Well, now the adventure begins... (If you can call, finding a way out of my medical crisis, an adventure) I am determined to find someone who has some experience with PNE. I had anticipated my appointment with the pain specialist at the University of Utah for a few weeks, and it was finally here. I had been doing so much research in the weeks leading up to this appointment, and felt very prepared, with lots of questions and concerns. After a very thorough examination, he sadly confirmed, that I indeed had PNE. My problem was much larger than piriformis muscle syndrome, and even though I had already figured that out I my own, I was still disappointed. I knew the road to follow was not going to be an easy one. He strongly urged me to get started on some medications to slow the nerves pain response to the brain. This time, I heeded the advice about starting the medications, he explained that the nerve could become permanently damaged and become sensitized (central sensitization). That scared me more than the side effects of taking the medications, so I went home and stated that same day. (more on medications for nerve pain in a future post.) He also suggested physical therapy, he gave me a name of someone who specializes with pelvic floor conditions, including PNE. (more on physical therapy in a future post) Finally, we had a very long discussion regarding all the information I had researched online. He knew more than I had expected, I learned he was a board member for the International Pelvic Pain Society, and he was also the president for two years at one time. He knew all the doctors and treatments being offered for someone like me, and he was able to direct me more clearly on what needed to be done, and what I should avoid. Unfortunately, he was only going to be able to monitor my medication, so he referred me to a pudendal neuralgia specialist in Phoenix. Although I knew this would be a potential possibility, I still walked away completely shocked at the idea of traveling out of state for a solution to my chronic pain.
Setting up an appointment for Phoenix turned out to be another knocked to the ground experience. Just as it seemed things were looking up for me, and I had some options to explore for a chance of getting better, Phoenix soon had me in a state of devastation. When I called to set up my appointment, ( it was July 2011 for a reminder) and she said "The soonest available appointment is February 22, 2012" I thought "did I really just hear that right" I repeated what I thought I had just heard, and "yes", she really did say February 22. What!!!? Seven months, how am I suppose to do that, it had already been six months and now you want me to wait seven more? Holly crap, not only is my wait longer than the amount of time I had already been suffering with this condition, but it also takes me past my one year mark of the original surgery. Why seven months? I don't understand, She explained that he is only able to see one PN patient a week, because of the amount of time PN patients take up. The appointment would be a 90 min. consultation, and he doesn't have time to schedule that out more than once a week. Wow! Even though I was not happy about how long I would have to wait for this appointment, I went ahead and set it up. There were a couple of reasons that I wanted this appointment in Phoenix. In doing all my research I had read many great things about this specialist. Also, he did accept my insurance, and of the five specialist in the United States, Phoenix was the closest to travel for me, and that's a big deal, especially when sitting creates excruciating pain.
Some instructions given to me over the phone for this appointment was to first, I needed to schedule an appointment with a physical therapist that he works with, she would do an evaluation of my condition to send to the doctor. I explained I already have a physical therapist here, could I send you my records? No, you have to be evaluated by the one we recommend prior to your visit with the doctor, either the day before or the morning of your appointment. Second, you need to schedule a MRI as well, also the day before or the morning of your appointment. After jotting down my instructions, I asked if I could be put on a cancellation list, you know, just in case something happen to pop up in the next few month's. Good, she was able to do that for me.
In September, after a couple of months, I received a phone call from the Phoenix office. The girl starts to explain that they want to try something different in scheduling appointments for the doctors PN patients. Okay, I'm listening... instead of a 90 min. consultation appointment with the doctor, you would meet with his PA (physician assistant) the day before, to go over your history, and for an examination. And then, meet with the doctor the next day for a thirty min. appointment. This would cut back on the time the doctor would have to spend with his PN patients and therefore would result in seeing more than one a week. I had the option of sticking with my original date, or I could change to this new system the office was trying out, and come in on December 5th. That's almost a three month difference, without any thought, I had her change my appointment. I was totally fine going with the new scheduling system for PN patients, it still allowed me to visit with the specialist, and it would be in the year 2011. Finally, I see the light, December 5th seemed just around the corner, as February had still seemed so far away.
Well, in October, I started making arrangements for the instructions that revolved around this appointment. I called back to the office to find out some more information regarding my MRI. The MRI would be at St. Josephs hospital, but I could not just call up the radiology department of St. Josephs and schedule a MRI for myself, I needed a doctors order or referral. The specialist's office was unable to do this for me, since I was not an established patient of this office yet. Well that just seems silly, you asked me to get the MRI prior to my appointment, but you won't help me get it scheduled? Are you kidding me... so annoying! So I give the specialist at the University of Utah's office a call, and ask for some help in getting a MRI scheduled out of state. She was reluctant at first, she had never scheduled an MRI for an out of state facility. So I call back to Phoenix, and get instructions for exactly what needed to be done, in order to get this MRI scheduled. This was a two week process, and a giant pain in the you know what. After a couple of faxes, and finally, a written order from a doctor that I was established with, I was finally able to call and set up this MRI that I needed for my appointment out of state. When I called the radiology department to schedule, they asked "do you have a doctors order?" "Yes, yes I do," (only after jumping through several hoops) I did have the order. So we proceed with the scheduling, She said, "we can get you in the following week." "Wait, I actually need my MRI for December," "oh," she says, "I don't think we can schedule that far out." So I then have to explain, that I am flying from out of state, and I need this scheduled one day prior to an appointment that I have already had to wait for three months now, so, when will December's schedule be out, so I can get this scheduled? She says "ummm, let me see here" she was able to go to December on her schedule, she had just never had to go so far ahead before in order to schedule a procedure. She got me on the calendar, and finally, I was set up for a MRI one day prior to my appointment with the specialist, whew.... after all of that, I was relieved. Calling up to get my appointment with the physical therapist was no biggie, they were able to schedule me on the same day as my MRI for later in the morning. Only bad news, the physical therapist doesn't take insurance, the appointment was going to cost us $275 paid in full, prior to the appointment.
So, Phoenix goes as follows, fly in on Dec. 4th, MRI scheduled at 7:30 am on the 5th, physical therapy appointment at 11:00 am, and appointment with the specialists PA, at 3:00. On Dec.6th, I finally meet with the specialist in the morning, and fly home that afternoon. Everything is set, I just need to wait another seven weeks. Waiting is hard, especially when you're in pain.
Specialist Here And Specialist Where? (Part 2)
Sunday, September 30, 2012
Tuesday, September 25, 2012
We Cry, We Fall Apart, And We Make a New Plan
Well after my giant breakdown, and I had gathered myself together, thanks to my husband and home teachers, my mind was clear and I could now go into the let's fix this mode. I was able to do a little more research, but I found it was too overwhelming. I wasn't sure where to begin. I decided to call and get some second opinions about what I should do. Now that I had a name for what was going on in my in-betweens, I thought I would start with the doctor who did the surgery, and I also called my internal medicine specialist, I had been going to him since I was twelve, to get any advice or information.
I had already talked about a treatment plan with the doctor who diagnosed me, this doctor suggested trigger point injections. Where? You might be thinking? Yep! You guessed it, right down in the in-betweens. She also suggested some medications that would help control the pain. I told her I would think about it and schedule an appointment later if I decided to try this type of treatment. (Injections in the yah yah, holly crap, I couldn't even imagine!)
First, was my ob/gyn that had did the surgery, he said he was "dumbfounded, and perplexed, and for a lack of better words, ignorant" these were his exact words. He knew of the pudendal nerve, but that was all. He had never had a patient come out of surgery with any type of nerve damage. He wasn't sure if PNE was actually the issue. The best he could do for me was to call up at the University of Utah and talk to someone in the pelvic pain clinic, to see if anyone there could help. I then talked to him about the treatment plan that was discussed with my other doctor, he said I should try the trigger point injection, it may be helpful in decreasing the pain. He also thought starting some medication would be worth a shot. However, he was unable to prescribe this medication to me, because it required close monitoring, and he wasn't exactly sure how to dose it out correctly. He said he would get back to me after speaking with the specialist.
