Feel Good Fridays

Candles Dark Light Black Fire Flame Fire

Welcome to the first Friday in September. I hope that you’re all doing well. And if you’re not doing well, I hope that you find something happy to cling onto to get you through today. If you need to talk to someone, I’m always around.

For anyone feeling alone, struggling, fighting…you are not alone.

This disease often makes us isolated. We may lose friends or loved ones because of our inablity to attend events, cancelling at the last minute, always “complaining” of our pain, etc. I’ve been there. I’ve lost people, too.

But do you what what? We’ll always have each other. Always.

“So what if the sun isn’t shining? Fearing the darkness won’t make it go away, the only way is to fight it with light, come, let’s all light our candles and stand together, the darkness will vanish…”

― Shahenshah Hafeez Khan

I’m serious: if you need someone, email me.

Blogs I Updated This Week:

Bladder & Endometriosis: Added Nov. 2020 (we jumped ahead to the future!) study released in the Urology Case Reports journal is of a woman who complained of painful urination, difficulty voiding, incontinence, and a frequency to urinate.

Cervical Endometriosis: Added a 2019 study of cervical endometriosis to our ongoing entry of Endo and the cervix. A 24-year-old woman had an abnormal pap smear, chronic pelvic pain, infertility, and painful periods. She had visible violet nodules on her cervix, and surgery confirmed a big ol’ lesion on her cervix…which was discovered only after they “unstuck” her rectum from her cervix in surgery. No other Endo in her pelvic cavity.

Endometriosis & the Appendix: Added a June 2020 study of a 45-year-old woman with Endo on her appendix and cecum to our ongoing blog about endo on the appendix. Have you been diagnosed with appendiceal endometriosis? What were your symptoms, if any? Suspect you have it? Make a note of your symptoms to talk to your doctor.

Endometriosis & the Lungs: added a study to our ever-growing Endometriosis & the Lungs blog entry. This one of a post-menopausal woman who suffered from a collapsed left lung due to Endometriosis lesions. Don’t even try to convince me Endo goes away for everyone after menopause.

Orilissa: Abbvies’ New Drug to Manage Endometriosis Symptoms: Updated our post about Elagolix by adding four Abbvie-funded studies ranging from August 2019-August 2020. They covered Endometriosis-related fatigue, initial dosing, Add-Back therapy, and bone density risks of fractures and osteoporosis. Have you tried Orilissa? What are your thoughts? Did it help? Hinder? Did you feel any side effects? I’d LOVE to add testimonials from EndoWarriors who have been on Orilissa to this blog. I can keep it anonymous if you wish; just shoot me an email or a comment below.

Endometriosis & the Diaphragm

Courtesy of Wikimedia

If you’ve been a long-time follower of the blog, you may remember in 2014 when my surgeon found Endometriosis on my diaphragm. Several years later, it had completely disappeared (yay!). And it hasn’t been found in any of my subsequent surgeries. This research has been a lot of fun because of my own personal journey.

We’ve previously shared Endo Lady UK‘s experience with her own diaphragmatic Endometriosis, as well as a surgery to remove diaphragmatic Endo. We’ve even had a few brave readers, Lyndsay and Tabitha, share their own stories about endo on their diaphragm.

Diaphragmatic Endometriosis is considered extremely rare. Some studies stated that it’s only in 1-1.5% of patients with Endometriosis. So I wanted to explore the published cases and share them with you. And express that such a rarity doesn’t mean you may not have it. You may. You may not.

So, what are the symptoms? Read on!

Symptoms

Here’s a list of symptoms I’ve seen that diaphragmatic endometriosis sufferers reported in the case studies below. You may have some, none, or all of these. And they may be indicative of endo on your diaphragm, or not. You know the drill: it may be endo. It may not. It may be something else completely. But I wanted to lay these out for you in one simple place…if nothing else, to be a springboard to a conversation with your doctor. And several of these symptoms coincide with Endometriosis and the lungs as several instances of collapsed lungs also involved diaphragmatic endo..

  • Coughing, with or without blood
  • Upper arm and/or shoulder pain; usually on the right
  • Upper quadrant pain; usually on the right
  • Pain under the lower ribs
  • Collapsed lung(s)
  • Painful breathing
  • Difficulty breathing
  • Vomiting
  • Nausea
  • These symptoms may worsen around the time of your period, although some people have symptoms constantly
  • Some patients had zero symptoms
  • Some patients exhibited these symptoms even after a hysterectomy

Diagnostic Tools

Diagnosing diaphragmatic Endo, of course, can only truly be done with surgery and biopsy, but here are some diagnostic tests and tools that may be done along the journey:

Medical History

If you do wish to discuss the possibility of diaphragmatic Endometriosis with your healthcare provider, please be sure to write down your symptoms, when they occur, how long they last, how bad they hurt, what other symptoms you have at the same time, etc. The more details you have, the more you can offer while providing the medical history of your complaints.

