Share Your Story: Pam

quote: A hysterectomy doesn't resolve endometriosis.  I guess I was naive in 1999; were the doctors also?

Pam was diagnosed with Endometriosis when she was in her 40s.  Today Pam is 59 years old and shares her story with us.

Pam’s Journey:  Long story short, I have 4 grown children after years of infertility followed by 6 miscarriages. I was diagnosed with endometriosis and opted for partial hysterectomy in 1999 due to the heavy periods. I thought that was that.

Fast forward to September 2018, and last week I had my ovaries and tubes removed. I was shocked to hear I had endometriosis plastering my ovaries to my pelvic wall. Now as I am researching I am reading that it is possible that the undiagnosed leg pain I have been suffering with for over 8 years may also be related!

I am not in the medical field but am pretty savvy, so much it is rare that I go in and am not asked if I am a doctor or nurse. My kids and I have had lots of issues and I have been there with them for every step.

So how could I be so ignorant on this?!!

I have seen every kind of doctor you can imagine. I take an epilepsy drug for bilateral pain on the outsides of both lower legs. The last Doctor said just be happy you have a drug that works and stop looking.

I am praying as I heal from surgery, my pain in my legs will go away.

Words of Advice:  A hysterectomy doesn’t resolve endometriosis. I guess I was naive in 1999; were the doctors also?

The Last Word:: Don’t listen to any doctor that says stop looking! I am going back to every doctor if my pain resolves, after I give GOD all the glory, and telling them it was endometriosis, and don’t forget to ask about that!!!

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

I want to send a special Thank You out to Pam for being brave enough to share her personal story, struggle, and victories with us today.  We are all wishing you the best with your ongoing recovery! And, yes, if your pain doesn’t resolve – keep pushing for answers.  They’re out there somewhere!  And if it DOES resolve…absolutely give God all of the glory.  Please keep us posted.

I am so sorry it took me so long to share your post… and I hope you’re doing well!

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

Yours, Lisa.

Share Your Story: T.E.

 

T.E. was diagnosed with Endometriosis when she was 28 years old.  Now 31, she shares her story with us:

T.E.’s Journey: I was diagnosed with Endo around 28. I saw my gynecologist for painful sex and cyst rupture after sex and he recommended me seeing an infertility doctor for possible Endo. I saw the specialist and he said I did have chocolate cysts and suggested surgery to get a good look at what’s going on. I had the surgery; I did have lesions and my chocolate cysts were drained. I also had a low count of eggs at the time so I had to decide if I wanted to have kids now or never so I never started the pill after surgery.

Fast forward six months, I was back in pain and now till this day, I have had new symptoms arise. Hip pain and the bottom of my feet are new symptoms. I walk for a living so it’s been difficult. I still get leg pain, which is not even around the time of my period and mood swings. I also get lower back pain and severe cramps. My infertility doctor says he can’t do anything else for me so I have been trying other ways. I saw a holistic doctor and went that way and it did help, but the pain came back. I’m going to try acupuncture soon. Wish me luck!!

 

I want to send a special Thank You out to T.E. for being brave enough to share her personal story and struggle with us today.  Wishing you the BEST of luck with acupuncture!! You are a beautiful, brave, and strong woman.  Thank you!!!

 

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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.

Guyana : Endometriosis Care & Treatment

guyana

**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

Share Your Story : Amy

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Amy was 29 years old when she learned she had Endometriosis.  Now 38 and living in New Jersey, she has turned her personal battle with Endometriosis into a campaign to help others.

Amy’s Journey: My first memory of my cramps was when I was just 14 years old. I was on vacation with my family in Florida at my Grandmother’s house. We were there for a fun family vacation. However, my cramps were so bad that my mother insisted that I do a shot of brandy to warm my insides up. I was only 14! That is how my period started and it has continued to affect my life on a constant basis.

It is now 24 years later. I have debilitating cramps twice a month, once for my menstrual cycle and once during my ovulation. When I get my period I am in bed for the majority of the day. If it is a work day I tend to go in late because of how much pain I am in. I have to wait until the heating pad and the mix of drugs I take to control the pain kick in. I lay and cry every month wondering why me. Even writing about it, I can feel how blinding the pain feels. It is like a wave of pain coming over me. I can tell when it is about to start with little pangs of something inside saying “get ready, I’m coming”… And it does, usually with a vengeance and always worse than the previous month.