Next, my doctor that had known me for practically my whole life. He was completely shocked, when I shared the news. He also thought trigger point injections wouldn't be such a bad idea. I talked to him about the medication, and he was able to work out a dosing schedule to get me started. But nothing more was offered, he just didn't have the expertise to help me with anymore then managing the medication. I went to fill my prescription for neurontin or gabapentin for generic. This drug is used to treat seizures and nerve pain. After reading the side effects of this drug, I chickened out, and decided not to start it.
I had these appointments in the same week, and after a couple of days, I heard back from my ob/gyn. He called to let me know he had spoken to someone at the University of Utah. After his discussion with the specialist, they thought maybe it could be piriformis muscle syndrome. He said this condition is a lot easier to treat, and his assistant would be calling me to schedule an appointment. The assistant called me the next day, good news they could see me the following week, bad news, I was not covered through my insurance at the University of Utah. She said I could come and pay for it out of pocket, it would cost me around $300 for a new patient consultation. Wow, I think we'll figure something else out, especially since the day prior, I had looked piriformis muscle syndrome up, and I knew this was not what was going on with me. I'll pass spending $300 on something that I already knew.
So, I decide to take the advice of my doctors and give trigger point injections a try. I called to set up this appointment, it was for the following week. In the meantime I continued with the research. It seemed my only options would be, to travel out of state and visit with only what was a handful of doctors that specialized in PNE throughout the United States. Now, going up to the University wasn't sounding so bad for $300, it was local and cheaper (and less painful) than flying out of state. I called back up there to schedule an appointment, she told me her first available was in twelve weeks.What! Yesterday you were going to get me in the next week. She explained only doctors can set up appointments for their patients to see the specialist sooner. I couldn't believe it! I called my ob/gyns office and explained my situation, at first they seemed unwilling to help, after not accepting "no" for an answer, I explained my situation again. They would have to see what they could do and call me back. They called later and had arranged for me to see him in almost three weeks. Fine, I guess I'll take it, it's not next week, but three weeks is a lot better than three months.
Trigger point injection day, I was seriously so scared! Knowing that this was not going to be a pleasant experience, my doctor called some medications (Valium and Lidocaine) into the pharmacy to help get me through this procedure. She instructed me to soak some cotton balls in the Lidocaine and put them right in the yah yah to help things get a little numb prior to the injections. And, the Valium was to help calm me down and relax my muscles. I had never taken Valium before so I was nervous about the way this would affect me. My husband took the afternoon off for some much needed support and I'm so glad he did! By far, one of the most painful procedures to date! I wasn't feeling any different from the Valium, I don't think it had kicked in yet, because I was still extremely nervous, and very tense. My husband grab one hand, and her assistant the other, and we began. I think my doctor did about six injections in the yah yah, and the area surrounding my yah yah. So much for the Lidocaine, I felt four of the six injections, it was excruciating pain, like a hundred bee stings, followed by intense burning. The good thing, she was injecting a long lasting anesthetic, she thought putting the nerves to sleep in my in-betweens would give everything down there a chance to rest, and the idea is that the nerves would possibly reset themselves, and after waking up there would be some relief. After a few minutes the injections had kicked in and everything went numb in my in-betweens. It was a very intense procedure, I had tensed up so bad throughout the procedure that by the time we were through I was literally trembling. I had to lay there a few minutes to calm down, my body was in shock and I'm pretty sure I will be forever traumatized over this whole ordeal. I had anticipated that this was not going to be the most pleasant of procedures, but it was so much worse than I had expected. Although I was numb, it still hurt to sit on the ride home. After an hour things started to wake-up, I didn't think things would become worse than what I had already experienced, but it did. It was a failed attempt, plus I was now dealing with an unbelievable flare from the procedure, I was in bed for the next three days with my new best friend, Ice. Let's just say, I will never sign up for one those again, Never!!!
I had already talked about a treatment plan with the doctor who diagnosed me, this doctor suggested trigger point injections. Where? You might be thinking? Yep! You guessed it, right down in the in-betweens. She also suggested some medications that would help control the pain. I told her I would think about it and schedule an appointment later if I decided to try this type of treatment. (Injections in the yah yah, holly crap, I couldn't even imagine!)
First, was my ob/gyn that had did the surgery, he said he was "dumbfounded, and perplexed, and for a lack of better words, ignorant" these were his exact words. He knew of the pudendal nerve, but that was all. He had never had a patient come out of surgery with any type of nerve damage. He wasn't sure if PNE was actually the issue. The best he could do for me was to call up at the University of Utah and talk to someone in the pelvic pain clinic, to see if anyone there could help. I then talked to him about the treatment plan that was discussed with my other doctor, he said I should try the trigger point injection, it may be helpful in decreasing the pain. He also thought starting some medication would be worth a shot. However, he was unable to prescribe this medication to me, because it required close monitoring, and he wasn't exactly sure how to dose it out correctly. He said he would get back to me after speaking with the specialist.
Next, my doctor that had known me for practically my whole life. He was completely shocked, when I shared the news. He also thought trigger point injections wouldn't be such a bad idea. I talked to him about the medication, and he was able to work out a dosing schedule to get me started. But nothing more was offered, he just didn't have the expertise to help me with anymore then managing the medication. I went to fill my prescription for neurontin or gabapentin for generic. This drug is used to treat seizures and nerve pain. After reading the side effects of this drug, I chickened out, and decided not to start it.
I had these appointments in the same week, and after a couple of days, I heard back from my ob/gyn. He called to let me know he had spoken to someone at the University of Utah. After his discussion with the specialist, they thought maybe it could be piriformis muscle syndrome. He said this condition is a lot easier to treat, and his assistant would be calling me to schedule an appointment. The assistant called me the next day, good news they could see me the following week, bad news, I was not covered through my insurance at the University of Utah. She said I could come and pay for it out of pocket, it would cost me around $300 for a new patient consultation. Wow, I think we'll figure something else out, especially since the day prior, I had looked piriformis muscle syndrome up, and I knew this was not what was going on with me. I'll pass spending $300 on something that I already knew.
So, I decide to take the advice of my doctors and give trigger point injections a try. I called to set up this appointment, it was for the following week. In the meantime I continued with the research. It seemed my only options would be, to travel out of state and visit with only what was a handful of doctors that specialized in PNE throughout the United States. Now, going up to the University wasn't sounding so bad for $300, it was local and cheaper (and less painful) than flying out of state. I called back up there to schedule an appointment, she told me her first available was in twelve weeks.What! Yesterday you were going to get me in the next week. She explained only doctors can set up appointments for their patients to see the specialist sooner. I couldn't believe it! I called my ob/gyns office and explained my situation, at first they seemed unwilling to help, after not accepting "no" for an answer, I explained my situation again. They would have to see what they could do and call me back. They called later and had arranged for me to see him in almost three weeks. Fine, I guess I'll take it, it's not next week, but three weeks is a lot better than three months.
