1 year Post-op Update

 Finally....A whole year behind me, I can hardly believe one year has passed...I made it!

        My one year mark couldn't get here fast enough, I have been anticipating this day ever since I woke up from surgery last year. I had high hopes and had envisioned almost a complete recovery by this time. Over the last couple of weeks my emotions have been all over the place. I'm feeling extremely grateful for the progress that has been made, yet I know there are obstacles to overcome that still lie ahead of me. It's a little bittersweet...I'm not exactly where I had hoped to be, but I'm so thankful I'm not where I used to be.
 
      It's hard to believe that a year ago my husband and I were in Istanbul Turkey for the one and only surgery offered of it's kind in the world. With everything I know today, this would still be my first and only choice for pudendal nerve decompression surgery. I have no regrets and I'm happy with our decision to travel half way around the world for this surgery. I knew deep down this surgery would lead me down a new road, a road full of hope, new beginnings, and endless possibilities. I feel extremely grateful for Prof. Tibet Erdogru's dedication and expertise with this rare nerve condition. I hope one day the option for laparoscopic pudendal nerve decompression surgery will become available in the United States as well as other countries in our world. I know surgery is not the answer for everyone who suffers with chronic pelvic pain, but I can only imagine how this advancement in medicine could impact the hundreds and maybe even thousands of people who are suffering with pudendal nerve entrapment or PNE.

      Looking back over the last few months I've had many ups and and even a few downs. Although at times I've dealt with some set backs, I've made progress, and to my surprise I even celebrated some major milestones during this last year. Overall I'm doing much better than I was a year ago, and even 6 month's ago for that matter. My progress may seem slow at times, but it's starting to add up, and is still continuing...which I am so thankful for!
 
     In the beginning (over two years ago), my experience with PNE put me on a path of one devastating let down after another. Just as I thought things couldn't become any worse, life would prove me wrong and come along and knock me down at every turn. I thought I would never enjoy this life again, I felt robbed of so many things, I can't even begin to describe the intensity of despair I felt as my weeks turned into months. I began questioning my value and worth, I was unsure if I could carry on. The physical pain was one thing, but even more so was the anguish and heartache that followed. I was so devastated and heartbroken, it was all I could do to look in the mirror at myself, all I could see was this sad, broken person starring back at me. I hated what I had become, the pain had practically consumed every little piece of me, and was overshadowing all that I had ever known, desired, and wanted.... all that I was.

     Pain and sorrow has a way of blinding us from all the things that are good and true in this world. I was lost and I needed to find myself through the dark shadows of PNE. I didn't want PNE to define me as a person, I knew there was so much more to me than PNE itself. It was up to me to look at this experience differently, once I started to focus on the finer things in my life, I began to find the happiness and joy this world could offer to me. It took some time, but little by little I began letting go of what had been lost to this devastating condition and began to see that there was so much around me to be thankful for in my life. Once I realized how truly blessed I was, I turned the corner, and life no longer seemed so dim and difficult. Feeling grateful for even the smallest of things restored my hope and hope changed my entire outlook.  Despite the extra challenges and burdens, I've managed to find hope when hope seemed lost, and I've learned that life doesn't have to be perfect to be happy. I have come a long way,  just as I have been physically healing this last year, so has my spirit and mind. I don't talk a lot about my spiritual progress and experiences, but it has been equally as important for my healing, if not more. I have a few drafts written up that details my spiritual progress and growth, I'm just trying to work up enough courage to post them. I guess stayed tuned...I might surprise myself and surprise you too.
 
So are you wondering where I'm at in my recovery at this point?

     I have my own thoughts and opinion of where I'm at, but I was curious what my husband would think about this question, so I asked him. His response was 30%-40% improved, honestly he wasn't that far off from what I was thinking, it was a fair answer. Then I wanted to get my physical therapists input on my recovery, after all she has been working with me for close to a year, and her opinion was also important to me. Her response really shocked me, she didn't even have to think about it, she quickly answered 75%. My jaw dropped wide open and I said "wow, really? You really think I've made that much progress?" She shook her head up and down and said "yes." I didn't realize we weren't on the same page, and of course I  asked why she felt that way, because I didn't feel like I had gotten quite that far in my recovery yet. In my opinion I feel like I'm somewhere between 40%-50% improved, so we discussed our opinions with one another and compared the differences. Because there is so much more to this condition than just the pain, we broke down my progress into specific groups, we came up with a new number that we both compromised on. We concluded that my "overall" progress is for sure 50% improved and is possibly pushing 60% at times. What a difference this has made in my life and with my family, things are starting to run a little more smoother around here and it's been really nice!

      The most noticeable improvement for me has been with my pain, my pain levels have decreased significantly. Probably the only way I can compare the pain in a way most of you can relate to is by imagining the difference between a headache and a migraine. For anyone that has ever suffered with a migraine you understand how debilitating this pain is, it's intense, you can't focus or think, noise, light, and movement magnifies the pain. I'm talking pain so bad that you have no choice but to lay down and you lose touch with everything that is going on around you. That's where I was before traveling to Turkey, spending a big part of my day in bed. Now, the only time I spend in bed is at night (just like a normal person). I get up and get through the entire day and can do most day to day activities on my own without suffering the consequences of my actions. If I'm careful my pain stays fairly steady on most days, and I don't experience too many flares anymore. In this aspect I am 75% better, but my issues with sitting is not where I thought it would be, this still makes things challenging at times. I still avoid sitting as much as I can, if I sit for too long, sitting does increase the pain . Usually an hour is my tolerance, sometimes two hours...it depends on the chair. But, with that said I do find myself enjoying things that requires sitting more often. Like right now I'm actually sitting at the computer desk, I can sit on my couch again, I can go out for dinner and not scan the restaurant for bar height tables to stand at, I've been to the movies, I love sitting on the glider on my front porch again, and driving around with both bum cheeks resting on the seat, this makes driving so much easier.

     The issues I'm still working on and hope will change eventually is first, that my pain will continue to decrease and sitting will become more tolerable. Next, is my strength. Building my strength back up and getting my muscles to fire and work properly, so things like walking, climbing up and coming down the stairs, and moving becomes more natural and hopefully my speed will increase as well. Last, intimacy with my husband. I'll spare the details, but yes, this would be a huge milestone for us. I haven't completely given up on this, some small progress let's me know that there is still hope in this department. And if not, it's not the end of the world, I think we'll be okay.

     Physical therapy has been a huge key in my progress. I do not think I would be where I'm at today without it. It has become like a part time job for me, it's hard work and a lot of dedication, but thankfully it's paying off. I'm happy my PT has not given up on me, her willingness to work with me even when things seem to be moving slower than we hoped means everything to me. She is just as dedicated to my recovery as me, and is always just as excited about my progress as I am.

     I'm so grateful for each new day and all that life has to offer. I am truly blessed and so grateful for so many of my friends, neighbors and family. I appreciate so many of you who continue to check in on me and give me strength through your love, words of encouragement, prayers, fasting, and keeping my name on the temple prayer roll. Everyone has been so kind and understanding throughout this journey. I can't even begin to express how much this means to me...thank you from the depths of my heart. Sending all my love!

