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

Possible relief from painful sex or penetration? Vuva Magnetic Dilators.

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Vuva-whata-what?

I found these little pink … things … back in October 2016 when I was experience A LOT of pain with sexual intercourse.  I mean, a lot.  I was desperate.  After reading the reviews on how many women who use Vuva Magnetic Dilators had relief from painful sex, I was hooked.  But…I also couldn’t afford to purchase the kit.  And, let’s face it – I had my doubts about magnets in dilators (dildos?) helping me with anything.

So, I wrote the company.  Tara, the creator and founder, immediately wrote me back.  She, too, suffers from Endometriosis.  She also suffers from Vulvodynia and said her magnetic dilators helped her tremendously with her vaginal and pelvic pain, especially with sex!  AND – she offered to send me two dilators for free because she truly believed they would help and wanted to help women in pain.

She didn’t ask me to write this review.  I just wanted to.  And…again…I still had my doubts.

But before I get into my experience, I wanted to explain a little bit about my understanding of what the Vuva Dilators are and how they are supposed to work.

A dilator looks an awful lot like a sex toy you can buy anywhere.  BUT…a dilator is used for medicinal purposes and comes as a set of steadily increasing sizes/girths to help stretch the vaginal opening, or muscles inside the canal (no, I’m not good with scienc-y words).  This may sound painful, but you can get dilators that are *very* small, and work your way up to something that is more comfortable (or close to the size of your partner).  And it’s an incredibly slow and gradual process, stretching at your own pace, taking weeks to months. Vuva dilators are internally lined with Neodymium magnets, which supposedly help relax muscles and increase blood flow to the area.  You insert one of these bad boys for 20-30 minutes each day and that’s it.  There’s no stretching, no rubbing, no moving or wiggling around.  Just stick it in, watch a TV show while laying on the couch, and pull it on out. *voila*

For more information, check out their webpage, which has all kinds of info on why magnets are supposed to work and testimonials.  https://www.vuvatech.com/

Tara shared a study conducted by Physician Care Clinical Research comparing Vuva dilators to regular dilators.  From February 2015-December 2015, a clinical study of Vuva’s effectiveness was conducted on 12 women in Florida.  A year later, the final report was prepared.  The 17-page report outlines the study, which was a randomized, double blind, crossover study for vulva/vaginal pain.  The women had complained of ongoing vaginal/vulva pain for at least three months.  Four areas were covered during the study:  pain with tampon usage, pain of certain areas around the vagina via a cotton swab test, the way a woman felt emotionally about vaginal penetration, and sexual intercourse.

The study’s down and dirty after using Vuva magnetic dilators as instructed (well, my understanding):

  • 90% of the women reported a decrease in pain with tampon usage.  This figure is actually for women who used the Vuva Magnetic Dilators AAAANNNDD women who used the regular dilator (non-magnetic; placebo).  So, using a dilator may help women who experience tampon pain. BUT, for those who used the Vuva magnetic dilators, they experienced twice the amount of pain relief than with regular dilators.  Those who used the Vuva magnetic dilators experienced 30% less pain for the “tampon test.”
  • The cotton swab test was gently prodding a woman around her vulva with a cotton swab and recording the pain levels.  80% of the women reported a decrease in pain levels after using the Vuva magnetic dilators.  On average, 28% less pain!
  • Many women who experience vulva, vaginal, or pain with sex begin to fear the act of penetration itself.  All of the participants stated they had a higher sense of control and self-image.
  • Each woman also kept track of their sexual intercourse, as well as any pain associated with sex.  Unfortunately, half of the women didn’t have sex curing the length of the study.  But for the half that did, 80% of them had sex more often than before!

BUT what about me? Ready for TMI?

Before I started the Vuva magnetic dilators, sex was uber painful.  Don’t get me wrong – it can still be painful…but, we’d have sex, and it’d hurt 6-8 out of 10.  And I’d cramp for several hours (sometimes even into the next day) afterward.  Granted, I had my laparoscopic surgery on September 21, 2017 and was still healing by late October, BUT sex was uber painful and crampy long before that surgery.

