New member - new story
Dorte NJ
I would like to introduce myself. I am 30 years old and was diagnosed
with aggressive angiomyxoma in October 2006 . About two years before
my left minor labia started growing and it was first in the summer of
2006 I went to the doctor. My labia was then app. 4 x 4 cm and I had
it removed in September 2006. A month after the surgery I got the
result of the microscopy that I had a rare form of tumor: aggressive
angiomyxoma. Then I had a MRI-scan and it shoved that the tumor was
located down through the major labia down through the perineum and in
between my sphincters.
I had to undergo different medical examinations because I have a
inflammatory bowel disease called Crohn's disease. I have had it since
I was 7 and have had several outbreaks and a operation when I was 15.
But all the years with Crohn's disease had damaged my sphincters so
much that it was impossible to operate without doing more damage. So
in august last year I underwent major stomach surgery where my entire
colon, rectum, sphincters and the aggressive angiomyxoma was removed
and an ileostomy was made. My left major labia was reconstructed using
a muscle from my upper abdomen just below the breast.
The microscopy result showed that the tumor still was there. I
underwent another surgery in January 2008 but the surgeon could not
see the tumor so it was difficult for her to be sure that the entire
tumor was removed. Well it was not. The surgeon told me that she had
been so close to the urethra as she could. So apparently the tumor is
also in that area.
There are not any aggressive angiomyxoma experts in Denmark (well I
don't even know if I am the only one with this condition in the
country) so my anal surgeon is trying to contact some doctors abroad.
I don't know where exactly maybe in the States or in the UK.
I am going to see him tomorrow so I hope he has some news. I will be
back when I know some more.
Have a nice day.
Dorte
sheba
Thank you for sharing my your story with me. Please let me know if there
is anything that I can do for your here in California. You and I have had a
very similar location and experience. I am going to see a new Doctor at
University Ca S.F. Comprehensive cancer center on June the third. I have
an appointment to see Dr. Lei Mea Chin, A Gynocological Oncologist and rare
tumor specialist. I have never seen here before so I am very excited and
nervous about what she's going to say. (You can google her)
Part of the problem with this rare tumor is that our Doctors here in the US
are not permitted to share confidential patient info. I think all of your
Doctors would benefit from having the notes and resourse that my Doctors
have here regarding my case and vis versa. ( A wish!)
I am so sorry to hear your news. I know what that feels like. My last
Surgery was in Jan 07 and I am still not healed from it. My margins in my
abdomen are still all locally postive, which as you know means that a tumor
can emurge from any of those places. It's been a difficult time, I try to
stay postive and I am currently working on a health and wellness retreat for
woman battling cancer here in Northen Ca. There will be a few different
sessions. One will be a Singing retreat and also one focusing on helpful
plants and herbs for problems dealing with digestive issues. This will be
happening sometime in Aug-Sept.
I am sending healing energy to you all!
bright blessings and thank you all so much for sharing your stories here. It
is just so helpful.
Sheba