Share Your Story: Zoe

Zoe, a brave EndoWarrior, shares her journey with us today…even while she has another surgery pending. We wish you all of the best of luck, Zoe!!!

**

I started my period by having waterfalls for periods with no regularity from age 13 but was put on the pill to manage that at age 15 and that worked. I from my teen years thankfully had no interest in having children. I am not a career woman either, I just don’t get the clucky feeling other women get when they see kids – I get that feeling when I see animals instead so I have fur babies.

The symptoms that brought me to the surgery table in April 2016 (age 33) were intense cramping, sweating and then diarrhea after sex (sexy I know!) I also had very rare cases of period pain that felt like a longer lasting version of the pain I got after sex, other than that my period pain was usually manageable. I did find relief from the symptoms after the recovery of my first surgery.

It took me a very long time to get taken seriously by doctors about my symptoms and what were causing them. I saw a gastroenterologist (it must be your ulcerative colitis), a rheumatologist (maybe it’s something to do with the lupus) and then finally a gynaecologist about it. I was given an ultrasound at a regular ultrasound place and this was my first time having the probe go you know where! The ultrasound showed nothing, which I know now is pretty common as ultrasound technicians need to be specially trained here to look for endo and even if they are trained they can see only the deep infiltrating endometriosis (DIE) and adhesions.

I was put on a public waiting list to see a gynae about my symptoms and they advised me of the laparoscopic diagnosis and removal process, I said I wanted the surgery. They saw me again in another 3 months just to be sure I still wanted the surgery and then I was put on a wait list for the actual surgery. So all in all, first enquiry through to surgery it took 15 months for me to be on the operating table!

The surgery found that I had stage 3 endometriosis and all lesions were removed, I was also found to interstitial cystitis in my bladder (they also sent a probe into my bladder). They put a mirena in to control the return of the endo hormonally and I was on my way – albeit in a lot of pain that day; from being on the operating table with a breathing tube for 3 hours – I had no idea how raw my throat would be and how much it would hurt! having only had short surgeries in the past.

As I mentioned I got relief from these symptoms, I also eventually had no period because of the mirena (OMG best thing ever!)

From mid-2017 I started to get decent period cramps however for a couple of days every few months then it became monthly then fortnightly, then weekly then half the week until by August 2018 it was almost every day and then it WAS everyday. At the end of 2017, I asked my GP to refer me to a gynaecologist, my GP referred me to the gynaecologists at the local hospital (I had moved to rural Australia by then).

The gynaecologist looked at my history and saw that I had stage 3 endometriosis in the past but still did the usual “are you sure it’s not your ulcerative colitis?” so off I went to my gastroenterologist and described my symptoms, he confirmed that my ulcerative colitis would not cause new symptoms like this and my very recent colonoscopy showed the ulcerative colitis was very mild at the moment with the medication that I am on for it keeping it under control. So back to the gynae I went, the gynae agreed that it might be time for some more endo excision surgery but first he wanted me to see one of those ultrasound technicians that are trained to see endo. I asked why and the gynae said because he does not have the skills to excise stage 3 or stage 4 endo so he would need to send me to the city hospital if there is deep infiltrating endometriosis (DIE). This meant that I could not be placed on any surgery waiting lists until the scan results were in GRRRR. So off I went on an hours drive a couple of weeks later when I could get the appointment with this ultrasound place and I do recall that he (the Dr doing the ultrasound) noticed something on my bowel but he said to me that he was unsure whether it was endometriosis or scar tissue from my previous surgery. Either way the results of the ultrasound were nothing related to deep infiltrating endometriosis (DIE), the only finding listed was that my left ovary had limited mobility.

I had pain everyday by this point and whereas the period pain was mostly in my legs to begin with, now it was mostly in my lower back and felt like period cramps only all the time! The cramps got worse when I needed to poop too! And after I pooped the extra pain hung around. I took more than the recommended dose of paracetamol aka Tylenol because the maximum dose didn’t cover me for 24 hours and due to my ulcerative colitis I am not allowed to tale NSAIDS which is what most people use for period pain.

So I waited 4 months on the waiting list to get my surgery at the local hospital and a replacement Mirena iUD and when I woke up I swear that I had some kind of convulsion and then when I (still groggy) spoke to my gynae he said that he had found that my right ovary was stuck to my uterus which he had freed up and also (I thought he said) he removed a cyst on my ovary. He had also found that my uterus and bowel were stuck together and that I’d need a colorectal surgeon (in the big-city hospital) to separate them. 

I went into the recovery area of the day surgery unit and asked them if I had some kind of convulsion when waking up, they said that I didn’t and then they said I could leave. I had no information on my surgery other than some generic pamphlets on the type of surgery I had; so I asked the nurse to give me an operation report and she checked and came back to me saying that the gynae has already spoken to me and told me what happened so I didn’t need anything other than the pamphlets to go home with. I argued that I was still doped up when the Dr spoke to me and then I asked if they were  going to send me home with pain meds and the nurse said that they don’t usually but that she would check. When she came back, she had a prescription for pain meds and said that she will request a wheelchair and someone to push to get me to a car (which my partner was driving). It took about 15 minutes for a wheelchair to arrive and in the meantime I was approached by one of the doctors who attended my surgery and I asked her and received an operation report.

Once home, I decided to indulge by taking the maximum dosage of my codeine paracetamol pain killers, I had my partner caring for me and then my auntie so I had not a care in the world! I also took degas and made sure I had lots of cushions on the bed to lift me up as well as maternity undies so they were nice and loose on my wounds. I was still hunched over from the pain when I walked but I felt pretty floaty and a-OK. I didn’t poop or feel like I needed to poop for 7 days or so and then suddenly, I needed to poop but it wouldn’t come out! It was sticking out of me and I could see that my whole genital area was stretched by it but the poop appeared huge and was stuck. I spent 3 hours on the toilet – afraid to push hard for my stitches and internal surgery wounds. I called nurse on call who said to wait it out (IT HAD ALREADY BEEN 3 EXCRUCIATING HOURS) then I called the ambulance and they wanted me to speak to a Dr about whether I required an ambulance or not. While I waited for a call from their Dr I felt a huge wash of nausea and needing to poop so I sat  on the toilet with a bucket in case I puked and my body did an automatic huge push and pushed out the obstruction in my bowel. It was a couple of minutes later that the ambulance Dr answered the line and I let them know that it had sorted itself out. This is a warning about opiates – take stool softeners with them!!!

The period pains hadn’t diminished and I had to wait 2 months to see the gynae again so I put into motion the referral process to a big-city gynae through my GP. Initially I was referred to the closest big-city hospital but I never heard back from them even though when I called them they told me that they had received my referral. My doctor later suggested that she refer me to a private gynaecologist that I would need to pay for but the surgery itself would be via the public system (=free) so I agreed and my GP got her personal mobile phone out and started calling people that she knew in the medical industry to find a gynae that could do my surgery at a public hospital. My GP eventually found the gynae who is going to do my next surgery ( I think that she was sick of seeing me every week for tramadol prescriptions!)

I saw the gynae that did my surgery in 2018 for a follow up in late January 2019 and let him know who I had been referred to and requested a support letter for me having a hysterectomy on the next surgery which he gave me as he believed it would help my symptoms as well as knowing that I did not want kids. He also wanted to check my Mirena to make sure that it was in place properly and alas he could not find the strings! I then had to do a pregnancy test (negative thankfully) and another ultrasound. This ultrasound found my Mirena where it should be but somehow the strings had gone AWOL and it also found that my left ovaries were immobile (again as with the last ultrasound). I had a follow up with the gynae and asked him about why he found disease in my right ovaries yet the ultrasounds said that it was always on the left. My gynae said that ultrasounds are not as accurate as surgical diagnosis.

In between these appointments my GP moved from the rural doctors surgery so I had another GP and this GP specialised in womens health (woohoo!) This GP suggested that I go off the tramadol and onto Lyrica instead and I have been on this ever since (along with the max dose of paracetamol/Tylenol).

I saw the gynae that I was referred to on the 27th of February and it turns out that he was the very gynae that did my first surgery in 2016! We together agreed that the best approach for me seeing as I am now 35 years old and still do not want kids is to have a hysterectomy during the surgery. The gynae offered to give me drugs to shut down my ovaries until surgery (which should stop my daily pain) but I declined because I did not want the menopausal symptoms. The gynae asked that I get another ultrasound at a clinic in the city to check how deep the endo is into my bowel which would therefore determine whether he needed a colorectal surgeon at the surgery or not (depending how deep it is). He also informed me that if they do any kind of bowel resection, I will need a stoma (colostomy bag) – which I was really dumbfounded about until he explained that it was due to all the immunosuppressing drugs that I take for ulcerative colitis and lupus. The gynae also let me know that he believes all the Autoimmune disorders I have (lupus and ulcerative colitis) are related to the endo and interstitial cystitis (which I am still not sure what that is other than perhaps endo of the bladder?) The gynae agreed that Lyrica was a good choice for my pain and told me that even after the surgery I may need to take it and to see a pain clinic. He said it was because I had been in constant pain for so long, my nerves are hypersensitive and probably won’t realise that the pain is gone.

