Pelvic Congestion Syndrome in Teen

[Abby22]

I am a 15 year old female with left sided hip pain that I have had for about 7 months. The pain gets worst with any sort of activity such as walking, going up a lot of stairs and sitting for long periods of time. They found a large hemmoragic ovarian cyst on an ultrasound in the first month that I had the pain, it was treated with birth control for a while but the pain proceeded so they removed the cyst with a laparoscopy. I still continue the birth control today to prevent other cysts from forming. However, the pain still continued so they did blood work and an x-ray which turned up normal. The next thing that got done was an MRI which has now puzzled doctors. The MRI shows enlarged blood vessels around the uterus which are pressing against a sciatic nerve on the left side causing chronic pain. These blood vessels are going to be looked at closer in an ultrasound soon. This diagnoses me with Pelvic Congestion Syndrome. The problem is that the doctors have only ever seen this in older women who have had multiple children and the treatment they normally use is a hysterectomy. Since they cannot do that with me they have to look into who can seal the veins so that they do not press against the nerve. None of the paediatric doctors have ever done the procedure because they haven't seen it in teens and the gynacologists have done it but not in teens either and usually do a hysterectomy because they are older women. So my question is: Has anyone else known someone as young as me with this same problem and what was their treatment.    

Thanks

[Lisa Stone]

I do not know of anyone that has been as young as you with this problem, but I too have pelvis congestion syndrome. Pelvic Congestion Syndrome can usually be treated by a procedure called “transcatheter pelvic vein embolization.”  I am booked to have this surgery in 2 weeks. Embolization involves blocking the blood flow in the problematic vein(s), allowing shrinkage and relief of symptoms. An Interventional Radiologist does this procedure - have your doctor refer you to an Interventional Radiologist. I spent 15 years going from doctor to doctor, gynecologist to gynecologist, none whom knew about this, and if they did, didn't know how to treat it. Up until 2 or 3 years ago they were giving women hysterectomy's for this - which doesn't get rid of the problem by the way.  Here's a link that will provide you with more information. Good luck!

[OrangeOC53]

Hi, my name is Alyssa and I am expereincing similar symptoms, but they won't diagnose me with PCS because I have never had children. Frustating this pain isn't it?!I hope you get answers and get cured!