Welcome to my PGP/SPD blog: Links and Info:



SPD is Symphysis Pubis Dysfunction.


PGP is it's appropriate name: Pelvic Girdle Pain. (although I disagree as many do and feel this name is too general.)


I have created this blog about my story to raise more awareness in regards to PGP and SPD with links to the appropriate support sites to make your recovery as easy as possible.


The main websites I have found for you to look at now are:


The ACPWH have changed their website and here are the new links to access the 2 SPD documents you need to read which will offer you help when you have been diagnosed with SPD:

http://acpwh.csp.org.uk/publications

http://acpwh.csp.org.uk/publications/pregnancy-related-pelvic-girdle-pain


http://www.pelvicpartnership.org.uk/

(This is a charity support group here to help you as a sufferer.)


http://www.facebook.com/group.php?gid=137142035812&ref=mf

(Our own official support Group on Facebook JOIN US, RECEIVE HELP, INSPIRE OTHERS)



More websites you may find helpful:


NEW CHARITY: SUPPORT PELVIC DYSFUNCTION: http://www.supportpelvicdysfunction.co.uk Donate online, receive help and support one on one and read helpful the helpful guides provided to help you cope with SPD and other pregnancy related complications.


Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton


http://findarticles.com/p/articles/mi_6862/is_2_5/ai_n28445225/


Link about DSP and SPD/breastfeeding.


http://www.plus-size-pregnancy.org/pubicpain.htm#Should%20I%20stop%20breastfeeding%20if%20I%20am%20still%20experiencing%20pubic%20pain%20postpartum


More info on SPD and a link to a support forum to talk to others about SPD.


http://www.madmums.com/GH_ShowArticle~HID~147.htm


Community Legal Aid: (If you need legal advice in any situation)

0845 345 4 345.



Another suggested link that my be helpful: (Scotland)

http://www.pelvicinstability.org.uk/index.asp


Additional links which are useful (Thanks to a lady from babycentre and all the other contributors! You know who you are and you have been fantastic!)


http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf


SPOON THEORY:


But You don't look sick?

Copyright: 2003 by Christine Miserandino butyoudontlooksick.com

A story that helps the disabled not just SPD sufferers:

http://butyoudontlooksick.com/navigation/BYDLS-TheSpoonTheory.pdf



It is important to NOTE that PGP formerly SPD is not just caused during pregnancy (1 in 4 women) and that many sportsmen and women also suffer from PGP / SPD.


Hope you find this information helpful and pass it on and invite others, as severe cases are defined as a disability and can be made permanent condition(s) if not treated correctly.


Awareness:


Due to lack of awareness that this site exists, MANY women are sat at home now, MANY pregnant and suffering unknowingly with SPD and/or joint conditions. As a founder of a start up charity I cannot advertise. I am merely asking you as a reader of this blog and supporter of the new SPD charity, Support Pelvic Dysfunction, to share this site with others, maybe friends on your facebook? twitter? Anywhere, by doing so YOU WILL be HELPING many more SPD sufferers like YOU and those that are suffering in silence right now not knowing we are here to help. We need YOU to help us, to help them. :)


We would like to put out a huge THANK YOU to all those women on our support groups and pages, on facebook, who are all discussing SPD and helping one another, and to thank ALL those who are sharing this blog and the charity website Support Pelvic Dysfunction.


Because of you, Support Pelvic Dysfunction receives many emails from helpless women desperate to know if they will re-cover and emails from those that have unknown underlying joint conditions, to which we can assist to get them a REAL diagnosis and help!


Dont suffer in silence!

Email: help@supportpelvicdysfunction.co.uk


(This blog is not affiliated with the charity, however as the founder of the charity, this is my personal REAL, TRUE TO LIFE story, that i have put in place to help others!)



Please enjoy my personal story in the form of a blog below.

Wednesday, 9 December 2009

After care? DSP is caused by SPD and shows up on x-rays.

After the birth things were not so good, the nurses on this ward didn't understand SPD too much.

