Share Your Story : Kelly

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Kelly was 23 years old when she was diagnosed with Endometriosis.  Two years later and living in England, she’s started her own blog to help spread awareness about this illness.  But today Kelly tells us her story…

Kelly’s Journey: My name is Kelly and I’m a 25 year old woman who has been living with endometriosis since roughly 2003. I was diagnosed in January 2015 after laparoscopic surgery at the age of 23, fifteen days before I turned 24 years old. I have endo on my bladder, bowels and peritoneum (as far as I know – it has been over a year since I had a laparoscopy). I had never heard of endometriosis before August 2014 so I hope that I can help women who are newly diagnosed, women who are struggling with any aspect of ‘endo life’, partners of women who have endo, and also to raise awareness for those who have never heard of this condition that we wrestle with one a daily basis.

Words of Advice:  You are not alone. We are all Endo Warriors and we will beat this!

The Last Word:  I love the Bloomin’ Uterus blog 🙂 I had never read another endo-related blog before I started my own and I love how many I have found already.

If you’d like to email Kelly, you can do so kellytorr@hotmail.com or follow her blog at http://lifewithendosite.wordpress.com/

I want to send a special Thank You out to Kelly for being brave enough to share her personal story with us today.  You are a beautiful, brave, and strong woman.  I was excited to stumble upon your blog the other day!  Always wonderful to see EndoSisters doing all they can to reach out to others and help!  Keep up the great work, Kelly! ❤

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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.

Share your Story : Kyla

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Kyla is 34-years-old.  Nine weeks ago she had a total hysterectomy and is struggling with a potential diagnosis of Endometriosis and needs our help…

Kyla’s Journey: Hello everyone .. I recently had a total Da Vinci hysterectomy with bilateral tube removal due to several years of horrible pain with my monthly cycles and irregular bleeding with painful intercourse. I have had a very rough recovery, suffering 2 large hematomas and am still slowly recovering at 9 weeks post op. I have suspected for a long time that I had/have endo. My Dr. Has not discussed her findings during my hysto. ..she has only told me that she removed extensive scar tissue.

Because of the hematomas, I have had several CT scans since surgery to monitor my condition. At my last scan they found a nodule on my lung which I have learned can be a symptom of thoracic endo. While discussing this with my mother, she told me that my Dr. told her after my surgery that she had removed old endometrial tissue.

I just feel like there are things going on that have not been completely “fixed” by the surgery. I have suspected endo for many years and actually felt foolish after my doctor didn’t mention it at all…but now I’m finding that she did mention it to my mother so I just don’t know what to think. And as for the lung nodule, I have not had a confirmation as to what it is, I go for a re-check to see if it’s still there on the 21st…. But I am suspicious of the seemingly “mystery endo” … I don’t know if I should just ask my Dr. About it or wait for her to possibly mention it?

I don’t know how to proceed at this point. I still feel like I am experiencing endo symptoms and am definitely concerned about my lung.

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Kyla needs our help.  She wants to know if she needs to push her doctor for further information, if she should discuss the nodule on her lung, and her symptoms.  If you wish to contact Kyla, please email her at kilyien@gmail.com.  Or if you leave a comment below, I’ll make sure she receives it.

 

I want to send a special Thank You out to Kyla for being brave enough to share her personal story with us today.  You are a beautiful, brave, and strong woman.

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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.

Recap : End Endo Fundraiser!

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On February 27, 2016, The San Diego Sisters of Perpetual Indulgence hosted an Endometriosis awareness fundraiser at Shooters Cocktails in Spring Valley, CA.  It was a 5-hour event at the local bar, hosting specialty cocktails and live music by The Scavengers.

Ms. Tanya Linda was the Bartender of Honor and she served up specialty drinks with flair!  For every drink sold, $1 would be donated to the fundraiser.  The Sisters also placed out donation buckets along the bar – available for anyone to drop a dollar or two into.  The specialty drinks were: The Moist Vagina (a shot), Heavy Flow (a bloody mary), and Yeast Induction (a beer with a shot).

But, after speaking with Sister Donatella Soul, I learned her two favorite highlights of the evening:

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  1.  Two young women came into the bar.  Donatella’s beau, Richard, was talking to them and learned one of them suffered from Endometriosis.  That she had never been to any type of Endo event and her best friend saw the event and encouraged her to come…so they did!  Richard introduced them to Donatella, and the three gals talked long after the event had ended.  Such a supportive group!  And just getting one more EndoSister to realize she’s got that support was what the night truly was all about.

