March is Endometriosis Awareness Month

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And in honor of that, I’ve decided to add a Page to the blog…not just a blog entry.  One source of all of the interesting info I’ve found so far about Endometriosis that may be helpful to people looking for more information.

Would you like to read it and let me know if I should add anything?  Or if you have any suggestions?

Check it out here:  https://bloominuterus.com/what-is-endo/  This link will also be permanently affixed to the top of the Bloomin’ Uterus blog in the upper-right corner.

And, if you’d like, please feel free to share it with everyone.  It’s March (well, tomorrow) and it’s the least we can do. 🙂

Share Your Story : Charlie

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Charlie lives in the UK, and was diagnosed with Endometriosis when she was 16.  Now 19, and two surgeries later, her pain is already returning.  This is her story.

Charlie’s Journey: 

So, I guess we should start at the beginning.

This post will feature words that usually have a stigma behind them or make some people feel uncomfortable such as ‘periods’ so look out.

So when I was around twelve and mother nature came and gave me the ‘gift’ of periods like she does to many girls around that age I accepted it quickly and got on with being ‘grown up’. But unfortunately, what I didn’t know then was the hell I was going to have to go through.

Most days I would be lying on the bathroom floor, curled over in pain to the point where I was being physically sick, where painkillers wouldn’t bring me any form of comfort whatsoever. I was led to believe this was normal as I knew no different and everyone told me that this is what was supposed to happen. But they didn’t understand the level of pain I was in. I clearly remember one day when I was around thirteen my family and I were off to a park for a picnic and a walk and I remember begging them to get me a wheelchair to go around in because I was in so much pain I physically couldn’t walk. But this still didn’t ring alarm bells so I carried on my life as normal, dreading each time my period would come round.

I began getting sharp pains in my sides most days and I’d get so bad I’d go to the hospital only for them to pass it off as an infection, to take antibiotics or just to wait for it to go away. Some days I’d go and they would simply tell me ‘We don’t know what’s wrong with you’. Eventually one day I’d had enough so I went to the doctors with my mum where she demanded I be seen by a specialist. To my surprise they actually agreed and I was booked in to see someone at the hospital.

Walking up to the hospital I didn’t get my hopes up and expected I would get sent away without any answers yet again.  But after a consultation with a specialist and being examined they explained that they expected that I had endometriosis and would book me in for a laparoscopy to confirm this. I’d never had any surgery before and all the information for this was overwhelming. I didn’t say anything the whole way home and ended up crying into a chocolate muffin when I got into my bedroom (not the worst way to cry I know) I had a hard time accepting I have this condition and to be honest I still do struggle with it. I have days where I’m fine and get on with it and others where I get angry about it and hate my own body for betraying me.

But I digress…I went for my first laparoscopy a few years ago full of nerves not knowing what to expect, with my mum telling me to ‘be good’ when I was wheeled down to theater which we still laugh about now. The surgery went well and I was diagnosed with Endometriosis with my ovaries stuck to the lining of my sides which had to be cut away.

The recovery went well and 2 weeks later I was back and in good health. This lasted for around 6 months before symptoms slowly started emerging again. I went back to the hospital around 5 times before a second laparoscopy was booked in and I was absolutely dreading it because I knew what to expect and it wasn’t very nice.

So the second laparoscopy found the same as the first my ovaries stuck to my sides and this time, despite being given anti-sickness medicine for the anesthetic, I was severely sick and had to stay in overnight again. During this surgery a coil was fitted to stop me having periods and to improve my symptoms. This coil took around six months to settle then eventually started working well. Up until now where my symptoms are beginning to come back again…

Words of Advice for Us: Surround yourself with good people who will be there for you and bring out the best in you. Alongside focusing on your health and well being and putting those as a priority within your life.

If you wish to contact Charlie, you can follow her blog: https://myarchenemy.wordpress.com/

I want to send a special Thank You out to Charlie for being brave enough to share her personal story, struggle, and victories with us today.  We are so sorry to hear your symptoms are already returning and hope for the best…You are a beautiful, brave, and strong woman.  You can do this.

 

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

Yours, Lisa.

Feel Good Friday!

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Today’s quote is an anonymous one, which was shared with me yesterday by Sister Develyn Angels…and I loved it.

“Butterflies are nature’s tragic heroes. They live most of their lives being completely ordinary. And then, one day, the unexpected happens. They burst from their cocoons in a blaze of colors and become utterly extraordinary. It is the shortest phase of their lives, but it holds the greatest importance. It shows us how empowering change can be.” ~ Anonymous

Afraid of change?  Suddenly struck by it? Remember this quote…and fly!

Happy Friday!  And have a great weekend.

Yours, Lisa

Two New Books Added to Library

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So I’ve finished reading two of my newest books about Endometriosis and they’re available for check-out from our Library.

Doc Will See You Now

The Doctor Will See You Now by Dr. Tamer Seckin (the co-founder of The Endometriosis Foundation of America), published in 2016.  If you would prefer to purchase your own copy of this book, a portion of the proceeds goes to The EFA and it can be found on Amazon here.

