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

Share Your Story: Mummy

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“Mummy” was 29 when she was diagnosed with Endometriosis.  Now 32, she shares her journey with us.  Mummy lives on the island of Antigua, and faces the struggles of limited options when it comes to healthcare.

Mummy’s Journey: I started getting horrible pains when I was around 25 years old and I did not realize what it was because I always took Advil painkillers.  They did help but I realize after my period was finished I was still feeling pain and my legs, I couldn’t walk, and just feel too tired.

You can say I visited all the Doctors mentioned in your blog. Dr. Roberts was the one who told me I might have endo. I did not know anything about the disease she said to do some research; I did. I felt like she was not helping me just putting me on contraceptives and I have to spend a lot of money every time I visited her. She would perform ultrasounds every time I visit which was pretty often and said she had not seen any cyst or fibroid at the time. I decided to stop seeing her because I felt that she was not understanding to my pain and so I traveled overseas to another Caribbean island where I saw a Doc.

He examined me and I did a few tests. I had a cyst on my left ovary. I could not stay on the island as I lived and work in Antigua. The Doc told me they had to monitor it (cyst) for three months.  Of course, I couldn’t stay so I came back to Antigua.

I saw Dr. Wynter and Dr. Mansoor I felt that they could not help me.

One day a friend of mine told me that Dr. Dean Martin was on ABS talking about the Endo.  I decided I was going to make an appointment to see him, in which I did and he told me after examining me with the pains I had, a laparoscopy was the best option to see what’s happening.

I did the surgery (four hours) of course he told me I have stage four endometriosis and a cyst that had ruptured.

I was placed on sick leave after recovery the pain definitely did not go away I had longer periods and worst pain the only good the surgery did for me is that I could have sex without feeling so much pain during or after sex. I felt like I paid a lot of money and was still in so much pain.  My job wrote me a letter to say I am always sick and they would reconsider my employment with them because I would always call sick. I was working with this prominent Security Firm and even though I worked there for 8 years and informed my boss personally about my condition it did not matter to him.

I would overdose on the painkillers so that I would not have to deal with the pain by falling asleep. My doctor told me I should not wait to have children because of the endo, I just felt so lost and I would just stay in my house and I did not want to come out to socialize with people or anyone. I would lay on my bathroom cold floor just to get relief. Somedays I feel like ending my life until I met this wonderful herbal doctor, Dr. Elra, right here in Antigua. I was feeling so much pain I end up at ER and my friend told me about him and I went and visited him he is amazing.  God is truly awesome.  Diet, plus colon cleanse and medicine healed me less than a month. I do not feel the pain, I am totally pain-free. It’s expensive, but Dr. Elra is the best.

**

I want to send a special Thank You out to Mummy for being brave enough to share her personal story, struggle, and victories with us today.  And I am so grateful you were able to find Dr. Elra and relief!  We hope it continues for you! ❤ And your quote, “I had to lay on the bathroom floor just to get relief,” struck me so hard – I think each one of us reading your story today have been there. Thank you for sharing.

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And if YOU would like to share your story, you can do so by clicking here.  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.

Feel Good Fridays

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Today’s quote is by one of my EndoSisters who is continuing to battle to get the healthcare that she deserves.  We were talking this week about her sub-standard care by an Endometriosis “expert,” and Celia’s unwavering determination to keep fighting.  And she shared her mantra with me…which I fell in love with.

“Chin up, fangs out!” ~ Celia Pellegrin

So, to ANY of you dealing with ANYTHING that requires your determination, tenacity, persistence, and strength…hold firm!  Keep going.  And, as Celia says: Chin up, Fangs out!!  You’ve got this.

Have an incredible weekend!

Love, Lisa

 

Blogs I Updated This Week:

Endometriosis & the Appendix – added an Oct. 29, 2018, study from the British Institute of Radiology about a 40-year-old woman who presented with right lower quadrant pain and lower back pain.  Also added a November 3, 2018, study from the International Journal of Surgery Case Reports of a 29-year-old woman who complained of lower right pain, nausea, and vomiting the day after her period started.  Care to guess their diagnoses?

Endometriosis & the Kidneys

kidney

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

Feel Good Fridays

 

Where has the week gone?

Happy FRIDAY!

Today’s quote hit me in the gut.  And it’s something I truly strive do it…moreso as I get older.  You begin to value the things that truly matter to you…

“Live your life. Be happy as you can be, let go of the things that don’t matter, and fight.” 
― Kiera Cass, The One

May you do this, and do it well. For you.

Have a beautiful weekend, my friends.

Love, Lisa

Feel Good Fridays

2018 group picture

So another Friday is upon us.

I’m sharing this quote a little bit later than normal because I was scouring through pages and pages of quotes until one hit me.  And this one did.  Right in the Feels.

