Local Couple Offers Endometriosis Patients A Haven

(Endometriosis occurs when the tissue that lines the uterus (the tissue is called endometrium) is found in other parts of a woman’s body, typically in the abdomen, ovaries, fallopian tubes or pelvic cavity, among other locations. This is a story about a local safehouse for sufferers awaiting treatment.)

By Regina Sarnicola

If you visit the back guest room of a modest home located in San Lorenzo, you will be met with quite an interior decor.

Covering the walls are various notes and awards, hand sketched art drawings and pictures of smiling women and families.

Dalmatian trinkets - everything from plates to calendars to stuffed animals - can be spotted throughout the room, including a large Dalmatian adorning a hand sewn pillow on the homey guest bed.

Resting on one of two nightstands are five guest books that capture a brief chapter in the lives of the 108 strangers who have inhabited this room.

Filled from cover to cover with notes, pictures and names of people from all over the country, these books tell a story without any narration.

While it’s typical for households to have one or two guest books spanning years of visitors attending dinners, parties or get-togethers, these five guest books have something special in common. All the characters are survivors of endometriosis.

Over the past 11 years, Roy and Peggy Santa Maria have opened their home to strangers from all over the state and the country flocking to Northern California to receive treatment for the surprisingly common, yet not well known, disease of endometriosis.

Endometriosis is formed when this misplaced tissue implants and starts to grow. Since the tissue has no way of leaving the body during menstruation, results can be internal bleeding, a breakdown of the blood and tissue and inflammation.

This in turn can cause extreme pain involving painful intercourse, pain during urination/bowel movements and can even lead to infertility. Approximately 6 million women in the United States alone are affected with this disease where there is no known cause or cure.

Long before Peggy and Roy converted their home into the “Endo Inn,” Peggy was suffering through her own pain and the lack of literature on endometriosis.

Now 58 years old, Peggy first started having problems with her period when she was 14.

“I dealt with this for 40 years. It is a very painful disease. Doctors throughout the world have not paid attention to it – they don’t want to – because it is a very complex disease. Every woman has it different.” Peggy said. “Therefore it has stayed a very mysterious disease.”

Peggy’s pain was severe and constant. She described the pain as if she was being stabbed in her left side and would sometimes be felt in her lower back and down her left leg.

At the age of 23, Peggy underwent a hysterectomy, a procedure which is still practiced to this day for some women with endometriosis.

“That was in 1978 and I really believed the doctor. I thought, they know what they are doing so when I was told I would have no more pain I was excited. But since there is no cure, that did not end up happening,” she said. “I had surgery after surgery because no doctor could get it right. New medications and approaches would come out but they were still terrible procedures to go through.”

Peggy has undergone 20 operations. Operation 12 removed three feet of her colon after stage four growths were found. The most recent took place in 2006 in which a pain pump was installed. Pain medication travels through a cord under the right side of her waistband under her belly button to a chip that spits out medicine every 15 minutes.

It was a bittersweet treatment for although the pain is gone, Peggy is now suffering from immune problems that can result in illnesses such as lupus.

Despite all her suffering, Peggy has become a pioneer for endometriosis in more ways than one. In 1991 she quit her job after moving to California from South Dakota because the pain was so unbearable. Her first task was to apply for state disability.

“When that ran out, I applied for Social Security. However, they said they wouldn’t give me any money because endometriosis wasn’t a disease in their book,” Peggy said. “I reapplied three different times and on the fourth appeal I had to go into court. I had wheelbarrows of records and letters with me.”

It took three more months before her case was finally approved and Peggy was allowed her to collect her money. Following her case, endometriosis was added to the book of illnesses to make it easier for other women to be approved.

“It was a real joy to be able to do that and I would do it all over again if I could,” she said.

In the mid-1990s Peggy was still married to her first husband and dreaming of being involved with an endometriosis call center. The paperwork was filled out and Peggy was waiting to be approved. One day a call came through from a woman who had endometriosis and needed someone to talk to.

“I hadn’t been approved yet, but we talked for over an hour. She was really going to kill herself,” Peggy said. “I guided her through things and talked about how life is precious and after we talked for some time she seemed to be better. Then she said, congratulations, you passed the last part of your test. It was the head of the endometriosis association in Milwaukee.”

Since that day, Peggy has spoken on the phone with numerous women, comforting them, answering questions, reassuring them and guiding them through the hardships of a life turned upside down because of endometriosis. She keeps in touch with many of them.

Colleen Carrell was one of the women who met Peggy through her involvement with the call crisis center and they have stayed friends for many years.

“We talked several times over the phone over the years and about four years ago I went to California for surgery and actually got to meet Peggy,” Carrell said. “She has been a great friend, support and advocate. I live in a very small town in Michigan so there isn’t a lot of support in this area. With Peggy, we started talking and a friendship developed.”

