My Journey to Finding Out I Had Pelvic Congestion Syndrome

Just like everybody else at the start of March 2020, I thought I would enjoy having time to myself to work on projects and do a lot of self development.

Unfortunately, one month in- my body had other plans for me.

I started to get random bursts of pains in all of my reproductive organs which was more then a bit concerning. But like many others wanting to avoid the clinic in the middle of a pandemic, I put it off as normal period pains and tried to go on with my life.

The pain continued on and off for close to two months before I only chose to finally go to the doctor after I was chosen for another cycle of egg donation. My fears were that my pain may have been caused by a complication from the first egg donation I did back in 2019.

Of course, I didn't know where to start so I went to my regular physician who referred me to a gynecologist with a long wait list. Another three weeks of pain go by and the struggle of having to convince the receptionist that this issue could not be taken care of in a virtual visit.

The appointment finally came around and I thought it was finally time for some answers.

I showed up to the clinic and the gynecologist walked in with a gushing, half-closed black eye which definitely made me doubt my confidence in her finding an answer. I mean, how can you find a problem when you can only see with one eye!

With no obvious diagnosis in sight, she gave me the okay to move forward with my egg donation and scheduled me an intravaginal ultrasound to confirm her suspicions that it may just be ovarian cysts.

If you haven't had an intravaginal ultrasound, its as unpleasant as it sounds especially when you're in a lot of pain to begin with. Luckily (not sure that's the word to use), I was already used to this procedure since it plays a vital part in an egg donation cycle.

She also thought that it could just be a bacteria problem and that some antibiotics may help. Unfortunately she prescribed them before the results of the blood tests even came back. That was not the problem and the antibiotics made me miserable.

My ultrasound showed that there was a number of cysts that could have been the cause of the pain, and if you didn't know, there is no easy cure for them. I was told to wait 4-6 weeks for them to go away, to finish the antibiotics, and that I should start to feel better in no time.

Weeks passed and the pain only got worse which led to me seek another gynecologist (without a black eye) for a second opinion. More ultrasounds later, and still nothing to be found. I even traveled to Mayo Clinic in Rochester for a third opinion. All I got was that I had a tight pelvis which may be contributing to my pain so they sent me to physical therapy, FOR MY PELVIC MUSCLES!

I tried one session, and knew right then that no amount of yoga moves would be the answer.

The pain was unbearable, I tried everything for it. Ice, heat, massage shocking devices, even hanging upside down.

One day it was so bad that I ended up at the hospital, and even their meds could only get me from a 10 to a 6 on the pain scale.

At this point it was time to check out any other organs in that general area which meant lots of tests and CT scans.

Still nothing.

I was at the doctors basically every week. Getting more desperate every day.

After months of pain, I even quit my job because I couldn't do anything else but lay flat in bed as sitting or standing up only made the pain worse.

I was even ready to just call it and ask a doctor to take out all of my reproductive organs.

At one point, my black eyed gynecologists mentioned that if there was no answer in the scans that an exploratory laboratory may be more helpful. She wasn't sure that this would bring results, but I was open to anything.

I was hoping for endometriosis, PCOS,

anything that would give me an explanation at least for the pain.

And yet, nothing was found but a few dilated looking veins.

My husband is a nurse so he researched and researched since the very beginning and at this point his guess was on Pelvic Congestion Syndrome.

Pelvic Congestion Syndrome is a condition that causes chronic pelvic pain caused by your pelvic veins being compressed and not allowing proper blood flow to the area. Eventually the blood builds up and causes the pain.

An old people thing apparently. And a problem for a vascular doctor instead.

Without a referral, I managed to squeeze my way onto a vascular doctors schedule before the new year. I needed a doctor that I could convince to go into surgery again for a venogram to confirm what we thought it was. The only thing standing between me and that procedure was one more CT of my veins specifically to see how the blood was actually flowing.

It proved that my left pelvic vein was slightly compressed and contributing to my pain. Not enough proof for my doctor to want to do surgery on me but she agreed to go in and take a look.

The solution to pelvic congestion syndrome is to open up the veins using stents in order to allow the blood to flow properly. My doctor made sure to tell me over and over again that she did not want to put a stent into a semi healthy young women unless the vein was compressed past a certain point. Stents could cause complications with pregnancies, would require me to be put on blood thinners for a long time and it would be extremely painful for 2-4 weeks following the procedure. At this point though, nothing could phase me and I just needed the procedure as soon as possible.

December 17th came and I was filled with anxiety because I needed this to be the answer.

I was starved, shaved, pumped with drugs, and was finally ready for surgery.

When I woke up from surgery, I was in a world of pain but happier then ever when I heard the news.

Not only had the left vein been compressed enough to need a stent, but the right one was also compressed excessively and received a stent as well.

I am now almost a month post up and happy to report that the original pain in my reproductive organs is now gone.

Not without some sacrifice though as I have been in a world of new pain from the surgery that has yet to leave me.

But here's hoping that I'm staring recovery right in the face and will be freed soon.