. The heat lasts for about a half an hour before I nuke it again for 60 seconds. And I never realized just how much I needed the heat on my hips and mons…it’s incredible. An all-encompassing gigantic heating pad.
Anyway, I blab! I ramble!! Just know that this girl loves this heating pad! And thank you to Babette for turning me on to them! Now if my crazy review has led you to their webpage, clicking that little “Buy Now” button, I absolutely insist you update me on your thoughts in my Comments section below. Do you love it as much as I do?
It’s FRIDAY! Even better yet – It’s National Donut Day! 🙂 I hope you’re all reading this with a donut in hand.
Growing up, I loved Pooh. I still do…so today’s quote is from the series written by A.A. Milne:
“What day is it?” It’s today,” squeaked Piglet. My favorite day,” said Pooh.”
I feel like every day should truly be an adventure. A special day. A favorite day! Try to do something nice for yourself, or others, every day – it doesn’t have to be a huge thing…just something small. Possibly as simple as a smile.
Learn a new skill. Or call up an old friend or family member you haven’t spoken with in a while. Hold the door open for someone. Sing in the car cruisin’ down the highway. Try new foods. Visit an animal shelter and pet all the critters. Love yourself.
We’ll be working with Teespring.com over the next few weeks to finalize the shirt design and get the campaign started. If you’d like to buy a t-shirt, stay tuned – and remember, all of the profits will be donated to the Endometriosis Foundation of America!