L. George was diagnosed when they were 25 years old. Today, at 52, they share their arduous journey with us.
L.’s Journey: This is really tough to tell, as I have suffered with this awful disease for so long. I barely used to notice my periods in high school. Then, around age 21, the pain became so unbearable, but I just thought it was normal period pain. I never believed in going to doctors or taking any kind of pharmaceutical medication for pain. My mom raised me to never take aspirin or go to the hospital, no antibiotics for the frequent ear infections and bronchial infections I seemed to get a lot growing up. It was not uncommon for me to have a high fever (over 105F) as a child and ‘sweat’ it out, after dealing with it for at least a week wrapped in thick blankets to make me sweat. I never took any aspirin, or other OTC for the pain I felt at age 21.
When I was 25, my mom was diagnosed with stage 4 ovarian cancer, and I became her primary caregiver, as she chose to do radical surgery, chemo, and radiation for nine months after her diagnosis. I watched her die when she was only 50, in severe pain, she refused to take the morphine that doctors prescribed. I thought this was normal and that pain was just something we had to go thru in life.
A few months after her death, the wedding we had planned for two years prior occurred. My period came on the morning of the wedding and I couldn’t move, so my sister in law told my maid of honor to give me Advil until I could get up. I took 8 of them and don’t remember the rest of the day. I was a virgin, and my husband forced me to have sex that night, because he ‘waited so long’ before our marriage. The pain was so bad I passed out that night and woke up in a pool of blood, while he had moved to the adjoining suite room. I wondered why women wanted to have sex so badly when it was the worst pain I ever felt in my life.
He then made an appointment to go to a doctor to see why I had to lay in bed for over a week every month, before and during my heavy periods. The doctor I went to was from my hometown here, and friends with my parents, so I trusted him. He performed an exam, my first pap, where 4 nurses had to hold me down while he did the smear and I screamed bloody murder heard through the entire practice. I wondered why any sane woman would want to go to this kind of doctor who forces metal objects in areas that hurt so badly even when the patient is screaming.
He scheduled a laparoscopy to take photos and determine what ‘stage’ the endo was at. This was all new to me, all I wanted was to live with little to no pain. This was 1994 and no internet, not many research tools, I felt like I was alone with this disease. If my mom could make it with no pain meds and stage 4 cancer, why did I have to be such a wimp? The laparoscopy showed stage 4 endo, with chocolate cysts rampant, one the size of a grapefruit on my ovary, attaching my intestines together like a spider web, on my liver, lungs, abdominal floor, ‘too many vital organs involved’ for the doctor to remove anything. He said it was the worst he had ever seen (which seems a common statement for doctors to make in order to coerce patients into trying leuprolide because of the kickbacks involved $$).
He said there was a fairly new treatment for endometriosis that he suggested I try. Guess what? Leuprolide injections, for 6 months. He prescribed no pain meds but suggested I take Advil for the pain. The injections were really tough. After the first one my period stopped, which was nice, but the cramping still continued. The hot flashes, memory loss, shakiness, aching joints, and overall feeling like I got hit with a baseball bat repeatedly on my lower back and shoulders. I went to the local health food store that my mom used to do all her shopping at and asked the nutritionist consultant for ideas. I left with bags full of supplements and herbs that supposedly help with sleeping and with pain. I was hopeful!
After the injections were finished, I noticed that facial and body hair began growing in places that I never had it before. It was dark, coarse hair on my chest and face, even on my back. I felt ugly and like a werewolf. Two months after stopping leuprolide injections, I found out I was pregnant! What a miracle! At 14 weeks, we announced it and had a baby shower, it was a boy who we called Darien. At 16 weeks, I went in for a checkup and the baby’s heart had stopped bleeding. I miscarried right there in the doctor’s office after the exam. My husband saw the baby come out in a bucket.
The doctor encouraged us that since we were still young, we had a lot of chances to conceive and not to worry. My husband had a 4 -year old little girl who had grown attached to me and moved in with us after our wedding. I was a teacher, and had just graduated with my master’s degree in educational psychology, but currently was working with troubled youth as a social worker. It had gotten too hard to work with kindergarteners in my condition all day, so I felt that being a school psychologist was a lot less taxing on the body, so I got my first school counseling job at her school. when she was in first grade. I also taught piano lessons and swimming lessons as a lifeguard at the local pool here in Hawaii in my hometown. It was exciting to start the career I had dreamed of and planned for.