Here’s a little tracker on my sex pain, Vuva usage, and my thoughts:

Oct. 16: had sex (me on top) and pain during sex was a 6 out of 10.  Afterward, my cramps were a 3-6 out of 10 and lasted for an hour and a half.

Oct. 29: had sex (me on top) and pain during sex was a 6 out of 10. No cramping.

Nov. 7: I began using IntiMD dilators (just a regular dilator).  Even with the largest dilator, I did not experience changes or anything.  Followed instructions and felt this program was not right for me.

Nov. 10: Used my Vuva Magnetic Dilator for the first time!  No pain or discomfort.  Felt warm and full/fluffy (…down “there”) after 20 minutes of use…in a good way, like having soaked in a hot bath.  Magnet magic? Maybe.  Began to use regularly (every day or every other day).

Nov. 11: Had sex (six hours after using dilator, that weird sideways spoony-sex).  Sex pain was a 2 out of 10, cramping was a 1 out of 10 and only lasted an hour.

Nov. 17: Had sex (sideways spoony-sex).  Sex pain was a 1 out of 10, cramping was a 3 out of 10 and lasted a few hours.

Dec. 1: Had sex (sideways spoony-sex and me on my stomach).  Sex pain was ZERO!!!!  Cramping was a 2 out of 10, and lasted about 30 minutes.

Dec. 3: Had sex (sideways spoony-sex and me on my stomach).  Sex pain was a 1 out of 10, cramping was a 2 out of 10 and lasted about an hour.

Dec. 4: Had sex (me on top, my laying on my stomach, and doggy style).  Sex pain was a 3 out of 10, cramping was a 2 out of 10, lasting about 30 minutes.

Dec. 14: Had sex (sideways spoony-sex).  Sex pain and afterward cramping were a ZERO! Oh my god.

Dec. 22: Had sex (sideways spoony-sex).  Sex pain and afterward cramping were a ZERO! Again!!

Dec. 24: Had sex (me on top).  Sex pain and afterward cramping were a ZERO!!!

Then I took a break from using my Vuva dilators due to the holidays…bad idea:

Jan. 4: Had sex (doggy style).  Sex pain was a 7 out of 10, cramping was a 3 out of 10, lasting about 30 minutes.  Vowed to renew Vuva usage!!  We’ve also since realized that doggy is just too deep for my nifty anatomy (I have a septated canal and two cervix) so we stick to less-penetrative positions now.

Jan. 19: Had sex (standing, from behind).  Sex pain and cramping were a zero!

Jan. 29: Had sex (standing, from behind).  Sex pain and cramping were a zero!

Feb. 23: Had sex (standing, from behind).  Sex pain and cramping were a zero!

March 7: Had sex (missionary, and sideways spoony-sex).  Sex pain was a 3 out of 10 and cramping was a 3 out of 10, which lasted into the next morning.  I had to take a Tylenol PM due to the pain.  It was also the day after my period ended, so things may have still been tender.

March 12: Had sex (me on top).  Sex pain was a zero, but cramping afterward was a 2 out of 10, which lasted about an hour.

**

That’s the extent of my tracking our sexual encounters and pain. We went from having sex maybe once every month or two to multiple times per month!  I felt like I was getting the “old me” back!  I was far more confident, less scared (although still a bit scared…), and very grateful.  And I even instigated several of our sexual encounters.  Woohoo!

Whether it was the magnets in the Vuva dilators, or the placebo affect making me feel better, or having recovered more fully from my September surgery (but remember, I did have this pain prior to surgery), or whatever – I’m grateful.

I must be honest – I haven’t used my Vuva dilators since March because life has been hectic and I haven’t set aside 20-30 minutes of my day.  I’ve been experiencing minimal pain with sex once more, and very minimal cramping.  But guess what?  After typing up my log today, it has renewed by desire to pick the program back up.