Trigger point injection day, I was seriously so scared! Knowing that this was not going to be a pleasant experience, my doctor called some medications (Valium and Lidocaine) into the pharmacy to help get me through this procedure. She instructed me to soak some cotton balls in the Lidocaine and put them right in the yah yah to help things get a little numb prior to the injections. And, the Valium was to help calm me down and relax my muscles. I had never taken Valium before so I was nervous about the way this would affect me. My husband took the afternoon off for some much needed support and I'm so glad he did! By far, one of the most painful procedures to date! I wasn't feeling any different from the Valium, I don't think it had kicked in yet, because I was still extremely nervous, and very tense. My husband grab one hand, and her assistant the other, and we began. I think my doctor did about six injections in the yah yah, and the area surrounding my yah yah. So much for the Lidocaine, I felt four of the six injections, it was excruciating pain, like a hundred bee stings, followed by intense burning. The good thing, she was injecting a long lasting anesthetic, she thought putting the nerves to sleep in my in-betweens would give everything down there a chance to rest, and the idea is that the nerves would possibly reset themselves, and after waking up there would be some relief. After a few minutes the injections had kicked in and everything went numb in my in-betweens. It was a very intense procedure, I had tensed up so bad throughout the procedure that by the time we were through I was literally trembling. I had to lay there a few minutes to calm down, my body was in shock and I'm pretty sure I will be forever traumatized over this whole ordeal. I had anticipated that this was not going to be the most pleasant of procedures, but it was so much worse than I had expected. Although I was numb, it still hurt to sit on the ride home. After an hour things started to wake-up, I didn't think things would become worse than what I had already experienced, but it did. It was a failed attempt, plus I was now dealing with an unbelievable flare from the procedure, I was in bed for the next three days with my new best friend, Ice. Let's just say, I will never sign up for one those again, Never!!!
Sunday, September 23, 2012
PNE Is Life Altering, Simple Pleasures Lost
PNE had already taken so much from me and my family by this point, and now our future with PNE was going to take a lot of adjusting, not just for me, but for my family too. All of the things I hadn't been able to do for the last four months was really starting to add up. I'm not sure I'd ever realized all the adjustments one would have to go through when suffering through debilitating chronic pain, plus losing the ability to sit. I didn't even know it was possible that a person could lose this ability! Here are some of the basic everyday things that I took for granted prior to PNE.
First, family dinner, when you can't sit down with your family to eat it starts to make you feel like your not a part of the family, While they're all sitting around the table, I'm standing at the counter by myself, not fun.
Second, reading or playing with your kids. To just sit on the couch, their bed or the floor to read with my kids was not even an option. Many books ended up in my bed, where I spent much of my time, sometimes we would lay on our tummy's on the family room floor, or I would stand at the counter and they would sit on the bar stools for homework or other things. Definitely not as cozy. I had a one and a half year old at the time, he loved reading books, he would always slap his hand on the couch and demand for me to sit. This was his little way of telling me he wanted a story read to him or to just be held. I would have to redirect him to the floor to our tummy's, he did adjust to this new style, but seemed a little confused at first. Most of his toys required the need to sit down next to him, and help with sorting and placement, we would lay on our tummy's for this too. Although laying on my tummy was a lot more comfortable than sitting on my tush, laying on the stomach can start to become very uncomfortable too. My one year old had the hardest time of all of my kids with me not being able to sit. That took away climbing onto my lap to cuddle or comfort him, it took away those tender moments we share with our little ones, when you can hold them in your arms and take their sweet little beings in with every breath. He would climb up on a stool or chair and scream "hold me!" He learned that was the only way I could, with something else supporting his weight. It still breaks my heart knowing how much his life had changed, and everything I lost out on with my last baby.
Third, going to church, that's three hours of sitting. I was lucky if I could make it through the first twenty minutes before needing to get up and stand in the back. I didn't like standing in the back all by myself, I felt silly and lonely. I would usually leave after sacrament meeting, because standing in one place for too long created a lot of pressure and pain. I didn't like missing out on my church meetings, I started to feel I was no longer a part of this huge organization that shaped and influenced me, in all that I did, and all that I was.
Fourth, going to the movies, with my family or just my husband. I just couldn't do it. So I would have to say no when the kids begged to go see something that had just came out. We had a friend call and invite us to the drive-ins. Not even thinking I said "sure" that sounds fun" and told her we would be there. After sometime I realized "wait, I can't do that, I can't sit," and that's just too long to stand. So off the family went without me. I remember the movie Cars 2 was coming out, and the kids knew we would all go to see that together. I remember the pre-views would air on TV for a few months before coming to the theaters. The kids were so excited, the movie was opening in June, I thought for sure I'd be sitting by then. Nope, my family had to go without me again.
Fifth, Our annual snowmobiling vacation to Island Park, the kids look so forward to this trip every year. When I went in for surgery we looked at the dates to see if this would change our trip that year. I would be 5 weeks post-op, by the time our trip arrived, we thought that would be plenty of time for me to recover...Nope! Watching my family pull out of the driveway without me was so heartbreaking. Even a couple of days prior, after learning I was unable to go with them that year, one of my children said "well it's settled, if mom can't go, then none of us go, it's a family vacation, and we have to go as a family." He really meant it, he was so sweet. I had to talk him into going without me and he really struggled with that decision.
Along with all the big things came a lot of small things too. I had signed up to help with one of my children's field trips. It was a month away, I didn't even occur to me that it would be a problem by the time I was needed. My little guy was so disappointed when I was unable to go, the field trip was a play at the children's theater, there was no way I could this. I called the teacher because sometimes they have plenty of volunteers, but not this time, so I called my mom and she filled in for me. Thank you mom!
I missed sitting around our fire pit on late spring nights, and sitting on the glider of our front porch, I missed going on bike rides, and sitting at the counter every morning to read the paper, I missed sitting in the bathroom and watching my baby play during bath time, and sitting to go out to eat. I really missed the intimate connection meant just for me and my husband. To lay next to the man I love so dearly night after night, knowing my hearts deepest desire had been taken away from me, and may never be fulfilled again, well there really are no words.
All of this in four months, it was really hard. I just wanted nothing more, then to "sit" down and relax, and to hang out with family and friends like a normal person. The only thing that made it easier was that I thought it was all temporary. Then I learned my condition was actually a permanent situation, and I seen all the great things in life pass right by me, no more simple pleasures. The fact that I would never sit for the three hours of church again, or sit down to play games with the kids, or go to a movie, or ride a bike, or go to the hair salon, and take a road trip or go on vacation was too hard to imagine. It all seemed completely unfair. The thought of my family doing any of this without me while I just sat on sidelines, was a hard pill to swallow, but I couldn't ask them not to do any of this just because I couldn't. So life goes on, even though I am unable to move along with it.
First, family dinner, when you can't sit down with your family to eat it starts to make you feel like your not a part of the family, While they're all sitting around the table, I'm standing at the counter by myself, not fun.
Second, reading or playing with your kids. To just sit on the couch, their bed or the floor to read with my kids was not even an option. Many books ended up in my bed, where I spent much of my time, sometimes we would lay on our tummy's on the family room floor, or I would stand at the counter and they would sit on the bar stools for homework or other things. Definitely not as cozy. I had a one and a half year old at the time, he loved reading books, he would always slap his hand on the couch and demand for me to sit. This was his little way of telling me he wanted a story read to him or to just be held. I would have to redirect him to the floor to our tummy's, he did adjust to this new style, but seemed a little confused at first. Most of his toys required the need to sit down next to him, and help with sorting and placement, we would lay on our tummy's for this too. Although laying on my tummy was a lot more comfortable than sitting on my tush, laying on the stomach can start to become very uncomfortable too. My one year old had the hardest time of all of my kids with me not being able to sit. That took away climbing onto my lap to cuddle or comfort him, it took away those tender moments we share with our little ones, when you can hold them in your arms and take their sweet little beings in with every breath. He would climb up on a stool or chair and scream "hold me!" He learned that was the only way I could, with something else supporting his weight. It still breaks my heart knowing how much his life had changed, and everything I lost out on with my last baby.
Third, going to church, that's three hours of sitting. I was lucky if I could make it through the first twenty minutes before needing to get up and stand in the back. I didn't like standing in the back all by myself, I felt silly and lonely. I would usually leave after sacrament meeting, because standing in one place for too long created a lot of pressure and pain. I didn't like missing out on my church meetings, I started to feel I was no longer a part of this huge organization that shaped and influenced me, in all that I did, and all that I was.
