Saturday, September 1, 2012

How I Live with a Separated Pubis Symphasis Post Partum

It's late right now... I decided that it was time to get back up because no matter what way I tossed or turned, I was in pain. I'm going to give my backstory on how I was diagnosed.

When I was 19 years old and two short months after I got married to Joe, we got pregnant with our first child. The pregnancy actually went quite well. However, Serenity was quite the stubborn baby and with a forced debut, came into the world two days before Joe and I had our first anniversary. I was a young 20 year old mother. I had a normal vaginal delivery with no complications; the doctors didn't have to really even repair me! We arrived home less than 24 hours after Serenity was born. 

Then the extreme pain set in. Looking back, I'm not sure how long I dealt with the pain before I sought out help. I remember thinking that it was 1) worse than the whole laboring/birthing process combined 2) must just be what every woman went through. However, when I started waking up in the middle of the night crying because I was in so much pain, I knew I had to go in and be seen. I think it was the week she was born, I went into urgent care. After talking to the doctor, he was convinced I had "sprained cartilage" from the birth. Trauma. He sent me home with an anti-inflammatory and told me I would be all healed up in 2-6 weeks. A few weeks went by and the meds didn't help. I spent a lot of nights crying, wondering how I could get to sleep when it felt like my pelvis was falling apart. I eventually went back to the urgent care and was basically told that this was what having babies was all about. My body had changed and this was just the healing/post-partum part. Again, since I was a first time mother and so young and inexperienced, I believed the doctors. However, in the back of my mind, I kept thinking, "If this is like this for every new mother, I am sure a woman would never have another baby. This is too hard to live like this!"

So with no better diagnosis, I resolved that that was the way I was going to have to live my life. A short 19 months later, Ila made her debut! The pregnancy was definitely more difficult. I talked to my doctor about some of the pain I was having and he just always shrugged it off as normal aches and pains of pregnancy. It was particularly difficult when they measured my abdomen. The doctor would feel for the top of my pelvis bone to measure. I always experienced a sharp pain when he did that, but I sucked it up. So again, my pregnancy came to an end. The labor with Ila was not quite so peachy. It was longer (she was induced as well) and she ended up laying on a nerve in my leg that not even the epidural could extinguish. Again, we went home soon after the delivery. And again, I dealt with what I thought was the normal aches and pains of childbearing. 

These first few years of motherhood was so difficult. I spend countless hours crying, trying to find a comfortable position in bed, trying to take weight off of my pelvis. I gave up running because the jolting of my pelvis brought on unmeasurable amounts of pain. 

One day, I took toddler Serenity and baby Ila up to a school area. There was two playgrounds a ways away from each other. Serenity kept going back and forth between the two and I eventually gave up trying to go back and forth with her. It was a pain to push the stroller back and forth and I had a hard time for standing up for long periods of time. So I gave up and just sat down on one of the play areas where I could still see her. Well, eventually, like all toddlers do, Serenity wandered away from the play area. She started to wander to where you could get out of the gate...and go towards the street. Like I good mother, I started screaming at her to come back or stop. Of course I was trying to run as fast as I could towards her. She wasn't even that far away from me, so with my running career behind me, I should have been able to catch her. However, my pelvis had such limitations on me, I could hardly run. If it hadn't of been for her stopping, I would not have been able to catch and stop her before she went into the street. It was in that moment I knew, that was not normal! I should be able to run and play (or catch in my case) my child. So I started the grueling case of trying to find out what was wrong with me. It seems this happened back before I knew about Googling symptoms. 

I was handed off from doctor to doctor; specialist to specialist. They did x-rays, blood work; etc. I'm not sure whose bright idea it finally was to do a special kind of x-ray imaging. They had me sit on this x-ray and took the imaging that way. Here's a brief description of what they're looking for ( http://www.e-radiography.net/radpath/d/diastasis_symphysis.htm ): 

DSP (Diastasis Symphysis Pubis) means an abnormally wide gap between the two pubic bones at the symphysis pubis joint situated at the front of the pelvis. It can only be diagnosed conclusively by investigation such as x-ray, ultrasound or MRI scan. The non-pregnant gap is 4-5mm but in every pregnancy there will be an increase of at least 2-3mm due to the fact that ligaments which ‘tie’ the joint become slightly slacker under the influence of the pregnancy hormones. Therefore, it is considered that a total width of up to 9mm between the two bones is normal for a pregnant woman. Following delivery, this natural extra gapping decreases within days although the supporting ligaments will take three to five months to fully return to their normal state to make the symphysis pubis a strong joint again. An abnormal gap is considered to be 1cm or more, sometimes with the two bones being slightly out of alignment, and remains evident after the time that the joint should have regained the normal non-pregnant width.

The results came back that I indeed had an abnormal gap. Finally, results. It only took over 2 years! Even in that time of being handed to specialists, I can't count how many times I was told a variation of this: "Give it a few years for the relaxin hormone to settle down. If it doesn't by then, then proceed to find something wrong; but the likelihood of anything being wrong is slim." I have since then chose to inform people that even a small chance of being that one person; that weird case, is enough to have it looked as as an option. 