I am so grateful to Tara for the products.  And her support and encouragement.  If her products can help other women have less pain, I think that’s wonderful!  If you’d like to look deeper into Vuva Magnetic Dilators, the idea behind them, the instructions, the testimonials, or even purchase a set yourself, please check out https://www.vuvatech.com/

 

 

 

Guyana : Endometriosis Care & Treatment

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**Updated 10/29/16: If you live in Guyana and have (or think you have) Endometriosis, there IS an online support group created by a woman living in Georgetown:  https://www.facebook.com/groups/330769713952617/**

Guyana is a small English-speaking country located on the northeastern coast of South America, next to Venezuela and Brazil.  For a size-comparison, it’s slightly smaller than the state of Idaho.  It’s estimated that 736,000 people live in Guyana, most of whom reside in or near the capital, Georgetown, .  The majority of the country is covered in dense tropical forests.  The rest is grasslands, marshes, and cultivated urban areas.  Guyana has an 11% unemployment rate, and 35% of the population lives below the poverty line.   Unfortunately, nearly 155,000 residents live without electricity.

According to the C.I.A., nearly 2% of the Guyanese population is HIV positive, the Zika virus is actively transmitted throughout the country, and the citizens face a high risk of diarrhea, hepatitis A and typhoid fever due to poor water conditions.  In the past, there has also been a high mortality rate for mothers giving birth and/or their babies.  Guyana’s healthcare system is a blend of private and public (free) clinics and hospitals, located throughout the various regions of the country.

There are approximately 383,500 women in Guyana.  If one in 10 women suffer from Endometriosis, that means 38,000 Guyanese women may suffer from Endometriosis.  And I have been contacted by many asking questions about symptoms, diagnostic tests, and best ways to help with the pain.  It’s what spawned today’s blog.  And if you’re reading this and don’t know what Endometriosis is, but you suffer from painful periods (among other symptoms), please click here to read about the symptoms,  And, please, talk to your doctor.  If you don’t have a doctor, please try to make your way to a clinic or regional hospital.  And if you’d like, sign up for this Endometriosis Disease map and find women near you who also suffer from Endometriosis!

Due to the very rural areas of Guyana, many people are unable to seek appropriate medical care.  Some walk for miles though, others travel by canoe or small plane, and yet others simply do not have the means to travel to the more-populated urban areas for medical care.  The physician-to-patient ratio is staggering : less than one doctor for every 1,000 patients, and statistics show that there are two hospital beds to every 1,000 patients.  A study published in 2015 stated that out of nine hospitals across Guyana, there were less than 1 (0.7) OB/Gyns, 3.5 non-OB surgeons, and 1 anesthesiologist per hospital.  That same study found over half of those same hospitals reported routine water and electricity shortages.  There are also numerous reports of severe understaffing for specialists, nurses, and midwives throughout the country.

Although the economic and medical state of Guyana may sound grim, there are people and agencies trying to make a difference.  The Guyana Chronicle has published several health-related articles, including ones that focus on painful sex, Endometriosis, dioxin awareness, and cancer.  It’s so wonderful to see the media truly pushing to increase awareness and improve medical care.    The Government of Guyana is continuing to take steps to improve the quality and availability of healthcare throughout the region, spending hundreds of millions of dollars on upgrades throughout the country, as well as recruiting physicians from abroad (and encouraging local physicians to stay and practice in Guyana).  The country also receives extensive aid internationally.  Several doctors and organizations have devoted their time and energy into helping train medical staff in Guyana.  Guyana Medical Relief, a non-profit organization based out of Los Angeles, California, secures medications and diagnostic equipment for the hospitals of Guyana.  Since 1984, GMR has provided $60,000,000 worth of medical supplies and equipment to Guyanese hospitals and healthcare centers.  They have also provided shoes to thousands of Guyanese children in need.  GMR is just one of many organizations helping Guyana’s medical crisis.