Feel free to stand up and point to portions of your body that hurt. Or offer a drawing to your physician of specific areas and locations of your pain.

Use descriptive terms. Does the pain burn? Travel across your body? Cramping? Does it linger or fade quickly? Don’t be afraid to let it all hang out.

The devil is in the details.

Physical Examination

The always-present physical examination. You’ll likely be pushed, prodded, poked, palpated, and pressed. If something hurts when they push down, let them know. If it feels weird or maybe doesn’t hurt at all, express that, too. The more information they have, the better.

Imaging Studies

Our favorite…Endo may or may not show up on imaging studies. But some imaging studies came in particularly helpful in the studies below.

X-rays, usually won’t show squat.

Ultrasounds can sometimes show when things are amiss.

CT Scans and MRIs oftentimes showed masses where they shouldn’t be in the cases of diaphragmatic Endometriosis below. That being said; however, it’s not the end-all-be-all of pre-surgery diagnostics. You can still have a lesion and it not show up on studies. So if you get a normal result, but continue to be in pain, don’t be afraid to push for options.

Treatment Options

Of course, I’m a huge proponent of excision surgery, but I know it’s not for everyone! And oftentimes other avenues must be exhausted before insurance will approve one. Every journey is different!

Pharmaceutical Management

Plenty of doctors will push pharmaceutical treatment for symptom management, either before or after a surgery. The options appear to be what they always are: hormonal birth control, some type of pain management, or suppressive medications such as Lupron Depot, Orilissa, Danazol, etc.

Surgery

Here’s where the fun begins. I’ve read about plenty of laparoscopic surgeries to find and remove diaphragmatic Endometriosis, but also several that involved a VATS surgery (video-assisted thoracoscopic surgery).

For those of us not in the know (I know I wasn’t before today), a thoracoscopy is a surgery where a teeny camera is placed through an incision in the chest, which allows visualization outside the lungs and into the space between the lungs and chest wall. It’s usually considered minimally invasive.

And there’s choices of ablation versus excision…but you know my thoughts on that.

Some women (in the studies below) have even had the nerves around these areas of the body burned in order to achieve symptom relief.

And, always always allllways, Endometriosis is confirmed through pathology and biopsy results.

Case Studies

In 1994, La Revuew de Medecine Interne published a study of a young woman who was diagnosed with diaphragmatic Endometriosis and did not have any history of collapsed lungs. The 21-year-old complained of tight pain along her phrenic nerve (the nerve that runs along the lungs and diaphragm) for a year-and-a-half. During an exploratory surgery, they found pelvic Endometriosis lesions on the underside of her diaphragm. After reviewing medical literature for previous cases of diaphragmatic Endometriosis, the authors “confirm that imaging studies are of little value.” So, please never be discouraged if your imaging study yields normal results and you know there’s something hanky. You know your body. And you know when it doesn’t feel right.

In 1995, the Journal of Obstetrics & Gynaecology published a study of a 24-year-old patent who right right shoulder pain when she was on her period. She also complained of painful periods and had been taking a combined birth control pill. Her shoulder was normal upon physical examination. And the rest of her body was also normal. Blood tests were, of course, normal except for elevated levels of CA-125. A chest x-ray and pelvic ultrasound were also normal. They suspected Endometriosis and opted for an exploratory laparoscopy. She had lesions on her uterasacral ligaments and her ovaries were “tethered” by adhesions. They also found four lesions on the right underside of her diaphragm. There is absotely NO mention of any excision or ablation of the lesions around her ligaments, but they stated due to the hazards presented with the diaphragm they opted to leave the spots alone. They treated her with six months of Buserelin nasal spray (a GnRH agonist) three times a day and and add-back therapy (norethisterone). She remained symptom free.

The Japanese Journal of Thoracic Surgery published a 1999 study of a 30-year-old woman who had two right collapsed lungs within two months of each other; both at the start of menstruation. During surgery, they saw “blue berry spots” and a “pinhole” on her diaphragm. They resected a small portion of her diaphragm and sent it off to pathology, which of course came back as Endometriosis. She opted out of hormonal therapy, but unfortunately had recurrent lung collapses and was later placed on five months of Lupron Depot. She had no further recurrence seven months after surgery when the study was written.