Summary : Endometriosis materializes when the endometrium – the tissue that lines the inside of the uterus – sheds, but does not exit a woman’s body during her period. Instead, it grows outside of the uterus, spreading to organs and nerves in and around the pelvic region. The resulting pain is so physically and emotionally insufferable that it can mercilessly dominate a woman’s life. The average woman with endometriosis is twenty-seven years old before she is diagnosed. It is one of the top three causes of female infertility. The pain it emits can affect a woman’s career, social life, relationships, sexual activity, sleep, and diet. It is incurable, but highly treatable. Unfortunately, though, it is rarely treated in a timely manner, if at all, because of misdiagnoses and/or a lack of education among those in the medical community.

This book gives hope to everyone connected to endometriosis. That includes every woman and young girl who has it, and the women and men in their lives – the mothers, fathers, husbands, children, and friends – who know something is wrong, but do not know what it is or what to do about it. This book is written at a level that everyone with ties to this disease can relate to and understand, but it is also for doctors with good intentions who lack the knowledge of how to diagnose or treat it.

The Doctor Will See You Now is for women determined to let the world know their stories so that every woman with this disease – from the thirteen-year-old girl who is being told that her pain is “part of becoming a woman” to the woman who has been misdiagnosed for decades – knows she is not alone.

Yes, her pain is real.

No, she is not crazy.

Yes, there is hope.

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Endometriosis A Comprehensive Update (Springers Briefs in Reproductive Biology) by Sajal Gupta, Avi Harlev, and Ashok Agarwal, published in 2015.  It’s a review of science, literature, and medical breakthroughs about Endometriosis, complete with several theories on the development of Endometriosis and how best to treat it.  Although very medical & sciencey, I enjoyed this read very much.

Summary:  This Springer Brief provides an update on endometriosis research — from the underlying mechanisms, predisposing factors, role of environmental pollutants, treatment options, impact on quality of life, and biomarkers, to emerging treatment modalities in order to help clinicians to pursue a patient-centered approach in managing the disease. This book provides clinicians with a better insight into early diagnosis and management of endometriosis. It explores the possible identification of proteins in different types of endometriosis diseases and at different stages of the progression.  This may aid in the discovery of potential biomarkers for non-invasive diagnosis of these diseases. The ability to identify a protein, common between women of different races, ages and in different regions of the world will hopefully contribute to improving women’s health worldwide.

If you would like to borrow either of these books from our library, please click on the Library link in the upper-right corner of this page.  Or, you can click here.

 

 

T-shirt sales were a success!

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Thanks to everyone who purchased a Bloomin’ Uterus t-shirt!  As you know, all profits were donated to The Endometriosis Foundation of America.  This year’s t-shirt campaign raised $43.35 for the EFA.  Wear your shirts with pride!

It doesn’t sound like a lot of money, I know, but every little bit helps this great organization.

I don’t know who purchased a shirt (Teespring doesn’t tell me), but I want to thank each and every one of you.  Missed your opportunity to get a shirt?  They’ll go back on sale in February 2017…or if there’s enough outcry, we can open up another campaign (but we must sell a minimum of 5 shirts to print).

Thanks, guys!  This is incredible.

Yours,

Lisa

Book Added to Library

BU Library

Living Well with Endometriosis by Kerry-Ann Morris was returned to our library today!

Published in 2006 ~Summary : As someone who suffers from endometriosis, and who has connections to a wide network of healthcare professionals, Morris is the perfect person to guide sufferers through diagnosis, treatment and living well with the condition. Like the previous titles in our successful Living Well series, this book will offer a holistic approach to living with the disease. The author will offer strategies for coping with the psychological aspects of endometriosis, including how best to tell others about the condition; treatment options including alternative and complementary treatment plans; dealing with infertility; and weighing the hysterectomy option. The author will draw on her relationship with fellow sufferers as well as medical professionals to help readers, making this the most comprehensive guide to endometriosis available.

If you would like to check it out, please visit our library (or even look at our other books available) at https://bloominuterus.com/library/

Peggy, Roy, & The Endo Inn

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Peggy & Roy cutting their birthday cake –  July 2015

You may have heard about Peggy Santa Maria on CBS-TV, LA or read about her in the Contra Costa Times or various online blogs.  I bumped into the CBS-TV LA link, which was aired on their 5pm news on December 25, 2015, and just had to know more about her.  The e-mail address on their site didn’t work, so I reached out to my friend, Margaret, at The Vital Health Institute, who got us in touch.

If you don’t know about Peggy and her husband Roy, they host The Endo Inn.  The what?  As Roy says, “Stay at the Endo Inn while you have your Endo taken out.”  They have converted their guest bedroom into The Endo Inn, a room where a woman and her guest can stay while she recovers from surgery for her Endometriosis, free of charge and for several weeks, if needed.  This includes access to all of the house for cooking, doing laundry, entailing everything that covers “living,” and The Endo Inn becomes “their home.”  Roy and Peggy have been doing this since January 18, 2000.

More about The Endo Inn shortly…but right now I want to focus on the beautiful people behind it:  Peggy and Roy.  I had the pleasure of speaking with Peggy several days ago, spending over an hour on the phone with this purely delightful woman.