I had the pleasure of speaking with a young Guyanese woman whom we shall call “C.S.”  Five years ago, she began to have horrible cramps, heavy bleeding, and a swollen abdomen.  Painkillers would help ease her pain for a while, but her body eventually rejected them.  Then in 2015, the first day of her period became unbearable, nearly causing her to fall.  She rushed to the Woodlands Hospital, explained her symptoms to the doctor, was given Morphine for the pain (which helped a little), and was whisked away to an ultrasound.  She had cysts on her ovaries and surgery was recommended.  Woodlands Hospital was too expensive, so C.S. was transported to Georgetown Public Hospital’s gynecologist clinic.  There they prescribed her a birth control pill, Diane-35, for June through August of 2015.  On November 4, 2015, she had the much-needed surgery, which took approximately 45 minutes.  The cyst on her left ovary was 13.5cm and the one on her right ovary was 12.5cm; her surgeons were able to save both of her ovaries.  Biopsies confirmed Endometriosis.  One month after her surgery, she had her cycle, and has been monitoring her symptoms ever since.  She continues to feel good today, her periods only have slight cramping, and her tummy is once again flat.   C.S. has a 5-year-old daughter (whom she loves very much), and she may be her only child – the doctor explained how difficult C.S.’s chances of becoming pregnant may be.  She urges any women who have any symptoms of Endometriosis to see a gynecologist early, go with friends or family – it could save a life.  She doesn’t know of anyone else who has been diagnosed with Endometriosis in Guyana.

In July 2014, Miss Guyana Universe 2013 (and Miss India Guyana 2013), Katherina Roshana, addressed suicide, depression, and mental health issues. She also stated that Endometriosis may lead to depression, urging people to become aware of suicidal signs.

Many women around the world claim a decrease in their Endometriosis symptoms, simply by altering their diet to include less inflammatory foods.  If you’d like more information on dietary changes, I have posted several articles that I’ve written (click here).    Guyanese diet mainly seems to consist of rice, beans, fruits, vegetables, and curries. A traditional meat dish, Pepperpot, is a stew made with either beef, pork, or mutton, and is considered the National Dish.  Chinese, Indian, and some American (Kentucky Fried Chicken) restaurants are also becoming popular in the more urban areas.  Coffee, tea, juice, and alcohol are well-loved in Guyana; however, tourists are discouraged from drinking the tap water.

I assume the steps to diagnosing Endometriosis, hormonal treatments, and surgeries are comparable to healthcare around the world.  I have emailed various hospitals and physicians in Guyana to see if they could shed some insight as to how they handle Endometriosis.  If any respond, I will update this blog and let you know.

I have gathered a list of hospitals throughout the country.  Should you need to speak with a doctor about Endometriosis, or any other pelvic (or other) pain you’re enduring, I hope one of these can help you:

Bartica Regional Hospital in Cuyuni-Mazaruni is nearly a 12-hour drive from Georgetown.  It lies between the Essequibo and the Mazaruni Rivers.  In 2016, the hospital received major renovations, including to the neonatal intensive care unit and their operating theater.  BRH went from having four doctors, to having 16, and they’ve seen a dramatic increase of surgeries in their region of Guyana.

Davis Memorial Hospital & Clinic in Georgetown is owned by the Seventh-Day Adventist Church, is staffed primarily by missionary doctors, and boasts of 40 hospital beds.  They are equipped to perform laparoscopic surgeries, as well as other procedures.

Diamond Hospital is the East Bank Demerara Regional Hospital and is 25 minutes south of Georgetown.  It treats nearly 100,000 patients each year and has been around since 2007.  Over the years, it has seen medication shortages (including allegations of an internal medication theft ring), personnel shortages, and broken equipment; so much so that the Public Health Minister declared the hospital “a disaster.”  A lot of the medical staff were imported from Cuba, which created a language barrier between doctors and patients.  The government has promised to get Diamond Hospital running up to par.

