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. ❤
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!
Why: To 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.
When: This 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.
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.
– 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!
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.”
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.
Primate Biology (Article, June 2017) – Spontaneous Endometriosis in Rhesus Macaques: Evidence for a Genetic Association with Specific Mamu-A1 Alleles
~ 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
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
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.
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:
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.
~ 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
One of our readers, Harley, emailed me a question and I thought I’d put it out there for you to help:
“Can you post and ask questions for Life after Lupron? Specifically weight gain? I’ve read the whole thread on life after lupron but still haven’t quite found a lot of information. My last shot was May 8th so I’m slowly waiting for Lupron to get out of my system. I’ve been on lupron for 8 months now and I’ve gained 30 lbs. I’m so exhausted all the time that I don’t have the energy to work out at all-I usually go home and go right to sleep after working my full time job. I’m wondering if it will be possible to lose this weight, if my body will ever go back to normal, or if this is all my new normal now. I’m really open for anything to get this weight off-I’m miserable.”
If you’ve been on Lupron Depot, please let Harley know your own experience with how long it took for the side effects to dissipate and if you ever truly felt normal afterward.