In 2002, Dr. Redwine published a study in Fertility and Sterility. He found that seven out of eight patients that underwent laparoscopic resection of diaphragmatic endometriosis lesions resulted in “complete eradication of symptoms.” The eighth had good symptomatic reduction.

The journal of Obstetrics & Gynecology published a study in 2004 of a 50-year-old woman who had a hysterectomy 10 years previously that removed her uterus, right fallopian tube, and right ovary. She went to the hospital with complaints of upper right quadrant pain. A CT Scan found a lesion on her right diaphragm and an exploratory laparoscopy was performed. She had a 4cm cyst on her diaphragm, which was smooshing into her liver. It was thick and contained “chocolate-like material” (sound familiar?). The mass was excised and pathology confirmed it was an endometrioma. There were no other lesions or cysts discovered in her pelvic cavity. The authors stress that although rare, endometriosis should not be excluded as a possible diagnoses even after a hysterectomy.

Suffer from chronic shoulder pain? In 2006, Rheumatology published a study of a 25-year-old woman who had a three-year history of right shoulder pain. It frequently started with her period and was managed with Ibuprofen. A physical examination, x-rays, and blood tests were all normal. MRIs were conducted of the shoulder and of the diaphragm, which showed evidence of recent hemorrhaging of her diaphragm. A laparoscopic surgery was performed and the diaphragmatic lesions were ablated (ugh). After surgery, the client was on a continuous progestogen pill and her symptoms were resolved.

Dr. Camran Nezhat and colleagues published a study in the September 2009 edition of the Journal of Minimally Invasive Gynecology. It discussed the cases of four women who were diagnosed with diaphragmatic endometriosis from June 2008 through September 2008. All four had a medical history of chest pain, three complained of pelvic pain, two had collapsed lungs, two had previous diagnoses of Endometriosis, and three had been on some sort of hormonal treatment. All were surgically treated with a combination of laparoscopy and thoracoscopy procedures. Nine months after their surgeries, the four women remained free of chest pain, and only one had recurrent pelvic pain. They suggest for patients with pelvic and chest complaints, or exhibiting other symptoms of diaphragmatic endometriosis, that a combination of both laparoscopy and thoracoscopy be considered for surgery.

In 2010, the Interactive CardioVascular and Thoracic Surgery journal published a study of a 43-year-old woman who went to the emergency room due to right chest pain. A physical exam revealed diminished breath sounds in her left upper chest. A chest x-ray showed a collapsed right lung and the right side of her diaphragm was raised higher than it should be. A CT scan showed that the liver and a part of her colon had herniated up and into her thoracic cavity. As it wasn’t deemed an emergency, she was sent home to seek a specialist.

Two weeks later, she was seen by a specialist and reported a history of numerous episodes of pain near her scapula, usually a day before her period started. She also complained of right chest discomfort, difficulty breathing, and constipation.

Surgery began with a look in her thoracic cavity. Her liver, gall baldder, and colon had herniated up and into her thoracic cavity as her diaphragm and ruptured in a small area. There was also a small gray nodule discovered on the edge of her diaphragm. They placed her herniated organs back where they belonged, excised the nodule, and repaired her ruptured diaphragm. Pathology came back that the nodule was Endometriosis. The authors suspect that the “invasiveness of endometriotic tissue cause diaphragm fragility, which finally led to its complete rupture…” After surgery, she was given six months of “ovarian suppression therapy.”

In the September 2012 edition of Surgical Endoscopy, a review of seven years of diaphragmatic endometriosis patients was reviewed. Over the seven-year period, 3,008 patients were diagnosed with pelvic Endo. Of those, 46 had diaphragmatic Endo. Each underwent surgery. All but three had excision surgery. The remaining three had “superficial endometriosis” and the lesions and/or nearby nerves were burned (diathemocoagulation). The study doesn’t discuss their surgical outcomes, symptom relief, or recurrence, but does insist that the treatment requires multi-disciplinary care.

The Korean Journal of Obstetrics & Gynecology Science published a 2012 report of a 40-year-old woman who had a recurrent spontaneous collapsed right lungs. Her lung only collapsed during her periods. She had a chest x-ray and a CT scan done, which led to a surgery. They found lesions on her diaphragm, which they resected and biopsied. After they received the pathology results of Endometriosis, she was treated with a GnRH agonist. Unfortunately, the abstract doesn’t mention how she fared after treatment.