11 Month Post-op Update

11 months...wow it's hard to believe my 1 year mark is just around the corner!

     I'm doing much better since my last post. I'm not exactly sure why...? But, I'm not going to question it, but rather enjoy it while it last and hope it last for a little while...scratch a little while, how about forever...that sounds even better! The last week of August my piriformis muscle finally decided to cut me a break after 7 long weeks. I walked into PT feeling one way and walked out like whole a new person. For almost three weeks I've managed to go without one flare, I'm feeling extremely grateful, especially considering everything I had going on the last couple of weeks.

     By the end of August I was beginning to feel overwhelmed. My fourth child was turning eight on Sept. 1st, and turning eight is big deal around here. Ever since he could remember he knew eight meant getting baptized and becoming an official member of our church, The Church of Jesus Christ of Latter-Day Saints...i.e. Mormon. All I could think about was this pain that had been holding me up for the last few weeks and how in the world was I going to be able to prepare everything for this special day. Plus outside of this was his actual Birthday celebration, which this year included a friend party. Honestly, I thought we may have to postpone all of it, it just didn't seem possible to pull all of this off. I was having a hard time just walking, driving, and even laying down, how was I going to plan a Birthday Party, and prepare my house and all the food for 40 plus guest for our traditional luncheon after the Baptism.

     With a lot of prayer and patience, one perfect little miracle occurred. The Tuesday prior to his Birthday was the day I walked out of PT like a whole new person. Not only was I able to pull everything off, but I pulled it off without one flare. This was huge! I can't even begin to tell you how happy I am, and just how blessed I am feeling. I partied with eight year old's all day, cleaned like I haven't cleaned in over two and half years, I shopped and shopped, then I cooked and baked for two days, next I celebrated his special day with him and our family and friends. And the best part...I did all of this without one single flare...not even ONE!

     I am not by any means completely recovered and healed, but I am making good progress, it might seem slow at times, but all these little steps of progress are adding up. I'm still dealing with pain on a daily basis, but the pain has decreased significantly, especially if I limit my sitting. I'm a lot slower than I use to be, but I'm finally at a point in my recovery where I'm starting to work on strength. It feels good to be building my strength back up, as I become stronger, so should my energy and speed.

Things are definitely looking up...things are getting better...and everything is going to be okay!

10 month Post-op Update

     Well, I'm not going to lie...the last few weeks have been hard, much harder than I would have ever anticipated at this point in recovery.

     I've been struggling with increased pudendal nerve pain and now lower back/gluteal pain issues as well. Over the last two and half years the pudendal nerve has reeked havoc on many of the muscles in my pelvic area. As a way to protect the pudendal nerve my glute muscles stopped firing properly, and as a result my pelvic muscles are over worked and stressed, they have become very weak or atrophied. The glutes have essentially been inactive for a very long time and as I'm trying to build my pelvic strength back up, it's made this part of my recovery a little more challenging and difficult.

     For those who don't know much about the pelvic muscles, I'll give you a brief anatomy lesson. The glutes are a large group of muscles that make up the buttocks area of the body. The glutes are some of the strongest muscles in the body, they help us walk, stand, and sit. Many of you might be wondering what happens when the glutes don't fire properly? Let me explain, the other muscles surrounding the glutes take over and become overworked. My hamstrings, quads, hip flexors, and adductors muscles have now taken on the additional stress of helping my body move. I've been working with my PT to retrain my muscles how to fire properly, which is good in every way, except it's hard work and painful...so painful! When I get the motions right I know it, because at first it really hurts, it is starting to get better, but it's been a slow process. Over the last few month's my right side seems to be catching on a lot faster than my left. I see a clear distinction between my right and left side now and I often think to myself if my left side felt anything like my right, things wouldn't be too bad.

    My left side is and has always been the most affected from the hysterectomy. My biggest issue over the last few weeks has been coming from my piriformis, a muscle in the gluteal region. The piriformis muscle controls almost every motion of the hips and legs. When the piriformis becomes aggravated it tightens up, in turn the tightness puts pressure on the sciatic nerve...ouch, the sciatic nerve has a mean bite! It's a vicious cycle of sorts, the less pain I am experiencing the more I feel like I can sit and do, the more I sit and do, the more the pudendal nerve and now piriformis muscle acts up, then the sciatic pain starts in on all the fun, which puts me straight down. With rest I always feel better and then I get up to start the whole vicious cycle all over again...who has time for this? This has been happening almost everyday over the last few weeks, it's a terrible feeling, once the piriformis starts to act up I feel stuck. No matter which way I move my leg I experience a sharp stabbing pain right in the middle of the left butt cheek, then it's not long before the pain starts shooting down my leg. I've been working on stretches, but the motions of the stretches are very difficult to do with sharp shooting pains. On occasion I've gotten lucky and caught the vicious pain cycle just in time to work it out, but too often it hits me without warning.

     It just goes to show, that even though a couple of months ago as things were finally starting to feel somewhat normal, my body is letting me know I'm not completely ready to jump back into the swing of things quite yet. It's hard to find the right balance. For me balance is a fine line between feeling great and being productive, and simply over doing it without even being aware. When I'm feeling "somewhat normal" it's easy to get carried away and cross this fine line. Some days I wish this little fine line had a buzzer or an alarm to warn me that I've gone too far and to stop doing whatever it is that I'm doing. But...my figuratively speaking fine line has no such thing. Clearly my body senses when I cross the line, but unfortunately the alarms of pain seem to work on a delayed timer. I really hate feeling this way as if I'm tip toeing around my pain as to not make it any worse. My days have become very unpredictable and it's hard to get many things accomplished, on these unpredictable days I feel extremely worthless.

     A couple of month's ago my days were more predictable, I knew my limits and if I stayed within my limits my pain stayed low throughout the entire day. As my days turned into weeks I started to feel more confident about testing the waters. I stepped outside of my comfort zone and started adding in some of the things that had been lost to PNE, and I'd missed doing for so long. I went to the movies, took a couple of road trips with my family, and gave sitting a try more than usual. It appears trying to step through the door of normal was too much for my nerve at this time and over the last few weeks I've been paying the consequences.

     The new plan is to cut back on the sitting and hope I can get back to where I was. This doesn't mean I'm not going to attempt the movies or a road trip ever again, it just means I won't cram so much of it in all at once. It's good to test the waters every now and then. I know this attempt didn't work out exactly as planned, but I'm not going to let it discourage me and keep me down. I'm going to keep pushing along and keep trying!

Nothing ever stays the same, it will get better...it will!

9 Month Post-op Update

     Hello...I know it's been a while, and this update is a little over due, but I'm still here. I took a little break to spend time with my kiddo's during their summer break. They only get three weeks, (no thanks to year round school) so I have to make the most of it.

     Since my last update I've had one unexpected and not so fun flare, a slight set back with pain, and (I have good news too) more milestones to share. So as you can see a lot of ups, and some downs as well the last few weeks.