Fort Wellington Community Hospital in Fort Wellington and is an hour-and-a-half-drive to Georgetown.  It’s a small hospital with only 22 beds, although in October 2016 they received an ultrasound machine and have scheduled pending laboratory upgrades.  They are also trying to obtain a psychiatrist and are striving to improve the healthcare for those residents in their region.

Georgetown Public Hospital in in Georgetown, has 600 beds, and is a free, government-run hospital. No payments are collected from the patients. It’s the main hub where most patients in need of extensive medical care are transferred to throughout the region.  In 2016, they received much-needed critical care equipment from the Fyrish Support Group.  Many employees have stated they love(d) their jobs at GPHC; however, did complain of a lack of adequate tools and information.   One report stated there were only two nursing assistants available for 45 patients in the Georgetown Public Hospital’s Female Surgical Ward.

Leonora Cottage Hospital in Uitvlugt is a small hospital 48 minutes west of Georgetown.  In 2009, there were no midwives available and a young mother-to-be was turned away in the middle of contractions – she ended up having to give birth to a healthy baby at a private hospital in Georgetown.  There were over 17 maternal deaths in 2015 at L.C.H.  In 2013, it made the local news due to an ongoing drug shortage, non-functoning toilets for patients or staff, and the discovery of a stillborn fetus in the nurse’s fridge.  However, in 2016, the Public Health Minister pledged that the hospital was to receive a complete renovation of their maternity unit – to make it a safe and healthy place for women to give birth.

Lethem Hospital in Lethem, and is roughly a 10-hour drive to Georgetown.  In mid-2016, the government decided that Lethem Hospital was to become the region’s hospital, but in order to achieve this status there needed to be more specialists and the staff must learn to work together, learn team protocols, better record keeping, etc.  If patients need surgery, they are tranported to Georgetown or Brazil.  And many residents fear inadequate medical services as well as the language barrier of Brazil.  And, like much of the hospitals around the country, there are complaints of medication shortages at Letham.

Linden Hospital Complex in about an hour-and-a-half south of Georgetown.  In July 2016, it hosted a National Women’s Conference.  Some even claim it is the best hospital in Guyana; although, it may be facing a government audit.  L.H.C. also opened the Laparoscopic Surgery Center in 2014, working in collaboration with specialists from China.

Mahaicony Hospital in Mahaicony is about an hour from Georgetown.  In February, 2016, there were reports that the hospital did not have a functioning paediatric ward, despite a paediatrician working there.  Residents claimed they needed to travel to Georgetown for paediatric care and are requesting the governtment’s help. The facility received a $2,000,000 ultrasound machine in August of 2016 thanks to the efforts of Guyana Medical Relief.  The donation will save patients of the area the drive to Georgetown for ultrasound imaging studies.

Mahdia District Hospital is a six to nine hour drive on dirt roads from the capital.  The hospital has limited power every day linked to a small grid (6pm-6am), as well as the use of a generator  (10am-2pm) and solar power (only powers the radio and vacinne fridge). You could imagine the difficulties a lack of power presents to the hospital and patients.

Mibicuri Hospital in the Black Bush Polder area has less than two dozen nurses and doctors to serve approximately 4,000 area residents.  Efforts are ongoing to increase the staff size at several region hospitals.  Albeit small, M.H. is commended for the friendly attitudes of staff, their professionalism, and the cleanliness of the facilities. Praises aside, it also faces periods of darkness if there are power failures and the emergency generator does not work (apparently, this is more often than not).

New Amsterdam Regional Hospital in New Amsterdam and sees 20,000 patients per day.  It has increased the services it provides, but has not had a significant increase in staff members to provide those services.  The lack of adequate staff may cause treatment delays and/or the need for medical transport.

Port Mourant Hospital and Ophthalmology Center in Port Mourant (a 2-hour drive from Georgetown) boasts of 53 beds and offers primary healthcare, minor surgeries, and pediatric services.