Peggy has been plagued with Endometriosis since her early teen-aged years.  To be exact, she remembers that terrible summer day in South Dakota : July 27, 1968, watching Lawrence Welk on his weekly Saturday night TV show.  She felt something happening…she had started her period and the pain was a huge “why???  Only 14 years old.  Why this terrible pain?”  She grew up in a small town in South Dakota, which boasted of a whopping 300 people.  In her 20s, Peggy wanted to get a taste of the world and make something of herself, especially in the field of aeronautics, so she packed up and moved to the San Francisco Bay area of California on February 23, 1975, with nothing but a dream in her heart, a few belongings, and her unexplained pain. She had been told it was normal, what every woman goes through…

While staying with friends in the San Francisco Bay Area, Peggy landed her first job on April 18, 1975, as a messenger at a title company.  It wasn’t aeronautics, but it was a job which boasted of a pretty hefty paycheck for a small-town South Dakota girl.  She didn’t even have a California driver’s license yet, and the company hired her on the spot.  While touring the area and visiting the company’s Oakland office, Peggy was introduced to a co-worker, a man in a pea-green suit, long hair down to his waist in a ponytail, working at his desk there…his name was Roy Santa Maria.  And they’ve been inseparable friends ever since.  Their birthdays are even only three days apart…Roy’s is July 4th and Peggy’s is July 7th.

Peggy and Roy each married someone else.  They always remained friends, yes, but they did not know they were destined to be together otherwise.  Peggy was married in 1986 to Mike, her first boyfriend, a man who didn’t seem to understand her pain.  However, Roy was always the one who was there for her before, during, and after her surgeries, even during their marriages.

In 1977, Peggy’s pain was unbearable.  She went to a doctor who told her she needed a hysterectomy, at 23.  Did Peggy want children?  Nope.  Since she was in 8th Grade, in 1968, she decided she wasn’t going to have children…but she was going to have dogs.  So, for her, the decision wasn’t the heartwrenching one that it is for many women. She trusted her doctor when he told her the “pain will be gone forever.”  Her hysterectomy was going to solve all of her problems…When she awoke from surgery, the first thing the nurses told her was that Elvis Presley had died.  And that she had Endo- endo- endometree- – they couldn’t even pronounce Endometriosis, let alone tell her about it. But, she believed her doctor and that she had made the right decision for her body.

However…her pain returned full-force in 1982, which began a whirlwind nightmarish decade of pain, countless doctor’s visits, and multiple surgeries.  On one such visit in 1986, she saw a newly-referred physician for her pain.  His office was gloomy, dimly-lit, and absent of any staff, nurses, or even a receptionist.  Thinking it was a bit odd, but wanting to see this doctor, she entered the exam room when beckoned.  Upon entering, she was assaulted and raped.  Terrified for her life, she couldn’t fight back; only endure his violation.  Once he had finished, the doctor simply dismissed her, told her she could leave.  Stunned, terrified, and diminished, she returned home, showered, and went to work.  She felt dirty, ashamed…alone…and didn’t know what else to do. Her co-workers sensed something was off, but she didn’t say anything.  She told no one; not the authorities, her husband, her doctors, or even Roy.  How could she?

Peggy became the President of the San Francisco chapter of the support groups run by the Endometriosis Association.  Roy always attended, too.  For a while, the support group met at a hospital.  Peggy came to the realization that hospitals are where you go when you feel sick or are in pain – so, rather then meet there, Peggy opened her house for the once-a month-meetings, or they met at local parks and libraries – anywhere that was alive and well.  It was at one of these meetings that Peggy shared her rape and was enveloped in love from those present.  “It was so healing,” she told me.  To this day, Roy and she avoid driving on the road where the building still stands.

Peggy had also heard about the Endometriosis Association’s crisis hotline, where women with Endometriosis could call and talk to someone who knew exactly what they were going through, because they did, too.  She had taken all of the classes and passed here tests, but was waiting to be told she was Certified and could start taking calls.  One night, a distraught woman called her, and Peggy was worried for the life and well-being of this stranger.  Two and a half hours later, in a much better state of mind, Peggy still didn’t want to let her go, she felt bonded…and finally the woman on the other end of the phone said, “Congratulations, you’ve passed!”  She was the head of the crisis caller hotline giving Peggy her final exam.  Peggy still handles crisis calls to this day and is available 24/7.

In 1991, Peggy and Roy both still worked for the same title company where they originally met.  Peggy had made her way up from Messenger to the Senior Escrow Officer.  Roy was the Chief Title Officer.  She’s never forgotten her dreams of working in aeronautics, but Peggy found a very happy life with her job at the title company where she and Roy lunched together every day.  However, that all changed that year.

Peggy could no longer push through her pain, she could no longer perform her duties, so she left her job and she filed for State disability.  When that ran out, she pushed for Social Security Disability.  It became a two-year battle.

One day, after appealing the disability office’s denial of her claim, Peggy received a decision letter from Social Security.  Denied for a second time.  She threw away the letter in tears.  It was useless.  Impossible.  But who was there to scoop it out of the trash?  Roy.  And he gently prodded her to move forward with another appeal…and another.