“Surround yourself with people
who don’t just ask
how you are doing.
Surround yourself with people
who make an effort to 
make sure they are part of
the reason you are doing so well.” 
― Jennae Cecelia, Uncaged Wallflower

Now go back and read it again. Slowly. Let it sink in.

And take it to heart.

Live it. Love it.

For those of you that surround me, I know you love me and I know that your intentions are pure and your words are sincere.

I freakin’ love you guys.

Have a wonderful weekend!  Love, Lisa

 

Blogs I updated this week:

Dungeons & Dragons & Donuts – added our September session, where we meet a new party member: Brinn, the half-elf ranger.  We also start our trek to retrieve the mythril cube (and hopefully save our hands)!

Support Group – on November 10, 2018, we’ll be having our support group meeting at Casi Cielo Winery! If you’re available, come join us!

Share Your Story: Mollie

mollie

Mollie was diagnosed with Endometriosis when she was 20.  Now a year later, she shares her journey with us.

Mollie’s Journey: It all seems full circle to me after about 7 years.

At about 13 is when I got my first period and my symptoms began to start at 14 from what I can remember. What I do remember vividly is the pain, daily. My mother thought I was just trying to skip school because the only thing I could explain to her was that my tummy hurt. Any mother would think that a 14-year-old that complains of a “tummy ache” almost everyday is just trying to get out of class so I can’t blame her for any of that.

She took me to a doctor after some time to see if I had an dietary issues and the doctor concluded I was lactose-intolerant. I tried that for a couple of years, of course never worked. My mom figured maybe they were my cramps beginning to start so at the ripe age of 14, I went and got birth control.

At 16, I ran to my sister’s room to tell her that I was really starting to be in pain when I went to the bathroom. She told me that was normal, I probably had gotten a UTI and that she had one before, it was no problem. Pretty soon I was getting UTI’s and yeast infections monthly or so I thought. I went to my primary care doctor, they prescribed me antibiotics. Still happened monthly.

I then went went to my gynecologist, she decided to put me on a different BC. Didn’t work. I explained to her how bad my cramps were getting even in between my period. Cue ultrasounds for cysts! Nothing showed up. Through 4 doctors, painful examinations, and countless “it’s normal for a girl your age”s, I kept going, hopelessly.

At 18, I went to college that came with new doctors and questions. By this time I had been “diagnosed” with chronic UTI’s. Finally, I went home over a weekend during my junior year where I met a new doctor. She asked me if I had ever hear of Endo. It was the first time the word ever left my mouth and now it’s part of my everyday vocabulary. I will never forget that meeting. She spat out all the worst case scenarios that happen to women with this disorder.

The gynecologist I had seen since I was 14 decided to do my laparoscopy before I could even call my mom. I told them I needed to talk to my parents. I got a call the next day that my surgery was scheduled for 2 weeks later! I have midterms?! Of course the first thing that crossed my mind because I had no idea what was going on. Google was my friend at the time and oh how scared I got in a short amount of time. I told my dad who consulted friends to find me a second opinion.

The next doctor confirmed and proceeded with my surgery and did a Endometrial ablation. Surprise surprise! I was back almost every week following the two week mark of my surgery.

This is where I felt crazy. My doctor told me she had sorted it out. That it was done. The endo was gone. The pain is in my head because I had some sort of PTSD. I told her I was worried about kids. She told me I needed to see a therapist. I told her it feels no different. She told me my body wasn’t “used” to it yet. I was horrified. I left the doctors office wiping tears from my face.

That’s when I found Bloomin’ Uterus and this wonderful support group along with Nancy’s Nook. I decided to schedule an appointment with Dr. Orbuch. She truly has been my angel in the dark and erased my resentment of myself. I cried tears of happiness in her office as she looked over my medical records. She explained to me that my Endo was very much still there and that the ablation had a “plastic melting” type of effect. That my pain was normal. That I need to go see a fertility specialist. That I need ultrasounds and physical therapy.

Most of all she gave me hope.

Two appointments later, I have been officially diagnosed with Endometriosis, Interstitial Cystitis, and Pelvic Floor Dysfunction. I know have excision surgery scheduled for December 11th and couldn’t be happier!!!

Words of Advice:  Trust yourself and your body. You know it better than anyone else. There will be many doctors, family, friends, and strangers that try to downplay everything you are feeling but you are a warrior.

The Last Word:: Most people will say I am too young to be vulnerable on social media talking about the female anatomy and to be in a support group but I think that is where my strength comes from. If anyone at all needs to talk to someone, I am always here!

If you would like to email Mollie, please feel free to do so here.

I want to send a special Thank You out to Mollie for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your upcoming surgery!  And please let us know if you need ANYTHING during your recovery ❤

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And if YOU would like to share your story, you can do so by clicking here.  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.