Skeldon Hospital in Berbice is a three hour drive to Georgetown provides care to 200-250 people per day.  In 2015, the hospital received major renovations, including the addition of an operating theater, recovery room, and intensive care unit.  However, some staff members have complained of dirty well water, including reports of worms and moss passing through the faucet taps.   Many nurses also complained of bats infesting the ceilings of their dormitory.

St. Joseph Mary Hospital in Georgetown is a non-profit hospital.  It offers 67 beds, has 200+ staff, and is available to the public 24 hours a day, seven days a week.

Suddie Public Hospital is along the Essequibo coast and staffs 30 physicians.  In 2015, an overhaul was announced to repair shoddy electrical work, roof leaks, and water damage, as well as restore function to the operating theater and upgrade equipment.  The doctors have complained, publicly, about the conditions they continue to work with: clean drinking water is not provided, broken toilets, no air conditioning, the high risk of contracting mosquito-borne disease, and a lack of sleeping quarters and restrooms for staff, just to name a few.  S.P.H. has also suffered drug, supply, and staff shortages.  However, the Guyanese government promises to bring change to the lacking hospital.

West Demerara Regional Hospital in Vreed en Hoop is a 30-minute drive to Georgetown.  It’s also slated to undergo major upgrades to end drug and equipment shortages.

Woodlands Hospital is a private hospital in Georgetown, which offers a broad range of medical services to the people of Guyana, including Zika testing, specialty surgeries, and full diagnostic imaging studies.  Unfortunately, it has been the target of a robberies in July 2013 ($1,100,000 was taken) and again in October 2016 (undisclosed amount was taken).

If you have any additional information to any clinics or hospitals in Guyana, please feel free to let me know in the Comments section below.  Also, if you have Endometriosis and want me to share your story, I’d be happy to! Just let me know!   And I’d like to extend a very special thank you to “C.S.” – thank you for being brave enough to step out of the shadows to shed some light on your story.  And for giving others the courage to do the same. ❤

Let’s connect the women of Guyana – you are NOT alone in this!

Yours,

Lisa

Resources:

Best Country Reports – (Graphic; 2007) Population Density Map of Guyana

Caribbean Medical News – (Article; Oct. 2013) Diamond Hospital Guard “Unearths” Drugs Racket, Ejected from Compound

Central Intelligence Agency

Citizens Report – (Article; May 2016) Major Shortage of Drugs at Lethem Regional Hospital

Cleveland.com – (Article; May 2013) University Hospitals Program Making Strides Training OB-GYNs in Guyana

Country Meters

Davis Memorial Hospital & Clinic

Guyana Chronicle – (Article; Aug. 2010) Explaining Your Medicines

Guyana Chronicle – (Article; Jan. 2014) How the Flames of Burnished Trash Raise Hell for Humans

Guyana Chronicle – (Article; Aug. 2016) Mahaicony Hospital Ultrasound Services Upgraded

Guyana Chronicle – (Article; Feb. 2014) Mibicuri Hospital Staffers Lauded for Patient-Friendly Environment.

Guyana Chronicle – (Article; July 2014) Miss Guyana Universe 2013 Shares her Ideas on Suicide and its Prevention

Guyana Chronicle – (Article; Feb. 2015) Port Mourant – a Thriving Community Where Humble Residents Appreciate Gov’t Efforts

Guyana Chronicle – (Article; June 2015) Skeldon Hospital Staffers Raise Issues with Public Health Minister – as Construction Works Move Apace at Institution

Guyana Diaspora ProjectOverseas-Based Charity Donates Heart Marchines – to Mahaicony, Bartica Hospitals

Guyana Government Information Agency – (Article; June 2016) All Regional Hospitals’ Theaters to be Functional

Guyana Government Information Agency – (Article; May 2016) GPHC Gets Medical Equipment from Fyrish Support Group

Guyana Government Information Agency – (Article; Aug. 2016) Lethem Hospital to Become Regional Institution – Public Health Ministry Working on Sourcing Specialists