The idea for the Endo Inn was sparked in 1999 when the phone was ringing frequently with calls from women because of Peggy’s involvement, including being president of the Endometriosis chapter in San Francisco. She had just applied to be a crisis counselor and despite not having been approved yet, was still talking to women from all over the country who were coming to California for surgery.

“My (current) husband would hear me talk to all these women and one night I was walking down the hallway and Roy was in the computer room. I heard him kind of talking to himself, saying something like “Stay at the Endo Inn while you’re having your endo taken out.” I asked what he said and he told me, you’ve been talking to all these ladies who are coming out here, why don’t we open our home and let them stay here?” Peggy said. “For two or three months he had been thinking about it. So we started talking to doctors and people in the medical world and the association and getting ideas. We considered all the pros and cons and decided yes, let’s do this.”

The idea “just kind of came” to Roy when he realized how many women were coming from all over who didn’t know anyone here or have any place to stay other than a hotel or motel.

Roy said being in love with Peggy and caring for her is what keeps him going when things get tough.

“She’s my wife and I’m concerned with how she is feeling and how she is doing. Having this disease and having someone to go through it with you helps, and I want to do what I can for her,” he said. “It seems to be a natural sort of thing.”

Roy and Peggy decided to make the stay free of charge so women could come and focus on recovering while feeling at home. Since the Internet hadn’t taken off quite yet, most of their advertising was done word of mouth.

The only rules Peggy and Roy set were that every woman needed to bring someone with them, whether it was a family member or friend, and they needed to rent a car if they wanted to get around.

Upon arrival, the Santa Marias show their visitors the guest room, how to get in and out of the house, where the grocery store is and even reserve some cupboard space for them.

The home has a large back yard and wireless Internet. The bed set in the room was donated from a former doctor who gave it to Peggy and Roy when she found out what they were doing.

The smiling women on the walls are pictures from the monthly endometriosis meetings and of the women and their families who have stayed throughout the years. The pencil drawings are from a guest’s mother and the Dalmatian pillow was made by a friend of another guest. (The Dalmatian art has to do with the two Dalmatians the Santa Marias have and say is part of the healing process).

All five guests books are for women to read when they visit. The left page of each book is dedicated to telling the story of the guest with their photo adorning the right page.

After each guest leaves, Peggy includes their contact information and fun stickers of what they were like. Guests typically stay anywhere from a week to two weeks and some have stayed on more than one occasion.

The first call came from the endometriosis association in Milwaukee in 2000 from a girl who was coming to have surgery asking if she and her husband could stay at the Endo Inn.

Since then, 107 other guests have had the pleasure of Roy and Peggy’s hospitality and comforts of home during their stay.

Kristina VanPelt was the 104th guest and was there for four days in November 2011. She said as a teenager she used to faint at school because of the pain and would be bedridden for days. She found out about the Endo Inn from an article in her doctor’s waiting room.

“Peggy and Roy have two of the biggest hearts out of anyone I’ve ever met. Peggy told me about her experiences and just being around someone who has been through what you’re going through is comforting,” VanPelt said. “And for her to be so optimistic and happy after such ordeals really sent it home for me.”

Roy himself has connected with the husbands and boyfriends that have come, always offering to give support and advice.

“It’s kind of a difficult thing. A difference between men and women are how women are more open and talkative, so with guys it’s been a 50/50 proposition to talk,” Roy said. “I just let them know that door is open if they choose to talk."

Billy Emerton, who with his wife Carrie were the 99th guests to stay at the Endo Inn, said Roy is a funny guy to be around who likes talking about sports yet is helpful to chat with.

“He let us know he was there and helps the guys get their minds off the unfortunate circumstances for why we were there,” Emerton said.

Having been friends for 35 years, 14 of which as a married couple, Peggy said Roy has always been her friend and support system.

“When he came up with this idea it was like, there he goes again with his caring, caring about me and other women,” Peggy said. “That it was him as a man thinking about this and wanting to reach out was really huge to me and shows he loves and cares about me and wants to help.

Peggy said Roy has been a real testimony to other men who are scared and need courage.

“They see how it’s OK. It’s not a scary journey you are taking. I’ve been very impressed with my sweetie pie,” she said.

Los Gatos has become almost a Mecca for women seeking the latest and most effective endometriosis treatment thanks to nationally recognized women’s health expert, Dr. Andrew S. Cook. A gynecologist and reproductive endocrinologist who has been in practice for 21 years, Dr. Cook founded the Vital Health Institute about 10 years ago as a comprehensive center for endometriosis and pelvic pain.

Dr. Cook said people who have visited him from around the world with endometriosis have on average been through three surgeries before they come to him. After about 10 years of follow up, a little more than half of his patients have gotten better, with an estimated 84 percent not needing surgery again, according to Dr. Cook.

