Ultrasound reveals nothing, but symptons are there; Fibroid Tumors Hereditary?

Dear Dr. Junco:

I have a few questions to ask you. I am 38 years old; my mother started having problems about my age and then at the age of 41 was diagnosed with fibroid tumors and had a complete hysterectomy (with removal of ovaries). My mother’s sister and their mom all had fibroid tumors. Is it hereditary?

I have recently started having the same symptoms she had prior to her diagnosis. Since 1996 (after the birth of my last child), my periods last about a week (use to be 4-5 days), severe cramping 1st/2nd day of flow, small blood clots.

In August 2003, during my pap smear exam, my doctor discovered a pinky fingernail size cyst on the right side of my vaginal wall. She told me to monitor it.

Then in November 2003, my period seemed normal (as normal as they’ve been since 1996) – I flowed for 3 days, then 1 day no flow– then the abnormal part happened on the 5th day — extreme heavy flow with severe cramping. I went through 3 maxi pads in 1 hour. Then finally, a blood clot passed about the size of my thumb. I felt twinges/sharp shooting pain periodically throughout the week of flow on my right side. My period lasted 10 days and it was red the whole time until the 10th day when it lightened up in color and flow. I called the Army clinic (my husband is in the Army in Germany) to talk to the doctor. She scheduled me a pelvic and transvaginal ultrasound to see if I had any fibroid tumors.

December 12, 2003, I had a pretty normal menstrual cycle – flowed for 5 days with small twinges/pain on left side. Passed very tiny blood clots; had bad cramping the first day.

Yesterday (12/22/03) I had the ultrasound procedure done. I went back to the doctor after the radiologist read the ultrasound. The findings were none. They didn’t even see the cyst, but I did mention it to the technician who did the ultra sound and she said that sometimes you cannot see the cysts in the vaginal walls. The diagnosis did say that my endometrium was thick and to return in 6 weeks for another ultrasound. What does that mean? Will they be able to see more clearly if I have a thinner endometrium? The doctor said I had to try to schedule it closer to the start of my menstrual flow when it is thinner. Good luck with that in the Army clinic.

I still think something is wrong with me and I feel like there is some problem hiding in my body that can’t be seen.

Any suggestions? Should I request a different procedure be performed other than an ultrasound?

Ms. T

Dear Ms.T-
Fibroids are genetically associated, however not always passed on. Your sisters may have received the gene and you did not. Fibroids will show up on ultrasound, so if the test is negative you probably dont have any.
Your symptoms are classic for adenomyosis…this is uterine endometriosis (please see website section). This disease will NOT show up on most diagnostic testing, especially an ultrasound. Tissue biopsy is required to confirm the disease. Patients begin to experience very painful cycles, heavy flow, multiple/large clots and in more advanced stages an enlarged uterus. The symptoms progress with every menstrual cycle. The disease damages the uterine muscle and most gyns will eventually recommend a hysterectomy. We do not advocate that approach, but we are the only practice offering a surgical alternative with results.
Ask you doctor about adenomyosis. Good luck to you.