     I'm starting with the milestones, exciting and good news is always fun to share. I sat through not one..., but two movies this last month. I could hardly believe it, I made it through the entire show! Both times!! My last attempt at going to the movie theater was last fourth of July, and after 20 minutes I ended up standing in the back for the rest of the movie. Fast forward one year later, and the impossible is finally possible. I definitely felt some discomfort, but it was manageable. The feeling of one foot inside the door of "normal" feels so amazing. For the last two and half years I could have never imagined enjoying something as simple as going to the movies, yet this simple pleasure has been given back to me and I'm feeling very blessed.

     Next milestone, one more successful and fun filled road trip. For the fourth of July we headed 4 1/2 hours down south to hot, hot St. George, UT.  Temperatures hovered around 110-114 most days, but despite the heat we had a blast. My 4th grader was assigned Washington County for his county fair project this year, St. George is a city in Washington county. With our summer break finally starting just before the 4th of July, we were brainstorming on something fun to do. We/he thought it would be fun to go to the county he had just studied in school. He also knew we had some good friends that lived outside of St. George in Cedar City and he had been begging to go see them for month's. He had the perfect trip planned out in his little head, so we went with it. We had an amazing time visiting with friends, a lot of swimming, a little bit of hiking, watching one of the best firework shows ever, and kayaking in the lake. Outside of the long drive there and back, I did all of this without experiencing an increase in pain. My friend even commented about everything that I was doing and seemed very surprised and so happy for me. I'm really happy about the direction I'm going...I think I can get use to this!

     Wait...hold that thought...I may have spoken to soon. That pudendal nerve of mine has a funny way of reminding me that it has a mean bite if I try to forget about it. I had a couple of really good month's and then out of no where my pain shot up. I mean this is bound to happen, but usually it's for a couple of hours or a day at most, not for 8 days in a row... at least not anymore, I thought I was past all of that. I'm not exactly sure what happened, but clearly I was dealing with a flare.

     Oh the dreaded flare, it's my bodies way of screaming at me that I'm having too much fun and it's a harsh reminder that I can't always do everything that I'd like to do. Nerves are funny like that, completely unpredictable and unforgiving. Then just as my flare is calming down my feet start acting up, keeping me up at night, throbbing , burning, aching, just trying to stand up is painful...how am I suppose to walk? Then a week later my lower back starts in on all the fun, it's so odd! My feet and back hurt so bad I forgot about the pain in my in-betweens, ya, it was that bad!

     I told my PT last week I think I'm having a set back, she reassured me and said "I wouldn't call it a set back, just a little bump in the road." I left for home and later that night my back seemed to get all bunched up and it felt like it was catching on something deep inside...ouch! So this week in PT we focused only on my back, it seems the catching and twinging and twitching is finally gone, but now I'm left with a very sore feeling. I hope I'm over this bump in the road...it's been a long couple of weeks...I'm tired!

      Even with this "bump" in the road, overall I've made progress along this road of recovery. I'm really enjoying the feeling of  life's simple pleasures seeping back in and giving me a second chance at "normal" again.

   

   

Plan B...

(a recount of our journey continued)

     I'm not sure if you remember, but I had to wait an exceptionally long time to see the specialist in Phoenix, 5 months to be exact. Well I had been a very busy girl during those 5 months, busy researching and trying to figure out some answers. The Phoenix specialist wasn't the only one in our country, there were 4 others that I was interested in, only problem was that it required traveling longer distances, which is not easy for someone in my shoes.

     Specialist in Minnesota- I had called and talked to his office a couple of times, they sent a large packet by mail to be filled out and returned at my appointment. I called in August of 2011 and I was scheduled to meet with him on September 22nd, yep that's right, only 6 weeks out. After reading through the packet I learned what this consultation would entail, after a physical examination, I would more than likely have a pudendal nerve block done. This specialist recommends three nerve blocks total, which would require traveling to Minnesota each time, as this was the specialists typical treatment plan for PNE patients before considering surgery. Curious about the nerve block I googled pudendal nerve blocks to learn more about this procedure. BIG, BIG mistake, no good came from this...NONE! I was led to a YouTube video of the procedure and after watching I must admit I was a little freaked out. I knew I would not be able to endure this block without anesthesia. I called the office and asked if this would be an option. She explained to me that all of his patients are awake during the procedure and that it was very typical for this procedure to be done like this. After thinking it through for a couple of weeks I knew I would not be able to go through with this appointment, I ended up canceling out of great fear. I was already scared to to sit on a flight for that long, and the thought of going through with the procedure only added to my anxiety. I was desperate for answers, but apparently not that desperate yet! I thought I could always re-visit this option another time, but I wasn't mentally prepared or willing to go through something like this. For now the Minnesota specialist was checked off my list.

     In all my time researching there was always one thing that came up when searching through Websites, this was the MRN. I was very interested in having one done in hopes that we could figure out what was going on, but there were a couple of issues. First it was not covered by insurance, $4000 plus dollars. Second, most doctors I spoke with didn't seem to know what I was talking about, hmmm? The one doctor that did know what I was talking about strongly discouraged me from getting it done. I felt so confused??? I kept reading about the different types of MRI imaging, there seemed to be a lot of controversy regarding the use of MRI's as a diagnostic test for ruling out PNE. One night I stumbled across an interesting post on the Pudendal Hope website. It seemed that a radiologist in New York was having success with finding issues in the pelvis that most MRI's were unable to detect. I read a few remarks from people that had positive readings for nerve entrapment and finding other issues that compromised the pudendal nerve in some way. I called the Hospital of Specialty Surgery in New York the next day and asked several questions. I learned the radiologist uses a MRI' T3 machine, and that my insurance would cover this test. I set up an appointment, but to my disappointment they were booked out for 5 month's. I would have to wait until January 18th 2012 before I could receive this test. I truly don't understand why I always have to wait so long to get help...so frustrating!

     Even though a month later I  ended up scheduling what I thought was going to be a MRI' T3 in Phoenix, I decided to keep my appointment in New York as a back-up plan, you know...just in case. Mmm hmm...this is where plan B comes into the picture. I'm so glad I kept my MRI appointment in New York, because Phoenix let me down on the MRI side of things big time! On our flight home from Phoenix I knew exactly what our next step was going to be on our PNE adventure... we were heading to New York.

     The day after returning home from Phoenix I called the next PNE specialist on my list that I was interested in consulting with. He was located in New Hampshire, his clinic is considered the first and only Pudendal Neuralgia Treatment Center in the United States. At this office they do things a little differently, the receptionist explained to me that prior to scheduling an appointment for me she needed to set up a phone consult with the doctor first, he would then determine if I should fly out for an evaluation and testing. What a great idea, and the phone consult would even be free. She told me I would receive a phone call sometime in the next two weeks.

     Next on my list was a doctor that my pelvic pain specialist and physical therapist highly recommended after returning from the 2011's IPPS (International Pelvic Pain Society) Conference at the end of October. They both seemed very impressed with his presentation and suggested I should consider consulting with him. My physical therapist thought maybe I should just go and see him and skip going to Phoenix altogether, but after waiting so long to see the specialist in Phoenix, I  was finally only 5 weeks away so I decided to stick with my original plan.

