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.
Resources:
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!
Head on over to our little store https://teespring.com/stores/bloomin-uterus (only the mug and sticker are presently active…shirts will go on sale once more in Feb. 2018 before our Endo Walk).
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).
What a week. So much tragedy in the news: explosions, shootings, fires…so much death and despair. Well, it’s Friday – so let’s turn end it on a positive note; shall we? I couldn’t decide on one quote today, so I’m sharing a few with you.
“There is a saying in Tibetan, ‘Tragedy should be utilized as a source of strength.’ No matter what sort of difficulties, how painful experience is, if we lose our hope, that’s our real disaster.” ― Dalai Lama XIV
“A person’s tragedy does not make up their entire life. A story carves deep grooves into our brains each time we tell it. But we aren’t one story. We can change our stories. We can write our own.” ― Amy Poehler
“All I could think about as I stood there was that sometimes life gave you a tragedy that burned everything you knew to the ground and changed you completely. But somehow, if you really wanted to, you could learn how to hold your breath as you made your way through the smoke left in its wake and you could keep going. And sometimes, sometimes, you could grow something beautiful from the ashes that were left behind. If you were lucky.” ― Mariana Zapata, Wait for It
I hope you have an incredible weekend. Spent some time with friends and loved ones.
Blogs I’ve Updated This Week:
C-Sections and Endometriosis – added a new study from the Journal of Osbtetrics and Gynaecology Canada who developed a mass in her c-section scar.
Ongoing Research Studies re: Endometriosis – updated new studies (and deleted completed studies) around the globe that YOU may be able to participate in to further research for Endometriosis.
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.
❤ Lisa
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
Dungeons & Dragons & Donuts – added the tale of our 3/12/17 campaign in preparation of our next session…this SUNDAY!
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
Here I go again, once more intrigued by Endometriosis growing in odd places inside the body. Today I’m going to focus on the appendix. I’ve read that many women have their appendix removed because physicians may confuse Endometriosis pain for the symptoms of appendicitis. But on Tuesday an article hit my email about Endometriosis growing on the appendix…and I became obsessed.
Please remember: I don’t write this to scare you, or freak you out, or say that all of your right-sided abdominal pain is from Appendix Endo. Take a deep breath – I like to document these things in case anyone would like to discuss it further with their healthcare providers so they may be aware during surgery. Appendiceal Endometriosis is considered extremely rare and it is suspected that only 1-3% of all cases of Endometriosis involve the appendix. But…knowledge is power.
What & Where is the Appendix
The appendix is part of the gastrointestinal tract attached to a section of the large intestine, where it meets the small intestine. It is located in the lower right section of your abdomen, and is a skinny 4″ long tube. If you have pain in that location, especially when it’s pushed on, physicians may suspect appendicitis.
Appendix: Necessary Organ or Leftover, Useless Tissue?
Depending on who you ask, the appendix does (or doesn’t) serve a purpose. Hence why so many people no longer have theirs. If it’s inflamed, it’s typically removed.
Many believe the appendix to be a “vestigal organ” or an organ that used to have a purpose, but has since evolved into uselessness. Recently, though, some researchers have theorized that the appendix is not a useless flappy tube, rather it houses good gut bacteria – aiding in recovery from GI issues and illnesses and strengthening the immune system.
Is it useless? Does it safely store good gut bacteria? Who really knows…
Endometriosis versus Appendicitis
Symptoms of appendicitis can include fever, abdominal pain, abdominal swelling, loss of appetite, vomiting, an inability to fart (yes, I said “fart”), constipation, or diarrhea. Many of these symptoms can mirror complaints and symptoms of Endometriosis. Hence, an often misdiagnosis of appendicitis.
Appendicitis may develop because of inflammation, an infection, or even a blockage to the appendix. When infected or blocked-up, the bacteria inside the appendix goes nuts, the appendix can fill with puss and swell up. If left untreated, it can burst or rupture…which simply means it tears. It shouldn’t pop like a balloon. If it does rupture,the nastiness-fluid from within can spread all over the pelvic cavity, which may infect other organs or even cause sepsis, which can be fatal.
Is every bit of lower right-abdominal pain associated with appendicitis? No. It could just be something you ate, bad gas, period cramps, anyyyything. Or it could be appendicitis. AND some women with Endometriosis of the appendix don’t have any symptoms – it’s just discovered by accident.
But that being said: sometimes Endometriosis can affect the appendix…One study stated that out of 1,500 appendectomy biopsies, 0.80% had Endometriosis. I’ve read that some surgeons believe that the appendix should be removed during Endometriosis excision surgery as a preventative measure, even if it appears healthy.
If you’re worried, please do your research and talk to your healthcare provider. As usual, there doesn’t appear to be any type of pre-operative diagnostic tests for the presence of Endo on the appendix. Ya gotta go in and see it for yourself…aka surgery.
Now, for the SCIENCE!
