My Ankylosing Spondylitis (AS) in pregnancy was mistaken for Pelvic Girdle Pain (PGP)

A couple of days ago was the World awareness day for Ankylosing Spondylitis so I thought I'd write my story and why I started the Snoozle slide sheet business.

Ankylosing Spondylitis - a painful condition

Many of our customers and happy Snoozle slide sheet users suffer from Ankylosing Spondylitis (AS). AS is a nasty inflammatory disease that affects the back, hips and other joints. It's a type of arthritis and is a chronic condition. I wish I didn't know a lot about AS, but I do because I have it. 

It started in pregnancy

It started when I was pregnant with my first child and wasn't diagnosed until my third child was 1 years old. I had no idea I had AS when I was pregnant and was told I had Symphysis Pubic Dysfunction (SPD) that is now usually called Pelvic Girdle Pain (PGP). However, my midwife and physiotherapists did tell me that it was unusual for the pain to be mainly in the Sacroiliac joints (a pain in the butt, literally) but not so much in the pubic bone, although that hurt too! Nobody suspected I had AS, even after I spoke to numerous doctors and healthcare workers and told them I had a lot of post-partum PGP.

I was suffering quite a lot after I gave birth to all my children and kept waiting for the pain to go away. I did sense that something was really wrong but nobody listened to me. I was diagnosed with Fibromyalgia and told to take walks (even if I couldn't put weight on my right leg after 5 minutes of walking) and see a physiotherapist. 2 physiotherapists told me after numerous sessions that they couldn't help me, I still couldn't walk and was in constant pain, stiff and exhausted, and thought I'd just have to learn to live with it.

A diagnosis - finally

Ankylosing spondylitis in pregnancy It wasn't until I found a great rheumatologist (the second rheumy I saw) that I got a proper diagnoses after having x-rays and an MRI to confirm that indeed I had some damage in the SI-joints and other symptoms that fit the AS descriptions, like a swollen Achilles tendon and lots of pain and stiffness.

This was over 3 years ago and I'm still trying to work out a proper treatment with my doctor. I've come a long way and can now walk for 30 minutes without a lot of pain and can finally enjoy life a bit more. 

The experience wasn't for nothing

I've learned a lot from this experience and now preach to every woman that suffers from post-partum PGP to shop around for a good doctor and don't give up until they've been properly seen to. If you're still in pain long after your baby is born you need to have blood tests and X-rays or an MRI to see what is going on and if there's something that can be done. Some women end up having a pelvic fusion surgery, some get better after physiotherapy and those like me who are diagnosed with AS or other inflammatory diseases can benefit from good drugs that are out there. 

Some days I do get a little bitter and wish that my AS in pregnancy hadn't been mistaken for PGP and completely dismissed. That my previous doctors had listened to me and believed me when I described my pain to them. Maybe some of the damage in my joints could have been prevented with anti-inflammatory drugs if it was caught early. But there's no use in wallowing in pity ;) I'm thankful that my pain is now manageable and that it has led me down this path, to start a business making a product that really helps people in my situation. If I hadn't gone through all this, the Snoozle slide sheet might not exist! Reading the customer reviews and thank you emails makes it all worthwhile to me. 

Stay strong!

Lilja Th. - Co-founder of the Snoozle slide sheet

 


2 comments

  • Hi I’ll try and be quick with my story, 23 years ago I had my daughter and developed severe separation pubic symphysis at 32 weeks she was also back to back and I had a traumatic birth using the metal cap ( vontouse ?) twice which did not work I also had 4 epidural a and 4 diamorphine injections which did not work and went to loo on my own within an hour of giving birth, I went on to have a lumber fussion with metal wear 8 years later after suffering chronic lower back pain which lead to a thoracic arachnoid cyst with compression of my spinal cord and cervical degeneration with multi level bone spurs and now waiting to hear if I have AS, I’m wandering if P Symphasis is connected to AS I would love to hear your advice on this, thank you caroline

    Caroline
  • My daughter-in-law has fibro. She lnisets to her body and does what she needs to. It is hard for others to understand but it is only important that you understand and that there are others who have it. Hang in there.

    Jumana

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