     After returning from Phoenix I reconsidered their suggestion and contacted this doctor they spoke so highly of. He is a Neurosurgeon out of Baltimore, he studied at Johns Hopkins Hospital, and now ran the Institute for Peripheral Nerve Surgery. His office was very friendly, I mentioned that I was already scheduled to fly out east in January for another specialist and that it would be nice if I could coordinate the appointment around the same time as to avoid flying back east again. I knew this long flight was going to be difficult for me, I was really hoping to kill two birds with one stone. They were so nice to work with me, I was scheduled for the day after my MRI in New York. Flying from New York to Baltimore would be easy. The only down side the neurosurgeon does not contract with any insurance companies, my 1 hr. consultation would cost us $750...ouch! He was also concerned that I had not had a pudendal nerve block yet. The block is used as a diagnostic test to confirm PNE. His office will set up the consultation only if the  patients nerve block was successful at relieving the nerve pain. I worked with the pelvic pain specialist at the U and was scheduled for my first nerve block on Dec. 29th. If the block was successful at relieving the pain then I would keep my appointment as planned.

     So two weeks went by and I hadn't heard from the New Hampshire specialist as of yet. It was getting close to Christmas which is a very busy time of the year, so I decided if I hadn't heard from him after the holidays I would contact the office again. The last week in December I finally received the phone call that I had been waiting for. He apologized for taking a little bit longer than normal in getting back with me, and was extremely kind and compassionate towards my situation. We spent close to an hour discussing my history and talking about my options. He felt coming out for a consult and testing would be best in my case. He said someone from his office would contact me to schedule an appointment. I explained that I would be out east in about three weeks and wondered if I could arrange my appointment during the same time. He was not sure what his schedule looked like exactly, but he did know he was booked out until March. He told me to mention my situation to his receptionist and they would do their best to work with me.

     The receptionist understood what I was trying to accomplish while traveling back east. She has seen first hand how this condition affects people like me and knew it was going to be difficult to travel so far to meet with the specialist. She was willing and determined to make this work for me. She called back to let me know they were able work something out in my behalf, except there were a couple of glitches. First, she explained that the doctor was willing to meet with me during his on call day. Which meant there could be a slight possibility that he may get called away during my consult or I may have to wait for my consult if he is hung up at the hospital delivering a baby or dealing with another type of emergency. Second, the day that they were able to work me in just happened to be the same day that I was scheduled in Baltimore. Hmmm...a little bit of a dilemma. That was the best they could do for me and if I didn't take that offer I would need to wait until March to have my consult in New Hampshire.

     In an attempt to make the most out of my time while traveling back east, I started looking into different options. I called New York to see when the next available appointment was for the MRI would be. The soonest available was not until the end of April. Considering that I had already waited almost 4 months for this MRI, my decision was easy, I made my mind up and I decided to stick with my original date in January. Besides, we had already purchased our flights for New York and to Baltimore.

     I worked with the specialist in Baltimore next to see if we could work out a different day during that week, but he was returning from traveling outside of the country the day prior to my appointment and was completely booked up for that week. That's when the receptionist offered a different option which ironically was something that would work for us. She told me that the neurosurgeon also has an office in Henderson Nevada that he visits about once a month. He was planning on being there next in the middle of February. I liked the idea of flying to Las Vegas, it is less then an hour flight from Salt Lake, I could manage that much easier then flying back east again in March to visit with the New Hampshire specialist. I canceled our plans to Baltimore, rescheduled for Nevada, and officially scheduled New Hampshire's appointment. Our flight form New York to Baltimore was booked through Southwest, and Southwest was willing to give us credit for our canceled flight. It worked out great because we were able to use our credit towards the flights to Las Vegas the following month..

     Plan B is arranged and in place, in just a matter of a month's time I was scheduled to visit with three more specialist. The best thing was that I didn't need to wait very long for my appointments. Minus the MRI and a couple of hiccups, plan B came together very fast and I was looking forward to the possibility of options that lay before us as we set out on our east coast adventure.

8 Month Post-op Update

 
     Here I am...at my 8 month mark already. I am so happy to share that I accomplished a BIG milestone in the world of PNE this last month. A year ago I never could have imagined taking a road trip with my family and enjoying it, just the idea alone seemed out of the question and completely impossible. Over Memorial Weekend I did just that, and it's the closest I felt to "normal" in a very long time.

     Last June my family and I did attempt a 4 hour road trip. We planned a trip to the Dinosaur National Monument with my husbands parents. My kids were so excited, it was too hard to say no, I did not want to disappoint them. I was extremely miserable, I hurt so bad and felt so discouraged with my bodies inability to perform and work like it use to. It was some of the most difficult pain I had endured, and one of my worst flares along this journey. It took 9 full days to recover from our 2 1/2 day get away. I spent the first 4 days laid up in bed after returning home, and it was about another whole week before I felt back to myself. After that experience, I didn't see myself going on very many road trips in the near future and I definitely didn't expect I would ever enjoy one again.

     I'll admit, back in March when my husband first told me that his family reunion was going to be in Idaho over Memorial Weekend, I was not in a position to give a definite answer on whether I'd be going or not. On the upside, I hadn't totally dismissed the idea all together, and the fact that I was considering the possibility of even going was huge all in itself.

     I had finally reached a point in my recovery where the things that I had missed out on for so long were starting to feel closer in reach and more of a reality rather than a distant memory or dream. For over two years now I'd stay home as my family walked out the door and pulled out of the driveway to enjoy various activities without me. It was in those moments that I despised PNE the most. I wanted nothing more then to be with my family enjoying life, but my physical limitations made this too difficult for me.

     On Mother's Day I decided that I was going to do it, I was ready to step outside of my comfort zone and go with my family to Idaho. With my pain levels beginning to develop into a new pattern I thought what a great opportunity, I couldn't think of a better way to try out my new and improved broken sitter than on this upcoming road trip. My kids were so excited about the news, there was no way they'd let me change my mind even if I wanted to. We would be traveling 4 1/2 hours to Miracle Hot Springs, which is located just outside of Twin Falls.

     Traveling to Idaho turned out to be more difficult then I had expected. We weren't even an hour into our trip when I had hit my sitting quota. When I hit this point I usually can't take anymore siting and it's time to get up. I thought to myself  "it can't get much worse than this", and I kept telling myself that "I can do this, if this is as bad as it's going to get, then I'll deal with it." I was wrong, after 20 minutes I had completely maxed my sitting limit, and before I knew it I had squirmed out of my seat and was down on my knees hunched over on the front seat. My knees can only take so much, so after a 1/2 hour I attempted climbing back into my seat. By this point we are only half way there...ay yi yi! It's going to be one very long and uncomfortable couple of hours riding in the car.

     Once we arrived in Twin Falls it was close to bedtime, I was glad because my pelvic muscles were tight and stiff, and my  broken sitter was on fire. I was so happy to climb into bed and let my body rest for the night. Surprisingly I woke up feeling great the next morning. After breakfast we finished the last 40 minutes of our road trip and finally arrived at Miracle Hot Springs. My next two and half days were filled with very little pain and I was able to experience life just like a normal person again....it was unbelievable!...it was a miracle! Hehe!!! I couldn't help myself....I had to throw that in.

This is where we slept...in the sleeping dome 

The view from the front door of our Dome

Complete with a queen bed, heat and air conditioning too

This was his favorite part about our whole trip

 

Interesting chair outside our door

We played and relaxed in the hot springs....