On the 21st of March I had my ultrasound booked in at 12pm with the only technician that my gynae trusted the word of. I would also have to do my first bowel prep before the ultrasound. Well, not my first bowel prep (I have ulcerative colitis so need to do regular colonoscopies) but my first one for before an ultrasound anyway! The bowel prep involved a laxative pill the night before and then a “fleet enema” an hour before the ultrasound. This was so they could clearly see my bowel wall and how deep the endo was in in without having poop and toots in the way! The pill was easy, no special diet on the day before or anything. The fleet enema was going to be a problem though because I live 2 hours drive from the city where this ultrasound tech is, so they said I can use a room when I get there and do the enema in there. My partner and I arrived an hour early (for the enema) and struggled to find a park, ended up finding 2 hour parking a couple of blocks away which should be enough but it wasn’t because the ultrasound was late doh! But anyway back to the enema… the enema felt awful! It felt OK at first and then I felt this really hot liquid churning around my belly and then the need to go to the toilet immediately or its gonna come out anyway. I kept going back to the toilet every 10 mins after that as well with just a little brown liquid needing to come out. Not my favourite bowel prep but at least it was fast I guess! We waited and waited and I went back and forth to the toilet until my partner had to make the trek out to put more money in the parking meter and that was when I got called in for the ultrasound. The ultrasound was done with the usual “magic wand” (as I like to call it) up the vagina and they pressed it uncomfortably against my bowel to see what they needed to see. Thank fully what they saw was that the penetration into my bowel wall did not appear to be deep and that it was my ligament stuck to the bowel not my uterus itself! I also had 2 very mobile ovaries so perhaps in the other scans, my bowel was pressed against them stopping them moving?

The good news from these results is that a colorectal surgeon is not needed for my surgery so no stoma / colostomy bag! Hooray! I also wholeheartedly believe that the reason that my endo hasn’t progressed much since the first surgery is because the Mirena has been controlling it hormonally. Sure I have pain and my ovary was stuck to my uterus as well as my ligament stuck to my bowel but that is nothing compared to my 2016 surgery. I feel that my adhesions in the last surgery and currently could have even been from the scar tissue where endo was removed in my 2016 surgery but I am no surgeon and I will haveto see what my gynae thinks of that theory after my next surgery.

😊

At this stage my pain is well managed (for the most part) with Lyrica 75mg at night and Paracetamol / Tylenol slow release during the day. I sleep the night with zopiclone sleeping pill and sometimes am kept awake by mild pain if I don’t take my sleeping pill. My surgery should be in July and I’ll be sure to keep you posted 

**

Zoe allowed me to see her previous surgery reports, scans, and prep docs to share them with you today:

On April 26, 2016, Zoe had an outpatient laparoscopy because of complaints of pelvic pain after sex (which sometimes included sweating and diarrhea), as well as menstrual cramps that mimicked her post-intercourse pain. She had a D&C (dilation & curretage done) to clean out some uterine lining, a cystoscopy to check out the inside of her bladder, excision of endometriosis, and a Mirena IUD placed. Care to see her surgery photos?

The findings of her surgery? Evidence of interstitial cystitis, deep infiltrating endometriosis, a large nodule on her left uterosacral ligament, a large right pararectal nodule, and superficial endo around her right broad ligament region. Her tubes and ovaries were normal, and they confirmed the fact that she has a retroverted uterus. The nodules and endo lesions were excised and sent off to pathology. The biopsy confirmed endometriosis found on her right broad ligament, the left side of her Pouch of Douglas, the right side of her pelvic wall, and both nodules were endo. The lining removed from her uterus came back as as “no evidence of endometritis, hyperplasia, or malignancy,” but no mention of adenomyosis, since that is often located deep within the uterine wall.

In 2018, Zoe had transabdominal and transvaginal ultrasounds due to pain. It showed that she has a retroverted uterus, with evidence of a 1cm fibroid within her uterine wall. Her Mirena was shown to be correctly positioned. Both a retroverted uterus and fibroids have been known to cause pelvic pain. The ultrasounds also showed that Zoe’s left ovary was slightly stuck to the middle of her uterus. During the examination, her left uterosacral ligament was tender. There was no evidence of deep infiltrating endometriosis.

In November of 2018, she had her surgery. Endometriosis was excised (cut out) and ablated (burnt off), adhesions were removed, a D&C was performed (to remove excess uterine lining), and the Mirena IUD was inserted. Her right fallopian tube and ligament were stuck to her pelvic wall; right ovary was stuck in the cubby of the ovarian fossa; a nodule on her right uterosacral ligament which may be deep infiltrating endometrisiosis was discovered; and her rectum and sigmoid colon were stuck to a uterosacral nodule, too. The op report states, “left tube and ovary normal;” no mention of it’s immobile nature found in the ultrasound. The noted stuck bits were freed and a biopsy of the uterosacral ligaments and nodules were performed. She’s provided her 2018 surgery photos for your viewing pleasure, should you so desire.

In late January of 2019, Zoe underwent another pelvic ultrasound due to her worsening symptoms and the missing IUD strings. The ultrasound confirmed the retroverted uterus, as well as the Mirena being perfectly placed within the uterus. It also found that the left ovary was “poorly mobile.” I don’t recall reading anything in her November op report about freeing the left ovary from it’s sticky place.

On March 21, 2019, another ultrasound was performed. A bowel prep was advised so they could have a clear image of her pelvic region. The radiologist reported that a Mirena IUD may make diagnosing adenomyosis by ultrasound difficult, but it didn’t appear that there was any adenomyosis. Both ovaries appeared mobile and were not tender. A nodule was present on Zoe’s right uterosacral ligament and the bowel seemed stuck to the nodule, although the nodule did not appear to infiltrate the bowel wall. The nodule may simply be scarring from previous surgeries or it may be recurrent endometriosis. Unfortunately, one cannot tell from imaging studies.

Endometriosis & the Pancreas

Diagram of liver, stomach, pancreas, and gallbladder

I’m sitting here going through my very old post-surgery emails and I’ve stumbled upon one from December that made my jaw, once again, drop. A study was published in late 2018 about a woman who was discovered to have an endometrial cyst inside her pancreas…WHAT? It’s super-duper rare.

As usual, this isn’t meant to scare you. Just inform you…

As you know…I’m prone to following studies down rabbit holes and satisfy my curiosity. Today is no different! Read on, dear Reader…read on!

What & Where is the Pancreas?

I’ve often heard of the pancreas but never looked into where it was and what it does. I know it’s somewhere in my torso…but never bothered or cared to know more. But now? I’m all over it!

It’s a gland about six inches long that’s smashed in the abdominal cavity, surrounded by the liver, spleen, small intestine, stomach, and gallbladder. The pancreas aids in digestion by secreting lovely secretions affectionately called pancreatic juices. It also helps regulate blood sugar via pancreatic hormones: insulin and glucagon.

Symptoms of Pancreatic Endometriosis

From what I’ve been able to read, it appears that symptoms may include:

  • Epigastric pain (pain or discomfort below your ribs);
  • Left upper quadrant pain (the section of your torso on your left : belly button to boob and everything in between); and,
  • Unexplained weight loss.

Diagnosis & Treatment

The good news is it appears that tissue growth and/or cysts are oftentimes spotted with CT scans, MRIs, or endoscopic ultrasound. These may lead physicians to exploratory surgery. And it seems that resection (removal) of the diseased portion of the pancreas is the best option for treating pancreatic Endometriosis.

If you suffer from symptoms and want to begin steps to ensure you DON’T have pancreatic endometriosis, I do believe you’ve got quite the journey ahead. Document your symptoms, track your diet and any triggers, and begin by pursuing imaging studies (xray, CT, MRI, ultrasound, and endoscopic ultrasounds). Talk to your doctor. Do understand that it’s very rare, but there are documented cases below:

Science!

Okay, on with the studies, including the one that brought me here!

A study from 1984 was of a 36-year-old woman who had complained of epigastric pain and was being seen at a hospital in New York. Fourteen months earlier, she was hospitalized with acute pancreatitis and sonogram studies were normal. Now back in the NY hospital, she had no prior history of surgeries, no abnormal periods, her pain was not during her periods, and she didn’t have a problem with alcohol. She had right upper quadrant fullness and lower left quadrant discomfort. Palpitation of her torso was normal, as well as a rectum exam and blood tests. An x-ray showed a hiatal hernia and a distorted duodenal bulb (a portion of the small intestine that is up by the stomach). And a sonogram revealed a small buidup of calculi in her gallbladder as well as an cyst inside her pancreas. A laparatomy was performed; they couldn’t feel any stones in her gallbladder, but located the 4cm cyst in the tail of her pancreas. Piercing of the cyst showed a yellow-ish fluid. They removed part of her pancreas, as well as her gallbladder and spleen. Biopsy of the cyst proved it was lined with endometrial tissue, and hence her diagnosis of pancreatic endometriosis AND no evidence of any prior pancreatitis was found…Her symptoms subsided after her surgery. Go figure.

