Diagnosed with postpartum symphysis pubis dysfunction and osteitis pubis

Hello everyone! I created this blog to let friends and family know what I’ve been going through the past 2 years.  I also want to put my story out there to help other women who are dealing with this bone condition, osteitis pubis.  It is a nightmare! I’m having major surgery on my pelvis and I’ll be screwed back together with metal plates…I’m literally an Iron Mom now.

This started when I was pregnant with Patrick who is now 2 years old.  I had some discomfort in my pubic bone area and I had difficulty putting on shoes and pants. Then one day when I was 8 months pregnant I woke up with really severe back and glute pain.  It was like nothing I’ve ever experienced, I had trouble walking and I could barely move.  It took everything out of me just to get to work and home and then I couldn’t take care of Madelyn who was 2 at the time.  I went to a women’s specific physical therapist and she got me back to walking and recommended an SI belt (Sacroiliac joint belt).  Then Patrick was born in April 2013 and my pain was magically gone, or so I thought…

He was only a few months old when I had really intense hip pain and I had to stop all exercising, Sept 2013.  I’m accustomed to aches and pains all the time, being a triathlete for 10 years and having completed 2 Ironmans that is just the norm in my life.  I decided to see an ortho dr. because it wasn’t getting any better with rest.   My Xray results showed Osteitis Pubis which I was told I had but that it really should have nothing to do with my hip pain and so that diagnosis was ignored.

I got an MRI on my hip which was normal. I was diagnosed with hip tendinitis and sent to physical therapy.  The physical therapy did not help in fact it actually made it worse and I was getting new symptoms.  I now had pain in the other hip and severe groin pain.  When I told the dr about the severe groin pain he just told me I strained my adductor and yeah it is supposed to hurt.  I was so upset!  2 small children and I was limping every day and I could barely pick up Patrick in his infant car seat carrier.  The pain was very intense and daily functions were extremely difficult.  I tried getting a cortisone shot in my iliopsoas hip flexor, this actually worked with my left side and I was so excited that maybe we found a solution!  So I tried in my right hip too and it failed, no relief and still limping.  At a follow up dr appt, he started talking about surgery on my hip which blew my mind.  WHAT?!  I’m still nursing and do people actually have surgery for tendinitis?  This was when I decided it was time to see another dr and get another opinion on this hip and groin problem.

Doctor #2, March 2014:  I saw a doctor that is a family friend and specializes in physical medicine.  He did fresh Xrays and sure enough, osteitis pubis shows up again and this time he shows me what it looks like.  Cloudy spots on my pubic bone which is bone erosion.  He said that YES this is definitely the cause of all your hip and groin pain, he was surprised that I was being treated for something else all this time.  Trust me, so was I and I was pissed.  He did mention this is most likely from pregnancy and childbirth, which was crazy to hear. He said he has only seen 2 other patients with it before (neither from pregnancy) so I wasn’t getting a warm fuzzy feeling that I was in the right place (yet again).  He said it takes time to heal and said to continue with PT and stretching.  I followed his advise but I was still not getting any pain relief.  Every time I would bend over and pick up a leg, it would feel like my pubic bone would to snap in half.  Still not able to swim, run or bike outdoors (i could manage 30 min on my trainer but that’s it) and I could barely manage short stroller walks so I decided to reach out to yet another dr.  Now it has been over 1 year now since this all started.

Doctor #3, June 2014: Decided to see a female sports orthopedic at the Rothman Institute in Philly area.  After getting another MRI of my hip and fresh Xrays again, she also determined that i have osteitis pubis.  I was really hoping she would have a good take on how to recover from this condition.  Her response:  I probably made it worse by nursing for a year and I didn’t eat the proper nutrients due to Patrick’s dairy and nut allergy.  She thought I might have had a lack of calcium from cutting out dairy while I was nursing which lead to the bone erosion.  She told me I need another year to recovery.  And that was that.  I left hysterically crying and thinking how unfair it is that I will be limping for another year and how can nursing be so bad for your body?  She suggested I meet with a nutritionist to get myself back on track after having nursed Patrick for a year.  So I did and I got nothing out of that meeting, I eat a healthy well balanced diet and there’s nothing to change.  Great…now what!?

Doctor #4, September 2014: Still plagued with hip and pubic bone pain, I decided I should try to rule out a hernia.  I saw a local surgeon at Lehigh Valley Hospital and was ordered a CAT scan.  This also came back showing osteitis pubis but no hernia.  The doctor’s response:  Wow Cyndi, I’ve heard of this condition but I’ve never seen it in anyone before.  Sorry but maybe I can refer you to a urologist?  In my head I was thinking “Thanks Buddy, can I have my copay back now?”  So that was a bust.

During this time the severity of my pain has decreased so I was really hoping that I was finally on the mend.  I was able to join Master’s swimming again at 5:30am and swim 3000 yards twice a week.  I had to use a pull buoy, no kicking at all, but who cares I was finally exercising again!