“Part of finding a good physician is one that will be open minded and will talk with the patient and is OK saying I’m not sure, let’s look around and find someone that does work,” he said. “You don’t have to know everything, but be willing to know it and admit it to the patient.”

Peggy first met Dr. Cook as a patient visiting for pain management having already been through many surgeries. She has referred him to all the women she has counseled and met suffering with endometriosis.

“Peggy and Roy are amazing people. Peggy is someone who has been through a lot, a lot more than anyone knows, and it just inspires me how she’s always out there saying how she wants to help out other people.” Dr. Cook said.

He said even if a patient of his isn’t staying at the Endo Inn but Peggy and Roy think this person needs someone to talk to, they’ll stop by and see them in the hospital.

Dr. Cook’s website is one of the many sources women use to find out about the Endo Inn and he doesn’t hesitate to refer patients to Roy and Peggy in return.

“They are people of modest means that have done everything they can to help inspire other people in a situation that has not been good over the years,” he said.

Dr. Cook said the biggest reason there is so little literature on endometriosis is because it’s a complex disease that needs to be a specialty.

“We wouldn’t have family practioners doing heart surgery. They just haven’t been taught. Specialists are trying to treat it like a cancer. It won’t kill the patient, but it’s a tumor that until removed will grow and cause problems,” he said. “One half is the surgical treatment and the other half is integrative approach. It does include Western medicine but also the epigenetics on gene regulation plus lifestyle changes. Its complex and the range of conditions and range of philosophy make it one of the most difficult diseases out there.”

His recommendation for women suffering with endometriosis is to number one, trust your body.

“There is a lot of invalidation going on out there and that is where it doesn’t matter if the person is wearing a white coat, trust your gut feeling and educate yourself and persist. I think it’s about being a smart consumer because your health is the most important thing,” he said.

Looking to the future, Dr. Cook said he is hopeful that within the next five years endometriosis will become a specialty and that a blood test that can diagnose the disease will become available.

Also looking into the future, Peggy and Roy have some plans and ideas of their own.

In addition to dreaming about one day adding on to their home in order to accommodate more guests, Peggy said in the past six months the idea of writing a book has become close to her heart.

“I want to write a book about my life starting in South Dakota and dealing with doctors and growing up,” she said. “I want to write something from the patient’s point of view and what I’ve gone through and some advice and perks to give.”

Sitting in the living room is a clock Peggy bought in 1976 from Macy’s that has been with her almost her entire adult life.

“I just think, if that clock could talk. So that is what I want the title of my book to be because it’s still ticking and so am I. Everything works when you work at it,” she said.

Last year a daily newspaper put the Endo Inn on the front page when they found out Peggy and Roy were to have their 100th guest and Comcast featured a segment on TV. A county supervisor saw the story and had Peggy nominated for the American Red Cross 2011 Community Heroes Act of Kindness and Philanthropy award.

“I felt honored just being nominated and then I forgot about it until the Red Cross called and said I had won, so I got a great award,” Peggy said.

When asked how she responds to being called a hero, Peggy said she feels so overwhelmed and speechless.

“I think, not me, a hero is someone who rescues someone from a burning house, but I do feel so grateful and so happy, there are no words to express how much that means,” she said.

After all the people who have come and gone through the Endo Inn, Peggy said the hardest part is still parting with each guest after their stay.

“It is very sad. We get through it but we don’t say goodbye. We say so long until we hear from you. And we stay in touch - it’s really important,” Peggy said.

She said some have come back to visit since their stay and in 2006 she and Roy decided to meet up with a handful of guests that came from the New York and Pennsylvania area in Canada where they all met up for a visit.

“It was joyous to reminisce about what they had gone through and how far they’ve come. Then on our way back we stopped to see even more friends. We just treasure the bonding part,” Peggy said.

Elizabeth Avila is one of the women who has stayed in touch with Peggy through support group meetings, which she said has been a great resource for women to learn and share information.

“Peggy has helped so many people. She is sick as well and no matter what, she doesn’t see it that way. She puts everyone before her and has a huge heart,” Avila said. “I know she wishes back in the day when she had everything done she had someone there for her. She wants to help others avoid making the same mistakes and provide more access to the resources available now.”

The biggest lesson Peggy has learned after meeting so many obstacles, enjoying the ups of life and mourning the downs, is to sit and listen to herself.

“My faith is very strong. When I moved here at the age of 20 I decided I didn’t need that God stuff anymore,” she said. “Looking back I know that was a huge mistake. Coming back has been a huge, huge thing that I did. I don’t go out preaching to people but I live so my actions show how happy a person I am and how I just love helping others.”

For more information on Dr. Cook and the Vital Health Institute visit: http://www.vitalhealth.com/ and his Facebook page: Facebook.com/vitalhealth

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