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  1. Three men sat down at the bar, clueless as to what they had walked into.  They were told about Endometriosis, what it does, and the efforts of the fundraiser…as well as the three specialty drinks.  And these three gentlemen pitched right in!  They ordered 4-5 rounds of Moist Vaginas, enjoyed the music, and the good company.  Thanks guys!

The Scavengers played music from 2pm-4pm, rocking the afternoon away and the Sisters and attendees danced and danced and danced.  Good times had by all!

All in all, they raised $111 for the Endometriosis Foundation of America!  The check was mailed off to the EFA a few days later!  Thank you, Sisters, for helping raise awareness of Endometriosis, educate some folks about our disease, and bring the community together in such a wonderful and fun way!

Looking forward to future events!  Keep ’em coming.  And thank you so much for putting this on!!!

Yours,

Lisa

All photographs by Richard T. Reyes and used with permission

Share Your Story : Hailey

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Hailey lives in Okalahoma.  When she was 22 years old, she received her Endometriosis diagnosis.  Now, over a decade later, she offers some stellar words of advice!!

Hailey’s Journey: I am going to call this the short version because we all know too well that listing every ounce of our story would be more like a novel than a blog post! Looking back I think it’s something I have had issues with for much much longer than my diagnosis.

I grew up in a house where “that time of the month” wasn’t really talked about. I have 2 older sisters so as long as the bathroom was stocked with tampons no one ever talked about it. I got my first migraine with my first period. Which was in 4th or 5th grade. They have always been miserably painful and heavy but being as they were always that way and I was to shy to ask any different. The older I got the worse I got, once I hit highschool we added cyst on top of everything else. I would miss school at least 4 or 5 days a month. I think it was my freshman year my mom finally took me to see a neurologist because all the ER would do was give me a double dose of morphine and send me on my way.

After several rounds of hormone injection and 3 days in ICU I was pain free for about 3 months. After that I struggled through different birth controls and medications until my early 20’s after a 2nd trimester miscarriage and inability to get pregnant again my OB finally agreed to do a scope. By this time he had me feeling all this was in my head and every woman was uncomfortable during her period. Ugh!

Tada he came straight out of the OR and told my husband I wasn’t losing it, he knew exactly what it was but would need a lab to confirm it. I was able to get 2 amazing boys out of this body before it decided to completely launch a war on me. I had done about 15-18 months of Lupron and when that only lasted about 2 months past my last injection I gave up on my Dr.

We relocated due to my husbands job and the amazing woman I found that was familiar with Endo. gave me one look and said- “please let me help you be pain free.” She listened and cared and for once didn’t make me feel crazy. I wanted a life back, actually I wanted a life better than the one I thought I had. I wanted to cuddle with something other than my heating pad. So in 2013 I gave up my war and got a hysterectomy at the age of 28. She was able to salvage one ovary for hormone production and she was also clear this was not a cure and it wasn’t 100% guarantee.

Today I live my life, I am able to do things I was never able to before. I can’t lie and say that when my friends announce they are pregnant that it doesn’t sting somewhere in my heart because it does. I would say I am 85% pain free, if I keep my diet and lifestyle in check I don’t have a lot of symptoms, but when I don’t I can tell and BOOM HELLO FLARE UP! It’s amazing how I can still swell up and cramp when I have no dang uterus. I will also say close friends cycles sometimes cause me some angst, I still breakout along with them. Geez someone definitely didn’t think it through when the female body was designed!

Words of Advice for Us:  I myself don’t have a daughter but I urge those who do, talk to them about their periods. Let them know what is normal and what is not. Bridge the gap window of 8-10 years to diagnose. No one should have to go through life feeling like they are crazy or it’s all in their head! It’s an uncomfortable conversation I am aware, I have boys and we have to talk about things I never wanted to know also!

The Last Word:  I don’t think there is a single right or wrong treatment answer for any of us. Every time I come in contact with an Endo-Sister and we swap battle stories they are so different even if the outcome is the same. Never give up finding your peace, you’re the only who knows what that looks like.