Fourth, going to the movies, with my family or just my husband. I just couldn't do it. So I would have to say no when the kids begged to go see something that had just came out. We had a friend call and invite us to the drive-ins. Not even thinking I said "sure" that sounds fun" and told her we would be there. After sometime I realized "wait, I can't do that, I can't sit," and that's just too long to stand. So off the family went without me. I remember the movie Cars 2 was coming out, and the kids knew we would all go to see that together. I remember the pre-views would air on TV for a few months before coming to the theaters. The kids were so excited, the movie was opening in June, I thought for sure I'd be sitting by then. Nope, my family had to go without me again.
Fifth, Our annual snowmobiling vacation to Island Park, the kids look so forward to this trip every year. When I went in for surgery we looked at the dates to see if this would change our trip that year. I would be 5 weeks post-op, by the time our trip arrived, we thought that would be plenty of time for me to recover...Nope! Watching my family pull out of the driveway without me was so heartbreaking. Even a couple of days prior, after learning I was unable to go with them that year, one of my children said "well it's settled, if mom can't go, then none of us go, it's a family vacation, and we have to go as a family." He really meant it, he was so sweet. I had to talk him into going without me and he really struggled with that decision.
Along with all the big things came a lot of small things too. I had signed up to help with one of my children's field trips. It was a month away, I didn't even occur to me that it would be a problem by the time I was needed. My little guy was so disappointed when I was unable to go, the field trip was a play at the children's theater, there was no way I could this. I called the teacher because sometimes they have plenty of volunteers, but not this time, so I called my mom and she filled in for me. Thank you mom!
I missed sitting around our fire pit on late spring nights, and sitting on the glider of our front porch, I missed going on bike rides, and sitting at the counter every morning to read the paper, I missed sitting in the bathroom and watching my baby play during bath time, and sitting to go out to eat. I really missed the intimate connection meant just for me and my husband. To lay next to the man I love so dearly night after night, knowing my hearts deepest desire had been taken away from me, and may never be fulfilled again, well there really are no words.
All of this in four months, it was really hard. I just wanted nothing more, then to "sit" down and relax, and to hang out with family and friends like a normal person. The only thing that made it easier was that I thought it was all temporary. Then I learned my condition was actually a permanent situation, and I seen all the great things in life pass right by me, no more simple pleasures. The fact that I would never sit for the three hours of church again, or sit down to play games with the kids, or go to a movie, or ride a bike, or go to the hair salon, and take a road trip or go on vacation was too hard to imagine. It all seemed completely unfair. The thought of my family doing any of this without me while I just sat on sidelines, was a hard pill to swallow, but I couldn't ask them not to do any of this just because I couldn't. So life goes on, even though I am unable to move along with it.
Friday, September 21, 2012
Fake It Till You Make It...
So, the game begins. I am now 8 weeks post-op and still only feeling partially recovered, but I just can't lay around all day, and do nothing! Somehow, I need to move forward. I decided I would act like everything was fine, and just do my best to push through the pain. I would do everything that I'd typically do prior to surgery in an attempt to have things seem more normal again. (After all, I'm through the worst part of it, and in a couple of more weeks I'll be feeling great...right? "so I thought.") However my couple of weeks had soon turned into a couple of months. I knew something wasn't right, but I had no idea of the severity. I still believed once we figured out what was wrong it would be somewhat simple to fix.
Now, this is probably why I had completely fallen apart after learning the news of my new condition. I was trying so hard to be the person I no longer was. I was trying to stay optimistic and have a positive attitude despite my situation, and I truly thought I was going to get better. For the most part everything looks normal from the outside there's not one particular thing that stands out too obviously when you have PNE. Only that I avoided sitting, and if I did sit, I sat so I was leaning up on my hip. I'm sure that may have looked off at times to some people, or maybe they just thought "that girl is rude, she's practically taking up two seats, can't she just sit up-right." So to a certain degree, it was really easy to pretend things had gotten back to normal, but physically I was dying inside. The more I did, the more the pain would intensify, and as the day went on the pain became unbearable, and it's really hard to push through pain like that. So, on that day I learned my devastating news I was tired of pretending that I was okay, it's so exhausting being something your not, and out of sheer exhaustion and disbelief I broke down.
I definitely was not the same person I once was. The surgery changed me in every way, I just didn't want to accept it, I was in denial. I was desperately holding on to what once was, by just a thread. I desperately wanted everything to go back to normal. On that day, I finally had to face the truth, there was nothing pretty about this truth. The truth about PNE is that "it's unbearably painful and it really sucks all the joy out of life" and I really hated my life with PNE.
I couldn't fight for the old me anymore, the old me no longer existed. Feeling completely defeated, I was finally forced to throw in the towel. The fake it till you make it game was officially over!
Now, this is probably why I had completely fallen apart after learning the news of my new condition. I was trying so hard to be the person I no longer was. I was trying to stay optimistic and have a positive attitude despite my situation, and I truly thought I was going to get better. For the most part everything looks normal from the outside there's not one particular thing that stands out too obviously when you have PNE. Only that I avoided sitting, and if I did sit, I sat so I was leaning up on my hip. I'm sure that may have looked off at times to some people, or maybe they just thought "that girl is rude, she's practically taking up two seats, can't she just sit up-right." So to a certain degree, it was really easy to pretend things had gotten back to normal, but physically I was dying inside. The more I did, the more the pain would intensify, and as the day went on the pain became unbearable, and it's really hard to push through pain like that. So, on that day I learned my devastating news I was tired of pretending that I was okay, it's so exhausting being something your not, and out of sheer exhaustion and disbelief I broke down.
I definitely was not the same person I once was. The surgery changed me in every way, I just didn't want to accept it, I was in denial. I was desperately holding on to what once was, by just a thread. I desperately wanted everything to go back to normal. On that day, I finally had to face the truth, there was nothing pretty about this truth. The truth about PNE is that "it's unbearably painful and it really sucks all the joy out of life" and I really hated my life with PNE.
I couldn't fight for the old me anymore, the old me no longer existed. Feeling completely defeated, I was finally forced to throw in the towel. The fake it till you make it game was officially over!
Wednesday, September 19, 2012
Pudendal Nerve Entrapment...A BIG Headache In My Pelvis
"A Headache in the Pelvis" that's the name of the book my physical therapist recommended. The title is a great description of what I deal with daily. How exactly has this been such a headache for me and my family? Let me explain....
Initially after surgery I just couldn't sit, not even for a few seconds, not even reclined. The pain I would describe as a constant, intense burning sensation, in the most sensitive and private area of my body. If I tried to sit the pain would intensify and it felt as if a metal fish hook had pierced through my left side of my in-between's and was being pulled with a sharp, stinging sensation. Let's just say, ice was my best friend for a very long time, I was totally addicted. I also lived in the tub, most days up to three times, the hot water was as calming as the ice. My lower back was just as irritated as my in-between's. I couldn't even lay flat on my back, laying on my side and stomach was the only comfortable position for me. Standing was also an issue, I would stand long enough to go downstairs to my kitchen for something quick to eat, and hurry back to bed. Even that was too much. Standing created a deep ache and intense pressure that was only relieved by laying down. And then there is all of the bathroom issues that come along with this condition, I'll spare the details, but I'm sure you could only imagine. In one word "terrifying" I'll leave it at that.
Around my five weeks post-op I finally could tolerate a little bit of semi-sitting, but not like a normal person. I would lean so that all my weight would be on one hip or the other. Although I had somewhat adapted myself to my situation, I was still very uncomfortable on my hip, I could only sit like this for about 10 minutes, but it sure beat laying in bed all day. I was sooo over that! Sitting in an upright position wasn't even an option.