I never met anyone who had cramps like I did. I remember going to so many OBGYN’s over the years and never having a connection with any of them. I would ask for something to stop the pain. All I would get was to take 2 Advil. The best was when I asked one of the doctors if birth control would help and she looked at me and said “if you wanted this you could have asked for it right away”, as if I was making up the reason as to why I wanted pills in the first place. I was totally disgusted and felt I would never get any help. The fact is these doctors I went to had never thought about listening to me and looked at me as if I was faking as if I just wanted pills or something other than to be pain free.

Finally in October 2006 my mother said, “I know you like a woman OBGYN, but maybe you should really try mine. He is very nice and caring”. So, off I went to my mother’s OBGYN. Well, he was a miracle worker from my first appointment. We sat in his office and talked for a few minutes before anything. He tilted his head at me saying he understood. That was a first! He did a little exam and said I believe you have endometriosis. He said he would like to do a little procedure called a laparoscopy as soon as possible. Within 6 weeks I had my first lap procedure in December 2006. It went well except one of my arteries snapped mid procedure and he had to do a little extra cutting to sew the artery. I stayed in the hospital to be looked at over for the night. However, it was confirmed I was riddled with endometriosis lesions and scar tissue everywhere. My recovery took a bit longer due to the mishap. I was relieved when I did get my first period it was nowhere near the pain of my past one.

I soon went on Lupron and had every side effect that is listed with the use of this medication. Hot flashes were awful; it would almost feel as if I had bugs crawling on me when one was coming on. Depo seemed to work the best for my pain and keeping the endo symptoms at bay.

Unfortunately my miracle doctor retired but lucky enough for me his replacement was a young, gentle nurturing old soul type of woman. She listened. I remember my first meeting with her where she hopped up on the counter in the examination room and just let me vent and chatted with me for almost an hour.

I was married in September 2009. My husband Rey and I were talking about having kids in the future and we started talking about coming off of everything for my body to adjust. We didn’t need to chat about it too long.

In October 2009 I took myself to the emergency room because I could not even walk. I thought I was having appendicitis! I had a few tests run and sure enough it was a mass endometrioma that was the size of a grapefruit causing severe pain and the fear of losing the functionality of one of my ovaries. The ER OBGYN was so concerned he said “if you do not have this removed within 48 hours I will personally operate on you myself”. He was serious and yet had such a great bedside manner and I felt comfortable with him and understood the severity of the issue. This immediately put fear into me and made me realize how severe my disease actually was.

The next day I made arrangements with my OBGYN for surgery and I was on the operating table within 36 hours. Within that time my endometrioma grew to the size of a volleyball! Luckily it was not attached to anything and was just a mass sitting happy behind my uterus and ovaries. Once again, that same day surgery turned into 3 days in the hospital this time due to a low white blood cell count. After surgery I started on Nuvaring. Oh boy, was that an experience and one that I do not want to talk about. I was only on that until January of 2010 because we were going to start to have a family.

Also in January 2010 my insurance changed and my doctor who I loved was no longer covered under my plan. Feeling anxious about finding another OBGYN that I felt comfortable with, I reached out to the OBGYN I had met in the emergency room and wouldn’t you know it he was in my plan!

Under his guidance I started getting tested for any potential fertility issues. My first test was the horrid HSG where I found out that I had a blocked fallopian tube. This was hard to hear because I was 32 at the time and knew my window of becoming pregnant was closing every year. My husband and I chatted with my doctor and discussed what we were going to do. We were told to try naturally for the next few months. We tried and we got nowhere with conceiving. I also had ultrasounds every 3 months to be sure of no more growths.

We went back to my doctor in June 2011 to discuss one of my follow up ultrasounds. Unfortunately, he was away on vacation and we had to discuss this with his covering doctor, who, like many others before, had no idea what I was going through. It was the first time my husband understood how cruel some doctors could be. She said “Well I guess you should start fertility treatments”.

In July 2011, after almost 1 ½ years of us trying to conceive naturally and having to deal with my periods getting worse and worse every month, we started going to a fertility clinic. We sat with the doctor and he explained that with endometriosis it is almost a waste of time to try to do IUI. Of course our insurance plan covers IUI and not IVF.