Guyana News Network – (Article; Oct. 2015) Three Hospitals to be Upgraded

Guyana Times – (Letter to Editor; Sept. 2016) Deplorable Conditions for Doctors at Suddie Hospital

Guyana Times – (Article; Oct. 2016) Fort Wellington Hospital Commissions Ultrasound Unit

Guyana Times – Article; Oct. 2016) Govt Flouts Regulations to Finance Linden Hospital

Guyana Times – (Article; July 2016) Leonora Cottage Hospital Facing Drug Shortage

Guyana Times – (Article; Oct. 2016) Lone Gunman Storms Woodlands Hospital

Guyana Times – (Article; Oct. 2016) Woodlands Hospital Launches Zika Testing in Guyana

Guyanese Online – (Blog) We Care 2014 Medical & Educational Mission: July 24-July 31, 2016

Hott Caribbean Radio – (Article; May 2013) (Gyuana) Leonora Regional Hospital…Non-Functioning Toilets at the Hospitals is an Embarassment – Minister

Indeed.com

iNewsGuyana – (Article; Feb. 2016) Mahaicony Cottage Hospital Paediatric Ward ‘Out of Service’

iNewsGuyana – (Article; June 2015) ‘Suddie Hospital theatre is a disgrace’; Major Overhaul Planned

Journal of Epidemiology and Global Health – (Study; March 2015) Anaesthesia, Surgery, Obstetrics, and Emergency Care in Guyana

Kaieteur News – (Article; Sept. 2015) Diamond Hospital is Turning Out to be a Disaster – Public Health Minister

Kaieteur News – (Article; Feb. 2013) Diamond Hospital Treated 80,012 Patients Last Year

Kaieteur News – (Article; April 2016) Endometriosis: A Common Disorder in Women

Kaieteur News – (Article; Sept. 2016) Fort Wellington Hospital Now Offers Ultrasound Services

Kaieteur News – (Article; Jan. 2009) Leonora Cottage Hospital Turns Pregnant Woman Away

Kaieteur News – (Article; Jan. 2016) Leonora Hospital’s Maternity Unit to Benefit from ‘Complete Makeover’

Kaieteur News – (Article; April 2012) Lethem Hospital Not Functioning to Residents’ Expectations

Kaieteur News – (Article; July 2014) Mibicuri Hospital Left in Darkness After Storm

Kaieteur News – (Article; May 2015) West Demerara Hospital to be Significantly Upgraded – Public Health Minister

Mercy InternationalMercy International

Ministry of the Presidency – (Article; May 2016) Massive Transformation at Bartica Regional Hospital – Referrals to GPHC Reduced by 50%

Ministry of the Presidency – (Article; Nov. 2015) US$14M to Upgrade Bartica, Suddie, West Demerara Hospitals – Contract of Specialty Hospital to be Reviewed

My Hospital Vision

NewsNow – (Article; April 2016) Skeldon, Mibicuri & Port Mourant Hospitals Working to Improve Service

Parliament of the Co-Operative Republic of GuyanaBudget 2012

Pitt Chronicle – (Article; Feb. 2016) In Guyana, Improving Health Care for Mothers and Babies

Powering HealthGuyana: Mahdia District Hospital

PressReader – (Article; Oct. 2016) Suddie is Far From the Best Hospital in Region Two

Safari The Globe

Simply Guyana

Simply Guyana – St. Joseph Mary Hospital

Stabroek News – (Article; Oct. 2007) Diamond gets $140M Hospital

Stabroek News – (Article; Oct. 2014) Linden Hospital Complex Laparoscopic Centre Commissioned

Stabroek News – (Article; Aug. 2015) Linden Hospital Complex Receives Defibrillator

Stabroek News – (Article; June 2015) Skeldon Hospital Undergoing Reconstruction

Stabroek News – (Article; March 2016) Staff Shortage Affecting New Amsterdam Hospital – Medical Superintendent

Stabroek News – (Article; July 2013) Taxi Driver Remanded Over Woodlands Hospital Robbery – Claims Car was Hijacked at Gunpoint

The Electives Network

University Hospitals MacDonald Women’s Hospital – (Article) Building Women’s Health Bridges in Guyana

University Hospitals MacDonald Women’s Hospital

Woodlands Hospital

~ 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

Pelvic Pain and Chiropractic Care Workshop

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UPDATE JULY 7, 2016: The workshop has been cancelled and will be rescheduled at a future date.  Apologies.