While at her 4th disability approval hearing, Peggy was in the courtroom before the Judge and had a bout of diarrhea (one of the many complications of Endometriosis).  She fled the room, and the SSI doctor told the Judge, “There’s your proof in action!”  She was embarrassed and mortified, certain she would be denied once more.  But three months later, she received her approval letter and a retroactive benefits check!  And even more importantly?  Peggy has laid the foundation for many women to follow in her footsteps.  “It will be difficult, but it’s not impossible,” she offer words of encouragement for other Endometriosis sufferers trying for disability.

In 1992, Peggy had a scheduled procedure with Dr. David Redwine.  She and her mother drove up, and guess who went with them?  Her husband?  No.  Roy took a one-week vacation and drove them up.  Such a great friend, a great man.

Enter the Age of the Internet.  1994 brought a whole new world to the fingertips of people everywhere.  This new computer age altered the dynamics of their monthly support groups.  People could find information and interact with others online.  They didn’t feel a need to meet anymore and eventually people stopped showing up to the meetings.  But, Peggy doesn’t give up; she’ll always be there for anyone who wants to meet face to face.  You simply cannot replace the sense of love, anguish, sadness, or joy that you get when interacting with another human being, the sense of peace and warmth delivered in a genuine hug.  So, their support group does meet once in the Spring, Summer, and Fall.   Roy is also there to help any men in the group understand the disease and what they can do to help their loved ones.

No longer happy in her marriage, Peggy divorced Mike in 1998.  And she and Roy were married that same year.  As it should be.

In ’99, she met Dr. Andrew Cook of the Vital Health Institute for pain management.  They’ve remained close friends ever since and even refer patients to each other.  Peggy trusts Dr. Cook and knows that any doctor he refers her to is going to be a great doctor, who will not harm her, and will know precisely what needs to be done.  She has no doubt.

In December that same year, Peggy was walking by the computer room in the house and heard him say, “Stay at the Endo Inn while you have your Endo taken out.”  “What’d you say,” she asked?  And that started it all.  Roy suggested they open their house up to women who are recovering from excision surgeries in their area so they can recover in a stress-free environment.  They presented the idea to several excision specialists in their area (Dr. Andrew Cook of the Vital Health Institute; Dr. Camran Nezhat of the Center for Specially Minimally Invasive Surgery; and Dr. Deborah Metzger), all of whom thought it was a wonderful idea and they would begin to get the word out.  On January 18, 2000, they had their first guest.  Peggy and Roy would have been ecstatic if they ever only had 10 guests, that it would have been worth it just to help 10 women.  But, since they opened their doors, they’ve had 119 guests, and the next guest who stays will be their 120th guest!  The Endo Inn now has 5 1/2 guest books filled with words of love and encouragement from prior guests!

Remember Peggy’s childhood dream to have dogs and not babies?  Molly & Sam were the Endo Inn’s two Dalmatians who loved everyone who came to stay with them.  They were a great healing aid and the Endo Inn’s room is decorated with Dalmations, and Peggy and Roy’s furbabies.  Sadly, they have both recently passed away. Roy & Peggy know that the perfect Dalmatian rescue will come into their lives when the time is right.

Dr. Cook’s office is about 25-28 miles from where Peggy and Roy live.  Dr. Nezhat’s office is located about 35 miles away.  And Dr. Metzger is no longer in practice.  But if you are going to any of these surgeons, or any other near that area and need a place to stay, please consider The Endo Inn.  The rules are simple : 1) you must bring someone with you (could be your family, friend, etc.); 2) if you want get around, you must rent (or bring) a car.  Roy & Peggy won’t taxi you around; and 3) a grocery store is located nearby – you must provide your own food.  Cupboard space is reserved in the kitchen for you to store and prepare your meals.  Many guests stay 1-2 weeks; some stay longer if needed.  There is a large backyard to enjoy and they offer free WiFi, too.  You’re encouraged to write in the guest book and leave notes for future guests.  Peggy leads a bible study at her church they both attend in Alameda once a week and you’re welcome to join during your stay, if so inclined.

In March of 2002, Peggy woke in the middle of the night and was having a really hard time going pee.  As she went to flush the toilet, suddenly a rush of blood filled the bowl.  She woke Roy, who took photographs and they called Dr. Cook.  He referred them to a urologist, and after a barrage of tests and retests, Peggy was told she had been pregnant and suffered a miscarriage.  Wait a minute…she had a hysterectomy in 1977 and had both of her Fallopian tubes and ovaries removed.  But, alas, all of her previous surgeons and doctors had missed one little egg floating around inside Peggy’s pelvic cavity for decades.  But Roy’s sperm found it…The successfully fertilized egg took root in her vaginal wall, but without proper nourishment or an actual womb to grow, it simply could not exist.  And the miscarriage resulted.  This news explained why Peggy had suddenly succumbed to nausea and vomiting in November 2001.  I cannot even imagine the devastation and confusion of this discovery.  I would have absolutely lost my mind.