Week by week, I started to make a little bit of progress, however it seemed especially slow. At my six week post-op appointment, I drove myself, hooray! This was my first attempt at driving since surgery. I reclined the driver seat back more than I normally would, I pushed my left foot and leg against the floor to lift my pelvis up from the seat, and then I tipped my pelvis so all the weight went on my right hip, and used the arm rest to prop myself up. My shoulders and head are more lined up with the rear view mirror if that gives you any idea how much I tipped myself. Probably not the safest way to drive, but I was too ashamed to ask for a ride again, especially since by six weeks most people are usually feeling back to themselves.
By six weeks I was losing patience, spending the majority of my days in bed suffering with chronic pelvic pain was not part of the deal after this surgery! I was suppose to be fully recovered and back into my normal day to day routine. I think my husband and kids were officially over it, and they began carrying on without me (They didn't have a choice). They were growing impatient with my slow recovery and seemed annoyed that I wasn't involved and helping out anymore, and that I wasn't able to come along and join them for anything. They desperately needed me to start getting back into the groove of things, and I desperately needed my life to return to normal again. But, there was one very big problem...I was stuck in the middle of this vicious cycle. The more I did, the more I hurt, and the more I hurt, the more time I spent in bed, "with ice of course." It totally sucked!
At seven and half weeks post-op I was feeling very overwhelmed by just thinking about and knowing all of the important and special events that were quickly approaching. I was too consumed by my pain and the very thought of accomplishing even the simplest of task seemed impossible and completely daunting to me. In a week and a half my third child who had turned eight in March was going to be baptized. I wasn't sure how I was going to pull this one off. This huge mile stone comes with a lot of planning and work, which entailed a luncheon for 40 plus family members and friends afterwards. Two weeks later it was Easter which is another huge responsibility for a mother of five children. And then two birthday party's within a week of Easter, my husband's and my daughter's. Then, one week after that was Mothers Day. And, my responsibility with my church calling as a visiting teaching coordinator, I was up to my eyeballs in visiting teaching interviews, and planning June's Visiting Teaching Workshop. And the spring sports, I usually have three or four of the five kids involved in something.
Wow! How am I going to do all of this? It was all I could do to get myself to the bathroom and showered and to get down the stairs to the kitchen for a quick bite to eat. These are all things you just can't put off, as much as I wanted to put everything coming up on hold, I knew it wasn't realistic. Unfortunately life just keeps moving forward, regardless of how you're feeling. Now comes the balancing act, of being a mother, and a wife, and taking care of all the responsibility's that come with keeping up a home for my large family, on top of learning to manage and cope with chronic and debilitating pelvic pain. This is when the fake it till you make it game begins. I think as mothers we've all been there, I've just never had to play this hard!
Initially after surgery I just couldn't sit, not even for a few seconds, not even reclined. The pain I would describe as a constant, intense burning sensation, in the most sensitive and private area of my body. If I tried to sit the pain would intensify and it felt as if a metal fish hook had pierced through my left side of my in-between's and was being pulled with a sharp, stinging sensation. Let's just say, ice was my best friend for a very long time, I was totally addicted. I also lived in the tub, most days up to three times, the hot water was as calming as the ice. My lower back was just as irritated as my in-between's. I couldn't even lay flat on my back, laying on my side and stomach was the only comfortable position for me. Standing was also an issue, I would stand long enough to go downstairs to my kitchen for something quick to eat, and hurry back to bed. Even that was too much. Standing created a deep ache and intense pressure that was only relieved by laying down. And then there is all of the bathroom issues that come along with this condition, I'll spare the details, but I'm sure you could only imagine. In one word "terrifying" I'll leave it at that.
Around my five weeks post-op I finally could tolerate a little bit of semi-sitting, but not like a normal person. I would lean so that all my weight would be on one hip or the other. Although I had somewhat adapted myself to my situation, I was still very uncomfortable on my hip, I could only sit like this for about 10 minutes, but it sure beat laying in bed all day. I was sooo over that! Sitting in an upright position wasn't even an option.
Week by week, I started to make a little bit of progress, however it seemed especially slow. At my six week post-op appointment, I drove myself, hooray! This was my first attempt at driving since surgery. I reclined the driver seat back more than I normally would, I pushed my left foot and leg against the floor to lift my pelvis up from the seat, and then I tipped my pelvis so all the weight went on my right hip, and used the arm rest to prop myself up. My shoulders and head are more lined up with the rear view mirror if that gives you any idea how much I tipped myself. Probably not the safest way to drive, but I was too ashamed to ask for a ride again, especially since by six weeks most people are usually feeling back to themselves.
By six weeks I was losing patience, spending the majority of my days in bed suffering with chronic pelvic pain was not part of the deal after this surgery! I was suppose to be fully recovered and back into my normal day to day routine. I think my husband and kids were officially over it, and they began carrying on without me (They didn't have a choice). They were growing impatient with my slow recovery and seemed annoyed that I wasn't involved and helping out anymore, and that I wasn't able to come along and join them for anything. They desperately needed me to start getting back into the groove of things, and I desperately needed my life to return to normal again. But, there was one very big problem...I was stuck in the middle of this vicious cycle. The more I did, the more I hurt, and the more I hurt, the more time I spent in bed, "with ice of course." It totally sucked!
At seven and half weeks post-op I was feeling very overwhelmed by just thinking about and knowing all of the important and special events that were quickly approaching. I was too consumed by my pain and the very thought of accomplishing even the simplest of task seemed impossible and completely daunting to me. In a week and a half my third child who had turned eight in March was going to be baptized. I wasn't sure how I was going to pull this one off. This huge mile stone comes with a lot of planning and work, which entailed a luncheon for 40 plus family members and friends afterwards. Two weeks later it was Easter which is another huge responsibility for a mother of five children. And then two birthday party's within a week of Easter, my husband's and my daughter's. Then, one week after that was Mothers Day. And, my responsibility with my church calling as a visiting teaching coordinator, I was up to my eyeballs in visiting teaching interviews, and planning June's Visiting Teaching Workshop. And the spring sports, I usually have three or four of the five kids involved in something.
Wow! How am I going to do all of this? It was all I could do to get myself to the bathroom and showered and to get down the stairs to the kitchen for a quick bite to eat. These are all things you just can't put off, as much as I wanted to put everything coming up on hold, I knew it wasn't realistic. Unfortunately life just keeps moving forward, regardless of how you're feeling. Now comes the balancing act, of being a mother, and a wife, and taking care of all the responsibility's that come with keeping up a home for my large family, on top of learning to manage and cope with chronic and debilitating pelvic pain. This is when the fake it till you make it game begins. I think as mothers we've all been there, I've just never had to play this hard!
Monday, September 17, 2012
When Hope Is Shattered (part 2)
Once I made it out to my car, I used the time to finally be whatever it was that I needed to be. Feeling sheer heartbreak, and mostly shock and disbelief, I cried, and I cried, my cry came with awful sounds, sounds are never good when accompanied with tears. I think with every step from the office, a piece of me was left behind, to where I felt completely stripped down, and completely vulnerable. My world was definitely spiraling out of control, all my hopes had suddenly came crashing down, everything about me seemed lost. In an instant I found myself somewhere unrecognizable, somewhere dark and lonely, I didn't know how I was going to find a way out of this hole of despair that I found myself in. I never felt more alone and scared "how will I ever move past this devastation", it seemed impossible.
I was not at all prepared for news like that. I had no idea nerves could become so severely damaged with the surgery I had. I had no idea nerves could create such chaos in our in-betweens. It was never discussed with me prior to going in for surgery, what a terrible complication to suffer. I should have been informed of this rare complication, but I had absolutely no clue what so ever.
I pulled myself together the best I could, so I could drive home. I couldn't turn off the tears they just wouldn't stop. I felt so bad for my babysitter, I had just went through the "ugly" cry and still had tears streaming down my face when I walked through the door, all I could say was "I just received some terrible news, and I am just trying to cope with and process what I just learned."