The next step of having a "confirmed diagnosis" was to have a steroid shot injected into the pubis symphasis (the space between the two pelvic plates). If after the shot, if I had no pain, it would be confirmed that I have DSP. I went in for the shot and it was WONDERFUL! Okay, granted the initial shot hurt like a mother, but after the injection sight pain wore off, I felt amazing! 

So my third pregnancy came upon us. The worst pregnancy by far. The first three months, I remember nothing other than the sight of Serenity and Ila playing on my living room floor while I watch them from a horizontal position. I was so sick I lost 20 pounds and had to stop working. I had a few good months in there. However, Aviana quickly grew. With her weight and her position, I could no longer even care for myself. I was in agony all the time! Joe had to take on pretty much all the household responsibilities, he had to lift my pelvis in the middle of the night and rotate it, he had to help me get dressed, I had a shower chair, and I walked around with crutches to take some of the weight off my pelvis. To make matters worse, it was during this pregnancy I noticed that I had a nerve in my left leg/groin area that bothered me. Luckily we got through the pregnancy. It was tough, but we survived! Right after Aviana was born, we did a steroid injection into the pubis symphasis before I even left the hospital. This helped manage my pain. Don't get me wrong, I was still in a substantial about of pain, but not as bad as before. 

After Aviana was born, my OBGYN had heard from a physical therapist of my situation and wanted to work with me. So I went in and saw him. He opened up a whole new world to helping me cope with my pelvis. He re-aligned my pelvis plates which then causes back/leg problems. That really helped with my pain level. 

The question after this was, were we done having babies? I really thought so at one point. My doctor told me I could have more if I chose to; I would just have to live with the pain again. It was a tough decision for me. I really wanted a son. Finally one day the decision just hit me. 9 months wasn't forever. Joe did an amazing job helping me with all the other pregnancies and if I didn't have a 4th (which was my limit regardless), I would spend the rest of my life wondering what my 4th child would have been like. So, we chose to have one last baby. Lone and behold, we had a son! The pregnancy was easier than Aviana's, but still tough. 

I also think at some point, when you live in a higher pain level on a daily basis, your idea of what is painful gets skewed a bit. After Rowen turned a year old, I decided that I was going to try to get back to whatever kind of normal life I could. I would do it no matter the pain. I was sick of being overweight because my pelvis hurt which kept me from exercising. So with the help of Tylenol with codeine and a lot of determination, I lost 45 pounds. 

In the last few years, I ended up doing some research with the help of Google and my OBGYN. I also determined that I suffer from Pudendal Neuralgia or Pudendal Nerve Entrapment. So not only do I have a hard time with my pelvis overall, I can't sit or lay on my left hip for more than a few moments at a time. Discovering this problem was quite difficult as well as it is also uncommon. A list of some my symptoms from both medical conditions include: pain in my left hip/leg/genital area, sexual dysfunction, limited mobility, lack of being able to stay in a seated or standing position to long, constant pelvic pain, constipation, pelvis popping/slipping, back pain, difference in leg length, etc. 

What the years looking forward for me is going to hold, I am unsure. At this point, for cost solutions, it is better for me to try to manage/live with my pain than to fly elsewhere in the nation looking for surgery. So in the mean time, I may have nights like tonight when I feel like my pelvis is being held together with glue and a fishing net. 

For anybody reading this, I have a few recommendations in sleeping positions to help deal with Pelvic Girdle Pain (PGP). 
*Stomach sleeping
*sit sideways on a couch with your side and knees laying against the couch with your knees drawn towards your chest
*sit "Indian-style" on a bed and fold a body pillow on top of itself. Insert the folded end between your lap and your stomach. Lay your upper body on the top of the pillow. Focus on putting your weight on your legs, not your pelvis. (This is my favorite position when I'm in a lot of pain)
*lay on your side with a pillow between your legs

The hardest part of my medical problems is people look at me and think, "Well, she looks fine." Looks can be deceiving. I have had friends that have been around me in my painful moments or in the moments where my pelvis chooses to pop back into place (it's grossly loud!) and can vouch for me. My pain has been so bad and can be so debilitating emotionally and physically, I have wondered if I could qualify for disability. However, in the meantime I just keep telling myself, "No excuses" and try to do the best job I can do. Of course, I have to make sure I make choices that will not hurt me worse. For example, during the winter I have to be extremely careful in walking in the ice. I fell down once and put myself out of commission and into intense pain for a few weeks!

I hope that this information out there can perhaps help somebody that suffers from the multifaceted medical condition of Pelvic Girdle Pain. Also, if anybody knows of an expert or surgeon in the Inland Northwest area, PLEASE let me know. I only seem to know of surgeons and experts in the UK or Canada. Not exactly close to home!

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