In 2018, the International Journal of Fertility & Sterility a 20-year-old woman complained of severe pain over the last year while she was on her period. She had no other complaints. The physical examination revealed two masses affixed to her uterus, and an ultrasound confirmed they were cysts and adhesions. An MRI was conducted and showed normal upper cavity findings (liver, spleen, pancreas, kidneys, lungs), but confirmed the masses along her uterus and sigmoid colon.

Laparoscopic surgery was performed and they found Endometriosis throughout her pelvic cavity, as well as ovarian cysts and adhesions. During that surgery, they explored what they could of her upper cavity. Five to six “areas of superficial endometriosis” were found on the center and right sides of her diaphragm. Those lesions were burned away. An endoscopic exploration of her thoracic cavity was not conducted since her diaphragmatic endo was superficial and she had no symptoms of chest pain, shoulder pain, or collapsed lungs to indicate further involvement of the diaphragm. She was treated with “suppressive hormonal medications” after her surgery.

In the July 2020 publication of The New Indian Journal of OBGYN, a 47-year-old woman complained of a 10-month old cough, sometimes spewing up blood. She also had right upper quadrant pain and right arm and shoulder pain for the past 15 years. The pain and bloody-coughing seemed to follow her menstrual cycle. She had been told previously that she had Endometriosis, but this was a clinical diagnosis with no surgery. Chest x-rays and a physical exam were normal. An ultrasound found a small mass on the right half of her diaphragm, which extended into the right lobe of her liver. Further imaging studies found the mass also extended into the lower lobe of her lung, too.

They presumed it was Endometriosis and a liver biopsy confirmed a diagnosis of liver Endometriosis. Due to her age and “perimenopausal status” (and I’m also assuming the risks and potential complications involved with liver and lung resections) it was decided that surgery would be avoided. Rather, she was treated with GnRH agonists or progestagens. She was non-compliant with the medication and was later readmitted into the emergency room due to ongoing pain. A CT scan found that the endometrioma on the liver had enlarged by 4 cms and the lung lesion was more pronounced. The patient was “counselled” and she agreed to take the drugs with add-back therapy. Three months later, a CT scan found the nodules had not grown. They are hoping she can continue pharmaceutical management of her symptoms.

The authors found that x-rays may help diagnose thoracic Endometriosis, but a CT scan and MRI may be more helpful in further identifying Endometriosis lesions or assist the physicians in ruling out other theories. The study closes on a very knee-jerk-reaction-inducing sentence (well, at least for me):

“Hysterectomy with bilateral salpingo-oophorectomy removes the underlying cause but if hormone replacement therapy is initiated there may be then be a recurrence of thoracic endometriosis.”

Bleh. What a way to close it out. Removing the uterus, tubes and ovaries isn’t a cure, Doctors. It may help some women with symptoms, but it’s not “the underlying cause” of Endometriosis. *sigh* Regardless of my state of irritation at this sentence, I do hope that the 47-year-old patient has lasting relief. And if she decides to pursue it has surgery with a skilled excision surgeon and multi-disciplinary team.

There are plenty more studies out there, but this is all I have digested at the moment. I do plan to add more as I have the time to read them.

My thoughts

As usual, know your own body. Track your symptoms. Feel free and empowered to talk to your physician. Request tests and imaging studies. Find competent care. Pursue whatever avenue of treatment you feel is best for you.

Know that diaphragmatic Endometriosis is considered extremely rare. But, coming from someone who has had it, and after reading the studies above, know that it IS possible.

Advocate for yourself. And get the care you know you deserve.

Do you have diaphragmatic Endometriosis? What are your symptoms? What’s helped (or not helped) you along your Journey? Share with us in the comments below!

Resources

Fertility & Sterility (Feb. 2002; abstract) – Diaphragmatic Endometriosis: diagnosis, surgical management, and long-term results of treatment

Interactive CardioVascular and Thoracic Surgery (Oct. 2010; study) – Endometriosis-Related Spontaneous Diaphragmatic Rupture

International Journal of Fertility & Sterility (June 2018; study) – Endometriosis of Diaphragm: A Case Report

Journal of Minimally Invasive Gynecology (Sept. 2009; abstract) – Endometriosis of the Diaphragm: Four Cases Treated with a Combination of Laparoscopy and Thoracoscopy

Journal of Obstetrics & Gynaecology (1995; Study) – Successful Medical Treatment of Sub-Diaphragmatic Endometriosis