I went straight to my computer, because that's where you go when you need more information. I typed in pudendal nerve entrapment and began to read. It described my symptoms exactly, how awful! I had a hard time processing what I was reading. I would read a few sentences and feel as if I was going to vomit, walk away, and come back and try reading some more, it was useless, it was way too much for me to take in, I was too overwhelmed by what I was reading and gave up.
I continued to cry for the next four days. I cried in the shower, in the car, while making dinner, I cried myself to sleep, no matter how much I tried I couldn't pull myself together. I was in bad shape, I was out of control, and needed so desperately to find a way out of this dark hole I was stuck in. I decided to ask my husband for a blessing, so we called our home teachers and they were over to the house within twenty minutes. Thank you home teachers! Blessings are very powerful, this blessing definitely gave me some much needed strength, and peace, and with that I became grounded once again. My only question? "Why did I wait so long?" I know better, so I thought.
So thankful for the priesthood.......
I was not at all prepared for news like that. I had no idea nerves could become so severely damaged with the surgery I had. I had no idea nerves could create such chaos in our in-betweens. It was never discussed with me prior to going in for surgery, what a terrible complication to suffer. I should have been informed of this rare complication, but I had absolutely no clue what so ever.
I pulled myself together the best I could, so I could drive home. I couldn't turn off the tears they just wouldn't stop. I felt so bad for my babysitter, I had just went through the "ugly" cry and still had tears streaming down my face when I walked through the door, all I could say was "I just received some terrible news, and I am just trying to cope with and process what I just learned."
I went straight to my computer, because that's where you go when you need more information. I typed in pudendal nerve entrapment and began to read. It described my symptoms exactly, how awful! I had a hard time processing what I was reading. I would read a few sentences and feel as if I was going to vomit, walk away, and come back and try reading some more, it was useless, it was way too much for me to take in, I was too overwhelmed by what I was reading and gave up.
I continued to cry for the next four days. I cried in the shower, in the car, while making dinner, I cried myself to sleep, no matter how much I tried I couldn't pull myself together. I was in bad shape, I was out of control, and needed so desperately to find a way out of this dark hole I was stuck in. I decided to ask my husband for a blessing, so we called our home teachers and they were over to the house within twenty minutes. Thank you home teachers! Blessings are very powerful, this blessing definitely gave me some much needed strength, and peace, and with that I became grounded once again. My only question? "Why did I wait so long?" I know better, so I thought.
So thankful for the priesthood.......
Friday, September 14, 2012
When Hope Is Shattered (Part 1)
Today I needed to go pick-up some medical records for my upcoming surgery in Turkey. As I walked through the doors and towards the elevator a flood a emotions grabbed a hold of me. I was reminded of my first experience visiting this doctors office. This was the appointment that I will never forget, this was the appointment that I first heard the words pudendal nerve entrapment, this was the appointment I learned that I had a chronic pelvic pain condition in my in-betweens, and that it was going to be a long time before I would feel better and maybe even never.
The news came four months after surgery, and by the fourth month I was exhausted and getting frustrated with what seemed to be a very long and slow recovery, but oddly I really hadn't lost much hope. Walking into my appointment that day I still naively believed I was going to get better with some more time. I thought the doctor would have some simple solution to offer and soon everything would be just as it should, back to normal. However, somehow the surgery that was only suppose to be a 4-6 week recovery had turned into four months. At this appointment she almost immediately diagnosed me with PNE and soon all of my hopes and dreams were shattered as she explained my condition more in depth.
I remember so vividly the word "years" it felt as if I had been kicked in the stomach. Hasn't four months been long enough? How am I supposed to do this for YEARS? I tried so hard to hold back the tears, everything inside was tightening up into one big knot, I felt the big lump in my throat start to form, that's a sure sign the tears are going to start streaming down my face. I was in complete shock, I couldn't breathe, I kept saying to myself keep it together, just keep it together. She walked me out to the front desk, and as hard as I was trying to put on a brave face I know I wasn't doing so well. She reached out to give me what I thought might be a hug, but instead she rubbed my shoulder, I noticed her teary eyes as she said "it will be okay, we will figure this out."
I just wanted to run and hide. It seemed impossible to walk out of the office doors, down the hallway, and to the elevators all while trying my hardest to keep it together. I just wanted to be alone, where I could have a moment to be whatever it was that I was feeling. The second the office doors closed behind me I completely broke down and lost it, I couldn't hold myself together a second longer. A continuous flow of tears began rolling down my cheeks and falling to my feet. I walked down the hallway and to the elevator trying my hardest to make the tears stop, but I just couldn't. I quickly pushed the elevator button and prayed no one would be joining me as I waited to get on. The elevator chimed, feeling relieved that I was still the only one standing there I anxiously waited for the doors to open. As soon as the doors opened I quickly realize that there are people inside the elevator, and those people on the elevator were now watching me cry uncontrollably. I hesitated, feeling embarrassed I looked for the stairs hoping to find a fast getaway, but I couldn't see any, there was no escape. I panic, what am I going to do? Should I wait for the next one? Would it be empty or filled with even more people? Sensing if I politely declined to get on at that moment that I might run the risk of bumping into even more people in my vulnerable state, I reluctantly stepped inside the elevator in an effort to avoid anymore awkwardness. The doors close, already feeling completely humiliated by my unsuccessful attempt at hiding my emotions, my damaged ego and shattered heart begin the shameful descend down. Feeling more trapped than ever, I wanted so desperately to get outside for some fresh air, and quick.
However, what happened next is one of those moments in life when someone reaches out and truly touches your heart quite unexpectedly. The two perfect strangers that just happen to cross my path in the elevator at that very moment really surprised me. Most people would turn a blind eye in an awkward situation like this, but no, not these two ladies. In the few seconds ride down they managed to grab my hand, express their empathy, give me a hug, and tell me that I was going to be okay and that I would get through this. All while I'm sobbing uncontrollably and unable to speak any words, only nodding to let them know I heard them. They really had no idea why I was in such a state of hysteria and despair. Only minutes ago I'd been given a diagnoses which essentially sentenced me to a lifetime of unimaginable pelvic nerve pain, but without any questions or hesitation they were there to comfort and console me during that most difficult time. Amazing how life can give you exactly what you need when you're least expecting it. Thank you two special ladies in the elevator! Thanks for taking the time to express some unexpected, yet truly needed empathy. I'll always remember your compassion and encouragement.
So, as you see, I guess the elevators in that medical office are an emotional trigger for me. It's a feeling of deep sadness wrapped up in the kindness and pure love offered from two complete strangers. Re-entering that elevator today was a perfect reminder to me that even in our darkest moments we are not alone.
(to be continued...)
The news came four months after surgery, and by the fourth month I was exhausted and getting frustrated with what seemed to be a very long and slow recovery, but oddly I really hadn't lost much hope. Walking into my appointment that day I still naively believed I was going to get better with some more time. I thought the doctor would have some simple solution to offer and soon everything would be just as it should, back to normal. However, somehow the surgery that was only suppose to be a 4-6 week recovery had turned into four months. At this appointment she almost immediately diagnosed me with PNE and soon all of my hopes and dreams were shattered as she explained my condition more in depth.
I remember so vividly the word "years" it felt as if I had been kicked in the stomach. Hasn't four months been long enough? How am I supposed to do this for YEARS? I tried so hard to hold back the tears, everything inside was tightening up into one big knot, I felt the big lump in my throat start to form, that's a sure sign the tears are going to start streaming down my face. I was in complete shock, I couldn't breathe, I kept saying to myself keep it together, just keep it together. She walked me out to the front desk, and as hard as I was trying to put on a brave face I know I wasn't doing so well. She reached out to give me what I thought might be a hug, but instead she rubbed my shoulder, I noticed her teary eyes as she said "it will be okay, we will figure this out."
