Jill's Medical Travel Fund
Donation protected
Hello,
My name is Jill Rutherford and I am 34 years old. I have suffered from many health issues over the years, but the past 20 months have been the most trying. I have had several hospitalizations and 7 surgeries within that time. I have fought deadly infections, excruciating pain, and doctors telling me that they don't know how to help me.
I had a hysterectomy on September 30, 2013 and beleived that would be the last I would ever hear about my debilitating disease that they call endometriosis. About a year later, I started having the same pain that goes along with endometriosis, but thought I was imagining things. I spoke to my doctor about it and she agreed to do a laparoscopy just to take a look inside to see what was going on. On December 1, 2014, I had another laparoscopy. The results to that surgery were pretty upsetting. I found out that my body still produces endometriosis, even without having the reproductive organs (fallopian tubes, ovaries, uterus) that produce the endometriosis. Once I had my follow-up with my OB-GYN, she put me on breast cancer medicine called Femara. This drug is supposed to stop the production of estrogen by shutting the system down. That way the endometriosis should stop producing. On that day, I learned that my condition was very rare. Only about 1.7% of women suffer from this type of recurrence.
On January 1, 2015, I ended up in the emergency room, which later they admitted me. I saw several doctors during my stay, most of them told me that I would need to see my OB-GYN because they believed that my endometriosis was back on top of the intractable abdominal pain. I fought with several doctors saying that there is no way this could be possible, especially because I just had a removal surgery a month prior. After I got discharged, I did go see my female doctor again. She had the same mindset as me and thought there was no way it could possilbly be my endometriois. I had a lot of testing done that included imaging, labs, colonoscopies, seeing different specialists, finding a pain doctor, therapeutic treatment, several ER visits, and more hospitilizations. In March, she decided that she was going to do another surgery. One where she believed she would be able to see more deep seeded endometriosis.
On April 20, 2015 I had the Davinci Firefly procedure. I was convinced that nothing was going to be found and I would be living without an answer. That surgery shows that I failed all treatment. The endometriosis came back and there was about 80% more endometriosis growth, compared to what was found in December.
My follow up appoinment came up, and it was a very emotional, tearful appointment. I went from being 1.7% of women to 0%-.005% of women. Those are not great odds. I have failed all treatments and learned that I will most likely be sick and in excruciating pain for the rest of my life. My doctor, who is absolutely amazing, has no more good ideas. She doesn't know why my endometriosis keeps coming back, she doesn't know why I keep getting fevers, and she doesn't know why my white cell count keeps skyrocketing. She told me how she reached out to several of her colleagues and none of them have ever seen anything like this. She says we now need to work together to find a specialist that might have some sort of experience with this.
For the past few weeks this has absolutely consumed me. I could not live with the thought of me being sick and in pain for life. I am a mom and an almost wife, and I cannot do this to my family. I am the strong one and I don't ever want them to see me as weak. Yes, I have more bad days than good ones, but I can't quit looking for an answer and relief. I started searching the internet. I was seriously searching for a needle in a haystack. I emailed several specialists and either didn't get a response or got a response stating that they don't know how to help because this is a rare condition. Everthing about my research was negative. I tried keeping the positive attitude, but it was getting harder.
Finally I got a response from an endometriosis specialist. The doctor is located in Palo Alto, CA. The email still has me smiling because this is the top endometriosis and laprascopic surgeon in the United States. They told me that even though this is rare, Dr. Nezhat has seen this and has been able to help people with this condition. They wanted me to set up a consultation. This is amazing news!!! Now I need help from all of my family and friends. There is going to be quite a bit of travel involved. Travel from Illinois to California and back, then repeat. Once I get out to California, I will need a place to stay, which can also be costly. I have also found out that not all of the surgeons and assistant surgeons take my insurance, so there will also be high out of pocket costs for them. It is going to be quite costly and I just can't do it on my own.
As you all know, I am not one that asks for help often. I had a great talk with my therapist regarding this. She reminded me that I can't always do everything on my own. If any of you can help, that would be amazing! I just want to be able to live a healthy, less painful life, so I can be there for my family. Based on all of my research, this seems like this will be the only opportunity I get. If you can help at all with getting me out there, to see the one doctor, that had a positive response and has experience, that would be amazing! No amount is too little.
