Hi,
I am looking for advice on how to proceed with my 17 year old daughter. Just yesterday, her gynecologist (who I respect), told me their was no medical value in a diagnostic laparoscopy. We are so confused on how to proceed. She is suggesting we combine hormone therapies at this point.
Brief medical history
~ age 11/12, missed days of school due to abdominal pain. I realized it was every 30 days each time even though she hadn’t started period.. Pediatrician said it was her body gearing up to start period
-around this same age IBS symptoms started
~age 13, severe abdominal pain after running in school or soccer
-around 14 started period
-IBS symptoms intensified during periods
~heavy periods with clots
~cramps that Midol doesn’t always relieve
~side pain during ovulation
~cramps start a week before period
~back pain
~bloating
1st gynecologist
-talked a few minutes then gave samples of 4 birth control pills and said try these until you find one that works
2nd gynecologist
-bloodwork
-vaginal ultrasound that showed dip in uterus and ovarian cyst
-prescribed 1st birth control, combined hormones. This made her bleed heavily a couple of weeks
-prescribed 2nd birth control, high estrogen, to stop bleeding that made her throw up all night and the next day
-prescribed 3rd birth control, low estrogen, that made her wake up nauseated most nights and some she would wake up up late night to early morning to throw up
-prescribed progestin only birth control that made her bleed 56 of the 69 days she took it
-lack of appetite and loss of ~8 pounds
-side pain has continued through all prescriptions
Dr. Steve Vasilev, MD, Gynecologist, Endometriosis Surgeon*:
The medical value here is to obtain an accurate diagnosis. An accurate diagnosis leads to better therapy and avoids therapies that may not be necessary, or harmful, if treatment is a shot in the dark with only a presumed diagnosis.
Unfortunately, with today’s state of the art, surgery is the only way to diagnose endometriosis accurately. Molecular biomarkers are in research phases but not ready for prime time. It won’t be long, but it is not today.
Here is the other point to consider. Surgery for diagnosis has a significant chance of also becoming a treatment intervention. About two-thirds of girls in their teens with chronic pain or dysmenorrhea are found to have endometriosis at the time of surgery. And about one-third of these girls, have moderate to severe disease already. An expert endo excision of significant disease may help not only to relieve pain but also to forestall fertility issues if the disease progresses unchecked into the 20s and early 30s.
First, the surgery itself can remove and help keep the endo away, possibly forever or at least for many years. Second, you have a better starting point knowing what is going on. This is not an exact science and should be highly individualized with a decision made after all risks and benefits are considered. But watching, waiting and guessing about therapies is old-school in many cases and may not be the best approach.
Assuming there is probable endo present, how does one know if there is a lot of disease or not at this time, before surgery? It is not possible but one can get some indication with imaging. While an ultrasound is “ok”, an MRI may help find endometriomas (blood filled cysts in the ovaries due to endo) or more advanced disease more accurately. BUT, if imaging is negative, it still does not rule out endo. It merely helps rule out awful disease and helps plan the surgical strategy. Because of this, a generalist is not the right person to operate to “find out”, because if this turns into a endo excision therapuetic surgery most general gynecologists have a limited skill base to remove it completely and meticulously while avoiding complications with surrounding organs and preserving fertility.
The surgery is not without some risk, but minimally invasive surgery in skilled hands leads to rapid healing and a diagnosis at the very least. The excision, if necessary, is a significant cornerstone of treatment. There is debate about laparoscopy vs robotic assisted laparoscopy but in this surgeon’s strong opinion, in this type of situation, the latter may be a better choice. It at least merits due diligence to decide which way to go and with what surgeon.
*This is not medical advice and is aimed for informational use only. Please contact the doctor’s office or consult with your doctor for any medical questions.