Our first try with IUI was in September of 2011. My husband and I had fun with the whole thing. It was something we had to go through and we made the best of it. The chlomid was awful and I once again started getting those awful hot flashes. We kept focusing on the end result. A positive pregnancy test. However, we did not get a positive test but a big fat negative. It is amazing how all the hype you have instantly turns to the greatest fall ever with one phone call. We waited a cycle and tried it again in November of 2011 with the same phone call with the result of a negative. It was the holidays and my husband and I spoke about it and decided to not try again until after the holidays and then sit down and figure out the next step.

All of a sudden February 2012 was upon us. One morning, once again I woke up in excruciating pain and decided I could not take it anymore. I called my doctor and was so happy, even though he had moved practices, he was still in my plan. We made an appointment for that week. The reason why I love my doctor so much is how he works with his patients. I was called into his office and chatted with him about life and what had been going on. He said he was thinking about me because he just came back from a conference where the main topic was endometriosis and “Padma from Top Chef was there”. He was rambling on and on about the whole experience. I was thrilled that I had an appointment with him shortly after such a conference. He recommended another lap procedure to be done the following week. So here I was scheduling another surgery for this incurable disease. The next week we chatted before going into surgery about trying to clear my blocked tube and clean me up… Good as new!

The surgery went well. He was amazed at how bad my insides were. Everything was glued together from scar tissue and endometrioma lesions. He cleaned up all that he could and tried to unblock my fallopian tube. He also noticed that my other tube was also now blocked.

I went home to recover and waiting to go back to see him the following week for my follow-up appointment. It was then I saw the pictures, my jaw dropped at how inflamed and horrible my insides were. I am so thankful for the doctor to get me cleaned up and alleviate my pain.

Unfortunately the elephant in the room was that now I don’t have the function of either fallopian tube. The only option for us at this point was IVF. With our doctors recommendations we were off to search for the best doctor with a comfortable price since this is now all going to be out of pocket.

The fact that I am a woman and have the right to being a mother, my body created to do so and I couldn’t without the help of science didn’t matter to me. It is the lack of insurance, the lack of help for insurance is what bothers me. Why do I pay for health insurance for them to deny me, a woman, to have a baby because I don’t have working fallopian tubes? This isn’t a cosmetic procedure, but a disease.

In March 2012 my husband and I went to a few doctors and found the one we liked with a very personable staff. I feel that is almost more important that the doctor in a way. The amount of time you will spend in the doctor’s office you will want to be surrounded by staff that help guide you and can answer every question. No question off limits!

We decided to go for it. We were going to start all the fertility drugs in April, the following month. IVF is a science game. There are no ways to make sure it works. It still is a law of averages that you must be willing to accept. The 3 weeks leading up to the pregnancy tests were busy – doctor’s office every other day, shots everyday then multiple shots per day, procedures and pills. We did everything we had to. However, that call, that most anticipated call, was the biggest blow to us ever. I thought I would keep it together. No way! I lost it. It was the first time I have ever felt that my broken body is what is causing all of this. All the while, my husband, the kind and sweet and loving man he is, sits there, looks at me and says “You are not broken, you have a disease that is why this is happening, it isn’t you as a person”. Just a week out of that phone call, we were back in my favorite OBGYN’s office talking about what he thinks we can do. His positivity exudes from him saying it will happen. As we leave his office, we know we are ready to try it again.

And we did, in July 2012. This time we went back to our old ways of having fun with it all. We were hiding it from everyone not wanting the pressures from others. So we would run off into the bedroom for shots while company was in the other room. The best one was in the parking lot of a Furthur concert in Brooklyn, my hubby shooting me in the leg while laughing at what we are actually doing. We felt that there were probably more drugs going on in the parking lot then in our car at that moment.

The positive result of this cycle was we had 5 embryos. We implanted 2 and froze 3. That is the only positive that came from it. Well, that and the liquid lunch where we escaped our reality for a bit. I’m not really sure where we will go from here. We do have 3 frozen embryos, but not sure if I can mentally do it again.

Unfortunately, the last appointment I had with my favorite OBGYN, felt like many others I had previously, with no help in sight. That was November of 2013.

In February of 2014, I was lucky to find another OBGYN. He was very sweet and reminded me of my first experience with the doctor who got me. I was happy to have someone in my corner again.