If you wish to contact Hailey, you can e-mail her here or follow her blog: https://nragefitness.wordpress.com/

I want to send a special Thank You out to Hailey for being brave enough to share her personal story, struggle, and victories with us today.  You are a beautiful, brave, and strong woman.  Although I still have my uterus, I know that sting you feel when friends announce pregnancies.  I haven’t been able to conceive and it just creates a tender spot…ANYWAY, thank you SO much for sharing!!!  Yours, Lisa.

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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.

Team Zimbabwe’s Endometriosis Awareness Talk

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On February 27, 2016, Team Zimbabwe EndoMarch hosted an Endometriosis Awareness Talk; the very first of it’s kind in Zimbabwe.  Who makes up Team Zimbabwe? Nearly 50 men and women dedicated to raising awareness of this illness in their little corner of the world.  Nadia and Time, two women, with the help of their friends and their family put together this Awareness Talk.  See? I told you : together we can do great things! GREAT THINGS!

You may remember Nadia and Tine from when they both previously shared their stories.  If you haven’t read their Endo stories, please feel free to do so by clicking here and here.

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The event was held at Kidz College, a small kindercare facility in Harare, Zimbabwe.  Nadia used to work there and is good friends with the owner, Mrs. Nasreen Suleman, who kindly allowed them to use their facilities for the event.  They had full use of a classroom, including the chalkboard and a TV.  There were approximately 50 attendees and three guest speakers : Professor S. Munjanja, Dr. D. Djordjevic, and Dr. T. Magure.  Each one of the guests of honor is an OB/GYN.

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Tatenda, one of the EndoSisters in Team Zimbabwe’s support group, opened up with the welcoming speech, and Tine shared a beautiful and moving piece with the group that she had written about Endometriosis.  She and Nadia also shared their Endo Stories with everyone involved.   Many women were still not comfortable sharing their experiences with the group, but one brave young woman named Sarah stepped up and has now joined their Support Group.

Professor Munjanaja, Dr. Djordjevic, and Dr. Magure shared an introduction to Endometriosis (for any who weren’t aware of what it was), the different stages of the disease, the severity of the symptoms, and the differences between normal period pain and the pain produced by Endometriosis.  Dr. Djordjevic showed a video of what Endometriosis looks like and how a laparoscopic surgery is performed.  It was an incredibly informative event, open to a Q&A between the speakers and guests.  The two-hour event lasted an additional hour because of the many questions asked and answered.  Knowledge and understanding are powerful tools.

Ms. Shaida Kara and Mrs. Razia Latif of the Gift of Givers Zimbabwe donated juices, eclairs, and muffins for the attendees to enjoy during the event.  They also donated two beautiful cakes for an auction.  Dr. Djordjevic and Professor Munjanaja were the highest bidders!  The funds raised from the cake sales will go toward Team Zimbabwe’s continued efforts to raise awareness of Endometriosis.

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Team Zimbabwe is also raising funds by selling yellow awareness ribbons.  If you would like to purchase one, please feel free to contact Nadia or Tine at their respective email addresses:  nadiaessof@hotmail.com or tinemataz@hotmail.com.  And if you live in Zimbabwe and would like to join the Team or their March 19, 2016 EndoMarch, please check them out on Facebook here.

The attendees now have a greater understanding about the disease, the symptoms, and the treatments available.  And Zimbabwe is growing together as a community through this disease and the efforts of women like Tine and Nadia.  Continue the great work, Team Zimbabwe!  I appreciate all that you do, even from my tiny corner of the world over here.  Thank you for everything!!!  Looking forward to following your future endeavors!

All photographs used with permission from Team Zimbabwe

 

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.

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

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

 

 

 

 

 

PUSHUPM.O.B.B 4 Endometriosis : a great way to raise awareness of Endometriosis

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I’ve had the pleasure of following the efforts of one man for the past year and a half to raise awareness of Endometriosis. He’s a dedicated husband to a woman who suffers from Endometriosis, and he’s a great motivator, and someone I’m honored to call my friend.  I’d like you to meet Jason Lawson.  He agreed to answer a few questions that we could share with you today!  Curious what he’s doing?  Flex your muscles and read on…

Tell us a little about yourself.