In 1986, a study was published of a 40-year-old woman who had recurrent left flank pain for a year and a half. When palpitated, doctors could feel a mass near her kidney, but all other physical examinations were normal. An angiography showed the upper part of her left kidney was compressed. A procedure known as an excretory urography was performed and the left side was shown to secrete less, due to a mass which had displaced her left ureter. An ultrasound led doctors to believe a cyst was present. When punctured, the cyst oozed a chocolate-colored, thick fluid. Exploratory surgery was performed and the 8cm cyst was visualized compressing the kidney. While there, her surgeons also found a cyst on her pancreas. Pathology showed the cysts were Endometriosis.

In 2000, a 47-year-old Japanese woman had complained of epigastric pain, back pain, nausea, and vomiting. A CT scan and ultrasound found a cyst on her pancreas. A surgery was performed to remove the diseased portion of her pancreas and pathology confirmed it as an endometrial cyst.

In 2002, a 21-year-old Korean woman went to the hospital because of ongoing epigastric pain and she had lost 20 pounds in one year. She had no prior surgical history, her periods were normal, and her family history was normal. A physical exam and blood tests were also normal. A CT scan showed a 4cm cyst on her pancreas. She underwent a pancreatectomy to remove the infected portion of her pancreas and the biopsy showed it positive as Endometriosis. The rest of her pancreas was normal.

A study published in 2004 was of a 34-year-old woman who was admitted to the hospital due to severe abdominal pain. She had intermittent left upper quadrant pain for the past three years. Between those painful flares, she was pain-free. A CT scan showed an 8cm mass in the tail of her pancreas and a chest x-ray showed a nodule in her right lower lung lobe near her diaphragm. She underwent a CT-guided biopsy to take a sample of the cyst on her pancreas with fine needle aspiration and they collected 100ml of dark brown fluid from the cyst. A few imaging scans later, and doctors decided to do exploratory surgery. “Small plaque-like lesions” were found on her liver and diaphragm. Other lesions were found on her spleen and they found the cyst on her pancreas. A portion of her pancreas and spleen were moved, as well as the suspicious lesions. Biopsy confirmed the cyst in the pancreas was Endometriosis. The authors of the study stress that, although rare, “a cystic lesion in the pancreas must have endometriosis in the differential diagnosis.” At least consider the option…

In 2011, a 35-year-old woman had recurrent, severe pain in her upper left abdominal quadrant. The pain had persisted for three months and an examination revealed a cyst inside her pancreas. A portion of her pancreas was removed and a biopsy showed it to be an endometrial cyst.

A July 2012 study was of a 42-year-old woman who was hospitalized due to epigastric pain. A CT scan revealed tissue changes around her pancreas as well as possible cancerous growths. Her pain resolved, but later at a follow-up exam, another CT found additional tumor growth. Physical examination and bloodwork was normal. She was referred to a local university hospital’s pancreatic team. More CT scans found swelling and tissue changes around the tail of her pancreas. Pancreatitis was suspected. An MRI led the team to suspect Endometriosis. They learned that she had a history of irregular periods (but they weren’t painful), and that her sister had Endometriosis. Since the imaging studies were not conclusive, exploratory surgery was performed by a team of gynecological and gastrointestinal surgeons. Evidece of old Endometriosis activity was noted in her Pouch of Douglas, she had a chocolate cyst on her left ovary (they removed her left ovary), and cystic tissue was found on the pancreas; which came back from pathology as Endometriosis.

In 2016, a study was published of a post-menopausal, 72-year-old woman was preliminary diagnosed with pancreatic cancer and was referred out for further testing. She had increasing abdominal pain in the upper left quadrant of her torso. And her medical history included an umbilical hernia, an appendectomy, hypertension, her gallbladder was removed, a hysterectomy, and a surgical hernia repair. “There was no known history of pancreatitis or endometriosis.” Her abdomen was bloated and tender, especially in the area of her pain. Imaging studies showed a mass on her pancreas. Pathology came back as Endometriosis, and she was symptom-free five years after her surgery.

A February 2017 study is of a 43-year-old woman who had previously been admitted to the hospital for one day of severe epigastric pain and was diagnosed with acute pancreatitis. A CT scan and an endoscopic ultrasound at that time indicated a cyst on the tail-end of her pancreas. It was pierced with fine needle aspiration and brown fluid was retrieved. Fast forward to three months later and she’s at a medical clinic due to worsening abdominal pain, fatigue, diarrhea, anorexia, and having lost 15 pounds in the past three months. Although she had a previous diagnosis of Endometriosis, she did not have painful periods. Additional imaging studies confirmed the presence of the cyst and surgery found the 16cm cyst inside the tail-end of her pancreas. That section, as well as a portion of her spleen, were removed. No other evidence of Endometriosis was found. Pathological examination showed the cyst was full of “gray-green cloudy fluid” and came back as pancreatic Endometriosis.

In December of 2018, a 26-year-old woman reported abnormal periods and was hospitalized due to left abdominal pain. It hurt even when she wasn’t on her period. Her medical history only revealed that she had a prior c-section, but no history of Endometriosis or pancreatitis. A CT Scan found a 7cm cyst inside of her pancreas, which was confirmed in both an MRI and endoscopic ultrasound. A benign tumor was suspected and surgery was performed to remove part of her pancreas as well as her spleen. A biopsy was performed and it was found that she had endometrioma insider her pancreas. She underwent surgery and they removed the portion of her pancreas, as well as a bit of her spleen which was affected by the mass.

Resources:

Acta Radiologica Open (Article; Sept. 2016) – A Rare Case of Pancreatic Endometriosis in a Postmenopausal Woman and Review of the Literature

Europe PMC (Abstract; Jan. 2000) – A Case of Hemorrhagic Cyst of the Pancreas Resembling the Cystic Endometriosis.

Gastroenterology (Article; June 1984) – Endometrial Cyst of the Pancreas

HealthlineWhat’s Causing my Epigastric Pain and How Can I Find Relierf?

Journal of Minimally Invasive Gynecology (Abstract; July 2012) – Endometriosis of the Pancreas (you may access the full article here)

Korean Journal of Internal Medicine (Article; 2002) – A Case of Pancreatic Endometrial Cyst

Pancreatic Cancer Action NetworkWhat is the Pancreas?

Southern Medical Journal (Article; Oct. 2004) – Endometriosis of the Pancreas Presenting as a Cystic Pancreatic Neoplasm with Possible Metastasis

Surgery Today (Abstract; July 2011) – Pancreatic Endometrial Cyst: Report of a Case

The Japanese Society of Internal Medicine (Article; Dec. 2018) – A Rare Case of Pancreatic Endometrial Cyst and Review of Literature

The Journal of Urology (Abstract & Article; Jan. 1986) – Pancreatic Endometriosis Presenting as Hypovascular Renal Mass (you may access the full article here)

World Journal of Gastroenterology (Article; Feb. 2017) – Pancreatic Endometrial Cyst Mimics Mucinous Cystic Neoplasm of the Pancreas

~ 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 & Poops: Then & Now

Happy poop with daisy on it's head

Well, here we are in 2019 and I’m starting my blog off talking about poop…Why? Because I’m SUPER excited to share with you how different my bowels (and pain levels) have been since my recent bowel resection and Endometriosis excision surgery.

If you weren’t aware, I underwent a bowel resection to remove deep-infiltrating Endometriosis from my small intestine.

Embrace this discovery with me! Here’s my pain journal summary for November of 2018:

Summary of November 2018 pain and symptoms

And here’s my pain journal summary for January of 2019:

Summary of January 2019 pain and symptoms

I went one step further and compared my bowel movements and their pain levels for the first eight days of November and of January! The difference is…staggering!

Table of poops for Nov 2018 vs Jan 2019

Look how numbers have completely shifted!!! I was flabbergasted when I did the comparison! I mean, I’ve obviously noticed a huge difference in my quality-of-bathroom-life, but wasn’t expecting THIS! And if you’d like more up-to-date info on my bowel movements and pain symptoms, I’ve started blogging about them on the first of every month.

If I ever needed any sort of reassurance that my bowel resection and Endometriosis excision surgeries were the right call, this is it. Not that I needed that validation. And am so grateful to Dr. Mel Kurtulus and Dr. Matthew Schultzel for their expertise, compassion, and friendship.