Subsequent to the miscarriage, Peggy continued to have trouble peeing and passed more blood.  She and Roy went back to the urologist, and after several tests and exams, it was discovered that her urethra was so barraged by adhesions that it was blocked and filling with blood.  Her options?  Surgery or life-long use of catheters.  She didn’t like the risks of surgery with her urethra, so Peggy chose catheters.  For the rest of her life.  Every time she needs to pee…Roy, being the amazing husband that he is, still helps her every time she needs to pee.  She can do it herself when Roy’s not around, but it’s mainly a team effort.  They have even learned to sterilize and reuse the catheters, rather than dispose of them so often.

In 2006, she had three feet of her colon removed due to Endometriosis.  Feeling something isn’t quite right with her digestion, Peggy now has a colonoscopy scheduled for April 15, 2016, to make sure everything is going well in there. As always, listen to and honor your body.

In May 2007, Peggy was watching Good Morning America after Roy had left for work.  She noticed her left eye was blurry and she decided to go to the eye doctor.  They found a “huge cataract” on her left eye and surmised it grew due to her weakened immune system.  She had surgery to remove the cataract, and a second surgery for her right eye shortly after.  In her excitement to me, Peggy nearly shouted it was the best thing she could have done for her eyesight (it was an adorable display of passion).  She no longer wears glasses.  But Peggy believes that if she had a strong immune system, not weakened by Endometriosis, her cataracts wouldn’t have developed at such a young age, if at all.  She now suffers from Lupus, which she feels is also due to her weakened immune system.  We discussed my recent diagnosis of a cataract on my left eye, and both agree that Endometriosis, and medications, can weaken our immune systems and make the body susceptible to attack.  And…steered our conversation to everyone’s favorite : Lupron Depot.

Peggy was prescribed Lupron Depot the first year it came out.  She was taught how to inject herself at home, and took her dose every day as instructed by her doctor.  Every day…for one full year.  She strongly believes it’s poison.  But she also understands that the decision to start Lupron Depot is up to every woman. She will be frank with any woman who asks, and give them a strong dose of “Peggy Love” and suggest to them not to take it, but understands it is their choice; their body. Every woman is different with their Endometriosis and symptoms. And every woman is different with how she responds to treatment.  It’s an individual disease, “It’s not Endometriosis, it’s Peggy’s disease.  It’s Lisa’s disease.  Peggy doesn’t have Lisa’s Disease and Lisa doesn’t have Peggy’s Disease.  But we both share Endometriosis.” She summed it up perfectly.

Roy was laid off from the title company in 2007.  He found work from 2012 to 2013, but was laid off again. Now he and Peggy only receive their Social Security Income, and yet they still do not want any money from any guests.  The Endo Inn is their gift of love and hope to others.  “It wouldn’t feel right,” Peggy told me.

Her pain persisted through the years, and in 2008 or 2009, Peggy had a Medtronics pain pump surgically installed in her tummy, right under her belly button, the size of a hockey puck.  Roy named the pump “Gracie.”  Gracie feeds her pain medication on a regular basis (not Morphine; which she is allergic to, so Fentanyl is used).  And she has been pain-free since.  She needs to have the medication refilled every four months, and Gracie needs to be replaced every seven to eight years, replacing with a new upgraded battery.  But, Peggy is pain free.

Peggy has terrible problems with her feet and the problem was confirmed a year ago when a sore on the bottom of her big toe on her right foot would not heal.  She and Roy went to the emergency room at the County Hospital in Oakland (she and Roy don’t have medical insurance) and the doctor wanted to amputate her right foot.  Peggy told him, “not in your lifetime.  That is my foot and I am keeping it.  Do something with medication to get this healed.”  They prescribed her antibiotics and it healed, but was confirmed then that Peggy has Osteomyelitis in her bones of both of her feet, which will be present for the rest of her life.  She now takes medication and does exercises that strengthen her bones.

Let’s go back to the Vicodin pain medication that Peggy was prescribed by doctors back in 1977 all through 2008 or 2009 when her Medtronics pain pump was surgically put in.  She thought she would no longer need Vicodin since she had the pump, so Dr. Cook started to wean her off of the pain pills.  Peggy’s brain was not liking this and she began to have seizures, so Dr. Cook worked with Peggy and Roy and decided that Peggy would have to take Vicodin for the rest of her life to keep her brain happy.  However, with the concern of all of the Tylenol in the Vicodin, Dr. Cook was able to help and they now have been taking her prescriptions once a month for Hydrocodone to a compounding pharmacy.  They remove the Tylenol from the medication, taking care of that part of the issue, making Peggy’s brain very content.  Peggy says, “Another part of our journey with medication is that we must be very careful, as it will do long term damage that cannot changes things for the good in life.”  In May of 2015, Peggy missed taking her 4:00 am dose of medication and two hours later she had a seizure.  Roy was there and everything turned out okay, but confirmed that Peggy must be taking it as prescribed for the rest of her life.  They again thank Dr. Cook for the awesome care he has given to Peggy and he continues to give.