My name is Jason T. Lawson and I am 33 years old. I was born and raised in Chicago, Illinois (South side). I am a big Chicago Bulls fan and Chicago Sky fan!  I grew up with both my loving parents; my younger brother Matthew, and younger sister Rita. I left Chicago in 2004 and joined the U.S. Navy. I enjoyed 8 and a half years of service in the Arm Forces, which brought me to my last duty (2009 to 2012) station in Bethesda, Maryland at the Walter Reed National Military Medical Center.  My last year at WRNMMC-Bethesda, I met my loving wife, Laura Anne. We met at the Subway within the medical center in Bethesda. Our inside joke is that their slogan is “Eat Fresh”, and ours is “Love Fresh”. It was truly love at first sight! We finally made it official on April 9, 2012, as husband and wife.  Since then, we have purchased our first house in Laurel, Maryland and we have enjoyed multiple vacations to the Caribbean ( our second home).  We both work at the military hospital in Bethesda, where we first met.

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Jason & Laura Anne

Why are you interested in raising awareness for Endometriosis?

Well, I am passionate about raising awareness for Endometriosis because in 2012, the love of my life, Laura Anne Lawson, was properly diagnosed with this horrible and complex disease. At the time, I was just honorably discharged from the Navy. Though, I was not employed upon my discharge as planned, I was a full time student, taking full advantage of my POST 9/11 educational benefits. Witnessing my wife get up every morning, through the Endometriosis  pain and fatigue. I felt inadequate as a husband and friend. To see someone you love with all your heart going through that much pain and you can not do anything to help (though you try) makes you feel helpless inside. So, I got to a point where I would try to bear the burdens of my wife and all those suffering from this disease. It was then, when a Scripture in the book of Galatians became my reality for raising awareness for Endometriosis. In the six chapter and second verse, the author Paul admonish this attitude toward those in need, “Bear ye one another’s burdens, and so fulfill the law of Christ.” I definitely accredit the love of Christ as being my motivation behind raising awareness for this disease that plagues my loving wife Laura Anne and the 176 million women (1 out of 10) world wide.

How has your life changed since learning about the disease?

By learning the wealth of information about this disease, it has helped me to be even more empathetic and sympathetic towards all mankind. Endometriosis is a disease that is not “written on the person’s face”. You cannot tell if a women is suffering from this disease. Simply because the symptoms are internal and very personal to a women’s well being. So, unless you are informed by a women about her have this disease, you probably wouldn’t notice anything was wrong with her. For this reason, I have found myself being more cautious towards individuals, because you never know what they may be going through physically. Also, learning about this disease has changed my life in how I respond to people’s level of pain. Understanding that I can not compare my tolerance level of pain with someone’s else. Laura Anne having Endometriosis totally taught me this valuable lesson, which I cherish deeply.

How’d you think up your push-up campaign?

To be honest, I have to give God all the credit for the creativity in establishing this push-up challenge. I was inspired by the “Ice Bucket challenge”, because I saw how engaging and educational it was in raising awareness for Multiple Sclerosis. So, I thought to myself that, “I need to bring awareness to Endometriosis kind of that”. With some brain storming, I came up with the P.E.A. 4 E.F.A. challenge, which stands for Pushing-up Endometriosis Awareness For Endometriosis Foundation of America. After that, I made some fliers and I was on my way to the gym within the location of  the apartment complex Laura Anne and I were living in at the time. I started doing the challenge in the Fall of 2014, it was on every Wednesday. How I administered the challenge was, if I here the word “Hump” or Hump Day,” I would drop and do four pushing-ups. I was anticipating a questionable reaction from those who were within my proximity. This was the so-called ice breaker in order to educate individuals about this complicated disease. Well, this method of administering the challenge didn’t catch on as I except it to. So, I decide to do it everyday and every month. The pushing-up amount was dictated by the numerical day of that particular week. Simply put, if it is January 1, 2015 you do “one” pushing-up and post it on Facebook, then hash tag it “one4endo”. This year, I have changed the challenge’s name to PUSHUPM.O.B.B 4 Endometriosis , which stands for: PushUp More Opportunities Beyond Belief For Endometriosis. I just thought this was  more creative in nature and highlights what this challenge is all about.

I’ve noticed you’ve encouraged other men and women to join you. Do they continue the daily challenge, too?

I definitely encourage friends and those who I come in contact with on the job to participate in the challenge. I have gotten a lot of support from individuals in my work place. Like Petty Officer Second Class Joshua Marshall, who is constantly involved in the challenge. Last year, in the month of December, he participated every day in the challenge, earning a yellow endoBRACLET  for his support in that month. Another co-work, Ramon, always ask “How many today!” He is consistent in participating in the PUSHM.O.B.B. 4 Endometriosis challenge. This is just to name a couple of my supportive co-workers within my workplace. I truly appreciate every one that takes part in the challenge and shows support. Whether it is by posting a push up video on Facebook or simply hitting the “like” button on those same videos. I just want to say thank you very much!