Korean Journal of Obstetrics & Gynecology Science (July 2012; abstract) – A Case of Diaphragmatic Endometriosis Presenting with Catamenial Pneumothorax

La Revue de Medecine Interne (Dec. 1994; abstract) – Endometriosis of the Diaphragm. Diagnostic Aspects Apropos of a Case Without Pneumothorax

Obstetrics & Gynecology (Nov. 2004; abstract) – Symptomatic Diaphragmatic Endometriosis Ten Years After Total Abdominal Hysterectomy

Rheumatology (Dec. 2006; study) – Chronic Shoulder Pain and Diaphragmatic Endometriosis

Surgical Endoscopy (Sept. 2012; abstract) – Laparoscopic Surgical Treatment of Diaphragmatic Endometriosis: A Seven-Year Single-Institution Retrospective Review

The Japanese Journal of Thoracic Surgery (Oct. 1999; abstract) – Catamenial Pneumothorax with Diaphragmatic Endometriosis: A Case Report

The New India Journal of OBGYN (July 2020; study) – A Rare Case of Thoracic Diaphragmatic Endometriosis Invading the Liver and Lower Lobe of Lung

~ 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

Pain Journal: August 2020

Another month is behind us. I have my consultation with my surgeon on September 15th to discuss my deep-infiltrating Endometriosis on my sigmoid colon and (hopefully) schedule a surgery with he and my colo-rectal surgeon to handle it.

So, in preparation for those meetings, I’ve been tinkering with my pain journal with how better to visualize or express my symptoms to others. And here’s what I’ve come up with:

As you can see, while I was on my period (the cells shaded red), pain levels were higher across the board, and more consistent on a daily basis. The “glass guts” feeling when I poop has calmed down a lot to where it’s just a painful sharp stabbing when I go half the time. And pretty much most of the other pain I experienced during the month is an odd sharp stabbing or ache every once in a while on the right or left of my lower abs.

A third of the month, I experienced days of pain of the lower left side (hello, Sigmoid Colon?). And 20% of the month had pain on the lower right abs, don’t ask me why. Most of the 12-16% of lower uterine/middle abdomen pain and lower back pain occurred while I was on my period.

Here’s the usual daily pain and food tracker, if you’re ever interested in the play-by-play:

And I still track my bowel movements and pain on a separate tracker. What goes in must come out, eh? This chart will be of particular importance to me as I head in for my bowel consultations.

During the month of August, I poo’d 41 times. Only 25 of those times were pain-free, so a little more than half. Every date on this chart represents a poo. If there’s multiple dates (like the 3rd, for example), I poo’d multiple times that day. If there’s a blue line, it means it hurt with a regular poo. If there’s a red line, it was diarrhea with pain. So, for example, on August 14 I poo’d and it stabbed through my guts with an 8 out of 10 pain level. Ugh. And the most painful poos (8 out of 10) only occurred while I was on my period. If there’s a date with no blue or red line, it was a pain-free poo.

And the charts continue! Of my August poops, 63% of them were diarrhea. That’s alotta shit. Well, a lot of loose shit…

And of those loose and watery bowel movements, a whopping 64% of them were pain-free. But when it did hurt, it varied between a 1-8 on the pain scale.

What about the logs? Of those solid non-liquid poos, half of them were pain-free also. And when it hurt, it ranged from a 1-8 out of 10 as well.

Overall, I’m super pleased with August. I only needed one Naproxen for my pain, and that was during my period. The four Ibuprofen I took in August were for headaches and not related to any Endometriosis pain.

I’m intrigued with the poo-data and look forward to sharing with my doctors. And would still like to pursue a path of colo-rectal surgery to look at and remove the DIE on my sigmoid colon. Perhaps after it’s gone, my bowel movements can become more consistently pain-free and solid.

How was your August?

Feel Good Fridays

The end of another week. And nearly the end of August! I hope you’re doing well.

Today’s quote goes out to the partners, spouses, significant others, friends, support systems, and loved ones of EndoWarriors, regardless of their sex of gender identity.

“Suffering should not define you as a woman! And just because you’re a man it doesn’t mean that it doesn’t affect you! HELP HER to remove the taboos and the loneliness surrounding this disease; be understanding, show empathy, and don’t accuse her of being sensitive, delicate, or overly dramatic – this is a big opportunity for you guys to show that you care and to be a real man!”