Thank you and much love,
Jill Rutherford
My name is Jill Rutherford and I am 34 years old. I have suffered from many health issues over the years, but the past 20 months have been the most trying. I have had several hospitalizations and 7 surgeries within that time. I have fought deadly infections, excruciating pain, and doctors telling me that they don't know how to help me.
I had a hysterectomy on September 30, 2013 and beleived that would be the last I would ever hear about my debilitating disease that they call endometriosis. About a year later, I started having the same pain that goes along with endometriosis, but thought I was imagining things. I spoke to my doctor about it and she agreed to do a laparoscopy just to take a look inside to see what was going on. On December 1, 2014, I had another laparoscopy. The results to that surgery were pretty upsetting. I found out that my body still produces endometriosis, even without having the reproductive organs (fallopian tubes, ovaries, uterus) that produce the endometriosis. Once I had my follow-up with my OB-GYN, she put me on breast cancer medicine called Femara. This drug is supposed to stop the production of estrogen by shutting the system down. That way the endometriosis should stop producing. On that day, I learned that my condition was very rare. Only about 1.7% of women suffer from this type of recurrence.
On January 1, 2015, I ended up in the emergency room, which later they admitted me. I saw several doctors during my stay, most of them told me that I would need to see my OB-GYN because they believed that my endometriosis was back on top of the intractable abdominal pain. I fought with several doctors saying that there is no way this could be possible, especially because I just had a removal surgery a month prior. After I got discharged, I did go see my female doctor again. She had the same mindset as me and thought there was no way it could possilbly be my endometriois. I had a lot of testing done that included imaging, labs, colonoscopies, seeing different specialists, finding a pain doctor, therapeutic treatment, several ER visits, and more hospitilizations. In March, she decided that she was going to do another surgery. One where she believed she would be able to see more deep seeded endometriosis.
On April 20, 2015 I had the Davinci Firefly procedure. I was convinced that nothing was going to be found and I would be living without an answer. That surgery shows that I failed all treatment. The endometriosis came back and there was about 80% more endometriosis growth, compared to what was found in December.
My follow up appoinment came up, and it was a very emotional, tearful appointment. I went from being 1.7% of women to 0%-.005% of women. Those are not great odds. I have failed all treatments and learned that I will most likely be sick and in excruciating pain for the rest of my life. My doctor, who is absolutely amazing, has no more good ideas. She doesn't know why my endometriosis keeps coming back, she doesn't know why I keep getting fevers, and she doesn't know why my white cell count keeps skyrocketing. She told me how she reached out to several of her colleagues and none of them have ever seen anything like this. She says we now need to work together to find a specialist that might have some sort of experience with this.
For the past few weeks this has absolutely consumed me. I could not live with the thought of me being sick and in pain for life. I am a mom and an almost wife, and I cannot do this to my family. I am the strong one and I don't ever want them to see me as weak. Yes, I have more bad days than good ones, but I can't quit looking for an answer and relief. I started searching the internet. I was seriously searching for a needle in a haystack. I emailed several specialists and either didn't get a response or got a response stating that they don't know how to help because this is a rare condition. Everthing about my research was negative. I tried keeping the positive attitude, but it was getting harder.
Finally I got a response from an endometriosis specialist. The doctor is located in Palo Alto, CA. The email still has me smiling because this is the top endometriosis and laprascopic surgeon in the United States. They told me that even though this is rare, Dr. Nezhat has seen this and has been able to help people with this condition. They wanted me to set up a consultation. This is amazing news!!! Now I need help from all of my family and friends. There is going to be quite a bit of travel involved. Travel from Illinois to California and back, then repeat. Once I get out to California, I will need a place to stay, which can also be costly. I have also found out that not all of the surgeons and assistant surgeons take my insurance, so there will also be high out of pocket costs for them. It is going to be quite costly and I just can't do it on my own.
As you all know, I am not one that asks for help often. I had a great talk with my therapist regarding this. She reminded me that I can't always do everything on my own. If any of you can help, that would be amazing! I just want to be able to live a healthy, less painful life, so I can be there for my family. Based on all of my research, this seems like this will be the only opportunity I get. If you can help at all with getting me out there, to see the one doctor, that had a positive response and has experience, that would be amazing! No amount is too little.
Thank you and much love,
Jill Rutherford
Organizer
Jill Rutherford
Organizer
Homer, IL