Documented Cases of Endometriosis on the Appendix
And before you bury yourself in reading numerous cases of women with Endometriosis of the appendix, I wanted to share an image with you of what Endometriosis on the appendix can look like. Dr. Andrew S. Cook of Vital Health took this photograph during an excision surgery and has granted me permission to share it with you today:
Photo by Dr. Andrew S. Cook, Vital Health Endometriosis Center; used with permission
Endometriosis on the appendix is nothing new – as my research will show.
The earliest published study I found online featuring Endometriosis on the appendix was published in 1929 in the Canadian Association Medical Journal. It covered three cases of women with Endometriosis: one with an Endometrioma, the second with Endometriosis on her appendix, and the third with Endometriosis in a surgical scar. I find it incredibly interesting that they dissect the theories of Endometriosis for each: contributing the first to Sampson’s theory, the second they simply note as “an unusual situation”, and the third they cite the German’s theory of tissue change (metaplasia). Just a fun little piece of historical literature on our disease. (I sense a new obsession festering…)
In 1960, medical records were reviewed from 30 appendectomies which occurred between 1919-1955 at St. Luke’s Hospital in Chicago, Illinois. Each was pathologically confirmed as Endometriosis of the appendix. Of those 30 women, 11 presented with symptoms which mimicked appendicitis. Four of those 11 presented with pain at the onset of their periods. It was noted that none of the 30 women had recurrent symptoms after their appendectomies, although many of them were found to have pelvic Endometriosis. Sixteen of the 30 women also went through partial or full hysterectomies at the time of their appendectomies.
In 1975, researchers combed through medical records of the Kapiolani Hospital in Hawaii and reviewed 12 documented cases of appendiceal Endometriosis, ranging from 1968-1973. During those years, the Hospital performed 1,496 appendectomies – of those, 12 tested positive for Endometriosis of the appendix. Additionally, the researchers interviewed the 12 women for further details and information. Many were found to have Endometriomas during surgery, too. Seventy-five percent of those women complained of abdominal pain prior to their surgeries. Which means, some didn’t – they had complaints of lower back pain and period pain. Unfortunately, the study doesn’t go into detail of how they fared after their surgeries.
A study published in 1981 documents a 23-year-old Nigerian woman who was 35-weeks pregnant and had complaints of vaginal bleeding and right-sided pain. Appendicitis was suspected, so a surgery was performed and her appendix was inflamed and torn. Her appendix was removed and the child was safely delivered by c-section. A biopsy revealed Endometriosis along the appendix wall where the rupture occurred, but nowhere else.
Another study in 1981 reviewed the medical records of 50 patients diagnosed with Endometriosis between 1968-1978 at Mount Carmel Mercy Hospital in Detroit, Michigan. Of those 50, 16 had confirmed Endometriosis of their appendix, the youngest of whom was only 14 years old…and the oldest? Sixty-two! Their complaints ranged from abdominal pain, to heavy periods, to GI complaints. Many had pain located in their lower-right abdominal quadrant. Pre-operative diagnoses included acute appendicitis, uterine fibroids, and ovarian cysts. During surgery, two were found to have ruptured appendixes with abnormalities, six had inflamed appendixes, and eight had normal-appearing appendixes. Seven of the 16 women also had total hysterectomies performed at the time of surgery. Biopsies on all confirmed Endometriosis. After surgery, two had recurrences of Endometriosis and it was later discovered in their sigmoid colons.
In 1983, a study reviewed the literature and medical records from 1950-1981 from the Department of Pathology Frederiksberg Hospital in Denmark. During that time period 10,000 appendices were removed and biopsied. Of those, 22 tested positive for Endometriosis of the appendix. Of all of the medical records reviewed during that time period, 800 patients were found to have Endometriosis.
In 2007, a study was published about a 35-year-old Japanese woman who complained of three days straight of abdominal pain (especially on the right side) and nausea. She had a history of mildly-painful periods, and had finished her last one three weeks prior. She was admitted into the hospital and imaging studies revealed fluid within her pelvic cavity, as well as inflammation of her pelvic lining. The physicians suspected either a perforated/ruptured appendix or a ruptured ovarian tumor or dermoid cyst. Surgery was performed and the appendix was found to stuck to her abdominal wall and was also “markedly enlarged” – so it was removed. Biopsies confirmed the appendix wall had been infiltrated with Endometriosis and likely caused her appendix to rupture. She was discharged two weeks later and was doing well.
In 2008, a study was published about two women in Turkey with appendiceal endometriosis. A 45-year-old woman went to the ER because of severe pain and nausea during the second day of her period. Lab work and imaging studies revealed nothing out of the ordinary, but she was tender to the touch. Due to the progressive severity of her pain while at the hospital, a laparotomy was performed and her inflamed appendix was removed. The interior wall of her appendix was confirmed by biopsy to to have Endometriosis present. Secondly, a 41-year-old woman went to the ER because of nausea, painful urination, and severe pain on the right side of her abdomen. Again, testing appeared mostly normal and due to the progression of her pain, surgery was performed. Her appendix was “covered with a brown-dark red colored material.” A ruptured endometrioma on her right ovary was suspected as having released the fluids throughout. Biopsy results yielded Endometriosis.