It became harder to wake up early and get to the school at dawn when my last job was meeting with clients around my schedule, usually in the afternoons and evenings. The last school counselor who I worked with there was moved to a different public school after he was caught molesting children in our office….by me. Lots of tension around that time as threats were being made to me. One has to practically murder someone to be fired from the public school system here in Hawaii. Everyone I knew had stories of child abuse by school staff with the students.
I wanted to homeschool my stepdaughter immediately, but my husband had recently lost his job as an HVAC repairman so we needed the income. We decided to move to Colorado where my mom’s sister, a nurse, lived. She reminded me a lot of my mom and the cost of living was so much less there. We took our daughter with us. After a year of trying over twenty different naturopath ‘remedies’ from the health food store, there was no change. I stopped taking them all. In Colorado, we saw a fertility specialist, and she helped us do a ‘fertility workup’ to have children. We had tried unsuccesfully for two years since my diagnosis, after the miscarriage, and she was very hopeful. The clomid caused awful side effects, similar to leuprolide. I would drive and at a stoplight, suddenly rip off all my clothes on the top except my bra, the hot flashing was so bad. My aunt encouraged me to keep taking the medicine and that I would be pregnant again soon. I hated TTC. It was so painful and horrible. I couldn’t imagine this being the way I had to live, but the doctor said that once I had one baby, that the next ones would take the endo pain away. Each time we TTC I thought only of having a baby to stop the pain. I took a lot of Advil before we went to bed so that the pain would be dulled and many times I knocked unconscious because of the severe pain with TTC.
I was homeschooling my adorable stepdaughter. She learned to make my hot water bottle, to pray for me with her tiny hand on my tummy, to play quietly in her room while I slept after a rough night. Then my husband lost his job and I had to take whatever job was available. School counselors and psychologists were not common for schools as in Hawaii. I started work as a preschool teacher again so at least my stepdaughter could be with me at the same private school where she could go for free if I worked there. I had so many sick days after 7 months at the private school, I had to quit. It was hard to stay healthy working with a bunch of little ones who came to school sick. I got the flu, bronchitis, larengitis, and even passed out a few times in front of the students from endo pain. I was avoiding medication like the plague.
My husband began working as an HVAC at a hotel, and I didn’t have to work full time anymore. I worked as a social worker from home with a great agency that I could set my own hours, and as long as the clients were met with weekly, my boss didn’t care where I was. She had endometriosis too, so it was a great situation for a few years. The fertility treatments didn’t work after three rounds of IVF. I went to another doctor who didn’t do anything but a pap smear where i screamed my head off again. Then a friend told me about a Korean gyn doctor who helped endometriosis patients through nutrition. I went to see her and she helped me the most after five years of seeing a total of nine doctors who were useless.
She put me on an endo diet, after diagnosing me with candida. I actually began running a few miles every other day on this diet and only ate meat and vegetables, no fruit or grains. I felt really great taking Nystatin, an anti-fungal that killed the bad yeast in my system, for a year. We became foster parents, since it seemed like having a baby wasn’t part of the plan for us. We had four children younger than our stepdaughter in the home and it was really wild, but I was healthy enough to handle it with my system cleaned out and the pain was minimal. My allergies went away. I was so happy!
We took a trip to Vegas with some friends who came to visit from Hawaii, and my husband fell in love with a huge, 7000-square foot home that, back in 2000, only cost $300k, custom built in Vegas. Our home in Colorado was only half the price but 1/4 the size and we were tired of being cold in the winter. I refused to drive in snow, it was so scary! He got a job at the hotels right away, and the foster children who lived with us were able to reunite with bio parents. We took my stepdaughter, now age 11, with us. I homeschooled her again, and we decided to become foster parents again since we had a lot of space. Our home was completed and it had 9 bedrooms and 5 bathrooms, so we got licensed and prepared for our first children to arrive. I got hired by the same agency who licensed us, as a placement worker for foster care children, a social work position. One little boy on my caseload had an especially rough life, so we decided to have him move in with us. Nevada State changed their laws and only allowed two children with high care needs, such as this little boy, per home. It was frustrating, knowing the need was great and we had plenty of room.
