I am 30 years old and have been sick most of my life. That is something that is hard to wrap my brain around sometimes. So I just try to look to my future. Having both endometriosis and an autoimmune disease has been very hard to come terms with over the years. It was especially difficult over the years I spent going from doctor to doctor being told there was nothing wrong with me, that it was all in my head and to seek help elsewhere. But where? If I listed all the doctors I have seen since I was a young child, it would be quite a long list. I know many sick women who have been on the doctor rollercoaster. I am lucky that I have had my parents and my best friend, who is like my sister, by my side.
Diagnosing and Treating Endometriosis
I was diagnosed with endometriosis when I was 17 years old but had felt the pain of endometriosis since I was 13. I thought I wasn’t normal. All the girls I was friends with had normal periods, and they came regularly and lasted a week, mine took me out of school, and the teachers were less than understanding. I have had four laps (surgeries) for endometriosis and have been on every birth control known to woman. I have been on depo shots and had Lupron treatments. Nothing helped.
Complications Associated with Failed Endometriosis Treatments
I have a bowel-uterine fusion as well, that can reattach at any time and I now have serious bladder issues which I feel are complications from the surgeries I had. I had one surgery in 2000 while in high school, one in 2004, 2007, and one in December of 2011. The doctors now think I have interstitial cystitis (IC) or painful bladder. By whatever name it is given, it really hurts. I wasn’t getting answers from a previous surgeon who has taken on so many patients (like many physicians end up doing) so I am going to a special urology practice soon; one that has a special female treatment approach for women by women urologists. I am starting physical therapy or aqua therapy soon. I am hoping with my pain threshold and the lack of using my muscles for so long that this will be able to help me as well.
I regret having my last surgery for endometriosis because it did not go as planned. I felt awful afterwards and I think a lot of that had do with just starting to deal with an autoimmune disease. I should have weighed the risks more carefully.
Lyme Disease Too
In 2009, I was diagnosed with Lyme disease. Lyme disease affects everyone differently, and it is a disease that can hide for years until an illness or trauma brings it out, even just a stressful event.
They usually treat patients with Lyme disease with medications like doxycycline and Mepron. I have a more chronic form of Lyme disease. The Lyme disease was left untreated for years, and misdiagnosed and undiagnosed. I had such horrible GI issues (for a time, they thought I had Crohn’s or ulcerative colitis because my GI episodes would send me to the hospital regularly and sometimes even have me admitted to the hospital for a week at a time) that the Lyme antibiotics were out of the question.
I was lucky enough to find a physician who treats Lyme and also uses herbs and natural approaches. I know how some feel about that approach. I use to feel that way too actually. But this doctor opened my eyes to a world of healing; I am able to put herbal drops in my water that they use in low income third world countries to treat MRSA to treat one of my nasty co-infections known as babesia. Babesia was responsible for my night sweats and myriad of other symptoms. Yes, I got my Lyme disease from a tick bite which carry other things than just Lyme, but some people like a friend of mine got there Lyme from flea bites and are just as sick. White footed mice also carry the disease and they believe mosquito do too.
More Research Needed for Lyme Disease
The CDC has been at war with many Lyme patients for under reporting the cases of Lyme reported each year. But the CDC did recently up their yearly numbers of new Lyme cases from 300,000 to 1 million new cases. With one million new cases we are up there with AIDS but we are not getting the attention to the disease, research and patient care that we need. And I am not sure what is stopping it. I am hoping we can all come together and start shedding light on this devastating disease.
As of today, I have had three close friends infected, all from the same area I live in. My mother is very sick from Lyme disease and now my father is showing symptoms too. Lyme disease is everywhere, especially with birds now considered carriers, as a recent medical article stated. We must come together as a nation, and as citizens worldwide and start talking about the subject of Lyme disease before it is in every household.
Living with Lyme and Endometriosis
As of this month in 2015 and at the age of 30, I have a very positive outlook on my prognosis. I am making headway with my herbal treatments for my Lyme disease and its co-infections with my LLMD (Lyme Literate Medical Doctor). I definitely have less pain than I use to and I am able to drive again. There is hope with Lyme disease and Endometriosis.
I hadn’t driven a car in years, now I drive almost every other day, and I am able to help my family more. Again, I do not know where I be without my parents and my best friend.
In the near future, I am hoping to start volunteering at a near by horse rescue farm, and doing local pet care for families, as I have a great love for animals! I also want to go back to college and get a degree and start working.
These things are all possible with Lyme and Endometriosis; never give up hope as my best friend always says. It always possible.