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

[KaivenKelvin]

I am 17, Ftm male, and was diagnosed at 16 with PCS. I've already gone through an MRI as well as ultra sounds and blood tests. The last time I was able to speak with my doctor she had told me she had never seen someone of my age with it either. Also stating I may have Nutcracker Syndrome. The options treatment wise she initially gave me were a hysterectomy followed by vein embolization. Even though hysterectomies are looked down upon, especially in someone my age, I am hoping to push for it for gender affirmation. They gave me an increased dosage of progesterone to attempt to sate the bleeding and pain. Initially I had awful pain but no bleeding, but in the past month it has swapped. I have yet to receive any word of what my OBGYN and the pelvic surgeon have decided. I do not currently know how many organs have backed up veins, however I can assume it's more than just the uterus. I am with you in the confusion of being this age and getting diagnosed with something like this. I wish you the best and hope they can find the best regulatory treatment for you.

[Jessicamccall68]

My 12 year old daughter was just diagnosed with pelvic congestion syndrome. I just found out today and have no idea what to expect. If you have learned anything else I would be so greatful to hear it.

[Angela1266]

I beg you to go see a vascular interventional radiologist. You are too young for a hysterectomy. You need a to be able to make the choice if you want a family in the future. If you go see an experienced, vascular interventional radiologist ( one who has treated this before ) you may be able to get a vein embolization. I just had it two days ago. Still early to tell but stating to feel better already. Check with your dr but from what I know, it doesn't affect you fertility. Way better chance than removing all your girly parts, leaving you no options. This is minimally invasive and worse case, you do hysto later if need be. Really. Listen to me. I saw 39 drs before getting diagnosed, spent 18 months in pain, and put my life on hold. Please take my advice.what would it hurt??

[lymeball]

OMG Abby, I went through the same thing, but it wasn't utill I was trying to have children only to find out that it was extremely difficult to get pregnant did I seek help.  Doctors were puzzled with my condition as well.  I was sent home will all tests coming up normal.  I had to find more answers so I did my own research and demanded I get check for something called Nutcracker Syndrome.  I ended up having this condition which causes secondary pelvic congestion.  I just had major surgery with Dr. Ralf Dilley in San Diego, Ca to correct this problem.  Nutcracker Syndrome is when your left renal vein is compressed by your abdominal aorta and superior mesenteric artery not allowing blood to flow through to the heart correctly on your left side, therefore, the blood finds an alternate route sending it downward towards the pelvic region.  You must demand you get an MRI on your kidneys, not just the pelvic as most doctors to which really gets me mad!!!!  I hope you will get this message as it was so long ago that you wrote your question...

[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!

[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!