Playing a game of checkers

hanging out with the fam...catching up and relaxing

We even reserved a private hot spring for the afternoon  

 We drove about an hour away from the hot springs to visit a place called Mammoth Cave. I unexpectedly tolerated the drive and the short hike down into the cave. I was feeling extremely overwhelmed with happiness, I was living life again and enjoying every last minute. Wa Hoo!

All of us just outside of the cave entrance

12 and older were given there own lantern 

That was the temperature inside the cave

Favorite thing to do with grandpa...geocaching!

 

     Coming home we stopped in Twin Falls to a look at the Shoshone Falls. It's a beautiful waterfall located on the Snake River in Idaho. We were lucky enough to arrive just at the right time to witness this spectacular sight complete with a rainbow...breathtaking!

Wow! It was so beautiful!

A view of the Snake River

here we all are

The people I love...my family

     The drive home went much better than driving there. I think the lesson I learned is to start out a long drive after a good nights sleep versus running around like a crazed mom all day getting everything ready and then expecting my body to endure a 4 hour long drive like most normal people could.

     I really expected to return home and more than likely pay for the consequences from our weekend getaway. But, luckily it never happened. I got up Tuesday morning feeling like I always do and I just shook my head in disbelief. I still have bad days here and there, but I am really feeling good about where things are going in my recovery.

     As Memorial day approached it was evident as I  looked back over the last couple of month's that I had made it to a new phase and started a new pattern. My new phase in recovery is that my pain levels are staying down more regularly, and this has helped me with getting back into a routine with my family. It has been nice to have more predictable days more frequently, and my progress has left me thinking that I AM going to be okay.

   

7 Month Post-op Update

     Today is my 7 month mark, and looking back over the last month I haven't seen a whole lot of improvements. It's all good though...I'm still continuing to have lower pain days and this is HUGE!

     I have been experiencing a couple of new issues this last month, one old symptom has returned, and a brand new symptom has decided to join in and make things a little more interesting. I'm not too concerned yet, but I do have a couple of thoughts that may be contributing to these new daily annoyances. At six month's some of the areas down there in my in-betweens were still numb from the surgery, it seems like more of the sensations are finally coming back. While this is a good sign, regaining sensation is not always the most comfortable at first. Imagine when your foot has fallen asleep and is trying to wake up, now imagine that feeling in the most private area of your body, see where I'm going with this...a constant prickly needle feeling. My physical therapist and me both think this will go away eventually, at least that's our idea for now. The old symptom that has come back involves bathroom visits, I'll spare the details, but it has been a good reminder of how bad it use to be. I sure hope this is only temporary and not my new normal. The sensations felt while the nerve has been waking up is very irritating for me and my in-betweens, it turns the pain up a little, but is more aggravating if anything.

     My spirits are still high and even though this has been a slow recovery process, I truly feel like I'm heading in the right direction. I'm moving forward and keeping one foot in front of the other. At one point in this journey PNE had taken total control over my life. I am thankful to have pushed through all the pain and devastation and be on the other side of despair. I refuse to allow PNE to define me. I am so much more than PNE! Everyday I make a conscious decision and a choice, I choose to look at the broader picture...I choose happiness over despair. Life still has so much to offer and I choose to be grateful for all the many things I am blessed with despite PNE.

Specialist Here and Specialist Where? (Part 2)

     I'm finally getting back to my story about how we ended up on the road that ultimately led us to Turkey. This is where I left off last fall before we traveled out of the country. Not to be confused, this is a recount of my experiences with PNE and our adventures along the way to try and help find a way out of this medical crisis that I had unfortunately found myself in.


     December 2011, had finally come, I am feeling very excited to go to Phoenix, as this would be the first time I would be able to talk to a specialist who finally knows a thing or two about PNE. I had called my doctor a few days before to ask for something to help with the sitting pain during the flight to Phoenix. They called in some Valium, this would be the first time I would have to sit for longer than I could tolerate, and I was very nervous about this. The flight seemed to go fast, and the Valium really helped me to relax, overall it went much better than I had anticipated.

     One of the perks of flying to Phoenix, was that my husband has two cousins that live in Arizona.We called to let one of his cousin's and his wife know that we would be coming out their way for a couple of days. His cousin offered to pick us up from the airport, and they also offered to let us borrow one of their cars so we get around to our appointments while we were staying in Phoenix. It was nice to be greeted by a familiar face in a new city. He took us to his adorable home in Mesa, and we were able to see their beautiful children. They took me and my husband  out to one of their favorite Mexican restaurants for a nice dinner and we were able to spend some time catching up. After giving my husband some directions, we headed back to Phoenix  for our hotel. They totally offered to let us stay at their home, but we chose a hotel in downtown Phoenix close to the hospital and the specialists office. Thank you Troy and Shilo! We loved spending time with you and your cute family!

      The next morning we needed to be at the hospital by 7:00 am for the MRI. There is a lot of controversy over MRI's for the pudendal nerve. Most doctors feel that this is an unnecessary test for the diagnoses of  PNE. The issue is that the pudendal nerve is too small and does not show up on any type of imaging. However, the blood vessel, and the artery that runs along the pudendal nerve, which forms the pudendal bundle, can show up on a MRI. Basically, the MRI is also used to rule out any other underlying issues that may be going on, such as a cyst, or tumor, and any other abnormalities in the pelvic area that can create or cause pain. I had done a lot research about MRI's, I learned the differences between the standard MRI, MRN's, and MRI T3's, there seemed to be more success in getting a better reading of the pudendal bundle using the MRI T3.

     When I originally set up my ultrasound at St. Josephs I specifically asked about the MRI equipment. I was directed to the head of the Radiology Department and she assured me that the specialist I was flying in to see used the MRI T3 for his diagnostic test for PNE. When I arrived that morning and met with the technician I had several questions, I'll remind you that I had the last 5 months to prepare for this day, all the waiting had created a very high expectation and I needed to make sure all my concerns would be covered. I had a list of areas in the pelvis that I wanted to go over with her, I asked if the MRI included images of these specific area. She seemed impressed that I knew so much, I explained I had a lot of time to prepare for this. She went through my list and said that everything would be done with the MRI. One last question that I almost hesitated asking, but finally did, "will you be using the MRI T3 today?" She seemed shocked that I would even know the difference, and she explained that the specialist that I would be seeing no longer used the MRI T3 for his testing. She explained he wasn't getting very clear images and the results he needed. I felt very disappointed, after all of the research and phone calls to insure this is what I would be getting, to only find out that now I wasn't, had me thinking "what the heck...why am I  even doing this?" Seriously, if I had known this was going to happen, I could have easily had this exact MRI done in Utah anytime. Imagine my disappointment after all my research, phone calls, and distance traveled to only learn that I'd be getting a standard MRI after all. Well, now I am very thankful for following my intuition month's prior and I already had a back-up plan in place. (NY MRI scheduled just in case, more on that later)  Two hrs. later, one MRI complete, and now we're off to the physical therapist.