But I was SO excited about the difference that I wanted to share it with you…And bring in the New Year with…poop-talk.

Stay tuned. I’ll be blogging full-force once again now that I can sit at a computer for longer periods of time. And I cannot wait to share with you the details of my last surgery and the findings.

Be well. I’ve missed you Readers. And I’m so pleased to be back in the saddle, so to speak.

(Updated April 5, 2019)

Interstitial Cystitis

Today I’d like to talk about something that a lot of my EndoSisters suffer from: Interstitial Cystitis, also known as IC.

Interstitial what? That’s what I thought the first time I heard of it a few years ago.  Heck, my doctor even suspected I had it (we check every time I go in for surgery, and so far: no tell-tale signs).  I’ve been telling myself for a few years now that I needed to research and write about it…so today I am!

What is it?

Let’s start off with:  it’s been around for quite a while.  The first written description of IC was back in 1836 by Philadelphia surgeon, Joseph Parrish.

It is a chronic, often painful,  incurable bladder condition that both men and women can suffer from.  In a nutshell, the signals that are usually sent from the bladder to the brain are a bit mixed up. And this mix-up can cause a whole host of symptoms, which I”ll describe below.   Although incurable…symptoms may regress or completely go away after time.

This condition goes by many names: Interstitial Cystitis (IC), Painful Bladder Syndrome (PBS), Bladder Painful Syndrome (BPS), and oftentimes is just labeled as chronic pelvic pain.

And, like Endometriosis, doctors are unsure as to what causes IC, although they theorize that it may be hereditary, an autoimmune reaction, inflammatory cell growth, an allergy, or a defect in the bladder tissue.

It is unclear how many people suffer from Interstitial Cystitis worldwide, but it is estimated 3-8 million women in the US have it; roughly 12% of women show early symptoms of Interstitial Cystitis; and it’s estimated that of the sufferers of IC, 80% are women.

Symptoms?

Symptoms can vary from person to person, may come and go, may be constant, or may flare-up due to certain triggers.  Some people mistakenly think they simply have a bladder infection.  Common symptoms include:

  • Pelvic pain (it can range from mild to severe)
  • Pain between the vagina and anus (in women) or from the scrotum to the anus (in men)
  • Pain, pressure, or discomfort near the bladder, sometimes relieved after urinating
  • Frequently going pee (some people pee as much as 60 times a day!)
  • Feeling a strong urge to pee
  • Peeing only small amounts
  • Painful sex

Many women report symptoms are worse when they’re on their periods, have a urinary tract infection, after sitting for a long period of time, or even (noooooo!) after having sex.  And the lower quality of life, pain, and other symptoms may also have an effect on emotional well-being.

Types: there’s more than one?!

As of today, there are two types of IC: non-ulcerative and ulcerative. What does that mean?

Non-ulcerative interstitial cystitis is what 90% of IC patients are believed to have.  Little spots or blotches are seen inside the bladder and are called glomerulations.  There’s a caveat (isn’t there always?) – these blotches can be caused by any inflammation, so it’s not a 100% positive diagnostis of IC to just visualize the glomerulations. 

Ulcerative interstitial cystitis is what a lucky 5-10% of IC sufferers have. The red blotches found inside the bladder wall actually bleed.  They’re known as Hunner’s Ulcers.

But wait, there’s more!  A small percentage of IC suffers continue to have symptoms for longer than two years.  Their bladders may be very hard, have a small capacity for holding urine, and are constantly in pain.  This is known as End Stage IC (or Severe IC).  End Stage IC sufferers oftentimes also have Hunner’s Ulcers.

Diagnosis

Just how do you know if you have Interstitial Cystitis? There’s no ONE test to tell you if you do, or don’t have it.

A physician will likely take a detailed medical history, making note of any IC symptoms.  Then steps will be taken to rule out other causes of those symptoms.  A physical examination will likely ensue, and possibly a neurological exam.   And a urine test may be ordered, to also rule out a bladder infection. 

A cystoscopy can be performed, which is when a camera is smooshed up your hoo-haw to look at the condition of the urethras and bladder. The internal examination of the bladder will help look for those blotches we discussed previously.

Another test that may help doctors come to an IC diagnosis is called hydrodistention.  It means they insert a catheter, fill your bladder with water, and measure the pressure as the bladder fills and empties.  It may even give them a first-hand encounter as to your pain responses when the bladder does its fill & pee thing.

Treatment Options

Talk to your doctor before doing ANY of this! I’ve found references to the following treatment options (and this is by no means complete):

Lifestyle changes

Stress may be a big factor in triggering symptoms…so being able to either eliminate or alleviate stress may help ease IC symptoms.

Diet changes

Although there is no official “IC Diet,” many people report that gluten and dairy trigger their symptoms.   A balanced plate of fresh fruits and veggies, grains, and proteins seems to be the overwhelming advice.  Also, avoiding processed foods and keeping a food journal are also popular suggestions.  Many people have found that their symptoms are worse after eating chocolate, tomatoes, spicy foods, carbonated beverages, high-acid food or drink (like cranberry juice), drinking alcohol, or caffeine.  Learn your body and what does, or doesn’t influence your IC symptoms.

Bladder training

literally retraining your bladder; learning to pee on a set schedule, rather than when your bladder screams at you (although, if it is painful…by all means, go!) Bladder training can take anywhere from 2-12 weeks to see results and may help with frequent urination complaints.  Keep a diary of bladder activity to keep track of how you’re doing!

Physical therapy or pelvic floor therapy

A pelvic floor therapist can help stretch and strengthen the muscles of the pelvic floor, which may help with ease symptoms…BUT BEWARE – some studies have shown that it  may also worsen symptoms.  This includes kegel exercises!

MedicATIONs

Over-the-counter pain medications (such as Ibuprofen and aspirin) may alleviate some bladder pain and discomfort.  

A prescription drug known as Elmiron has been shown to relieve IC bladder pain and discomfort.  It was approved by the FDA in 1996.  The manufacturer’s webpage states it is a weak anticoagulant and “[i]t is not known exactly how Elmiron works.”  It may adhere to the mucous lining of the bladder, subduing irritation.  Elmiron also comes with a whole slew of possible side effects that may not be worth it, but decide for yourself and talk to your doctor.

Low-dose tricyclic anti-depressants may relax the bladder, ease pain and improve sleep.  Most commonly prescribed is Amitriptyline.

Antihistamines may also help with inflammation and pain.  If you go this route, though, beware of drowsiness.

There are also several prescription medications used to relax the bladder walls to reduce instances of incontinence.  Think of that “gotta go, gotta go, gotta go right now” jingle on TV.

Gabapentin is an anti-seizure medication and also treats nerve-related pain.  Some studies have shown Gabapentin-use to improve some symptoms in IC sufferers. 

Cyclosporine is an immunosuppressant drug given to patients who receive organ transplants; it’s taken so the new organ doesn’t get rejected by the host body.  A 3-month clinical trial of 26 participants in 2017 found that 30% of them showed improvement in their IC symptoms.  Supposedly, it suppresses immunological responses, aka inflammation, which is an autoimmune response.  Cyclosporine is not yet FDA approved to treat IC.

As always, please talk to your doctor before starting any over-the-counter or prescription regimen.

Distending the bladder

The aforementioned procedure (hydrodistention)  to fill the bladder to test for pressure thresholds, etc. also has been found in some women to relieve their IC symptoms, for a time.

Electrical nerve stimulation

Neuromodulation therapy uses electrical stimulation to alter the way our nerves work.  It’s painless, and sometimes (if the settings are too high) feels like a pinch.

Many people have reported good results with controlling pain using a TENS unit.  

Another option is an implantable device known as the InterSim, which stimulates the sacral nerve to control bladder issues.

Bladder instillation

Going back to the catheter in the bladder method, but this time instead of water or a saline solution, it’s a liquid drug.  The fluid is held in the bladder for up to 20 minutes, then released (aka just let it go…pee it out!). It may cause immediate relief…or a flare-up, but with continued treatments, it may temporarily ease symptoms.

Dimethyl sulfoxide (aka DMSO) is a bladder instillation that is administered weekly, for usually six to eight weeks.    It was approved by the FDA for human use in 2002.  Cystistat and Hyacyst are also bladder instillation drugs, but are not approved for use in the United States.  You can, however, get these treatments in Canada and Europe.

Other bladder instillations may use a combination of different liquid medications and treatments may take place three times a week.

Botox

Just like people get Botox injections to help with facial wrinkles and migraines, you can also get a Botox injection for your bladder!  It’s temporary and may require multiple treatments but may help with overactive bladder muscles.  If you receive Botox injections for your IC, please be sure to tell your doctor if you develop difficulty peeing.