Element Wellness Center reached out to our little support group to see if we’d be interested in having Dr. Ryan Hummel host a workshop on how chiropractic care may help with pelvic pain.  One of his staff members used to suffer horrible pelvic pain due to her Endometriosis.  She sought treatment and feels so much better.  She is so passionate about how it changed her life that she started working there.

So, we’ve accepted their invitation.  They’re promising to discuss the science behind how chiropractic care may help alleviate pelvic pain.

If you’re in the Southern California area and would like to join the workshop, it’s going to be Saturday, July 9, 2016, in San Diego.

More information and free registration can be found here:

https://www.eventbrite.com/e/pelvic-pain-talk-tickets-26186381171

A little personal note: we are not endorsing Dr. Hummel’s practice or claims.  We are simply sharing a resource that may assist you.

~Lisa; Bloomin’ Uterus

Endometriosis, Pelvic Pain & Pelvic Floor Therapy Workshop

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Attention San Diego-based EndoSisters and sufferers of pelvic pain!  At the suggestion of one of our EndoSisters from our support group, we reached out to Comprehensive Therapy Services, Inc. for their help.  They’ve agreed to host a presentation on Endometriosis, pelvic pain, and pelvic floor therapy on Wednesday, April 20, 2016, at 7:00pm.  It’s free!  Interested? What the heck am I talking about? Read on…

Do you have pain in your pelvic region?  Does sex hurt?  Does it hurt to walk or sit?

The pelvic floor is made up of multiple layers of muscles attaching from the pubic bone to the sides of the pelvis and all the way to the coccyx.  Pelvic floor muscles may become impaired or irritated and inflamed for a variety of reasons causing muscle spasm or weakness.  These changes may cause pain in the pelvic region. Pain is not normal.

Many women suffering with Endometriosis complain of pelvic pain, although the pain may have many different causes. Your doctor may recommend pelvic floor therapy. But what is it?  Kira Shurtz of Comprehensive Therapy Services, Inc. will explain to us what physical therapy treatment options you may expect. She will provide education on how physical therapists address myofascial restrictions, trigger point within the muscles, and the benefits of visceral manipulation.  She will also discuss dietary changes, stress management, stretching, home exercise, lifestyle changes. These changes and therapies will help to relieve your pelvic pain and Endometriosis symptoms.  There will be a Q&A session at the end of the presentation, as well as a tour of the clinic.

If you wish to join us, please RSVP by sending an email to Lisa Drayton at lisa@bloominuterus.com or RSVPing on our Facebook page here.  The event will take place on Wednesday, April 20, 2016, at 7:00 p.m. at Comprehensive Therapy Services, Inc., located at 5677 Oberlin Drive, Suite 106; San Diego, CA  92121.

Parking and attendance are free. It is expected that it will run about an hour long.

Kira Shurtz joined CTS in 2013. She graduated from Brigham Young University in 2009 with a B.S. in Biology and then attended The University of Pittsburgh to obtain her Doctor of Physical Therapy Degree in 2013. Since joining CTS she has focused her practice on pelvic floor physical therapy, pre and post natal care, general orthopedics and dance rehabilitation. She has most recently continued her education with classes focusing on finding the pelvic pain driver, sexual medicine and dysfunction, and visceral manipulation. Her passion lays in helping her patients return to the activities they love most. She believes in giving her patients the tools they need to heal, grow, and increase their fitness levels. She is deeply enthusiastic about fitness and can be found teaching group fitness classes when she is not at CTS. Since moving to California she has also found a new love of hiking and rock climbing.