We decided to move closer to the ocean where it wasn’t so hot. My husband lost his job again after 9-11, the hotels cut down the workers and he was one of them. The new doctor I had in Vegas refused to prescribe the Nystatin that had worked so well for me. I had been in two car accidents there and had ruptured discs in my spine. The pain medication they prescribed me, Norco, seemed to help my endo pain a lot too. It all came back after there was no anti-candida drug. The new doctor in San Diego said that I should try hormones again, like leuprolide. I hated the side effects so much and refused. He pressured me so I decided to switch doctors.
We got re-licensed for foster care in California and took our little boy and my stepdaughter with us from Vegas. She was in high school by this time, and he was 7 years old. They got along well, but he had a lot of issues to deal with, to say the least. He had attempted suicide in a few of his past ten foster care placements and was on four different anti-psychotic drugs. He stole from us, he peed and pooped in the drawers of his room, and he lied about everything. It was stressful not knowing what he would do next. We were licensed to have a total of three foster children besides our two children in the home. San Diego filled us up immediately as their rules were different than Vegas. There was a lot of child trafficking in the foster care system in Vegas, I discovered. Kids went missing all the time, and the system seemed to be part of it. San Diego at least kept the kids counted for.
I got a job as a social worker, overseeing foster care placements, while my husband stayed home to take care of all 5 kids. I was starting to feel a lot of pain again. I went to a new doctor, since my new medical was only Kaiser, and she felt the grapefruit-sized cyst on my ovary again, confirmed by ultrasound. She ordered a laparoscopy so she could take a biopsy and make sure it wasn’t cancerous. I agreed. I woke up from the surgery and she told me that the endo lesions were stage 4 and that she had to remove my whole right ovary because the cyst was so big. The biopsy came back negative for cancer.
I was so broken that she had taken the ovary without asking, for nothing. 5 days after the laparoscopy I began to get a high fever and a lot of pain and bloating. We picked up all the kids from school early and my step daughter drove me to the ER at the same hospital where the surgery was done. It was packed, on a weekend, and the ibuprophen the doc prescribed had lowered my fever. They said they had to wait until they could get an accurate reading before I could be seen, so I waited about 6 hours, it was horrible. They put me in a supply closet on a cot, since the ER rooms were all full. I couldn’t make it to the bathroom and it seemed all my intestines were going nuts, emptying out every few minutes, so my stepdaughter got me a dishpan to sit in so I could stay in the room. She went out to try and hail down a doctor every hour, but I waited 21 hours before anyone actually saw me.
They admitted me right away, but the delay was because the doctor who did the surgery went to the Bahamas and they lost my file. I almost died from a staph infection due to her negligence. They put me on 4 different antibiotics and a morphine drip, but the shared room did not allow me to get any rest. The women who were getting hysts came in every few days and blasted the TV so I couldn’t sleep. I was in and out of consciousness. They finally decided to push a tube thru my hip and drain out the infectious fluid which had built up from the staph infection. When the specialist put the tube in, so much had built up that it squirted everywhere on him and the nurses. They attached a bag to the tube, but drained out about a gallon of the staph fluid. My swollen stomach finally decreased.
I was in the hospital for 2 weeks trying to recover. The antibiotics finally worked, but the pain was awful. The morphine helped me sleep and took away the pain. I began to think it wasn’t so bad after all, that maybe I needed it to function because I felt so much better with something that finally tackled the cancer-level pain I had. The doctor returned from the Bahamas and apologized to me for the complications. She said that leuprolide was her recommendation to make sure the cysts didn’t come back. I told her I had taken 6 months of it already and that I did NOT ever want to do that again. I read about a woman in Vegas who sued the pharma company for her horrible bone loss and tooth loss after Lupron, the name brand for leuprolide at the time. It is also now called Prostap, Zolodex, and Orlissa. She said that cancer patients were prescribed this as a form of chemotherapy and I definitely did not want it ever again.