On September 30, 2011, Peggy was honored by The American Red Cross and given the “Act of Kindness & Philanthropy Hero Award” at a ceremony at The Hilton in Oakland, California.  This award honors individuals in communities who have made a difference through “acts of extraordinary courage and kindness.”  In March 2012, Peggy was recognized by the Daily Review/Contra Costa Times with the Hometown Heroes Award, which was also presented to her at a ceremony in Oakland.

What does Peggy want other women with Endometriosis to understand?  She feels that Endo is like a “benign cancer..it grows like cancer. Everywhere.”  It’s not limited to just our reproductive parts like some doctors would have us believe.  Doctors need to understand and treat the disease as a whole, remove it as a whole, and work toward better treatments and a cure. “Be cautious.  Be careful,” she told me, “Be your own advocate; your own doctor.”  Also, Peggy tells me that she is the conductor of her train in life.  “Don’t let your train derail…keep your train on the tracks,” she says.

Peggy will turn 62 this July.  And she’s dedicated her life to making sure women know they’re not alone with this disease, and that she and Roy are making a difference in so many lives.  And?  She’s beyond thankful for all of the opportunities she’s had to touch the lives of so many women.  Full of “Peggy Love.”  Peggy Love.

Peggy wants to write a book about her Journey with Endometriosis and the lives that have touched hers along this Journey.  She has a Cornwell clock on her mantle that she bought at Macy’s Department Store in 1976.  It’s been with her for this very long roadtrip.  “If that clock could talk…,” Peggy says…”if that clock could talk.”  Well, one day it will in the form of Peggy’s memoirs.

Through all that she has been through : the pain, the heartache, the rape, the surgeries, the let-down, the joys, the miscarriage, the victories, and her life with Roy, Peggy’s faith in God has remained steadfast.  And grows stronger every passing day.  She is a Born Again Christian, isn’t afraid to share her faith, but will also never push it on anyone.  She is about love.  Loving others and living her life with love.  That much was so evident during our phone conversation.

I know that if I ever head up north, whether it be for pleasure or perhaps seeking the services of Dr. Cook, I will have a place to stay at The Endo Inn.  An hour on the phone with this woman, and I know that we will never stop being close friends, bonded Sisters.

If you would like to reach out to Peggy, she has asked that I share all of her contact information.

The Endo Inn is located at 179 Via Bolsa in San Lorenzo, CA  94580.  You can talk to Peggy on the phone at (510) 276-4205 or email her at endonme@att.net.  And if you’d like to help Peggy and Roy with expenses, please feel free to donate to (and share) their fundraising campaign : https://www.gofundme.com/jbpj34ec

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I will never be able to thank Peggy enough for opening up to me, a complete stranger, over the phone.  Her Journey is a horrific and terrifying one, yet completely full of love and hope.  She and Roy are an inspiration.  Selfless, full of love and a desire to only help others.  We need more Peggys and Roys in this world.  Thank you, to the both of you, from the bottom of my heart.  I look forward to hugging you both one day.  ~Lisa

 

 

 

 

 

Meet Dr. Sonia Rebeles

Sonia Rebeles, MD-094

I’ve recently learned of an Endometriosis workshop taking place next Wednesday, February 24, 2016, in Beverly Hills.  I reached out to Dr. Sonia Rebeles, who will be conducting the workshop and she graciously agreed to answer some of our questions.

If you’re in the Beverly Hills area and available that evening to attend, I highly suggest you sit in.  For more information on that upcoming workshop, please click here for their Facebook page.  Don’t have Facebook? Don’t worry – more information can be found here.  And, if you’re like me and can’t attend, Dr. Rebeles may be able to upload a Youtube video afterward.

**

Please begin by telling myself and the readers a little bit about yourself.  

I’m 39 years old, originally from El Paso, Texas.  Professionally speaking, I recently relocated to Los Angeles to start a new private practice in Beverly Hills. I did my undergraduate training at Stanford University and fell in love with California.  Along multiple points throughout my career I’ve tried to venture back to the sunny state, but the timing was always off.  Finally, early last year when I was contemplating a career move and revisiting my career goals, I was recruited by and offered a truly once in a lifetime opportunity to showcase my talent by the phenomenal people at K and B Surgical Center in Beverly Hills.  I couldn’t pass up the opportunity to work alongside such a respectable group of physicians in such a prestigious region of the country.

Personally speaking, I love staying physically active and fit.  I am a Crossfit fiend, but I also enjoy cycling (road and mountain) and running on occasion, especially with my dog Bella.  My passion for photography is almost as great as my love of surgery and healing patients.  In both realms, I feel completely in my element.

Let’s see, what else…my birthday is April 1st.  No joke. 🙂

Do you have Endometriosis? 

Not as far as I know.  I suffer from the usual common female maladies like annoying periods and menstrual cramps and bloating, but I think that’s more PMS-related. I’m lucky that my symptoms have never been severe and on the rare occasion that they are, a couple of Advil do the trick.

What got you interested in treating Endometriosis?

In all honesty, I didn’t enjoy treating patients with endometriosis when I went through my residency training.  Most of my senior attendings and colleagues taught me to treat endometriosis medically first and rule out all the other types of pathology that could cause pelvic pain, like irritable bowel syndrome or pelvic inflammatory disease, or bladder infections, etc., all of which tend to be more rare entities as a cause of pelvic pain than endometriosis itself!  Surgery was always considered as a last resort, and it was always met with a sense of dread by physicians not comfortable dealing with it surgically.