In 2014, I went to a specialist in robotics surgery, my OBGYN referred him, not because he was an endo specialist but he was good at the surgery. I was so displeased with this Dr’s attitude and lack of empathy. I felt like he was doing me a favor for seeing me. I was literally crying in his office, he was one of those cruel people who don’t know endo and thought a hysterectomy was my only choice for a “cure”. I was in tears when I called my husband about it. By the time I reached my husband’s office, he was on the phone with Sabrina from Dr K’s office. The doctor is an endo specialist in NYC. She was so helpful of what we needed to do and how she would be in our corner as far as fighting our insurance company for coverage. I was in a much better mind frame after lunch.

That very evening, I had the honor of going to The Blossom Ball to volunteer, this event was hosted by Padma Lakshimi and her Dr, Dr Seckin. It was amazing, so many people supporting the endometriosis cause and I met a lot of fancy shcmancy people. SO with Endo girls all around me I felt empowered to do what I needed to do.

We waited until April of 2014 to make an appointment with Dr K, he does excision surgery and the initial visit, since not covered by insurance is a 100% out of pocket cost. We felt very comfortable with him and he really understood the disease and knew what needed to be done. His office administrator also knew her role in getting the surgery approved with insurance.

So here I was June 2014, getting yet another surgery, this time with a true specialist of the disease to excise ALL OF IT. I woke up from surgery and the results were very good, they removed all of it. I was diagnosed as a stage III of IV stages. Now the trick was to not get it back. I quit caffeine (which is a trigger) immediately and have not turned back to it to this day.

On my most recent follow-up with Dr K, in January 2015, I was diagnosed with adenomyosis, this is where the inner lining of your uterus breaks through the muscle wall of the uterus. Nothing you can do to fix it other than removing the entire uterus. Such is life I guess.

As of today I feel good. I am currently on birth control to control my hormones and to stop my periods from being so awful. It has helped some. I am sure I have a long road with my endometriosis, but I embrace it as there is nothing else I can do … other than help others. That is what I intend to do!

I must say that if I did not have the love and support by first of all my husband, who has been with me since before the very first surgery, I would be lost. He continually supports me and understands how bad my body feels during my cycle. My family has been so supportive and my amazing network of friends. I am happy to say I am not alone in my disease but everyone in my life is also affected by it. I thank all of them for being there as my support team and understanding what happens to me.

Words of Advice for Us:  Be your own advocate, always! Never give up on yourself.

Last Words: Thank you for being a voice!

If you wish to contact Amy, you can do so the following ways:

Join her Facebook Group : Our Journey with an Incurable Disease

Follow her blog : Our Journey with an Incurable Disease

Email : akuiters@gmail.com

I want to send a special Thank You out to Amy for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Thank you for all that you are doing for the Endo Community.  And again, thank you for being brave enough to share! Yours, Lisa.

downloadAnd 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.

Endometriosis and Infertility

infertility magnet. tnjpgMany women with Endometriosis also suffer from infertility.  Why? Well, that very question spawned today’s research…

It is believed that Endometriosis is present in 24-78% of infertile women (depending on who you ask).  That’s a huge figure! Infertility associated with Endometriosis may occur at any state of the disease (I to IV; mild to severe).  It’s believed that the Stage of Endo may effect the rate of infertility:  women with “mild” Endo have been known to conceive 2-4.5% per month; women with moderate to severe Endo drop to less than 2%.  Normal, fertile couples conceive at a rate of 15-20% per month.  It’s a big difference all across the board.

The medical and scientific community do not have answers as to why Endo may make women infertile; only theories:

  • Less intercourse due to painful sex;
  • Anatomical distortion caused by implants and/or adhesions;
  • Endometriosis may create a toxic environment for fertilization;
  • Inflammation may play a role;
  • An altered immune system may influence fertility;
  • Hormonal changes or imbalance may cause issues;
  • Too many surgeries have damaged the girly bits;
  • Too much time has passed before diagnosis, allowing the disease to mature and the woman to age, providing an even greater loss of fertility.

There has been no link to the cause and effect of Endometriosis and infertility.  Not yet, at least.

Anatomical Distortion

Chocolate cysts, or endometriomas, are blood-filled cysts that are usually found on the ovaries.  They can also be found outside of the pelvic area (the belly button, brain, liver, etc.); however, these do not seem to effect infertility.  It’s been stated that 17-44% of women with Endometriosis have endometriomas.  These cysts can impede ovulation or even damage the ovaries themselves.  Endometriomas can be removed during an excision surgery; however, as you’ll see, multiple surgeries may cause further damage to the ovary tissue.