When I finally was taking a nap, I heard someone by my bed and thought I was dreaming. Opening my eye, I noticed it was my doctor, messing with my IV. I woke up and she looked startled. I asked her if she was giving me more morphine and she looked embarrassed, so I looked at the drip bag she was holding. It was leuprolide!! she was trying to sneak it in my IV !! I was so angry but too weak to do anything else than tell her again that I did NOT consent to that drug and would report her if she didn’t leave my room. Later, I read that doctors get kickbacks up to $500 per injection of leuprolide they prescribe, from big pharma, so they really pushed as many patients as possible to do it!
I joined a few online groups to warn other women who didn’t know about the awful side effects of this chemo drug and only got teased. It was frustrating. One of my endo friends, Jenn, also lived in Cali and she had 14 surgeries done by Dr. Redwine in Oregon. She said it made the pain better for a while but the excision surgery did not heal by any means. It would take the pain away for a while, but she was on a Fentanyl patch that helped to control the pain for 72 hours at a time. No pills, just a little sticker so it wouldn’t damage the intestinal tract or liver. I thought that was a great option for me.
In the meantime, my husband had become abusive to the foster children at home. He had never shown this side of himself to me in all the 9 years we were married. It seemed like a different person. We couldn’t sell the home in Vegas so we went thru foreclosure. He wouldn’t stop buying cars, and all five of them got reposessed after my hospitalization because the small agency I worked for laid me off since I needed several months of recovery time. In Cali, you cannot do foster care unless at least one adult is employed, so the children we had went home to grandparents who were getting licensed to care for them, right after I was in the hospital. We had to file for bankruptcy. I only knew that I had to get my stepdaughter, who I had adopted, and our son, who we adopted a few months after I got out of the hospital, out of Cali and away from him. I
put in applications to work as a school counselor in Hawaii, where I had a lot more connections. I took both kids with me. We were homeless for a while until after I got paid for working as a school counselor for six weeks. It was really tough. However, I decided to see an RE doctors who could only recommended CBC pills to stop the endo pain. I tried each one he prescribed for at least a month, and went through 14 different varieties , all with horrible side effects, before deciding that CBC was not for me.
I went to my family doctor and he gave me a month supply of Norco, 6 per day, to help stop the pain. I could finally function better at work. Then the next year, the state switched me to a military base public school during the Afghanistan deployments in 2004. Kids were traumatized; we had 2 6th graders commit suicide at the beginning of the year at that crazy school. About 2 months working there as a school psychologist, one of the kids who was a high level autistic 3rd grader attacked me out of the blue, tearing a ligament in my wrist. I was laid out for 6 weeks, in so much pain and PTSD from my abusive ex husband. I had filed for divorce as soon as I saved money from working for a lawyer. The main thing is that the kids were safely away from him. I was their only source of support as he refused to work.
The family doctor referred me to a lot of specialists, to figure out why my sleeping and muscle spasms were so bad. The neurologist ordered a sleep test for me, before I started taking any more medication. The findings included severe bruxism, PLMD, RLS and only reaching REM stage 2 as my limbs were constantly moving. I finally had answers as to why I was always so exhausted in the morning. The doctor said it was like I was doing aerobics and running a marathon all night and achy in the morning. She prescribed a muscle relaxer and sleep inducer. My family doctor saw how much Norco was required for me to have pain relief, so he switched me over to the fentanyl patch in 2006. The level of pain I had by this time was off the chart, so it took about 100mcg to help me sleep without waking up in pain, I was wearing a wrist brace for a year after getting attacked.
I am now happily remarried for 9 years, the children are grown and my stepdaughter moved out of my house when she went to college at age 16. She said she was so tired of taking care of me and being around ‘sick people’ that she moved back in with her abusive father in San Diego at age 20. I haven’t heard from her since 2011. My son still lives with us, my current husband adopted him and we have been TTC for 9 years with no success.