If someone wants to do the challenge, how do they sign up?

It is very simple to join in on the PUSHM.O.B.B challenge 4 Endometriosis. All someone has to do is the amount of push ups for that day, which is dictated by the numerical day of the week it is within that particular month. Have it videotaped and post it on Facebook; then hash tag it. For example. “thirty4endometriosis” (March 30, 2016). The goal is to push up Endometriosis awareness one push up at a time. This is an every day, every month, and every year type of challenge. For me, it was not only just beneficial in raising awareness for Endometriosis. But by doing this challenge, I have increased my push up endurance. I can remember at one time, I would do fifteen push ups in one set and be tired. But, now I can do forty with ease. Definitely beneficial concerning exercise and awareness purposes.

How would you like to see your challenge grow and evolve over the next several years?

Well, I’m glad you asked this question. I have thought about this so many times over. I would like to see this challenge within the realm of a TV commercial in order to raise awareness. I have also reached out to the NBA and WNBA for their support in pushing-up awareness concerning this challenge. I would love to see it being part of the WNBA or NBA Care movement. I haven’t received any word from either one of them yet, but I am optimistic about get a respond from them soon. I ultimately would love to see this challenge putting Endometriosis on the same platform of Breast cancer. Giving Endometriosis the same volume of advertisement advocacy as Breast Cancer receives. This would be inspirational!

Do you have any words of wisdom for other spouses/significant others of women suffering with  Endometriosis?

I would like to share with spouses /significant others of women suffering with Endometriosis to be patience with them. Especially, when it comes to intimacy. I have heard many stories of men cheating on their spouse simply because they weren’t regularly sexual active with their wive. It definitely hurts my heart to hear such stories. I know as men we have sexual “desires”, but let us not be controlled by our desires. Here is where we need to practice self control and become masters of our domain. Trust, I speak from experience. Marriage is more that just sexual intimacy, I just love spending time with Laura Anne. I try to take time out to learn more about Laura Anne everyday and comfort her while she going through her episodes of  Endometriosis pain. I try not to apply pressure on the issue of sex, because it becomes a catch 22. What I mean is, I don’t want Laura Anne to seem less attractive by not communicating it, but I don’t want it to seem like I am seeking sex with every comment or action I make. It’s pretty complex, and it takes learning your spouse more in order to find that happy medium.

Are there other ways that you’re helping (or have helped) raise Endo awareness? (I remember you mailed off buttons to the NBA…)

I am in the process (as God permits) of trying to start the first official “Hello-Yellow” Campaign 2016 Walter Reed National Military Medical Center in Bethesda Maryland. I would like this to be an annual event  during the Month of March (endoAWARENESS Month). I would like it to be official as possible, with guest speakers (like Lisa Drayton) 🙂 and educational information. I just want to bring the awareness level of Endometriosis to an all time high. And what better place to do that  than at a  hospital!

Is there anything we can do to help?

For now, I just ask to keep this challenge, along with all the women with this disease in your thoughts and prayers. Definitely continue to pray for a cure.

Anything else you’d like to add?

Yes, I would love to share some encouragement with all those women who are suffering from this disease. In the book of Matthew 9:20-22, Mark 5:25-34; Luke 8:43-47 tell a riveting true story about a woman with an issue of blood (Hemorrhaging). Though, the term Endometriosis is a modern day one, this anonymous woman suffered financial, physically, psychologically; socially and spiritually in the same manner as women with Endometriosis today. With this information, it could be possible that she was suffering from Endometriosis. But, if she was or was not, that fact is that she reached out for Jesus! With that being said, I want to encourage the 176 million women to reach out for Jesus for healing and strength concerning this disease. For Jesus is listening and ready to heal, just as He did for that faithful woman amongst the crowd.

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If you would like to reach out to Jason for more information, you can email him at jason.lawson1982@yahoo.com or follow his efforts (or cheering him on in his videos) on Facebook here.

Thanks again, Jason, for all that you have done, and all that you will do.  I appreciate you so very much.

Yours, Lisa