(Address, 2011 Endometriosis Foundation of America Blossom Ball)”
― Susan Sarandon

I’m lucky enough to have a partner who is understanding, strives to learn more, and is incredibly supportive. But not everyone is as lucky.

To read (or watch) Susan’s full speech from the 2011 Blossom Ball, head on over to the Endometriosis Foundation of America.

And if you ever need to talk, I’m right here.

July Pain Journal

I absolutely cannot believe it’s August already. This year has flown by. And what a weird year, indeed.

So here’s my July pain, symptom, and diet tracker.

I’ve had A LOT less pain in July. And also skipped my period, which may explain that (plus the benefits of my excision surgery). But when I did have pain, it was on both the lower right side and lower left side of my lower abdomen (pain ranged from 2-8 out of 10). I also had some lower abdomen pain, like uterine cramping for a few days (1-3 out of 10) with mirrored lower back pain. And I went through the emotional gambit of a period, even though I was blood-less.

I still what what I call “Shifty Poo Pain” from time to time, which is that glass-guts feeling that makes it way through the middle of my guts and especially prevalent on the left side of my guts before I poo. Once I have shifty-poo pain, I usually poop within 20 minutes. Glass-Guts shifty pre-poo pain ranged from a 3-9 out of 10.

And the act of dropping a deuce itself? Now that depends. My graphs have evolved to better help me process (haha there’s a pun in there somewhere) the information!

Of the 50 times I pooped in July, a third of it was diarrhea.

And of the regular poos, here’s my pain levels on a scale of 1 to 10 (10 being the WORST pain EVER). A not-so-whopping 22% of my poopin’ caused me 0 pain:

And of the Liquid Shits (aka MudButt aka Diarrhea), the majority (64%) remained painless:

Why did I alter my Poopy Pain charts? I have my consult on September 1st to discuss ongoing symptoms regarding the deep-infiltrating Endometriosis on my sigmoid colon and I wanted to arm myself with statistics. My own statistics. 🙂

All-in-all, I’m pleased with July’s outcome. I’m sad about the ongoing glass-guts feeling, but take heart in knowing I have an appointment in September to discuss it.

Pain Journals: March 2020 – June 2020

Wow. It’s already July. I’m so far behind! Hahaha. Well, I wanted to catch up! So, here’s my pain journals for March through June of 2020!

One big shebang! Then I’ll get back on track of my monthly publishing!

March was ongoing pain on both the lower left and lower ride sides of my lower abs (a 4 out of 10), more intense on my period (6 out of 10). Sex and bowel movements were both with and without pain.

April also had the same ongoing pain, but the poopin’ hurt a lot less. The lower abdominal pain also intensified while I was on my period, reaching a 7 out of 10.

May’s pain journal looks terrifying. But it’s also my surgery-month. So, a lot of the pain and discomfort was post-op. But before surgery, lower abdominal pain was about a 4-6 out of 10. While on my period, that number soared to a 9 out of 10. On my period I also had mirrored lower back pain and painful urination. After surgery, I attribute most of the pain (including bowel pain) to healing from the procedure. Everything was angry.

June may still have been a lot of healing/recovery pain from surgery. Sex hurt. Poopin’ hurt (sometimes a 9 out of 10 glass-through-the-guts feeling), and a lot of lower abdominal pain. My period was a doozy and required two halves of Tramadol to control. June had a lot of pain with what I call “shifty poo pain”…pain that usually happens several minutes before I poo. Again, glass through guts. Almost always on the lower left side.

This has been a sit, wait, watch, and hope process. July’s pain journal has it’s own ups and downs (you’ll see at the end of this month), but I’m still watching, waiting, and hoping.

Below are the slideshows if you care to see my daily journals for each month.

And following are my poopy-graphs, if you’re a visual person and care to follow the pain with poopin’ journal (clicking on a month will download a PDF file). You’ll notice some painful poos in March and April, but an insane amount after the May 13th surgery. I would like to think it’s just healin’ guts…only time will tell.

March

April

May

June

Do you track your symptoms and share your trackers with your healthcare providers? If so, what do you use? Leave me a comment below! Let me know your system!

Review of the ReliefBand 2.0 for Nausea

Nicole Tamillo sportin’ her nausea ReliefBand with her cat, Meeko

Do you suffer from nausea? Did you know there’s a drug-free device that may help ease those symptoms? What??

First, an introduction: If you follow the Bloomin’ Uterus Instagram account, you’ve “met” Nicole Tamillo. She’s my friend, confidant, an Admin of our Facebook group, and fellow EndoWarrior. And she is far more tech savvy than I!