Surgery

In some cases, surgery is the last resort to dealing with pain.   You may be asking how the heck any type of surgery can help with IC issues.  Well…read on:

Under anesthesia, some ulcers inside the bladder may be cauterized.  

A bladder augmentation surgery can make the bladder larger.  

In a cystectomy, they take out your bladder and give you a “new” one using intestinal tissue.  And having this new, non-bladder bladder usually means you’ll need to use a catheter whenever you want to pee.

Other

People have also reported good results with warm baths, stress reduction, exercise, and biofeedback.  It truly is about finding what works best for you and your IC.

If you’re interested in any of these treatment options, please address them with your healthcare provider. 

Know You’re Not Alone

If you suffer from IC, I mean it: you’re not alone. 

The Interstitial Cystitis Association has put together an extensive video library on Youtube with expert interviews, IC advocates, and sufferers.  If you’re curious, you can check it out here

The ICA has also created an online support community for people who suffer from Interstitial Cystitis.  Please feel free to sign up here

The IC Network also has a list of support groups around the United States.  Click here to find one near you!

Just a little note if you’ve made it through my blog entry today and you haveIC…if I’ve misunderstood any of my research or if you would like me to add something, please let me know!

Resources:

Bladder Pain Syndrome (Abstract; Aug. 2017) – Botulinum Toxin in Treatment of Bladder Pain Syndrome/Interstitial Cystitis

Centers for Disease Control & Prevention – What is Interstitial Cystitis?

Cleveland Clinic – Interstitial Cystitis (Painful Bladder Syndrome)

Clinical Trials – Cyclosporine in Interstitial Cystitis: Efficacy, Safety and Mechanism of Action (CIC)

Elmiron manufacturer webpage

Expert Review of Clinical Pharmacology – (Abstract; April 2018) – Pharmacological Management of Interstitial Cystitis/Bladder Pain Syndrome and the Role Cyclosporine and Other Immunomodulating Drugs Play

Harvard Health Publishing – Treating Interstitial Cystitis

Interstitial Cystitis Association – Bladder Retraining

Interstitial Cystitis Association – Interstitial Cystitis and Diet

Interstitial Cystitis Association – IC Plate

Interstitial Cystitis Association – Other Medicines

Interstitial Cystitis Association – What is Interstitial Cystitis?

Mayo Clinic – Overview of Interstitial Cystitis

MedLine Plus – Interstitial Cystitis

National Institute of Diabetes and Digestive and Kidney Diseases – Cystoscopy & Ureteroscopy

National Institute of Diabetes and Digestive and Kidney Diseases – Interstitial Cystitis (Painful Bladder Syndrome)

National Institute of Diabetes and Digestive and Kidney Diseases – Treatment for Interstitial Cystitis

Office on Women’s Health – Bladder Pain

The Journal of Urology – (Abstract; Jan. 2004) – The Historical Origins of Interstitial Cystitis

UpToDate – Patient Education: Treatment of Interstitial Cystitis/Bladder Pain Syndrome(Beyond Basics)

Urology Care Foundation – First Phase: Lifestyle Changes

Urology Care Foundation – Fourth Phase: Cyclosporine

Urology Care Foundation – Interstitial Cystitis

Urology Care Foundation – Third Phase: Neuromodulation, Ulcer Cauterization and Injections

US Food & Drug Administration – Dimethyl Sulfoxide

US Food & Drug Administration – Elmiron

Womens Health Matters – Interstitial Cystitis

~ 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

Endometriosis & the Kidneys

A doodle of a human kidney pointing at a diagram of the renal system

In the past, I’ve researched how Endometriosis can affect the renal system, specifically the bladder or ureters, and how that could even cause blockages that cause kidney issues and severe problems.

Today, I’m going to talk about Endometriosis and the actual kidney.

A study published in October of 2018 discussed a 45-year-old woman who had flank pain and blood in her urine.  Imaging studies found a mass on her left kidney.  A surgery was performed to remove the suspected renal mass and a portion of her kidney, and pathology confirmed it was an Endometriosis lesion.  It was removed from her “renal parenchyma,” which is the solid part of the kidney that filters blood and makes urine.

My mind was blown!!

That one little abstract led me down a rabbit hole: how many others out there have had Endometriosis lesions on or inside of their kidneys…not just the bits and pieces and tubes leading up to our bean-shaped organs?

But before I get into the studies of women who had Endometriosis growing on (or inside) their kidneys, I want to outline the symptoms of what renal Endometriosis may feel like:

The Symptoms

Here’s a list of symptoms I’ve been able to find that have been associated with renal Endometriosis (you may suffer from some or none of these):

  • Blood in urine
  • Flank pain
  • Renal colic (pain that may feel like you have kidney stones)
  • Lower back pain
  • Symptoms may (or may not) get worse during menstruation
  • Swelling
  • Uretal obstruction
  • Some people had zero symptoms

As always, keep track of all of your symptoms, your pain, any triggers, and the timeline of when these symptoms appear.  It’s very important to walk in with tangible proof of your symptoms.  And, as always, these symptoms may also be signs of sooooo many other things.  It may not be Endometriosis affecting your renal system, but then again…it may.  Don’t discount it.  Please, talk to your doctor.

Published Studies of Endometriosis on the Kidneys

Besides the study referenced above, here are more examples of Endometriosis being found involving kidneys.  I could no locate several studies that were published between 1950-1970, but I still found plenty!

Be advised: renal Endo is considered incredibly rare!  That being said, feel free to print out any examples in the Resources section below if you’re wanting to talk to your doctor about it.  As mentioned in one study, “…endometriosis of kidney is a rare manifestation of a common disease.”  But be aware that it can happen.  Track your symptoms. And always talk to your doctors.

The first known published case of Endometriosis inside the kidney came out in 1943…seventy-five years ago!  Victor Marshall did a lot of research prior to publishing his study and couldn’t find any references to Endo inside the kidney, but did refer to a prior case with an instance of cells that might be Endometriosis on the exterior of the kidney.  But, back to Mr. Marshall’s case at hand:  a 40-year-old woman sought medical care.  Sixteen months prior, she developed a small mass in her upper left torso; six months later, she had complaints of constant swelling and left flank pain.  Sometimes the bump was tender, but her symptoms didn’t increase or decrease around her period.  Two months later, she vomited what she thought was blood.  A few months later, she found herself at Dr. Marshall’s clinic.  The chest and GI x-rays were normal, but the pyelogram (a type of imaging study) showed her left kidney was enlarged, deformed, and functioning less.  She was admitted to the hospital for further care.  The physical exam revealed a round firm mass where she told them it was.  Her lab results, including her urine tests, were all normal.  Surgery was performed.  The mass in the kidney oozed “old bloody fluid,” when it was pierced and they decided to remove her kidney.  Biopsy revealed several cysts inside, one of which oozed 500cc of “dark brown old blood.”  I had to look up how many ounces 500cc was.  Are you ready?  16 ounces!  That’s MORE than a 12-ounce can of soda!  All of the pathologists who reviewed the lesions inside the kidney agreed:  it was “endometrium tissue.”

A 1950 entry in The Journal of Urology is about a 29-year-old woman in 1948 who checked into a local Chicago hospital because of blood in her urine, which had occurred on and off for the past three months.  In 1946, she also had blood in her urine but it lasted for only two weeks.  Her symptoms did not coincide with her period and didn’t seem cyclical in nature.  A physical examination revealed nothing abnormal about her kidneys or abdomen.  Urine tests were positive for red blood cells. An x-ray (excretory urogram) was performed: the left kidney appeared normal, but they had a hard time visualizing the right kidney.  A cystoscopy revealed the bladder was normal.  A pyelogram found the right kidney had abnormalities.  Surgery was performed and  showed several bulging areas which had cysts, one of which was drained of 20cc of “chocolate colored fluid.”  At that point, her entire right kidney was removed.  Pathology confirmed Endometriosis.  Slides of the kidney tissue were also presented at a seminar of pathologists and the group agreed with the renal endometriosis diagnosis.  By 1950, the patient had no recurrence of symptoms.

In 1969, a 43-year old woman was admitted to a Nevada hospital for blood in her urine that had been on and off for the past three months.  She had a history of heavy and painful periods and received a surgically-confirmed Endometriosis diagnosis seven years ago.  A cystoscopy and pyelogram confirmed bloody urine was coming from her right ureter.  A large defect was also visualized on her right kidney (it was a presumed blood clot since it appeared full of blood) and a renal tumor was also observed.  Surgery was performed and they removed her right kidney and most of her right ureter.  Many small cysts were found inside the kidney, and each contained bloody fluid.  The tumor on her kidney was akin to an endometrial polyp.  There was no Endometriosis located within her ureter that was removed.  She continued to treat with her gynecologist for her Endometriosis and was placed on hormone therapy.