     The Physical Therapist was located in Paradise Valley, this was a very pretty area of Phoenix. To date this appointment was one of the best experiences on our journey to finding a solution to my pain. She was very professional, extremely thorough, very soft spoken and calm, and we walked away from that appointment with a lot of new information. We spent two hours with her, she wanted every last detail, she did a physical examination, and offered a lot of suggestions and tips for people in my shoes who suffer with PNE. I couldn't wait to get back home and share all the information that I had learned with my own physical therapist.

     One of the things that stands out in my mind about this appointment was her cushion library. There are all sorts of cushions to purchase with cut outs to avoid pressure in certain areas of the in-betweens. The problem is that they tend to be very pricey and a lot of companies will not accept returns on these items. I was very reluctant in purchasing a cushion, for fear that it would offer no relief, and then I would be out the money. She had a small room in her office in which she had purchased several cushions for her patients to check-out, and then you could give them a try in different places, like your car, office. dinning chair, couch, and at work. I felt a little like Goldie Locks, too soft. too hard, but never just right. She said she had some of the top sellers out, so I was unable to give them a try that day, bummer! I thought what a great idea, to try out a cushion before ordering one online. I wish there was something similar here in Utah.

     Now we head back to the specialists office at St. Joseph's. We were meeting with his physician assistant that afternoon. We waited a very long time in the waiting room, and after our consultation, we walked away feeling very disappointed. I was assured by the hospital that my MRI results would be available that afternoon for my consultation. They made a quick phone call, but was unsuccessful in getting my MRI report. The PA did not come across as a warm and fuzzy person, she was very short and brief, and lacked compassion and concern. So we head back to our hotel, and hoped that our appointment with the specialist goes much better tomorrow. (We learned the next day that my MRI reading was negative. It was really no surprise, because based on what I had read while researching, this was completely expected as an outcome for the standard MRI imaging)

     As I mentioned earlier in this post my husband has two cousins that live in Phoenix. They had arranged for all of us to meet up at a restaurant for dinner that night. We learned even though they lived so close to one another they never made the time to get together. I am happy to say that with our quick trip to Phoenix this was just the ticket to make this long over due reunion happen. We met at an Italian restaurant and had such a great time catching up. After some pictures to prove to their moms that we really did all get together, we headed back to our hotel.

     After five very long month's the anticipation was over. Today is Dec. 6th 2011, I was finally going to get the opportunity to speak to someone with the knowledge and expertise of PNE. The doctor was very friendly, but got straight to the point. He explained that I was going to need surgery to fix the pain issue. This surgery is called transgluteal pudendal nerve decompression surgery, it is an open surgery where in order to reach the pudendal nerve which is deep in the pelvis, he would have to cut through a large ligament (the sacrotuberous) in the buttocks area. Since I had issues on both the right and left side, this meant he would need to cut through both sides. This seemed to be a very brutal surgery and after explaining the recovery, which is somewhere around 18-24 months and sometimes even longer, and with a 1 in 3 shot of having a 60% improvement, yes, that is right, the surgery wasn't even guaranteed to be completely successful, I worried how I would be able to do this with 5 young children at home. We also learned even though this specialist accepted my insurance that my insurance does not cover the pudendal nerve decompression surgery. We have Aetna and unfortunately they still consider this surgery experimental and investigational. The surgery would cost us about $50-$60 thousand. OUCH!

     This surgery is very delicate work, and before jumping into the surgery the specialist likes to do a round of Botox injections in the pelvic area first to rule out any muscle issues that may be causing the nerve to act up. This would require us to travel back for the procedure, he would do approximately 30-40 injections in the pelvic floor while under anesthesia, followed with a pudendal nerve block so as I'm waking up and recovering the nerve will remain asleep for a few hours. We would then stay one night in the hospital, and then come home the following day. The Botox could take up to two weeks to take effect and would last up to 12 weeks or sometimes longer. Botox does nothing for the nerve, only the muscles surrounding the nerve in the pelvic area. When the nerve becomes irritated the muscles surrounding the nerve become very tight which then puts more pressure on the nerve and causes more pain. The purpose for Botox is to relax or "paralyze" the muscles in the pelvic floor, with the hopes that the nerve could calm down enough for the pain to subside. They told us that most insurances will not cover this procedure, they said they would start the approval process for me and then scheduled me for the 25th of January for this procedure. It would cost us about $4000 total to fly back and have this done if the insurance denied it.

     This was hard to process, with physical therapy we had already ruled out that my issue was nerve related and not muscle. Even the PT in Phoenix seemed to think my issue was more nerve and not muscle. I really wish I could just forgo the whole Botox procedure prior to being scheduled for surgery. I was feeling that I was not a good candidate for this procedure based on my history. My thought was, say we come out and basically gamble $4000, there is chance it wouldn't help to relieve the pain, and also a possibility that it would make things worse for a couple of month's. On the other hand let's say it works, we would not be able to afford this type of treatment for long term. So, in a way I felt that if it did work, it would only be for a couple of months and then what? It would feel like a giant trick was being played on me, I couldn't afford to keep up with this type of treatment for a outcome that only offers temporary relief, that's just plain silly if you ask me.

     After 5 very long month's of waiting to get into this specialist, my overall thoughts on our flight home was this, I felt a little confused, very overwhelmed, and had several mixed feelings about the new treatment options that were offered to me. First, the thought of another surgery scared me, REALLY scared me! Second, I hadn't read or heard of many people having good results with Botox, I personally wasn't ready to try this approach for pain relief quite yet, especially for the price. On the other hand, the specialist did prescribe a special compounded suppository for me, something that was never introduced to me in Utah. It was a mix of Valium and Baclofen to be inserted right inside the yah yah.

     We went to the pharmacy at St. Joseph's to fill this before going to the airport, I only had the pharmacy fill 12 of the 48 prescribed. My insurance does not cover compounded drugs, and I didn't want to pay all of that money on a drug if it didn't work, or if I didn't like the way it made me feel. To this day, biggest mistake I made, I regret not filling the prescription for the full amount. I thought this prescription was expensive in Arizona, had I only known how hard it would be for a doctor to write out a prescription for this in Utah, and the price the pharmacy wanted to charge me here was completely insane, $12 for one.

     I somewhat expected to have a bit of an emotional breakdown on the flight home. Seeing that we had waited so long for this appointment and walked away feeling more confused, with even more questions, and also a titch disappointed. But, surprisingly I never did,  I was more shocked if anything, shocked that the options offered weren't as simple as I had hoped. Instead my mind was already moving on to plan B in hopes that somewhere out there, there was an easier solution to my issue.

Plan B

6 Month Post-op Update

     Well friends and family, today is April 9th, and I finally made it to my 6 month mark, HOORAY! At this stage who knows, this could mean I'm half way through my recovery based on my surgeons opinion, or a quarter of the way based on other's experiences with decompression nerve surgery and the opinions of the United States specialists. Either way, it is a mile stone worth celebrating, and the way I look at this is there is still plenty of time for many opportunities of improvement over the next few month's. I'll just remind you that nerves really do take a long time to recover and heal, and even though 6 month's ago I envisioned my six month mark so differently, I am very thankful for the progress that has been made.