On the flip side, a study published in 2015 found that there was no substantial difference between 183 different oocytes (eggs) that came from ovaries that have had endometriomas and those that have not; that the oocytes were not inferior in quality to the healthy oocyte.  So knowing the quality of the eggs was not affected by the chocolate cysts begs to question: is it purely because of any damage to the ovarian tissue or Fallopian tubes that prevents the egg from getting to its Final Destination?

Finally, another 2015 study found that a second surgery to remove an ovarian endometrioma is more harmful to the ovarian reserve and may cause further damage to the ovarian tissue; ultimately affecting fertility.  What is the ovarian reserve?  I had to look it up (thanks wikipedia): it’s “a term that is used to determine the capacity of the ovary to provide egg cells that are capable of fertilization resulting in a healthy and successful pregnancy.”  These findings suggest that repetitive surgeries to excise endometriomas should be done with caution, if at all, for women who are seeking to conceive (either naturally or with medical intervention).

Adhesions may also block an egg from leaving the ovary or block the Fallopian tubes from proper delivery of the egg to the uterus.

Toxic Environment

A study published in 2009 suggests that a woman who has Endometriosis may create a toxic and infertile environment for sperm.  Byproducts of our inflamed tissues and over-reactive immune system may produce toxic fluids which reach the uterus through the Fallopian tubes.  It concludes, “there was evidence of significantly higher sperm DNA damage in samples incubated with [peritoneal fluid] from patients with endometriosis compared with samples incubated with [peritoneal fluid] from healthy women and controls at the three incubation periods studied…We are proposing that endometriosis-induced sperm DNA damage may be one of the underlying causes of reduced natural fertility in these cases.” More studies, of course, are needed. It’s just frustrating for those EndoSisters who are striving to become pregnant.

Surgery & Fertility Therapy

Assisted Reproductive Therapy (ART) is a common treatment for infertility.  It involves removing the eggs, fertilizing them with sperm in the laboratory, and returning the fertilized egg to the woman’s womb to be carried to term.  According to the CDC, 1.5% of the infants born every year are conceived using the ART technique.

ARTA 2015 study analyzed data which was collected between 1989 and 2014, comparing live births of women with and without Endometriosis, who had undergone ART.  The figures were comparable for women with subtle Endometriosis (Stage I and II) and women who did not have Endo, however, unfortunately, it indicated that women with Stage III or Stage IV Endometriosis have a lesser chance of delivering a successful live birth.  But do not lose hope!

In the 2012 publication Endometriosis: A Guide for Patients, 29% of women who had their Endometriosis surgically excised were able to conceive within nine months of surgery; as opposed to 17% of women with Endo who did not have it excised at the time of surgery.  That’s over a 10% difference…

A 2015 French study found that women with Endometriosis who underwent an excision surgery then started fertility treatments or ART had a 78.8% pregnancy rate in as little as 18 months after their surgery!  This study followed 412 women who had surgery between 2004 and 2012.  They believe the surgical removal of implants and adhesions played a role in improving fertility.

Another 2015 study showed that out of 142 women trying to get pregnant, 71 conceived naturally after their Endo excision surgeries (5 of these were unplanned) and 38 conceived using ART.  Unfortunately, 38 were unable to conceive either way.  This study concluded that “[w]omen who had surgery to remove stage III-IV endometriosis and subsequently tried to conceive had a 73% chance of pregnancy, the majority within 12 months of index surgery.”

Another 2015 study broke EndoSufferers into groups: some underwent surgery, some had GnRH treatment, and others had in vitro fertilization.  It found that each group had similar numbers when it came to conceiving.  “Pregnancy and delivery rates at different stages of endometriosis were not affected by the different approaches used for infertility treatment…”

Freezing Your BabyMakers

Some women may consider freezing their eggs to preserve their lineage.  It’s not unheard of.  Decreased fertility or ovarian function may very well lead you to consider this option.  A study in 2015 stated “[b]ased on the currently available notions on the intricate relationships between endometriosis, infertility and damage to the ovarian reserve, we speculate that fertility preservation may be of interest for women with endometriosis, in particular for those with bilateral unoperated endometriomas and for those who previously had excision of unilateral endometriomas and require surgery for a contralateral recurrence.”  This study concluded by stating further analysis and data is needed before being introduced into routine clinical practices.

