On November 22, 2010 after over a year and a half of failed attempts to pinpoint my pain I went to Fairview Hospital for an Exploratory Laparoscopy. My Gyn/Surgeon was positive I had Endometriosis and he had intended to treat it during my Lap procedure that morning. I was so nervous I was practically having a panic attack on my way to the hospital. I remember coaxing myself while getting ready to leave. Telling myself that I just had to get through this surgery, and the 2 weeks recovery and all of the pain of the last year and six months would be behind me. After more than 6 “normal” ultrasounds (looking for cysts) and nearly 15 UAs (looking for UTIs or other bladder infections) I was almost excited about this procedure.
When I woke up in recovery the surgeon told me that there wasn’t a speck of Endometriosis to be found. What he did find however, was a condition called Pelvic Congestion Syndrome. He also told me that he had only recently heard about this condition, and he thought it was –and I quote “fooey” until he saw it there in my body. He had not a clue what to do to treat it. He also diagnosed me with 2nd degree uterine prolapse and suggested a hysterectomy to treat both conditions simultaneously.
I was crushed. Here I was expecting to wake up and hear “We took care of all the endometrial tissue and you should be back on your feet in a few weeks.” What I heard was “you have a condition I know nothing about, let me take out the parts that make you a woman.” My poor dad had just stepped into the room to visit me and I was balling uncontrollably. I hated that day.
Over the next few weeks I did a lot of research on Pelvic Congestion Syndrome and found that it is not all that uncommon, just really difficult to find as most imaging techniques are done while you are lying down. Since PCS is triggered by gravity, you can see why this would be an issue. Lucky for me The Hubs works for a rather large hospital in the city and he was able to network around and find an Interventional Radiologist who was knowledgeable in PCS. We went in for a consult, and scheduled an MRV to get a picture of my veins. Sure enough, my left ovarian vein was grossly dilated and led to a nest of dilated veins in the lower left side of my pelvis. He was confident this was textbook PCS and we scheduled an embolization for January 13, 2011.
Again, I was nervous going in to the hospital that day. Sure, I knew what surgery was like when you were asleep, but this procedure would be done while I was still awake. “Twilight Sedation” they call it. I kept telling myself that this was it this time. That I just had to get through this procedure and get home for my 2-3 days of rest and then I really was going to get my life back.
The procedure went well and I went home to sleep off the meds. Despite a slight complication with the plug they used in the veins the procedure was a success. I was able to notice the improvement within a week and it was amazing. I was able to get back to the gym and work and it was like nothing had happened. We had made it through 2 surgeries and I was fixed, despite what my original surgeon suggested I was not going to need a hysterectomy. This was great news since we were excited about the idea of a baby the following spring.
About 4 months later I started to have the same heavy, aching pains in my pelvic again. It was intermittent and didn’t really interfere with life too much and life went on. 2011 brought advancement in my job, several EDM shows, 2 trips to Vegas and my first wedding anniversary, all of which was only slightly affected by the PCS.
As 2012 got underway the pain began to increase a bit more steadily and by May I was in pain almost constantly. Despite several different tactics tried by my PCP and I, we just couldn’t get a handle on it. In July, after being miserable my entire 4th of July week, I headed back to the imaging center at Fairview for an Ultrasound and then and MRI. The Ultrasound showed no signs of cysts or any other cause for pain, but the MRI showed more PCS, this time on the right side. On July 17th I went back to the cities for my 3rd procedure; my second embolization.
After about 2 weeks I had absolutely no improvement from the embolization and the pain was literally debilitating. I had stopped working out, going out with friends or dancing shows. After extensive discussion with my husband, PCP, and the surgeon who did my original procedure we decided a hysterectomy was going to be my saving grace. On August 6, 2012 I went back to Fairview Hospital and had a Laparoscopic Supracervical Hysterectomy.
I was so sure that this was what I needed. I prayed on it, I meditated on it. I was so ready I practically jumped onto the operating table. I cracked jokes about the evil hissing uterus the doctor was about to wrangle out of me. The Hubs and I had no regrets about the babies we would never have if it meant that I could just be without pain again. This was going to be it, we (all) just knew it. The procedure went well and I went home that day. I spent 2 weeks in bed and another 2.5 weeks taking it very, very easy. All of which was completely worth it because I was going to be relieved of all of this pain when it was over. After 8 weeks I was able to resume life as normal, though still at 14 weeks post op I am still unable to vacuum or lift heavy items.
The hysterectomy-lucky number 4- was not my saving grace. It was not my pain-free fix that we all thought it would be. The disappointment and sympathy on the face of my surgeon at my 6 week post op made it clear that no one really knew what to do for me anymore. We were giving up on the idea of “curing” the pain and now looking towards “managing” it instead. Additionally, my surgeon told me that I had still had a ‘fair amount of dilated veins…’ in my pelvic floor. Though the PCS was back, my surgeon felt that I should give my body some time to really heal from the last procedure and hold off on anything for the next six months or so.
At my follow-up with my primary we discussed Pain Management Clinics and Physical Therapy. We discussed more hormone therapy options and lifestyle adjustments to alleviate some of the daily pain. We agreed that we would wait out “these next six months” before we decided what life was actually going to be like for me in a more permanent manner.
Over the last 3 months we have never stopped trying different things to alleviate the pain. I have been to 2 Pain Clinics, and Physical Therapy. We have tried a few new medications and I have continued to try to adjust my life around my pain. Looking back I think to myself “how in the hell are you still standing?!? After all of those ups and downs, all of the trial and error how have you not completely given up?” and then I answer myself with a very simple reply: “what else can I do but try? Whatever it takes, I have to try.”
So, tonight I share all of this with you as I prepare for my 5th procedure since that November morning in 2011. Somehow I am just as optimistic as I have been for every other procedure I have had. I know better than to expect a complete 100% improvement in my pain, but I am hopeful that the relief will be there, and it will give me a piece of my life back.
So, wish me luck as you finish this post and –if you have a relationship with The Big Man Upstairs- maybe send him a little reminder that I could use his help tomorrow, and I promise to come back and tell you how I am just as soon as I am no longer in La La Land tomorrow night.
Here we go!!!