Pregnancy Forums

Posted: 11 March 2010 at 10:02am | IP Logged

I am so so sorry for what you have been through. It angers me immensely that women are still treated like this when SPD/PGP is such a common condition.

I have had SPD for around 5 and a half years. I was exceptionally lucky that I spotted the symptoms and was able to get a diagnoses during pregnancy (although thats not saying it was easy!). However the pain continues after pregnancy and I moved from one specialist to another trying every treatment option available to me.

I had prolotherapy some time ago and it was a huge success for around a year although unfortunately it stopped working. However this isnt command and Prolotherapy is something I would recommend to anyone with SPD. I dont know where you are from but the person I saw and was a huge help to me was a Dr Rajesh Munglani at the West Suffolk Hospital in Bury St Edmunds.

I wont list everything I have tried but I do fully understand your pain. I too am addicted to painkillers - Morphine in my case, and am currently weaning myself off them. I have gone from the equivalent of 700mg of morphine daily to around 300 over the course of the last 6 months so I still have a way to go but I finally feel I am getting there. Although the withdrawal is just like that of a heroin user and is not something I would wish on anyone.

Finally when I thought I had nothing left I was told I needed to look into surgery. It was an option I had discounted a long time ago as back in 2007 I was told I would only have a 50/50 chance of coming through it ok and if not I would be in a wheelchair for the rest of my life. Not something you want to hear at the age of 22.

However by early last year I was in a wheelchair much of the time already and I knew this couldnt go on. It was affecting my whole family, in particular my son, and that tore me apart. So I did a huge amount of research and found a pelvic specialist is Leeds (a 7 hour round trip from us in Cambridgeshire). I asked for a referral and when I was seen it was the beginning of my life changing.

Apart from Dr Munglani this was the first time someone high in the medical proffession had taken my pain seriously. He organised scans, x rays and tests and from the first stork x ray he saw he said he could see what was wrong and how to help me. Basically over the course of the previous 4 years my pelvis had been so loose it had started to rub away at the cartilage between the symphysis pubis joint at the front of my pelvis until the cartilage had gone. Now bone was rubbing directly onto bone and starting to wear at the bones. It was no wonder the pain had been so agonising. My pelvis was also misaligned and there were issues with the SI joints but the main concern was the symphysis pubis joint.

To cut a long story short, in July 2009 I went into hospital to have my pelvis fused. I had a piece of bone taken from my left hip and put into the gap in my pelvis and then a metal plate was screwed over the top. Recovery was slow but I was very determined. I wasnt allowed to weight bear at all for 9 weeks but slowly I got my mobility back. The results have been amazing. I still have a way to go but I am already walking much better, mainly only needing one stick to walk, instead of the wheelchair I used this time last year.

The consultants name is Proffessor Peter Giannoudis and in my opinion he is a genius and a wonderful man. The whole team in Leeds have been a great support through the whole process and I already know of people from this site who I have recommend travel to see 'The Prof' (as he is known) who are as happy as I am with the outcome.

Please dont give up hope. There is help out there. There are two articles on this site which might be worth a read here and here. If you want to talk please send me a private message or ask away on here with any questions you have and I will do my best to answer.

Take care and good luck. I am thinking of you.

Posted: 13 March 2010 at 7:19pm | IP Logged

Hello Nical I amsorry to see you are in pain and not been taken seriously.

Have you ever had a stork x ray? That may help them diagnose properly? DOn't give up try and keep pushing - even change doctors and ask to be referred to a specialist. It would help if you could google some hospitals and find one that you can see have a good history.

I have had spd for over 4 yrs too, and sadly suffered 2 mc' which my current consultant believes was due o spd. I too desperately want more children but have been told not to unil after surgery.

I have by pre op assessment in a few weeks and hope to have the surgery this year. It is a last resort but nothing has worked so far!

x

Posted: 19 March 2010 at 2:02pm | IP Logged

Hello Nical

Im so pleased you are begining to be taken seriously. Its such a nightmare not knowing whats going on especially when your in serious pain and no one believes you. Its even worse when they think its all in your mind. Its such a fight to keep sane and keep going when they don't believe you but only you knows how bad you feel and we will all support you on here as best we can.

Keep talking, keep letting people know how you feel and keep true to yourself. There will be answers it just unfortuantly takes time.

gental hugs

From Sam