I just wanted to run and hide. It seemed impossible to walk out of the office doors, down the hallway, and to the elevators all while trying my hardest to keep it together. I just wanted to be alone, where I could have a moment to be whatever it was that I was feeling. The second the office doors closed behind me I completely broke down and lost it, I couldn't hold myself together a second longer. A continuous flow of tears began rolling down my cheeks and falling to my feet. I walked down the hallway and to the elevator trying my hardest to make the tears stop, but I just couldn't. I quickly pushed the elevator button and prayed no one would be joining me as I waited to get on. The elevator chimed, feeling relieved that I was still the only one standing there I anxiously waited for the doors to open. As soon as the doors opened I quickly realize that there are people inside the elevator, and those people on the elevator were now watching me cry uncontrollably. I hesitated, feeling embarrassed I looked for the stairs hoping to find a fast getaway, but I couldn't see any, there was no escape. I panic, what am I going to do? Should I wait for the next one? Would it be empty or filled with even more people? Sensing if I politely declined to get on at that moment that I might run the risk of bumping into even more people in my vulnerable state, I reluctantly stepped inside the elevator in an effort to avoid anymore awkwardness. The doors close, already feeling completely humiliated by my unsuccessful attempt at hiding my emotions, my damaged ego and shattered heart begin the shameful descend down. Feeling more trapped than ever, I wanted so desperately to get outside for some fresh air, and quick.
However, what happened next is one of those moments in life when someone reaches out and truly touches your heart quite unexpectedly. The two perfect strangers that just happen to cross my path in the elevator at that very moment really surprised me. Most people would turn a blind eye in an awkward situation like this, but no, not these two ladies. In the few seconds ride down they managed to grab my hand, express their empathy, give me a hug, and tell me that I was going to be okay and that I would get through this. All while I'm sobbing uncontrollably and unable to speak any words, only nodding to let them know I heard them. They really had no idea why I was in such a state of hysteria and despair. Only minutes ago I'd been given a diagnoses which essentially sentenced me to a lifetime of unimaginable pelvic nerve pain, but without any questions or hesitation they were there to comfort and console me during that most difficult time. Amazing how life can give you exactly what you need when you're least expecting it. Thank you two special ladies in the elevator! Thanks for taking the time to express some unexpected, yet truly needed empathy. I'll always remember your compassion and encouragement.
So, as you see, I guess the elevators in that medical office are an emotional trigger for me. It's a feeling of deep sadness wrapped up in the kindness and pure love offered from two complete strangers. Re-entering that elevator today was a perfect reminder to me that even in our darkest moments we are not alone.
(to be continued...)
Tuesday, September 11, 2012
Everything In Between (Literally)
I thought since I had a month before my life changing surgery ( I hope...I Really, Really Hope!) that I would share everything along the way that got me here. Now, I must let you know this blog is about "PNE" and my personal experience about the many ways "PNE" has affected and changed my life. Warning! Some topics may get personal as in TMI, it might make you feel uncomfortable and squeamish...Sorry...I am apologizing in advance. But, it's just the context of this sensitive subject, which just so happens to involve the most private and sensual part of my body, it is what it is so here I go.
What is PNE you ask? (Click here Pudendal Nerve Entrapment)
Ya! Wow! I know...right! Well with that said, I tried to worn you this topic may become very personal at times, and all the facts that go along with having PNE can start to get really uncomfortable (no pun intended). I promise, I will do my best to keep things a little more classy than maybe a scientist would. This is not a thesis, it's my blog about my personal struggles with PNE. So, if I decide NOT to call certain body parts by their real name please forgive me. I'm just trying to tone down a very private and delicate topic.
Well let me start by giving you a brief overview. Like I stated in my first post, this all began with a routine surgery. So, from the time of diagnoses to now, this is everything I have done that's led me to the decision to have surgery in Turkey.
I have met with five different PNE specialist, four of which were out of state. Crazy right! Not so much anymore, considering I am now leaving the country. After meeting with a pelvic pain specialist at the University of Utah he recommended a doctor in Phoenix. First, off to Phoenix, I wasn't feeling very confident in the treatment plan, so when we got home we made arrangements to go visit with the specialists on the east coast, and off we went. First stop, New York, then New Hampshire and the last stop which was originally scheduled in Baltimore, but due to scheduling conflicts we learned that the same Dr. also has an office in Henderson Nevada, so instead, we opted to reschedule our consultation with him one month later at his Nevada office to avoid making a second trip back east.
In between all of the consultations I had trigger point injections, three nerve blocks, an EMG, two specialized MRI's, some crazy, crazy medications, four and a half months of physical therapy, tens (electro shock therapy), Calmare therapy, a recommendation for Botox injections, suggestions for pudendal decompression surgery from 3 specialist, a consultation to surgically implant a pain pump, and of course at least a handful of emotional breakdowns...can you blame me! Not to mention the hours and hours of time spent researching in attempts of finding relief, on top of appealing insurance claims, and contacting several attorney's in hopes of pursuing legal action for medical malpractice. Sound exhausting? Tell me about it! I thought life was already exhausting pre-surgery. I have a large family, five kids to be exact, so most days I already felt like all I did was run our own little five ring circus. Five kids are hard enough to keep up with, who needs an extra does of complicated health issues? Well, I guess that would be me!
In a nut shell that pretty much sums up the last 19 months of my crazy life with PNE. My intentions for creating this blog is to first, have somewhere for our family and friends to stay updated on this debilitating condition, and to follow my recovery and progress of the surgery that I'm about to undergo in Turkey. Second, hopefully someone else suffering with PNE would possibly stumble across this blog. It would be really nice to talk to someone else who may be experiencing the same day to day issues of dealing with PNE. And third, A place where I can express my emotions, this will probably be a good thing as far as the healing process goes.
So, over the next three weeks I will go into more detail about all the topics that revolve around having PNE. Such as, how this happened, test and procedures, medications, specialists, the financial side, the legal side, the hours of research, my emotional breakdowns. So, you get it, basically the way PNE literally changed my life as a mother, wife, and person, and how I've learned to pick up the pieces and move through the devastating news of having PNE.
PNE has tortured me with the most excruciating pain that I have ever experienced and endured! It has not only been physically debilitating, but also emotionally exhausting. I know it's not the end of the world or even a life threatening condition, but having PNE has definitely been life altering. For me, it's been the most difficult and heartbreaking condition to deal with, and my broken heart and pelvis are anticipating the relief that this life changing surgery will bring.
What is PNE you ask? (Click here Pudendal Nerve Entrapment)
Ya! Wow! I know...right! Well with that said, I tried to worn you this topic may become very personal at times, and all the facts that go along with having PNE can start to get really uncomfortable (no pun intended). I promise, I will do my best to keep things a little more classy than maybe a scientist would. This is not a thesis, it's my blog about my personal struggles with PNE. So, if I decide NOT to call certain body parts by their real name please forgive me. I'm just trying to tone down a very private and delicate topic.
Well let me start by giving you a brief overview. Like I stated in my first post, this all began with a routine surgery. So, from the time of diagnoses to now, this is everything I have done that's led me to the decision to have surgery in Turkey.
I have met with five different PNE specialist, four of which were out of state. Crazy right! Not so much anymore, considering I am now leaving the country. After meeting with a pelvic pain specialist at the University of Utah he recommended a doctor in Phoenix. First, off to Phoenix, I wasn't feeling very confident in the treatment plan, so when we got home we made arrangements to go visit with the specialists on the east coast, and off we went. First stop, New York, then New Hampshire and the last stop which was originally scheduled in Baltimore, but due to scheduling conflicts we learned that the same Dr. also has an office in Henderson Nevada, so instead, we opted to reschedule our consultation with him one month later at his Nevada office to avoid making a second trip back east.