A 1976 study was published of a 23-year-old woman who complained of lumbar pain.  Four years earlier, she had a urinary tract infection and two prior kidney infections.   A year before she was admitted into the hospital, she complained of tenderness around her right kidney.  She was treated with antibiotics, but it didn’t diminish her pain. In fact, her lower back pain worsened and became constant.  Imaging studies of her right kidney showed a mass on her kidney.  Surgery was performed.  The 3cm mass was punctured and oozed yellow pus, which later tested positive for E. Coli presence.   While examining her kidney, another mass was found, which was a suspected clear cell carcinoma.  They removed her right kidney.  Pathology found the mass to be Endometriosis.  Since her surgery, she was symptom-free.

In 1980, a 40-year-old woman had a dull, aching pain in the right side of her body, just below her rib cage, for five to six months.  She had no other symptoms.  During a physical examination, a mass was found in her right loin.  An pyelogram was taken and showed excess fluid and loss of function of her right kidney.  Surgery was performed and her kidney was found to be enlarged.  A “glistening membranous” cyst was on her kidney wall.  Surgeons removed her kidney and biopsied the abnormality.  The cyst was filled with a “brownish gelatinous membranous fluid” (sound familiar?) and it was diagnosed that she had an Endometrioma on her kidney.

The British Journal of Obstetrics & Gynaecology published a study in 1991 about a 25-year-old woman.  In 1981, she had blood in her urine, but all tests came back normal.  Over the next three years, the presence of blood was a daily occurrence.  She also developed back pain, which got gradually worse.  Her symptoms were worse after physical activity but didn’t seem to heighten when on her period.  In 1984, imaging studies found a possible tumor on her left kidney.   A puncture test was conducted on the cyst and renal Endometriosis was suspected from the pathology results.  The young woman was referred to a gynecologist.  She underwent a laparotomy and her surgeon discovered an endometrioma on her ovary; it was excised.  No other Endometriosis was located in her pelvis or abdomen.  After surgery, she received birth control pills, which she took for six months and her period stopped.  However, blood persisted in her urine.  Four months after she stopped the birth control pills, her back pain once more became severe and she continued to have blood in her pee.  She had a laparoscopy performed and there were three 1mm endometriomas discovered.  She was given Nafarelin (a GnRH agonist) for the next 11 months.  By the fourth week of treatment, the blood in her urine and her back pain stopped.  Once she stopped the Nafarelin she had another exploratory laparoscopy, in which no Endometriosis was discovered.  But two months later…her urine once more contained blood.  A CT scan showed a new cyst at the site of the original one on her left kidney.  Another puncture test was performed, but the results came back normal.  Three months later, she once more had constant blood in her urine and a recurrence of her low back pain.  She was once more placed on Nafarelin for another eight months.  After the first month of use, she was symptom-free and remained so at the time the study was published.

In 2006, a study was published in Saudi Medical Journal about a 38-year-old gal who had abdominal pain for about two months.  She didn’t have any history of painful periods, urinary symptoms, or irregular periods.  She was described as presenting as “toxic, sick looking” and feverish.    Imaging studies found an ovarian mass and an exploratory laparotomy was performed.  Her right kidney was enlarged and had lesions on it and her right ureter had dilated.  Surgeons removed her inflamed fallopian tubes and both ovaries.  They also took a sample of the kidney lesions.  Pathology confirmed that her ovary and the kidney lesions were Endometriosis.  After the surgery, she responded well to Danazol treatments.

A 2009 report is about a 46-year-old woman who complained of three months of lower back pain.  The pain wasn’t worse on her period.  Physical examination and palpitation revealed a mass in her left upper abdomen.  Urine analysis and blood tests were normal, but an ultrasound and CT scan confirmed a mass on her lower left kidney.  They believed she had a hematoma on her kidney and inserted a catheter (for six days) to drain it.  The mass shrank a bit after the drainage but didn’t disappear.  She had a follow-up visit scheduled for a month later but had to be admitted to the hospital prior to that date because of left thigh pain that caused her issues with walking, nausea, and vomiting.  She underwent a surgery to look at her kidney; the hematoma mass was removed from beneath the surface membrane of the kidney and biopsied.  She received a renal Endometriosis diagnosis; the Endometriosis was lodged beneath the hematoma.  There was no recurrence of symptoms a month after her surgery.

Now hold onto your hats…a 2012 study was about a 13-year-old girl!  This child had blood in her urine and suffered from cramps while peeing, pain in her lower back (more on the right side), and vomiting.  Her symptoms had been on and off for about two years and were worse around her period.  Imaging studies led the doctors to believe she had a kidney stone.  Upon physical examination, her abdomen was somewhat swollen and she had some tenderness near her belly button.  She underwent a barrage of tests and multiple various imaging studies.  The kidney stone diagnosis was replaced with a renal Endometriosis diagnosis.  The clinic did not want to conduct surgery to confirm their suspicions, though (they opine that invasive techniques on teenagers isn’t justified).  She was released and told to seek a surgery consult.  The authors do state, however, that her medical history, symptom history, the fact that it follows her period, and the nodule that showed up her kidney in imaging studies was enough to confirm their suspicions.  (This study was roughly translated from Russian to English and I fear I’ve missed immense details).

In 2013, a woman complained of sudden right flank pain.  She had a history of painful periods and lower back pain.  A mass was felt in the right upper quadrant of her abdomen and a CT scan confirmed the presence of a “huge” renal tumor on her right kidney.  She received two months of conservative treatment, but the tumor did not recede.  Surgery was performed, her kidney was removed, and a biopsy confirmed it was Endometriosis.  Afterward, she was prescribed Danazol and had no recurrence at her 10-month follow-up.  (Sidenote: there’s a photo of the inside of her kidney showing the cysts within…)

Published in 2015 in the International Surgery journal, one study followed a surgery that took place in 2013.  The purpose of this study was to warn others about the misdiagnoses that may occur with renal Endometriosis.  A 37-year-old woman had recurrent dull pain in her right lower back.  The pain worsened during her period for the past six months.  She did not have any blood in her urine or even abdominal pain.  Just back pain.  She also didn’t have a history of painful periods, painful sex, or prior abdominal surgeries. An ultrasound found that she had fluid backed up into her right kidney as well as kidney stones present in the kidney and right ureter.  An x-ray confirmed these findings.  She was given drugs to treat the stones, as well as underwent shock wave therapy.  Neither made her back pain go away.  She was admitted to the hospital in October.  Further x-rays showed the stones were still present, and that her kidney was deformed.  A CT scan showed a mass on the lower right portion of her kidney.  It was thought to have been a tumor.  Surgery was performed to remove her kidney (due to the size of the suspected tumor).  No other lesions or masses were found around her kidney.  When cut, the mass contained “brown, serumlike fluid” within the kidney.  Pathology confirmed that the mass was Endometriosis, and not a tumor after all.

A later 2015 study was about a 53-year-old woman who had gone to the emergency room because of flank pain that she had for several years and she had a mild fever.  An x-ray showed she had stones in both kidneys.  An ultrasonogram also showed that her right kidney was contracted (her kidney appeared scarred and atrophied).  She was admitted for a suspected kidney infection.  A CT scan showed an abscess in her right kidney, too, which invaded into her psoas muscle.  The abscess was drained and three days later her right kidney was removed.  Lesions were found within the kidney and she was diagnosed with renal Endometriosis.   And the patient was symptom-free at her follow-up appointments.

Now what?

This blog entry is not intended to scare you.  It is meant to educate you.  Endometriosis has been documented on and inside the kidneys.

If you fear you may suffer from renal endometriosis, keep track of your symptoms.  That’s crucial.  Bring your diaries and notes and these studies to your physician.  The good news? In all of these studies, a mass was visualized in imaging studies.  And in most cases, a physical mass was felt during a physical examination.

Start there.

Even if you don’t have renal Endometriosis, you really can’t mess around with symptoms of any type of trouble with your kidneys.  Backaches? Abdominal aches?  Blood in your urine?  Run to your doctor…whatever it may be, it’s not normal and may be a sign of something far more detrimental to your health.