Anyway, one of Nicole’s major symptoms when she’s having an Endo-flare is nausea. Extreme nausea. I had heard about a wristband that may help with nausea, so I reached out to the company to see if it would help with Endo-induced nausea. The wonderful folks at ReliefBand offered to send her a complimentary ReliefBand Premier to try out for her Endo-nausea. HOW AMAZING!!! Nicole and I wanted to share her unbiased review, thoughts, results, and excitement with you:

Hello! My name is Nicole Tamillo. I am 27 years old. I was officially diagnosed with Endometriosis at the beginning of 2017 with laparoscopic surgery. Although I experience many different endometriosis symptoms, my two biggest complaints are pain and NAUSEA! My pain can range from uncomfortable to unbearable, but I can normally get through it with minimal complaining. Now nausea on the other hand…. nausea is the bane of my existence. I have self-diagnosed Emetophobia. What is that you ask? EXTREME fear of vomiting. I REPEAT EXTREME FEAR OF VOMITING. I am not talking about being uncomfortable with vomiting, I am talking about full-blown panic mode!! So when endometriosis causes nausea I can not function as a human being. All I can do is lay in the fetal position on my bathroom floor. And the anxiety that comes from nausea only increases my pain. It becomes a vicious vicious cycle. And I have tried so many different things to try and lessen the severity of my nausea. I have tried OTC medications, essential oils, teas, ginger chews, pressure point wristbands, and prescription medicines. But once my nausea has hit, there is no stopping it until it runs its course. That is until I tried the ReliefBand 2.0 (aka the ReliefBand Premier)! 

The ReliefBand 2.0 is a class II neuromodulation device that is cleared by the FDA for the treatment of nausea. 

How does it work?

When the device is in place on your wrist and turned on, gentle pulses stimulate the median nerve at the P6 location located on the underside of the wrist. This nerve is connected to the nerve in the brain that controls nausea. When stimulated using neuromodulation the brain signals the stomach to reduce nausea. The signals have a rebalancing effect normalizing nerve messages from the brain to the stomach reducing symptoms of nausea, retching, and vomiting.

What does it work for?

The device has been clinically tested to relieve nausea, retching and vomiting associated with motion sickness, morning sickness, chemotherapy, postoperative, and vertigo.  In addition, they’ve received FDA clearance this year to also treat nausea and vomiting associated with anxiety, physician diagnosed migraines, and hangovers!

How to use:

1. Finding the starting area (P6) on the wrist. You can use either wrist. It is approximately two fingers down from the wrist crease, between the two tendons. 

2. Clean the area and apply the provided conductive gel. You only need a thin layer about the size of a large coin.

3. Put the device on and adjust to line up the contact over the gel on the P6 location. Fasten device snugly.

4. Activate the device by pressing and holding the power on button. Adjust the intensity by using the up or down buttons. You should feel a slight “tingling” sensation in the palm or middle fingers. 

After using the Reliefband 2.0 for a few months, I can honestly say that it has helped me tremendously! I can’t imagine battling a major endometriosis flare-up without it. Although, it hasn’t been clinically proven to reduce nausea associated with endometriosis, I believe that it can make a big difference for women battling nausea related to endometriosis. 

Pros: 

  • It looks like any other fitness tracker. It has a sleek look and doesn’t stand out.
  • It is rechargeable.
  • Easily kept in your purse or bag for unexpected nausea episodes.
  • The intensity is adjustable
  • FDA Cleared
  • Drug-Free!
  • Latex Free
  • Fast Acting
  • No Side Effects

Cons:

  • The price point: $224.99. It is on the steep side.
  • When not used for a while it will die. So if you have a sudden spell of nausea and haven’t used it for a while, you will have to charge it before using it.

In my opinion, the pros definitely outweigh the cons! And the company provides a 30-day money-back guarantee. 

**

If nausea is something you suffer from, have you tried the ReliefBand? They have two different models at two different prices. If you’ve tried it, we’d love to hear your experience in the comments below. Did it work? Did it not work? What else helps with your nausea? Home remedies? Pharmaceuticals? Anything? Share!

I’d like to send a HUGE thank you to ReliefBand for their interest in helping a friend. And Nicole for opening up, making herself vulnerable, and sharing her symptoms and experience! I’m so glad it has helped you!!!