When I went through my minimally invasive gynecologic surgical fellowship in 2008-2009, my mentors were master surgeons in laparoscopy and robotics who taught me the satisfaction gained with a challenging case or in surgically tackling the difficult endometriosis case, which was typically a patient who had been sent from doctor to doctor without relief either because surgery was avoided or inadequately performed initially.  For the first time in my career, I saw patients actually get better because they were treated with surgery correctly.

I know that there are several surgical techniques to excise Endometriosis, and it appears you specialize in robotic surgery (yay!).  Which method of excision do you prefer (fully removing the lesion and some healthy tissue around it; ablation; cauterization)?

For me, I prefer excision, fully removing the lesion with either sharp dissection (small scissors used with the assistance of the robot), or electrocautery.  Very rarely I will ablate lesions if they are in a particularly challenging area where dissection might incur damage to adjacent tissues.  If I suspect involvement of bowel or bladder or other non-gynecologic organ, I will solicit the help of that particular surgeon.

I prefer the robotic approach because of the enhanced visualization, 3-dimensional view and magnified vision.  Identifying the many appearances of endometriosis is essential.

Recovering from surgery can be a painful and scary experience.  Do you offer and tips or tricks to your patients for their recovery?  Not case-specific, but as a general rule of thumb?

In general, patients should take about 1-2 weeks away from their usual activity and refrain from strenuous lifting or driving while taking pain medications.  A general rule of thumb is if it still hurts, scale back.  The challenge with endometriosis patients is that more times than not, the post-surgical pain is more bearable than their endometriosis-related pain, so much so that they feel amazing even immediately postoperatively.  So, the tendency is for these patients to want to do more rather than allow their bodies to heal.

There are so many theories regarding the cause of Endometriosis.  Which theory(ies) do you believe may be the cause, if any? 

There are at least four predominant theories and evidence to support each.  I believe it can be multifactorial.  I’ll get into more detail on this during my seminar if this is of interest.

Do you feel that Endometriosis symptoms can be controlled by diet and supplements? 

 Sure.  In my opinion, the adoption of healthy living and eating habits will enhance overall wellness and promote healing, no matter the illness.

How do you feel about hysterectomies as a cure for Endometriosis? 

Removal of endometriosis is the treatment for endometriosis.  Hysterectomy (removal of the uterus) does not cure endometriosis. It may result in less pain when painful periods are the main symptom, but it does not cure endometriosis.

Where do you see medical care and treatment headed for Endometriosis over the next 10-20 years? 

Hopefully treatment will head towards more aggressive surgical management as a first step, preferably by highly skilled surgeons with expertise in minimally invasive approaches to treatment.  Promoting awareness of the utility of surgical management amongst fellow physicians will hopefully minimize or eliminate the circuitous path too many patients with endometriosis are sent on.

Any words of advice for Endometriosis sufferers who may be reading this? 

Your symptoms are real, your pain is real.  You deserve to be heard and most importantly to feel better, so, do your research. If you have pain that you no longer want to live with physically or mentally, or pain that is disrupting your quality of life and your doctor hasn’t at least considered endometriosis or hasn’t referred you to a surgeon who treats it, then find another doctor. Also, find a highly skilled, board certified surgeon when you are ready to go the surgical route.

What can we do to help you and the medical community?

Exactly what you are already doing – spread awareness.  Follow and promote members of the medical community who give good, quality, evidence-based information and have the training and expertise to deal with complex issues like these.

**

If you would like to contact Dr. Rebeles for a consultation or to ask your own questions about her experience treating Endometriosis, please feel free to do so:

Sonia Rebeles, MD
Minimally Invasive Women’s Surgery
9033 Wilshire Blvd. Suite 200, Beverly Hills, CA 90211
www.SoniaRebelesMD.com
Phone: (424) 285-8535
Fax: (424) 285-8534
Email: drrebeles@soniarebelesmd.com

Dr. Rebeles currently accepts all PPO insurances, cash pay.  (She is in the process of becoming an in-network provider with some PPOs and eventually Medicare, but this takes time).

I would like to extend a personal thank you to Dr. Rebeles, not only for taking the time to respond to these questions, but for doing so with such fervor!  It’s refreshing to find physicians and surgeons who understand so much about Endometriosis, and how best to treat it.

And, as always, together we can do great things!

Yours,

Lisa

 

Keeping a Healthy Pooper to Help my Endo

Diagram of human bowels

Here we go again!  Discussing taboo topics that nobody ever really wants to talk about.

You may remember a few months ago I met with a gastroenterologist to discuss my complaints of pain before, during, and after bowel movements. Anyway, he referred me to a colorectal surgeon here in San Diego for some further testing.  A few months later and my insurance finally approved the appointment!  And *poof* my very first visit to a colorectal surgeon took place last week (nearly five months after my initial visit with my PCP to discuss these complaints)…

Again, we talked about my Endometriosis and my fear that it may be on my bowels due to my recently-returned issues with stabbing daggers and pain, constipation, and diarrhea.  He (and I) also agreed with the GI’s plan to ride out the symptoms as best I can until a second Endo excision surgery is (if needed) ever scheduled…we’d check out the bowels then rather than scheduling a potentially needless exploratory surgery.