Resources:

BMC Research – (Article, Oct. 2015) – Endometriosis in a Kidney with Focal Xanthogranulomatous Pyelonphritis and a Perinephric Abscess

British Journal of Obstetrics & Gynaecology – (Abstract, April 1991) – Renal Endometriosis Treated with Gonadotrophin Releasing Hormone Agonist.  Case Report. (full article may be accessed here)

Child’s Health – (Abstract, 2012) – Renal Endometriosis in a Child (full article may be accessed here…head’s up – it’s in Russian.  I used DocTranslator to read it in English)

Fertility & Sterility – (Abstract, July 2009) – Renal Endometriosis Presenting with a Giant Subscapular Hematoma: Case Report (full article may be accessed here)

Il Giornale di Chirurgia – Journal of Surgery – (Article, Dec. 2017) – Renal Endometriosis Mimicking Complicated Cysts of Kidney: Report of Two Cases

International Surgery – (Article, 2015) – Renal Endometriosis Tends to be Misdiagnosed as Renal Tumor: A Rare Case Report

Journal of Endourology Case Reports – (Abstract, Oct. 2018) – Renal Endometriosis: A Case of an Endometrial Implant Mimicking a Renal Mass (full article may be accessed here)

National Cancer Institute Anatomy of the Kidney & Ureter

Saudi Medical Journal – (Article, 2006) – A Young Woman with Endometriosis of Kidney

Scandinavian Journal of Urology and Nephrology – (Abstract, March 1976) Renal Endometriosis (full may be accessed here)

The Journal of Neurology – (Abstract, March 1980) – Endometrioma of the Kidney: Case Report (full article may be accessed here)

The Journal of Urology – (Partial article, Dec. 1943) – The Occurrence of Endometrial Tissue in the Kidney (full article may be accessed here)

The Journal of Urology – (Partial article, Oct. 1950) – Endometriosis of Kidney (full article may be accessed here)

The Journal of Urology – (Partial article, Sept. 1969) – Renal Endometriosis Associated with Hematuria (full article may be accessed here)

Urological Science – (Article, March 2013) – Renal Endometriosis Mimicking an Angiomyolipoma

~ 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

Endometriosis Caused Leaking Out of a Hole by the Hip?

Drainage ditch leaking sewage

What the heck am I talking about?

There’s a study published in August of 2018 that I just read, and it threw me for a loop. So I wanted to share it with you.

A 52-year-old woman went to her Primary Care Physician because she had a weird leaking hole near her right hip.  It just drained a nasty discharge.  He put her on antibiotics for two weeks, but it didn’t resolve.  After suffering from the drainage for two months, she went to the emergency room.  If you’re curious, you can see a photograph of her little hip-hole.

Her prior medical history included a nephrectomy (the removal of one or both kidneys) and a c-section.  She also denied any changes to her bowel habits, any signs of infection, or abnormal weight loss.  She didn’t have any signs of fever, her white blood cell count was normal, her blood circulation was fine, and her abdomen was a little bit tender.

A CT scan found a “cystic lesion” near her lower right pelvic area and a fistula that exited out of her body near her right hip.  Now before I go on, I had to look up what the heck a fistula was.

In my super layman understanding? It’s a hollow tube from one place to another.  In this poor woman’s case? From her bowel to the outside of her body.  The authors classified it as an enterocutaneous fistula…You can only imagine what that discharge must have been. (Ewwww)

Due to the surprising results of the CT scan and a concern for a bowel perforation, she underwent a laparoscopy.   The cystic lesion discovered in the CT scan was “severely adhered” to her pelvic floor and to her bowels where her small intestine and her large intestine meet, aka the terminal ileum.  They removed the mass and the section of intestines in one fell swoop and the biopsy results came back as positive for Endometriosis…so she received a diagnosis of Ileal Endometriosis.  The authors of the study believe that this Endometriosis caused the enterocutaneous fistula…the hole that she had been leaking discharge from her right hip.  She was released from the hospital six days later without further incident.

Not only is this incredibly rare…it’s believed to be the first case of its kind.  So please don’t panic at every oozing sore you may have on your body.  BUT…do arm yourself with the knowledge that it can happen.

I was amazed and flabbergasted by this study.  Of course, the authors don’t opine as to how the ileal endometriosis caused the enterocutaneous fistula, but chalk that up to one of the many mysteries of our illness.

Resources:

Journal of Gastrointestinal Surgery – (Abstract; Aug. 2018) Ileal Endometriosis: a Rare Cause of Enterocutaneous Fistula  – Please contact me if you’d like to read the entire article

Inner BodyTerminal Ileum

UCSF Health – Enterocutaneous Fistula

~ 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

EndoBelly: Before & After Pictures

One of our local San Diego EndoSisters, Michelle, had a flair-up of EndoBelly yesterday afternoon.  If you suffer from these, you know what we’re talking about.  If you’re not sure what it is, I tend to think it’s the disease inside my body inflaming and rearing its ugly head.  The bloat is severe.  The pain is thick.  The skin is stretched to an extreme.  The pants must come unbuttoned.  People would ask “When’s the baby due,” having NO idea I wasn’t pregnant.  When it happens, I must pop a pain pill and find comfort in a bed and a heating pad.  And, for me, it can pass after a few hours or a few days.

But what a difference a day makes.  Michelle granted me permission to share her image here.

38851736_1129295840559198_5630984012349571072_n

On the left (in the red) is yesterday’s EndoBelly in all it’s swollen glory.  And on the right (in the black)  is today’s deflated and back-to-normal belly.

What a difference a day makes!  And these before & after photographs bring a visible sense to an invisible illness.  Thank you, Michelle, for allowing me to share your photograph.  And your pain.  Love you, woman.

Do you suffer from EndoBelly? Tell us about it in the comments below.  Anything help you cope ’til the swelling subsides? Share away!

Livia: A Device That May Help Period Cramps & Period-Related Lower Back Pain

Boxed Livia unit for menstrual cramps

Some of you may be asking “What is Livia?”  It’s been hyped in the news and social media since 2016 and has recently made a comeback in my Facebook newsfeed.  Livia recently won the Gold for Women’s Wellbeing at the  Edison Awards.  Imagine a tiny device that you can wear around discreetly all day.  It retails for roughly $150 on MyLivia’s webpage and Amazon and you can purchase additional gel pads to use for future cycles.

Some have compared the Livia to a TENS unit.  TENS units can be large, bulky, cumbersome, and not to mention intimidating with all of the buttons, wires, and knobs.  Sure, I can figure it out…but then I’d also have to lug that thing to work, out shopping, etc.  The Livia is a small, discreet, and incredibly user-friendly medical device.  It supposedly works by tricking the mind by keeping it busy with a little electric pulsing that deflects or confuses the pain signals going up to your brain…I had my doubts.

A study of 163 women who suffered from severely painful periods was conducted, and 80% of them reported that Livia either “helped to either significantly or completely eliminate their use of pain medications while menstruating.”  There was a recent 2018 study conducted on the effectiveness of Livia to treat painful periods, and those results will hopefully be released by the end of the year.

As a side note regarding Endometriosis pain (which, as we know, can be far more severe than normal menstrual cramps), Livia’s manufacturer can’t recommend Livia for use in treating endometriosis until an independent clinical study among endometriosis patients is completed in 2019. However, dozens of endometriosis suffers have posted messages reviews on Amazon and other places saying that Livia is very effective in reducing or eliminating their endometriosis pain.

On June 17, 2018, I wrote Livia to inquire if I could connect with someone at the company to discuss their product and how it has helped women with Endometriosis.  I also asked if they’d be able to provide me customer testimonials by women who suffer from Endometriosis.  I explained who I was and that I suffer from Endometriosis and write a blog about the illness.

A day later, I had a response.  After answering a few questions about my blog and my intentions, Livia offered to mail me a unit in exchange for my unbiased opinion and review.

I jumped at the chance!

It arrived from Israel on June 27, 2018.  I took copious notes and wanted to share my experiences with you!

The Great Unboxing!

As of the writing of this blog (July 9, 2018), I used the Livia from June 28, 2018 through July 4, 2018.  I expected to start my period the week of June 28, 2018.  I experienced all sorts of cramping and PMS symptoms, but alas, my period never came (sometimes I skip a month).  But, my pain was elevated enough where I believe the Livia got a good test run.  And I look forward to testing it out on future painful days.  I also had another excision surgery on July 18, 2018, so it will be a few months before I will be well enough to test the Livia again.  But test I shall!  Stay tuned!

I also learned that Livia is only intended to be used for menstrual cramps and lower back pain associated with menstrual cramps.  Due to my Endometriosis and resulting scar tissue, I also experience pain on the lower edges of my pelvic region near my hip bones, and along the underside of my ribs.  The Livia is not intended for use in those areas.  In fact, any placement of the Livia gel pads near the thoracic region is strictly forbidden.  And I asked about the use of Livia for neck or shoulder pain: again, please do not use the Livia for any other area of the body except menstrual cramps and menstrual-related lower back pain.

Okay, on with the show!  Below is a summary of my experiences (unless you’d rather read my detailed notes). 