In Africa, a 2008 study was about a 25-year-old woman checked into the hospital with complaints of right-sided abdominal pain for the past day. She was also nauseous and vomiting. Lab results were normal and she was sent home and told to consult with a gynecologist. Three months later, she again went to the hospital with identical symptoms. The lab results were normal, but she was admitted for two days, then released. Four months later, she returned. This time she had the abdominal pain with diarrhea, but no nausea or vomiting. Tests showed she had a small cyst, and she was admitted for five days. Upon release, she was urged to consult with a gynecologist and a psychiatrist (I wish you could sense my anger as I typed that last word…). Nine months later, she was readmitted to the hospital for the same issues. This time, they performed an appendectomy and her appendix appeared normal…that is, until biopsy (yes, you guessed it) – it confirmed the presence of Endometriosis on her appendix.
In 2010, a study was published about a 29-year-old Japanese woman who had right lower abdominal pain for two days. She had similar symptoms about a year prior. She had a history of painful periods, accompanied by fever, and had been treating with her gynecologist with traditional Chinese medicines. Imaging studies showed a slight calcification and thickening of her appendix wall and she was diagnosed with acute appendicitis, and sent off for am immediate appendectomy. It was removed, appeared mildly inflamed, and was sent off for biopsy. You guessed it: Endometriosis. After surgery, she had no residual pain or feverish periods.
A 2011 study was of a 36-year-old Greek woman who complained of abdominal pain, swelling, constipation, and an inability to flatulate (is that a better word than farting? I think not. I still giggle.) for the past three days. She had a history of using contraceptive pills and painful periods. Imaging studies revealed a large blockage in her intestine which they presumed to be a tumor. She underwent an laparotomy, and they discovered numerous adhesions, an inflamed appendix, and her bowel was incredibly swollen. They removed the adhesions and her appendix and resected a large portion of her bowel. Pathology reports confirmed Endometriosis on her colon and her appendix. She treated with Triptorelin (a GnRH agonist) for her Endometriosis and six months later she had to undergo a second surgery to restore her resected bowel. No Endometriosis lesions were found and she was doing well.
A South African study published in 2016 study discussed a 33-year-old woman who had been suffering with infertility, even after three IVF attempts. She complained of pain to the right side of her abdomen for the last four hours, and was nauseous. She was hot to the touch, and tender at the right side of her stomach. Her pregnancy test and urine tests were normal, but given her infertility a CT was performed, which revealed a mildly-enlarged appendix, and let her physicians to suspect the onset of appendicitis. Laparoscopy was performed to remove her appendix, which was was visually inflamed, and while inside they noticed a “reddish brown area” on her uterus, which was excised and biopsied. Endometriosis was confirmed on her uterus and her appendix biopsy came back negative for appendicitis. However, her meso-appendix (a flap of connective tissue between the appendix and the ileum) did come back as having Endometriosis on it.
A study published in a Canadian journal in 2016 was about a 34-year-old woman who went to the ER due to right-sided abdominal pain. For the past several months, the pain had returned during her period, which she also started the day before she was admitted. All of her tests came back normal (except for a cyst spotted on her ovary), and she was discharged home. Five days later, she returned due to worsening pain. Due to the suspicions of appendicitis, surgery was ordered. Her appendix was not inflamed, but did have what was suspected to be a tumor – so the appendix was removed and sent off for biopsy. The results came back that Endometriosis was on involved with the appendix and mesoappendix. After surgery, she did not have any recurrence of pain.
Another 2016 study was of a 65-year-old woman in Turkey who had abdominal pain and nausea for the last 24 hours. She had pain on the right side of her abdomen and lab tests showed elevated inflammatory markers and enlarged appendix. An appendectomy was performed and a “brownish mass” was found on her appendix. A biopsy confirmed it was Endometriosis. She had no recurrent symptoms 30 months after her surgery.
In June 2017, the IJRCOG published a study from India of a 26-year-old woman with a history of Endometriosis. A year prior, she was diagnosed with an endometriotic cyst, and given six months of Lupron Depot, followed by a birth control pill, and was pain-free. Her pain returned chronically in her lower abdomen and she returned to her physician. She was one injected with Lupron Depot, but a week later her pain was so intense she went to the emergency room. Testing results raised suspicions of appendicitis. She underwent a laparoscopy, and she was found to have a dense adhesions, a frozen pelvis, and an inflamed appendix. Her appendix and adhesions were removed and upon biopsy her appendix was confirmed with Endometriosis. The authors conclude that appendix endometriosis is “very rare” and preoperative diagnosis is next to impossible.
There were many, many more studies I did not highlight here. So many!!!
Again, if you’re worried, talk to you doctor. Supposedly it’s very incredibly rare to have Endometriosis of the appendix, but it does happen.
Journal of Medical Case Reports (July 2011) Rectal Endometriosis Causing Colonic Obstruction and Concurrent Endometriosis of the Appendix: A Case Report
~ 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
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.