What have I learned today?

1. Now I know why my surgeon told me that unless I truly wanted to have a child at this point in my life, I needed to use condoms while on Lupron Depot and oral contraceptives afterward.  I had no idea that your chances could improve this drastically after surgery.

2. I’d still like to learn of the link between Endo and infertility…so many theories!

3. But if an EndoSister asks me if they can get pregnant after their laparoscopy, I’ll be able to answer that there is a chance they can!  … but there’s also a chance they can’t…

For all of you EndoSisters out there trying to conceive, do not lose hope.

Resources:

American Society for Reproductive Medicine : 2012 (publication) Endometriosis : A Guide for Patients

Unexplained Infertility : 2015 (incomplete Article) Subtle Endometriosis and Unexplained Infertility

Centers for Disease Control and Prevention

Future Medicine : 2015 (Abstract) Exploring the Relationship Between Endometriomas and Infertility

Georgia Reproductive Specialists

Hindawi Publishing Corporation : 2015 (Article) The Surgical Treatment of Severe Endometriosis Positively Affects the Chance of Natural or Assisted Pregnancy Postoperatively

Karger : 2015 (Abstract) Pregnancy Rate in Endometriosis Patients According to the Severity of the Disease After Using a Combined Approach of Laparoscopy, GnRH Antagonist Treatment and in vitro Fertilization

Obstetrics & Gynecology : 2015 (Abstract) Influence of Endometriosis on Assisted Reproductive Technology Outcomes: a Systematic Review of Meta-analysis

Oxford Journals : 2015 (Abstract) Fertility Preservation in Women with Endometriosis: For All, for some, for none?

ResearchGate : Article (2009) The Impact of Peritoneal Fluid from Healthy Women and from Women with Endometriosis on Sperm DNA and its Relationship to the Sperm Deformity Index

Science Direct : 2015 (Abstract) External Validation of the Endometriosis Fertility Index in a French Population

Science Direct : 2015 (Abstract) Second Surgery for Recurrent Endometriomas is More Harmful to Healthy Ovarian Tissue and Ovarian Reserve than First Surgery

Springer : 2015 (Abstract) Endometrioma and Infertility : Principles and Techniques of Management

Springer : 2015 (Abstract) Endometriosis and Infertility

Springer: 2015 (Abstract) Laparoscopic Excision of Ovarian Endometrioma Does Not Exert a Qualitative Effect on Ovarian Function: Insights from in vitro Fertilization and Single Embryo Transfer Cycles

Springer : 2015 (Abstract) Subtle Endometriosis and Unexplained Infertility

~ 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

Signs & Symptoms of Endometriosis

signs

Many girls and women have Endometriosis and don’t even know it.  I sure didn’t. I’d never even heard of it. Endo-what?  More on what Endometriosis is and what it does can be found here.

So what are the red flags of Endometriosis?  If I only knew about this list prior to my diagnosis, I would have gone to my doctor years ago! I met every single one of these symptoms!! Every. Single. One.

You may have Endometriosis if you have any of the following issues:

  • Painful periods (some classify their pain as severe or crippling)
  • Chronic pelvic pain (even when not during period)
  • Pain during ovulation
  • Heavy periods
  • Lengthy periods
  • Irregular bleeding or spotting
  • Bloating, especially around your period
  • Experience pain during or after sex
  • Painful bowel movements
  • Pain when urinating
  • A personal history of urinary tract infections
  • Diarrhea or constipation, especially around your period
  • Infertility
  • Fatigue
  • Nausea
  • Lower back pain
  • Sciatica pain

Think you, or someone you know, may have Endometriosis? Now what?

To date, there isn’t a non-invasive way to officially diagnosis Endometriosis; the doctors must surgically open you up and see it…BUT there are questions, pelvic exams, imaging studies, etc. that may help your doctor determine if you may have it.  More on that can be found here.

And most importantly : you are NOT alone.  This condition effects 176 million women worldwide.  And we are all in this together. Embrace your community of EndoSisters. We are all strong. And still beautiful.

Resources:

Center for Endometriosis Care

Centre for Advanced Reproductive Endosurgery

Dr. Seckin

Endometriosis Association

Endometriosis Foundation of America

Endometriosis.org

Endometriosis Resolved

Mayo Clinic

~ 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