In 2007 I became totally disabled and have been unable to work. I spend most of my days in bed. The leuprolide, long lasting effects had caused fibromyalgia in my entire body. I have been working with a nutritionist to try and wean off the fentanyl. With the new opioid laws demonizing this potent pain drug, the patients who have been successful on the patch for 14 years, like myself, are having to wean off it by the pain management doctors. I have tried to replace it with cannabis oil, Rick Simpson Oil, and other natural healing recommended by my naturopath with no success.
We have no ‘endo specialists’ here in the islands, so my primary care doc helped me submit paper work after I became disabled, to Dr. Redwine and Dr. Cook on the mainland, to see if they could see me and do excision surgery. Most endo specialists, including these two, do not take state medical plans. My grandparents were going to pay Redwine in cash, but just knowing I had state medical insurance caused them to deny me. Dr. Cook wouldn’t see me because of my history of a staph infection with surgery.
I have literally tried everything out there in the past 30 years and did a lot of research online. It is so frustrating. I am now in perimenopause for the past two years, and it is the most pain I have felt in my life, even with the patch. The periods are much heavier, with cramping all month instead of just 2 weeks or so, plus hot flashes, overall body pain, and sleeplessness even with the sleep aids I have used successfully for 14 years.
I am not sure what to do next.
Peri can last up to 10 years, but every time I stop having a period for a few months it always comes back in full force, with huge, golf-size blood clots that feel like giving birth. I have read recent studies that equate stage 4 endo with cancer, but doctors don’t know what to do with the chronic pain patients. I am a palliative care patient and have prayed to have children my entire life, especially having my own, so that there is more chance of the disease going away all together.
My son is now 27 and has his own pain issues, so we exchange notes. He has seen everything I went through and knows exactly what to do when I am crying and in pain. He gets my hot water bottle, makes me a smoothie, gets my meds and prays. My husband does the same, as my primary caregiver. It has been a rough 30 years, and I wouldn’t wish this on anyone. It drives everyone and everything you love away from you and makes it impossible to plan in advance, as the pain can come at any time.
I am thankful that my disability has allowed me to read and write more. Working all those years while in severe pain allowed me no free time to pursue either of these favorite pastimes.
I am thankful for God sustaining me, as the life I have lived could have easily ended during my first marriage, when my husband repeatedly tried to kill me, as well as the children. It is scary to have a wonderful relationship and think you know someone for almost nine years (2 years of dating), then have their personality change drastically and become sadistic and abusive to everyone in the household.
Words of Advice: Do not consent to Lupron, leuprolide, Zolidex, Prostap, Orlissa. These drugs are very cheap to make and big pharma gives huge perks to doctors for prescribing them. Do not believe them. There are no long term studies done on these drugs. My friends and I who all got Lupron injections with horrible long-term side effects, began a support group on Facebook to help anyone who is being pressured by their doctors to take it. Some women got these injections starting at age 3 for ‘precocious puberty’ and later have lost all their teeth, from the loss of calcium this drug pulls out of the body, and the human growth homone it eliminates. I have chronic back pain because of this drug, and cant imagine anyone who has been on it for years, the awful side effects they will have later in life are unimaginable. I had all the mercury-based fillings in my teeth replaced with resin and porcelain about 2 years ago, as the mercury fumes contribute to endo growth. I had 27 of them and had no idea how dangerous they are.
The Last Word: Thank you for this web page, to share info. I wish that the amount of info available today about Endometriosis was there in 1994. I think it would have helped me understand the disease and make better choices. I am currently almost done with a book about my life, called “29 doctors”. Do not trust your doctors to have your best interest at heart. Some of them can be downright cruel. I have fired at least ten of the gyns for making statements like ‘Oh, you have endometriosis. I didn’t become a doctor to deal with you complainers all day, I became an OB to help FERTILE women who can actually have babies.’ There have been so many in 4 different states, that helped me to see, finally, that going to a doctor who won’t help with the high level of pain we experience is worse than not going at all.
If you’d like to offer any advice or words of encouragement to L. George, please leave a comment below.
I want to send a special Thank You out to L. for being brave enough to share her story with us today! You have endured so much and I am grateful you opened up and shared. It is my hope that you are able to find some form of relief; you deserve it. And beyond. Please feel free to keep us posted. Yours, Lisa.
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.