Butt (haha see what I did there?) Dr. Worsey (the colorectal surgeon) wanted to examine my guts with a little camera, which is something I’ve never had done and wanted to  make sure I checked out fine.  Two enemas that morning before my appointment and now I’m in a very (dis)graceful pose on a mechanical table, my toosh up in the air 45 degrees and my face pointed toward the floor. Let me tell you : a flexible sigmoidoscopy is not a pleasant experience.  Not one bit and I took the rest of the day off of work due to the discomfort.

So, everything inside my bowel (up to the sigmoid colon) looks great.  The only thing he found wrong was an anal fissure.  Well now, that doesn’t sound good…It’s a tear in your bunghole or your bunghole canal.  “But how can a tiny little tear cause such severe pain throughout my pooping process,” I wondered.  Apparently, they can cause “severe pain during, and especially after, a bowel movement, lasting from several minutes to a few hours,” rectal bleeding, itching, and funky butt discharge…all of which I have had in the past.  And 10% of patients who visit colorectal surgeons for poopy pain end up having anal fissures.  So he gave me fierce instructions with a wagging finger to include more fiber in my diet and gave me a gallon-size ziploc baggy of sample packets of various fiber powder packets.  He also prescribed…medicated suppositories *oh joy* to help the fissure to heal.

So, since February 10, 2016, I’ve been drinking my powder fiber drink (easing it into my diet once a day per the instructions; will eventually up that dosage to three times per day) and using my nightly suppositories (he gave me a 12-day supply).   And guess what?

My gut still burns right before I have to poo…but that’s nice because it’s a kind of tell that I better get over there soon.  But since two days after my appointment and medication regimen, I haven’t felt the daggers/stabbing pain/glass tear through the length of my gut.  Or the excruciating stretching/tearing pain of my poop-hole, either.   My poops have been…quick, easy, and dare I jinx it…normal.  And every day…sometimes multiple times a day!  I used to go maybe once every 3 days…this is so much better!

But what does fiber have to do with helping my pain? And my Endo? And my peace of mind?  Well, besides smoothing out the transportation of my angry poos, it is believed that fiber may actually decrease excess levels of estrogen in the body by binding to it and pooping it out.  Why is that important?  Many physicians believe that Endometriosis is an estrogen-driven disease.  It’s also believed to do the same with toxins and the “bad things” in our guts.

I eat a lot of fruits, veggies, and beans in my diet.  I figured that was enough fiber for me…apparently not.

Looking for good fiber to include in your diet?  I went through the sample packets given to me by my colorectal surgeon (these included Metamucil and Konsyl).  Read the labels!  All of the sugar-free samples contained Aspartame.  And they also all contained psyllium, which may plug you up worse if you’re not drinking enough water.   Do your research and find the right one for you.  I take Maxi Health Fibermax once a day…I used to drink it with orange juice, until I realized how much sugar was in OJ.  Now I drink it with watered down V8 Harvest Vegetables.  And it gets me half my daily requirement of fiber, and I’d like to think I get the rest of it with my daily food : 1 serving of shredded wheat with berries, as well as snacking on fruits and veggies.

I’d like to believe that the anal fissure was causing my very painful bowel movements and that the addition of fiber and these medicated suppositories have helped immensely.  So I’d like to believe the anal fissure was the sole cause of my crazy pain in my gut.  And that the fiber intake and healing suppositories will fix it.  

Unfortunately, in July of 2018 during another excision surgery they found Endometriosis on my small intestine. In of November of 2018, I underwent a bowel resection to remove some of my intestines and appendix. All came back covered with Endo lesions (most of which was microscopic!)

I’ve spoken with several EndoSisters (who don’t know if they have Endo on their bowels or not) who have also complained of the same stabbing/knives/glass dragging through their gut pain, or painful poops.  I encourage you all to see your physician and get a referral to a specialist in the butt-area.  It may be Endo (or not), but it may be something else…possibly as simple as a lack of fiber in your diet or a tear on your butthole. (Sorry, just really trying to keep this lighthearted…rhymes with farted…hehe).

And, remember, “Some people are so positive, that when they slip in dog poop, they pirouette.” ~Josh Stern

*Have you had poopy gut pain and found out the cause?  Feel free to drop us a comment!  I’d love to hear what it was, if you fixed it, and how…*

(Updated March 27, 2019)

Resources:

American Society of Colon and Rectal Surgeons – Anal fissure

Flo Living – Endometriosis symptoms and how to heal

Home Remedy – Diet remedy for Endoemetriosis

Livestrong – Good foods to eat when you have Endometriosis

Love to Know – Diet for Endometriosis

Medical News Today – Anal fissure : causes, symptoms, and treatment

Medicinenet.com – Anal fissure

Physicians’ Desk Reference – Endometriosis treatment