Doctor #5, November 2014: Randomly ran into my old triathlon coach, Craig Sheckler with Endurance Multisport, and was discussing my medical condition with him.  He said he is coaching the head orthopedic surgeon at St. Luke’s Hospital and would get in touch with him on my behalf to see if he see’s people with this bone condition.  Sure enough, 2 days later I got in to see him.  FINALLY a doctor who has seen this in other postpartum women and had treatment options for me.  First we tried a high dose of Ibuprofen for a month or two. I actually saw some results with this.  I was swimming more and feeling generally pretty good and no big issues taking care of the kids or things around the house.

But then everything came crashing down on me in January 2015.  I woke up one morning in SEVERE lower back and glute pain again.  I could barely move, let along take care of 2 small children.  I was limping really bad and now sleeping was being interrupted due to constant throbbing pain in my SI joint and pubic bone.

It was at this point that I decided to have my very understanding and loving husband, Jim, come to all my doctor appointments with me.  I have just been so emotionally and physically drained by this condition that I really needed support.  My doctor ordered an MRI of my lower lumbar spine, which came back normal.  Then we decided to try a cortisone shot in my SI joint to see if that is truly where my pain is coming from, which was Feb. 2015.  The shot helped for 1 week with the back pain, so even tho it seems it was a failure because I only had 1 week of relief, he is considering this a success because it officially diagnosed that I have pain stemming from my SI joint.

Over the weeks following the shot my back pain subsided to a dull ache that was manageable.  However, the front of my pelvis, the pubic bone, groin, hip area was still severely painful.  I decided to start using a cane as often as I could in Feb 2015.  My doctor talked extensively about surgery with me, basically getting me to wrap my head around that fact that I might need it.  Fuse my pubic bone with metal plates and possibly a second surgery for fusing my the back of my pelvis at the SI joint.  Quite the undertaking, I was and still am scared!

We decided to now try a cortisone shot in the front of my pelvis, the pubic symphysis joint.  Yeah, that was AWFUL! Seriously, I put that right up there after childbirth.  And I had my kids with no epidurals.  Anyway, that was a very traumatic experience but I made it thru.  Unfortunately the following day I collapsed because I was in so much pain and I could not get up off the floor.  Luckily Jim was home at the time and picked me up and placed me in bed which was where I stayed for 3 days of bed rest.  The kids had to be sent away during that time, there was no way I could take care of them, I could barely make it to the bathroom! Needless to say, the cortisone shot did NOT work.

My doctor at St. Luke’s decided that surgery is needed for sure at this time, but he wanted me to get a second opinion at Hershey Medical Center because this surgery is rare and doesn’t have the best success rate.

Doctor #6 March 2015: Referred to Dr. Reid at Hershey Bone and Joint, he’s a trauma ortho surgeon and specializes in the pelvis.  My first appointment was a long one, I was there for hours.  We did fresh Xrays yet again, this time with me standing on one leg “stork view”.  The Xray shows a big shift in my pelvis in the front when I stand on one leg, it’s quite horrifying actually.  Symphysis Pubis Dysfunction is the official term, which also explains all the cracking, popping and clicking noises going on in my pubic bone.  My pelvis is so incredibly unstable still from the relaxin hormone that is produced during pregnancy.  He thinks it may have caused my ligaments to pop out place and in turn shift my pelvis out of place, for lack of a better way to explain it.  Basically my whole pelvis is moving around too much, which is causing the osteitis pubis which is inflammation and bone damage.  He said I have bone cysts on my pubic bone too, awesome.

We looked at my Xrays from that day vs. Xrays from 1 year ago and my condition has gotten worse

Stork View
Stork view: Should be able to draw a straight line across the bottom of my pubic bone from left to right. This is showing the movement in my pelvis when I stand on 1 leg.

Dr. Reid immediately agreed that I need surgery and this condition will not go away on it’s own at this point and will possibly worsen over time.  Great, so I’ll be wheelchair bound soon?  How will that work with 2 small children running around?  And I thought it was bad with a cane…

Osteitis Pubis
Lying down view, cloudy region is the bone erosion. Dotted line at the top is where the metal plates are going.

 

So I’m having surgery next week, I am sick of my cane and I don’t want to be in a wheelchair!  I’m 34 and I want my life back, I miss rolling around with my kids and doing yardwork and exercising!  I’ve been living my life day by day lately, some days I’m in bed and I can’t move much and Jim or friends or family are handling everything for me.

Surgery has a 10 week recovery time, you heard it 10 loooooooong weeks.  I’ll have a walker for 8 weeks, but I’m only allowed to “hop” and then I get to relearn how to walk for a couple weeks and then maybe I can take care of my kiddies again.  I’m dreading the boredom of recovery but I’ll have to keep reminding myself that the rest of my life depends on a successful recovery so don’t move around!

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2 thoughts on “Diagnosed with postpartum symphysis pubis dysfunction and osteitis pubis

  1. I created an account – just so I could comment on your entries! Your blog is remarkable. I just know someone is going to be searching for more information like you were, and will be so thankful to read your details to help figure out their own situation. You are an iron mom and woman in MANY more ways than one!!! Keep posting!!

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  2. Hi. I have been struggling with osteitis pubis for about a year now. I was wondering how your surgery went and how you are doing post surgery. Any insight you could share would be great.

    Like

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