  • June 28, 2018: It tickles.  But you soon forget about the tickle and pretty much forget you’re wearing it.  For me, my ideal setting was hitting the + Button twice.  So, let’s call it Level Two.  Anything beyond a pleasant tickle is too much, according to the user manual.
  • June 28, 2018: PMS cramping pain was a 4-5 out of 10.  It dropped to a 1 out of 10 just 17 minutes later. Within an hour of turning it on, I had zero PMS cramping.  I turned off the unit, and my pain returned an hour and 15 minutes later.
  • June 28, 2018: PMS cramping pain was a 4 out of 10.  Within 45 minutes (took some time to adjust the settings), the pain had reduced to zero!  Sometimes it crept back up to a one but dropped back down quickly to zero.  Turned off the device an hour after turning it on.
  • June 28, 2018: PMS cramping pain returned within an hour of turning off the Livia.  It was a 4 out of 10, but within 15 minutes of wearing the Livia on Level 2, it had once more reduced my pain to a zero out of 10!!  Turned off the device after an hour of having it on.
  • June 28, 2018: Pain returned within 10 minutes of shutting off the device.  It was now a 5 out of 10.  Turned it back on to Level 2 and within 20 minutes, pain reduced to zero…again!  Kept it on for about an hour.
  • June 28, 2018: My biggest tip to pass on about the Livia?  When you have to use the restroom, instead of unclipping the unit from your pants or dress or shirt, simply turn the device off and unplug the gel pads cable from the unit.  Mind the dangling “tail” as you pee, then reattach it when you’re done.
  • June 29, 2018:  PMS cramping returned at a 5 out of 10 and I reached for my trusty Livia, turning it on to Level 2.  Within 15 minutes, the cramps subsided to a zero out of 10!  It turned off the Livia five minutes later.  While driving, my Livia pad felt a little squiggly on my skin, and I pulled over and looked down.  It had peeled half-way off.  Not off of my skin, but off of the flower pad.  So I peeled it all the way off and stuck it back on, smooshing real hard.  It remained on the rest of the day.
  • July 3, 2018:  I didn’t have any cramps for the past few days, but they came back at a 6 out of 10.  So I turned my Livia on to a Level 2 for 15 minutes and my cramps were reduced to a 1 out of 10.
  • July 4, 2018: Cramping was a 6 out of 10.  I grabbed my Livia, slapped on my pads, and plugged it in, turning it up to Level 2.  I couldn’t feel the usual buzzing-tickle on Level 2, so I bumped it up to Level 3.  About 20 minutes later, my cramps were back down to a wonderful 1 out of 10.

All of the pain I’ve felt since July 4th has been in areas that I was recommended not to use my Livia:  my lower pelvis near my hips, my under-ribs, and a weird spot near a cyst that I know exists.

I never tried the Livia on my lower back since that pain was been super manageable at a 1-2 out of 10.  But, when that pain exceeds a 2 or 3, I’ll be sure to try it out.

I am the most skeptical person you’ll ever meet.  Especially when it comes to products that are marketed specifically for conditions that a large population suffers from: like painful periods.  But this device was truly incredible.  I’m elated.  And flabbergasted.  And amazed.  And excited.

But was it worth it?  Of course, it was for me since I didn’t have to pay.  But would it be worth it for $150?  I’d like to say, “Yes.”  At least for me.  Livia offers a 120 Day Money Back Guarantee, although some online reviews mention that you have to pay a sometimes hefty international shipping charge to send it back to Israel.  And there’s a 2-year warranty on the product when you purchase it, so if it breaks during that time, you’re covered!

It’s small.

It’s adorable.

It’s easy to use.

It recharges on any mini-USB charger.

And, for me, it worked like a charm!

Granted, I couldn’t give it the 100% Endometriosis-period test…but it did help with a lot of my PMS pain and cramping.  And I also will be doing another full review after my surgery if my painful Endometriosis symptoms return.  Again…stay tuned!

Would I recommend it?  I’m gonna have to say Yes…but I will also highly recommend you keep your own notes and evaluate how well it works (or doesn’t) for you.  And take advantage of that money back guarantee if it doesn’t.  There is no shame in returning something.

what others thought:

A few of our blog readers have also started using the Livia unit with mixed results. Everyone’s bodies are different and, of course, not everyone will have the results that I did. So I wanted to share their experiences here:

  • 4/24/19: A fellow EndoWarrior, Kitty, purchased a new Livia unit and calendared the date she had to return it in order to get her refund, if needed. Here’s her short report: My pain was not too bad this month, but uncomfortable enough that I had to take Advil. There are times when Advil doesn’t work. I used Livia a few days straight and a few hours at a time. I can no conclude that Livia or TENS does not work for me. Not even slightly. I am returning the device and I am glad that I am able to ship it back to Atlanta and not Israel.

If YOU would like to share your review of the Livia unit on our blog to help others make their own decisions to try it out, please contact me.

(Updated April 24, 2019)

Resources:

Clinicaltrials.gov The Effectiveness and Safety of LIVIA Transcutaneous Electrical Nerve Stimulation (TENS) in Women Suffering from Primary Dysmenorrhea.

HealthcareDive.com – (Press Release) Livia – Drug Free Solution for Menstrual Pain Now HAS FDA, CE, and Health Canada

MyLivia.com – FAQs on the manufacturer’s page

~ 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

Orilissa: AbbVie’s New Drug to Manage Endometriosis Symptoms

Screenshot of FDA Drug Label for Orilssa
Screenshot of FDA Drug Label for Orilissa, July 24, 2018

You may have seen news articles and press releases flying around the Internet since yesterday regarding a new drug released to manage Endometriosis pain.  I wanted to share this with you because, although I’ve no intention of taking the drug myself, I know that it may help women who suffer. And it may help better educate you on your decision.

I’ve been following it for a while and you can read my thoughts about AbbVie’s SpeakEndo commercials and website, as well as their expedited application for FDA approval, and the track records of other drugs that have done the same.  And according to Business Insider, Orilissa may cost approximately $850 per month, or roughly $10,000 per year for prescriptions (I’m assuming those figures are calculated without health insurance).  Orilissa is estimated to hit markets for prescriptions in August of this year.

So, here you go:

On July 23, 2018, the Food & Drug Administration approved AbbVie’s new drug to treat Endometriosis pain. You may have seen it referred to as Elagolix, but it has been officially named Orilissa. It is an oral GnRH antagonist.

Please do your own thorough research before talking to your physician.

In the Resources section below is a link to the FDA’s drug fact sheet, which includes a .pdf of the pamphlet that should come with the drug. Read it. Review the clinical trials. And decide for yourself.   You can read the .pdf which I have downloaded, or by accessing the FDA’s site and downloading it for yourself.

It appears it has limited allowable dosing (6 months to 2 years), may cause liver issues, may cause bone loss, may cause depression and suicidal thoughts, and may interact with hormonal birth control. Some adverse reactions during clinical trials included appendicitis, abdominal pain, back pain, hot flashes, night sweats, nausea, decreased bone mass density, headache, insomnia, mood swings, depression, lack of a period, anxiety, joint pain, decreased libido, diarrhea, weight gain, dizziness, constipation, and irritability.

One participant in the clinical trials committed suicide two days after she stopped treating with the pill. She was 44 years old, had treated for one month, and had no medical history or life stressors that would have been indicative of suicidal thoughts.

Where did I get all this info? The FDA drug pamphlet.

Don’t trust me, read it for yourself.

Weigh the pros and cons.

And talk to your doctor.

A February 2019 study showed that women in Phase 3 Trials of Elagolix had improved period pain and non-period pelvic pain than those who were given the placebo pill. It stated that most adverse events were mild to moderate, but there was a risk of bone loss among patients.

We are our best advocate. Do what you feel is best for you. But, please, do it informed and do it safely.

Knowing how poorly my body handled Lupron Depot (another AbbVie product that is incredibly similar), and how I became so severely depressed and suicidal on it, I will never again subject my body to something similar.  It did nothing in the long-term to stem my Endometriosis.  And was an incredibly difficult journey while on Lupron, as well as a long while before my body cleared itself of any side effects.  That is why I choose not to take Orilissa.  The decision is an individual one.  Never again.  But, again, I will never tell you not to try something; it may very well help you cope with your symptoms.  Understand, though, that it is a band-aid.  It will mask your symptoms; not clear your body of Endometriosis.  I learned that one the hard way…

If you do your research and make a well-informed decision to start (or not start) Orilissa, I wish you all the best of luck and health.  There are no judgments here.  Only well-wishes.

And, if you wish to see a quick snapshot of the participants and findings of the two clinical trials, please visit this FDA page.

**Updated February 5, 2019**

Resources:

AbbVie – (July 24, 2018; Press Release) AbbVie Receives US FDA Approval of Orilissa (elagolix) for the Management of Moderate to Severe Pain Associated with Endometriosis

Business Insider (July 24, 2018; Article) A New Treatment for a Condition that Can Feel Like Tiny People Skating on Razor Blades in Your Stomach and Affects an Estimated 200 Million Women Just Got Approved

Drugs & Therapy Perspective (Feb. 2019; Abstract) Elagolix in Endometriosis-Related Pain: a Profile of its Use and Approved in the USA

US Food & Drug Administration – Drug Database: Orilissa

~ 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