     I knew when I decided to travel to Turkey for my surgery that there were no guarantees. I also knew this surgery would not cure me of  PNE, because as of now there is no cure for this rare nerve condition. But, what I did know was that this particular surgery's success rate was between 60%-85%, and that a 50% improvement in pain reduction was considered a successful surgery. After 20 month of living with excruciating and debilitating pain I new this was my only chance of regaining some type of normalcy. And, even though I knew PNE would more than likely affect me for the rest of my life in one way or another, the thought of  having a 50% or more reduction in pain filled my heart with happiness and restored lost hope.

     Looking back over the last 6 month's of my recovery, I can honestly say that physically I've had my fair shares of up and downs, but emotionally and spiritually, I've amazingly managed to stay strong and this has been a true blessing during this long and very slow recovery process. It's not easy to see the progress that has been made from day to day, but compared to this time last year, and even compared to the first couple of month's post surgery, I can see and feel the differences.

     Today this is where I am in my recovery, my pain levels have significantly come down, most days I hang out in the 4-5 range, sometimes it can creep up to a 7, but not very often, and even better, I've had days where it goes as low as a 3, and I've even experienced a 2 a time or two also! It's been a long time since I've depended on the use of ice, and lately, more days than none I can go my whole day without needing to lay down to relieve the pressure and pain. Keeping the pain levels down is half the battle, so this is a HUGE accomplishment so far. Sitting is still an issue, although, since surgery I can now sit flat rather than tipping up on my hips, which has been a nice improvement. Socially, standing up in a sit down kind of a world is not my idea of fun. I'm limited to 30-60 minutes of sitting and then I'm done, the amount of time really depends on what kind of day I'm having, and what type of seating is available to sit on. My everyday challenges are vacuuming, mopping floors, and grocery shopping. Vacuuming was my favorite chore before PNE, now it's become a difficult task, some days I can get through a couple of rooms, but most days I rarely finish the room I started in. Mopping is impossible, now my kids argue over who's turn it is, and I feel my floors are only as clean as their ability, or willingness to do so. And the shopping, this is no easy task, we are a family of 7 so rarely is a trip to the store for just an item or two, it's always a full basket, and pushing a heavy basket around is really difficult and creates a lot of pain, not to mention the loading and unloading of the cart and the car...extremely exhausting all around! I usually have to bring one of my older children along or I wait until the weekend when my husband can tag along to help. The good news is that when my pain increases due to my activity, it's not long before it settles down. Before surgery once my pain hit high levels it would stick around for the rest of the day, even if I layed down, and sometimes depending on how much I over did it, I found myself dealing with a two or three day flare, but...not anymore! I love that my bad days are more like what my few and far between good days were before surgery, and that is progress worth celebrating.

     The most exciting news is...I find myself entertaining new ideas, the main one is the possibility of going to a movie with my family, and even better, just my hubby. I have only been to the movies twice since PNE found it's way into my life, the first time I literally squirmed myself out of my seat because it hurt THAT bad, and watched the movie kneeling on the nasty theater floor...eww! The second time I stood up in the back, and our two year old thought this was the greatest thing ever, he spent his time running up and down the isle between me and my husband...very annoying! With these two attempts of going to the movies I realized that it was not worth my time, it's hard to enjoy a movie while kneeling on your knees or standing in the back all by yourself. I had come to terms with the fact that going to see a movie at the theater was something I would never do again, but now this milestone is seeming more and more obtainable as I improve. All the things that once seemed lost, feels like they're in such close reach, that I'm even more determined to totally kick some PNE butt!

     I thought I'd used this post to answer some of the most commonly asked questions since returning home from my journey to Turkey for laparoscopic pudendal nerve decompression surgery. Are you ready? Let's get started!


Do I regret going to Turkey?

This is my most frequently asked question, and my answer is...ABSOLUTELY NOT! If you only knew how many doors this experience has opened for me, then you would understand why I have no regrets. (this is a post all of it's own)


How am I doing, am I better, did it work?

I think this post sums up a lot of these question, but if you're looking for a number, I'd say I've seen about a 25% improvement at this stage in recovery...YAY!


Do I take medication for the pain?

Nope, not anymore. I had terrible side effects on the medications suggested for reducing nerve pain, I have been off all my meds since last June. On occasion I use a  valium/baclofen suppository after an intense PT session, but I think I've only used three in the last 4 months that I've been doing PT.


How's my back?

Ha ha...Love this one! Ummm, it's not my back.


Do I stay in contact with the surgeon fromTurkey?

Not so much anymore, he is one of my FB friends, and if I needed anything I'm sure he'd help in any way. He's just that good!


How's my foot and leg?

My motor function is 100% improved. I still have sensation issues with some numbness on the top of my foot, but overall the sensory issue is 90%-95% improved.


What are the things I'll never do again?

This is a loaded question, because really anything is possible. But, even if I make a full recovery and it may seem like I can do anything, there are some sure things that I should avoid as to not re-injure this nerve.
Riding a bike or anything that requires straddling, horse back riding, snow mobiling, wave running, and so on. It's possible that I would not have the opportunity to work full time at a sit down job, this may or may not be too difficult. You see, I guess time will tell, and I really don't know the answer to this question quite yet.


      What I do know is that there are worse things I could be dealing with, I feel blessed that this is not a life threatening disease, I do have a choice to live, where some people don't even have that option and are literally fighting for their life everyday to stay alive. I feel blessed that I have the freedom to get up and walk, it might be hard and I may be slow at it now, but if given the choice of never to walk again or never to sit again...I'd definitely take no sitting for sure. I also feel blessed to have such amazing family and friends and for their amazing support during this trying time. I'm in a very good place and I'm still hopeful that good things are to come with some more patience.

 Thanks to everyone that has followed along during this journey, for your kind words of encouragement and endless support, it really does mean so much!

Surgery Progress April 5, 2013

     Hi everyone, I know it's been a while, in fact March managed to sneak right on by without one update, sooo sorry. In a way this really is a blessing of sorts, March proved to be an amazing month with lower pain days which means I'm up and more involved with my family for the first time in two years. So you see, as thrilled as I am, I just haven't had as much down time which in turn means very little screen time anymore. I'm very excited to share some highlights in March, so let's get started.

     I'm still tolerating PT fairly well, and strongly believe it is worth my time and hard work. I was able to start pool therapy and I'm loving this part of PT. It feels so good, it's like stepping into a very warm bath, and after all the manipulation from the regular session it's perfect for stretching and relaxing my muscles. We still do our regular session and then I do a 1/2 hour session in the pool after, all together it's two hours of therapy, but only once a week. I was finally given permission to start working on kegels to strengthen the pelvic floor, this is huge, as most who suffer with this condition know, this is a BIG no, no in the PNE world. Currently we're working on retraining my glutes to fire, I know kinda silly right, but it's my bodies way of protecting the nerve. My hamstrings have literally taken on the task of supporting and moving my core when I move and walk, and over the course of two years my hamstrings tire very easily and become very weak, especially on inclines and stairs. I have also started walking on the treadmill, I'm so pathetically slow, because the motion of walking tends to irritate everything in-between, but I'm hoping with time I will build up speed and distance. It just feel so good to move again, before surgery walking was very difficult, not only did it irritate my in-betweens, but also my pelvic floor muscles would become so tight that my stride would get shorter and shorter until I was stuck and couldn't move one leg in front of the other without experiencing severe pain. My pelvic muscles are much more relaxed now, and when I feel the tightness coming on I can simply lay down and do some stretches to calm everything down. Overall I'm happy that I'm able to start working on strength exercises, it's a good place to be in my recovery.