Share Your Story: Chenille

Woman in yellow shirt and sunglasses

Diagnosed at 32 years old, Chenille shares her Endometriosis journey with us today, four years later. She’s had a total of seven surgeries for Endometriosis, including a hysterectomy and recurrent Endometriosis. And she has recently started seeing an immunologist. Hopefully this new course of treatment leads to long-lasting relief! Chenilles is sharing her story in the hopes that she can talk to others that have seen a similar journey of aggressive recurrent endometriosis.

Chenille’s JOURNEY:  

I have had a long, long journey that seems like it will never come to an end. When I was first diagnosed with stage 4 endo I was experiencing very painful, heavy menstrual cycles. Within 2 years and after 2 surgeries I had a complete hysterectomy.

I thought my battle was over. Boy was I wrong.

Not only did the endo return but it came with a vengeance. I had 4 surgeries in one year to excise it from my body. My surgeon even removed as many lymph nodes from my pelvis as he could thinking it could be embedded in them. It didn’t help.

I went to see a pain management doctor at the request of a surgeon who performed one of my surgeries in Boston. I did and was also diagnosed with Small Fiber Neuropathy. I tried numerous medications, none of which worked and only made me sick. I did 1 month of lidocaine infusions which only helped my developing nerve pain and not the relentless pain in my pelvis. I am not taking any hormone replacement therapy, but I do take 5mg of Letrozole daily. I have been on it for almost seven months.

I just had my 7th surgery in November of 2019. Unfortunately the surgeon who has done most of my surgeries relocated to California so I had to fly out there because no one locally would help me.

After my last surgery I had 2 wonderful months of no pelvic pain. But just like always it started to come back and I am in the same painful boat again. I am taking medical marijuana now, however it does minimal for my pelvic pain. It does great for my increasing nerve pain. I do not want to be on a narcotic pain killer. That is my last option.

So where does that leave me? I am at a loss. I do not know where to turn.

My surgeon believes that for what ever reason my tissue lining in my pelvis and where my reproductive organs used to be is just spontaneously growing the endo. He says my case is very difficult and rare. But that leaves me still in pain and not knowing where to turn. I tried reaching out to an Oncologist but he wouldn’t see me because I don’t have cancer. I would not normally post this much personal info but I need help.

I want to know if there are other cases like me and if so what they did, or who helped them. I am willing to do radical treatments in the hopes of leading a normal life. I just can’t keep having surgery forever. I am only 36 years old. I have a wonderful husband who is beyond supportive but this has affected our relationship too. My 3 young kids don’t understand why mom never feels good. I can’t run and play with them like I want to, I hurt too bad.

I hope that by sharing this someone will help, in any capacity.

WORDS OF ADVICE:  

You As hard as it is to do, stay in the fight.

If you’d like to reach out to Chenille, you can email her.

I want to send a special Thank You out to Chenille for being brave enough to share her personal story. May you find the advice and help you so desperately deserve. ❤ I’ll send ya a personal email with my thoughts.

download

And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Share Your Story: N.

A quote that reads I was happy that finally I have my answers, but I was lost

Living in Germany, N. (who shall remain anonymous) shares her Endo journey with the world today to try to help others feel not alone as well as normalize the symptoms. She was diagnosed when she was 23 years old and shares her story with us four years later.

N.’s Journey:  

Hi, I’m from India. I started having painful cramps when I was 18 years old. It was so painful that I had to take pain killers. Then after few years, I used to get cramps before and after periods too. I used to have irritable bowel syndrome during periods too.

My father used to tell me to go to a gynaecologist but I used to think that it’s “normal”. I tried all kinds of home remedies but nothing worked. Every month, the pain was increasing. I was so done with all this that I told my mom that “I need to go to a gynaecologist, I need answers. It might be normal but I need this to be told by a gyanecologist”. My mother was still skeptical about going to a gynaecologist because she felt that they might give unnecessary hormonal medications.

Anyway, I was lucky that my first gynaecologist suspected endometriosis and told me to get ultrasound done and then she confirmed it. I was happy that finally I have my answers but I was lost. Later, I took dienogest for 1 year and then for 4 months I took Lupron injections. There was very less reduction in the size of cysts. My gyne told that I need to get my laparoscopy done which will happen in next 6 months.

In India, this is something which no one talks about and I wanted to normalize it and hence started this account.

Words of Advice:  

My only advice would be that stay strong and be positive. You’re more than endometriosis !!

I want to send a special Thank You out to N.for being brave enough to share her personal story, struggle, and victories with us today. And all of us wish you the best of luck with your upcoming surgery! Please keep us posted on the results and your recovery.

download

And if YOU would like to share your story, you can do so.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.