In between all of the consultations I had trigger point injections, three nerve blocks, an EMG, two specialized MRI's, some crazy, crazy medications, four and a half months of physical therapy, tens (electro shock therapy), Calmare therapy, a recommendation for Botox injections, suggestions for pudendal decompression surgery from 3 specialist, a consultation to surgically implant a pain pump, and of course at least a handful of emotional breakdowns...can you blame me! Not to mention the hours and hours of time spent researching in attempts of finding relief, on top of appealing insurance claims, and contacting several attorney's in hopes of pursuing legal action for medical malpractice. Sound exhausting? Tell me about it! I thought life was already exhausting pre-surgery. I have a large family, five kids to be exact, so most days I already felt like all I did was run our own little five ring circus. Five kids are hard enough to keep up with, who needs an extra does of complicated health issues? Well, I guess that would be me!
In a nut shell that pretty much sums up the last 19 months of my crazy life with PNE. My intentions for creating this blog is to first, have somewhere for our family and friends to stay updated on this debilitating condition, and to follow my recovery and progress of the surgery that I'm about to undergo in Turkey. Second, hopefully someone else suffering with PNE would possibly stumble across this blog. It would be really nice to talk to someone else who may be experiencing the same day to day issues of dealing with PNE. And third, A place where I can express my emotions, this will probably be a good thing as far as the healing process goes.
So, over the next three weeks I will go into more detail about all the topics that revolve around having PNE. Such as, how this happened, test and procedures, medications, specialists, the financial side, the legal side, the hours of research, my emotional breakdowns. So, you get it, basically the way PNE literally changed my life as a mother, wife, and person, and how I've learned to pick up the pieces and move through the devastating news of having PNE.
PNE has tortured me with the most excruciating pain that I have ever experienced and endured! It has not only been physically debilitating, but also emotionally exhausting. I know it's not the end of the world or even a life threatening condition, but having PNE has definitely been life altering. For me, it's been the most difficult and heartbreaking condition to deal with, and my broken heart and pelvis are anticipating the relief that this life changing surgery will bring.
Monday, September 10, 2012
The Road To Instanbul, Turkey
Exactly one month from today I will be in Istanbul Turkey for what I hope will be a life changing surgery. How I got here you might ask, well let me explain...
It all started with a very routine surgery on Feb 10, 2011. A type of surgery that is performed on a regular basis in the United States everyday. I went in for a hysterectomy for prolapsed uterus, and also a cystocele and rectocele repair. What is that? ( Click Here prolapsed uterus, cystocele, rectocele )
After waking up from surgery I was experiencing tremendous pain, which the nurses all assured me was completely normal. "You just came from surgery" they said. Although the pain medicine they gave me seemed to be doing very little to help, I believed them and did my best to deal with the pain.
I came home after 4 days which is standard for that procedure, I spent all of my time in bed wondering if what I was experiencing was normal and waited for my two week post-op appointment. At two weeks I was unable to sit or stand, the only comfortable position was laying down. Unable to drive, I had a very kind neighbor and friend take me to my appointment, we had to recline her front seat all the way down and I was still so uncomfortable. At my doctors appointment he explained to me that I had a large repair done and to give it a couple more weeks.
I then went in for my 6 week post-op appointment, and I still was unable to sit at this time. My doctor said that I likely have some "extensive nerve damage" and that nerves will repair themselves, "it will just take some more time". He asked me to make another appointment for 10 weeks, which is not standard.
At 10 weeks post-op I returned, and it was still very painful to sit. I told my doctor that I thought something was left behind during the surgery, because it felt like when I tried to sit that I was sitting on something. He said that it was very unlikely, but for peace of mind he ordered an x-ray to check for any sponges that may have been left inside. The x-ray was negative. He asked me to set up an appointment with his colleague, another doctor in the same office, who had more experience with pelvic surgeries to get a second opinion. His colleague thought maybe it was a hematoma, and sent me to have a CT, this came back negative also.
After these scans, my doctor recommend that I find a neurologist. He gave me some names which I called. I quickly found out that neurologists are unable to help someone with nerve issues in the pelvic area. I called back to his office to explain my frustration and they gave me some names of top neurologists in our area, after making some more phone calls, I learned that they could not help either. I did not understand, "I have nerve damage, why can't a neurologist help?"
At this time, I am about 14 weeks post-op and I still had very little improvement with sitting and pain, I was not sure what to do. I am starting to feel extremely helpless, so I decide to seek another opinion from a different team of OB-GYN's. I scheduled an appointment that was three weeks out, which was for the first week of June. At that appointment, the doctor almost immediately diagnosed me with a condition called Pudendal Nerve Entrapment (PNE). I told her "it's been 17 weeks, shouldn't the nerves be getting better by now?" With very sympathetic eyes she replied, while nodding her head back and forth, "Oh no, it's going to be years. There is no way to fix this condition, only ways to help manage the pain."
This is how my journey began...
Only I had no idea that searching for relief from this debilitating and rare nerve condition would ultimately lead me half way around the world to Istanbul, Turkey.
It all started with a very routine surgery on Feb 10, 2011. A type of surgery that is performed on a regular basis in the United States everyday. I went in for a hysterectomy for prolapsed uterus, and also a cystocele and rectocele repair. What is that? ( Click Here prolapsed uterus, cystocele, rectocele )
After waking up from surgery I was experiencing tremendous pain, which the nurses all assured me was completely normal. "You just came from surgery" they said. Although the pain medicine they gave me seemed to be doing very little to help, I believed them and did my best to deal with the pain.
I came home after 4 days which is standard for that procedure, I spent all of my time in bed wondering if what I was experiencing was normal and waited for my two week post-op appointment. At two weeks I was unable to sit or stand, the only comfortable position was laying down. Unable to drive, I had a very kind neighbor and friend take me to my appointment, we had to recline her front seat all the way down and I was still so uncomfortable. At my doctors appointment he explained to me that I had a large repair done and to give it a couple more weeks.
I then went in for my 6 week post-op appointment, and I still was unable to sit at this time. My doctor said that I likely have some "extensive nerve damage" and that nerves will repair themselves, "it will just take some more time". He asked me to make another appointment for 10 weeks, which is not standard.
At 10 weeks post-op I returned, and it was still very painful to sit. I told my doctor that I thought something was left behind during the surgery, because it felt like when I tried to sit that I was sitting on something. He said that it was very unlikely, but for peace of mind he ordered an x-ray to check for any sponges that may have been left inside. The x-ray was negative. He asked me to set up an appointment with his colleague, another doctor in the same office, who had more experience with pelvic surgeries to get a second opinion. His colleague thought maybe it was a hematoma, and sent me to have a CT, this came back negative also.
After these scans, my doctor recommend that I find a neurologist. He gave me some names which I called. I quickly found out that neurologists are unable to help someone with nerve issues in the pelvic area. I called back to his office to explain my frustration and they gave me some names of top neurologists in our area, after making some more phone calls, I learned that they could not help either. I did not understand, "I have nerve damage, why can't a neurologist help?"
At this time, I am about 14 weeks post-op and I still had very little improvement with sitting and pain, I was not sure what to do. I am starting to feel extremely helpless, so I decide to seek another opinion from a different team of OB-GYN's. I scheduled an appointment that was three weeks out, which was for the first week of June. At that appointment, the doctor almost immediately diagnosed me with a condition called Pudendal Nerve Entrapment (PNE). I told her "it's been 17 weeks, shouldn't the nerves be getting better by now?" With very sympathetic eyes she replied, while nodding her head back and forth, "Oh no, it's going to be years. There is no way to fix this condition, only ways to help manage the pain."
This is how my journey began...
Only I had no idea that searching for relief from this debilitating and rare nerve condition would ultimately lead me half way around the world to Istanbul, Turkey.
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