     The best thing about March was that it was a month full of more good days than bad. There were several days that I was completely shocked and pleasantly surprised by my pain levels. I've finally reached a point where I can get through my whole day (most days) without thinking to myself  "this really hurts, I just can't do this a second longer, and I really need to go lay down." Good days leave me feeling overwhelmed with a sense of joy, and relieved that things are slowly turning around for me, and during these times I feel so happy I could cry. I'm feeling very grateful, and with everyday that passes I'm gaining new ground, I just feel very content in so many ways, it's unbelievable!

Surgery Progress Feb. 28th 2013

     I am happy to report that February is ending on a much happier note than it started. I've regrouped and I'm focused on healing and being thankful for the small steps of progress that's been achieved at this stage of recovery.
    
     My biggest accomplishment for February has been with physical therapy. I've had a big breakthrough, it seems we've reached a point where the sessions have become less intense and much more tolerable. Me and my PT are noticing progress that was not obtainable prior to nerve decompression surgery. At this point last time there was not much more she could do for me and I had to stop treatment. Now we are entering a phase of new and exciting opportunities and I can hardly wait to see where I'll end up this time around.

     I'm still having issues with pain and difficulty with sitting, but overall my pain is becoming more easily identified to specific areas whether than so widespread. My pain levels have also evened out, most days I'm hanging out in the 4-5 range with a few exceptions. I almost hate to say this with fear of speaking out too soon, but it appears that my days of  having pain in the 8-10 range may be long behind me.

Not much else to report on at this time, just waiting for all the small steps of progress to add up to some of the bigger mile stones I've been patiently hoping and praying for.

PNE Awarenes...How You Can Help

Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE

       I have personally been affected with a debilitating and chronic pelvic pain condition called pudendal nerve entrapment, or PNE for two years. I can't even imagine feeling like this for another year, or possibly longer. So many of the PN sufferers that I have recently found through a support group have been dealing with this issue for 5, 10,  and yes, even 15 plus years. They really are true survivors, but have endured long years with chronic pelvic pain and bouncing from doctor to doctor. I have met people who have lived with this pain for several years before finally getting the correct diagnosis. Many were misdiagnosed with other pelvic conditions, and some were even told that it was all in their head. I am worried that there may be hundreds of people out there in this situation that do not know the reason as to what it is that is causing all of their pain. Too many doctors are unaware of this rare nerve condition, and because of the lack of knowledge in the medical community, too many people are isolated and suffering alone, with no where to turn for help.

      My pain is a direct result from a pelvic surgery. A routine hysterectomy, and cystocele, rectocele repair. The doctor that did my surgery was a OB/GYN, and he knew by six weeks post-op that I was having nerve issues, because my biggest complaint was of a constant burning feeling. However, my biggest concern was the inability to sit, not even for a minute. He found this very odd, but assumed that I would continue to get better. Had my doctor known about the pudendal nerve, he would have picked up on my concerns and issues that day. The instant I said "I can't sit, it is too painful", should have been his very first clue, the inability to sit without pain is the biggest indication of PNE. Instead it took another three month's before I got the diagnosis. Typically at six weeks post-op most people would be fully recovered from a surgery like this, and back to living a normal daily routine. Unfortunately, I found myself at six weeks post-op seriously struggling to get through my days. Because of my condition my doctor wanted me to come back in a month for a follow-up. So, at 10 weeks post-op, with very little improvements, he recommended for me to see a neurologist. Well, after a few phone calls to several neurologists practicing in the Salt Lake Valley, I learned that neurologists have very little knowledge and no medical training of the nerves in the pelvic area. Not one neurologist office would even schedule an appointment for me. I was completely devastated, and felt like I was getting passed along from one doctor to another, because no one knew what to do for me. What happens next is the part where I got really lucky, I just happened to stumble into the right doctors office. Why do I say that is lucky, you ask? Because the majority of PN sufferers that I have recently met, went years before finally getting diagnosed. I decided to schedule an appointment with a different OB/GYN for a second opinion. After 4 long month's of excruciating pain, I was finally given a diagnosis of a condition called PNE. She had been in practice for only four years, and during one of her residency rotations she worked with a doctor who practiced in a pelvic pain clinic. She she was able to connect my symptoms with a condition that she had never personally seen, but had read about one time.

      Unfortunately, even with a diagnosis, I found that there was very little treatments being offered to help. As most of you know, I had to travel out of state to seek advice and treatments from the few doctors who specialized in PNE. And, there is only a handful of doctors in the United States qualified to do the surgery. I traveled all the way to Istanbul, Turkey for the surgery, because of the advancements and cost. I never in a hundred years could  have ever imagined needing to go to such great lengths for help in finding relief from this chronic pain condition.

     There is a lack of knowledge in the medical community for this condition of PNE, and the treatments being offered. This rare, but chronic pelvic pain condition is often overlooked at universities and hospitals,  med students aren't even being informed of this terrible nerve condition. Me, and all the other people who suffer with PNE, have found ourselves in a situation where it is difficult to find a doctor to give us a proper diagnosis and the treatments needed.

      I am asking for your help to spread awareness regarding PNE, my support group is trying to bring awareness with a petition. Once enough signatures are received we can pass it along to all of the different organizations such as, American Society for Peripheral Nerve, American Urological Association, The American Gynecological Association, International Pelvic Pain society, American Medical Association, and several Medical Schools. 

     The goal is to get 1000 signatures, right now there is just over 550. I always get remarks from people asking what can I do, and saying how much they wish they could help. Well this is your opportunity. It would be a huge step in bringing awareness to our doctors and future doctors by just signing this for me. It literally only takes a few seconds. Just click on the link, scroll all the way down to the bottom, and it is only two questions, your name, and an email. That's all that is required. There is a place to leave a comment, but it is completely optional, and you can even put anonymous if you don't want your name to appear. Trust me, this is very real, and unfortunately, it's just in the beginning stages of awareness. I wish for no one to have to go through what I and the people in my support group have been dealing with for so long. 

      For anyone who finds my story hard to believe, and are shocked that something as simple as sitting could be so painful. And, the fact that I traveled to the other side of the world for a surgery that's not even offered in the U.S., please take a quick minute in helping us reach our goal. Pass it along and please share with your spouses, siblings, parents, friends, neighbors, and anyone who has an email that can sign. It is important to us that we are heard, and that future doctors, and the doctors currently in practice can be informed and made aware of the symptoms and the name of this condition. We need to start turning things around for future sufferers. It is time to open the eyes to the medical community of this terrible nerve condition.

http://www.ipetitions.com/petition/request-for-more-research-on-and-training-for-all/


Petition For More Research, Awareness, Training For Med School Students & Doctors For Chronic Pelvic Pain Frequently Caused By Pudendal Neuralgia/PNE