my husband and I after my 4th endometriosis surgery. This time they had to remove a cyst bigger than a softball, my left ovary, and large amounts of "endo" which had once again fused several of my organs together.
My name is Laura, and I battle daily with an incurable, debilitating disease called Endometriosis. I am in daily debilitating pain, on a myriad of heavy pain killers, and am now unable to work. Endometriosis is caused when the tissue that lines the uteruen walls gets outside the uterus and attaches itself to other places in the abdominal cavity. Endometriosis reacts differently in each individual. One person can have mass amount of "endo" and not suffer at all, while the next can have a minute amount and be in never ending pain. There are a lot of misconceptions around endometriosis, and unfortunatley I have come across all of them. Getting pregnant, getting a hysterectomy, or going on continuous birth control does not cure endometriosis. I started continuous birth control when I was 13 years old because menstruation pain was so bad I would pass out. Doctors would tell me it was normal and that I would grow out of it, and then eventually that I was imagining the pain was worse than it was. It took me until I was 22 years old and several physicians before I found someone who actually listened to me. The only way endometriosis can be diagnosed is through surgery, so I went under, and sure enough I had endometriosis. At this point in my life it was affecting my digestion and bowel, along with debilitating pain. Only 1.5 months after the surgery the pain was back, and this time it was worse. I went on birth control after birth control, trying to find the one that would work for me. None worked. None ever worked.
This is how most of my time is spent now, in bed, cut off from the world. Just to spend some time socializing I have to take heavy pain killers and undoubtedly suffer afterwards from increased pain.
I suffered from deep depression, I job-jumped (it doesn't make the boss very happy when you have 3 or so sick days a month). I could count on being pretty much useless for at least a week every month. This forced me to break out on my own and start a new business. This has been a difficult blessing, because without sick leave, regular pay checks, and benefits it can make for an uncertain lifestyle when you are ill. But my clients are amazing, and the flexibility has allowed me to be able to work up until now, whereas if I still worked a 9-5 I would have likely been unable to work for a year or so by now. I've made a career out of working with children with special needs and their families. I Am a caregiver. My job and my passions are to care for those who need it. It is incredibly difficult for me to ask for help. But I know that if I'm not healthy, I can't help anyone. So, we are focusing on my health. Unfortunately my pain has now something I suffer from daily, while some women with endometriosis only have pain around menstruation. I have now undergone 4 surgeries for endometriosis, and each time it is worse and worse. I am now in constant, daily, debilitating pain from this disease. I take a myriad of heavy doses of opiates along with medical cannabis just to make it through the day. I have nerve damage and pelvic floor dysfunction, and this has disturbed the function of my bladder and bowel. There is a possibility I suffer from other internal dysfunctions because of the endometriosis, but they have been unable to get clear results as the testing has been to painful to bear. We wanted to try for a family, and after years of frustration we have come to terms that I cannot conceive, which can be a side-effect of "endo". We even went to a fertility doctor who gave us the odds of an 18% chance of success. Risking $10,000 on an 18% chance made no sense, even if we had the money. I do physiotherapy, meditate, seek and use alternative medicines--I am doing everything I can, and it doesn't matter. I still end up in the emergency room, curled up in a ball sobbing. I simply can't take it anymore.
In Canada the physicians burn off the endometriosis they find with a lazer. The problem is, there is still diseased tissue left that the endo: "infiltrated" if you will. This diseased tissue spreads the disease, working much like a cancer. For example, I had surgery where they supposedly removed all of the endo in October 2012. By May 2013 I was very ill again, and my surgery in August showed endo so bad it had once again fused my organs, and literally choked the life out of my left ovary. Less than a year. I have been on wait lists for specialists in Canada, but wait times are 2 or more years. Even if the Canadian doctors were able to preform the same grade of surgery the CEC does, I couldn't wait that long. I have suffered for almost 2 decades, and I simply can't do it anymore.
I am in the white. I used to be an active athlete, now due to pain I spend most of my time on the couch.
So my husband and I have decided to go to Atlanta to seek treatment. They have a Center for Endometriosis Care (http://centerforendo.com) or CEC, run by world-renowned and sought out physicians. They offer full excision, by cutting out the endo and diseased tissue. Upon examination of my records, the physician believes he can reduce my pain long-term by at least 83%. My life has been on stand-by for as long as I can remember, always waiting for the pain to hit. The last 4 years I have been engulfed in constant pain, mental distress, and the heartache of infertility. My husband has had to be our constant bread-winner, because I have gone sometimes months without being able to work. On the outside I am a smart, funny and capable woman, but truthfully I am ruled by an invisible illness. There is no cure (yet) for endometriosis, but there is treatment, and I can no longer settle for less than the best. I simply can't keep having surgery after surgery. I am begging for help.
In the end this is likely to meet or exceed $40,000.00 Canadian. My father is taking out a loan against his home so I can go because I am now completely unable to work and in so much pain we can't wait any longer. My surgery is scheduled for June 4th of this year. Please help, and if you can't, good vibes and healing thoughts along with sharing my story are greatly appreciated.
Thank you. Much love,
Laura & Brad
my husband and I with our pups, getting ready for an ugly Christmas sweater party. My husbands support and love gets me through each day.
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