ONE THING I WILL THANK THEM FOR: They let my husband stay all 8 days I was in hospital with having my baby. He slept on an airbed on the floor, BUT I DID NEED HIM as the staff were not equipped for my SPD and couldn't move me and didn't understand the SPD.

When we first went in a lovely nurse said that my husband was there to support me and not insured or authorised to be my carer there and that the hospital were responsible and my care were in their hands.

Things went downhill from here.

1st day after birth they made me get out of bed and try and have a shower during visiting times too 6:30-7:30pm when my parents were outside!!!

I was screaming!!! Really screaming!!! This affected me really badly and I was in agony.

Later on there was nights where I had to have gas and air and really struggled.

I worked with my husband to try and get mobile, and all my efforts were not recorded, instead they just wrote all the negative things in my postnatal notes, e.g. I had been up all night 3 nights in a row and awake all day, sometimes with the baby but mostly with being disturbed by nurses and staff, a lot of the time for silly things that could really have waited, anyway I couldn't work with the physio so I refused, they wrote 'reluctant to work with physio' but i still changed my mind and worked with her, was that recorded? No.

One night we were told to go get the staff instead of pressing the buzzer as they were really busy, so my husband did that. The next night things were back to normal. A few nights later they got really nasty with us and scolded us as if we were children for pressing the buzzer, stating that a lady from day shift had, had a word with us stating we were not allowed to press the buzzer after 11pm and only us. We confirmed we had not been told such information yet they remained adamant that we sent my husband all the time after 11pm, so we abided by this, this was again NOT RECORDED in postnatal notes.

One night I was in absolute agony with many different pains, SPD pains, C-section pains, trapped wind etc and they just left me to suffer. 3 hours I was on gas and air and ended up breastfeeding in one arm and gas and air in other what happened was the lady looking after me had to go off to an emergency which was fair enough but the nurse left was shouting in my face and telling me to stop screaming when I was in agony!

She failed to give me pain relief and it was too late when she did the pethidine did nothing... she even put in my postnatal notes false recollection of that night! She said my husband was complaining when he merely asked what pain relief I had been prescribed by the DR (that i hadnt had) and she referred to me as being 'fixated on having an infection' when I just asked if the swabs had come back as it was obvious I had one and I did and ended up on anti-biotics. She referred to me as being 'out of control' and 'screaming and wailing' and stated that 'my offensive smelling lochia was probably down to the fact pt had not bathed for 14 weeks' which is a complete lie!!! (I had showered at my parents when I could, using the bath seat, made me in agony but I did it, and even managed a bath the day before labour and the smell was down to infection) I saw and read this myself when I was given my postnatal notes on leaving and still know her name incase I need to report her in with any complaints I make.

Another night they made me move into my wheelchair and I was supposed to be in it for an hour only, well it started to hurt my pelvis really bad and they would not let me back into bed as they had ordered an inflatable mattress for me that would take 15mins to blow up.

2 hours later and excuse after excuse it was too much and my husband helped me back into bed.
It got to the point that not only was I sleep deprived, on codeine, diclofenac, paracetamol and anti biotics (which they kept forgetting my anti biotics as it was written on back of kardex and i missed doses) I was also dehydrated from breast feeding and unable to eat. So we put a do not disturb sign on the door as we had to and they even ignored that until i told them it meant i was using the commode that took them days to get me.

They walked in all the time I was breastfeeding and had my boobs out and even left the door open!

Despite all this, there were a few nurses that helped make us feel better, that the others contradicted but if it wasn't for them we would have gone insane!!

One (A) gave our baby his first bath and was really supportive and helpful with my breastfeeding as the lady that I had been referred to prior, the specialist did not turn up at all and others just left me to get on with it. Another midwife stated that we should not be afraid to press the buzzer at anytime as thats what the staff are paid for and she made us feel welcome and less of a burden.

It is such a shame that there are certain staff that spoil the hospital experience for others and counteract all the good these staff do! She even said that people shouldn't be in a caring profession if they don't care, she suggested an x-ray too.

I did have an X-ray and blood tests and these came back normal, but according to:


"The worst-case scenario for birth and post-partum is when a woman with SPD is mishandled, and use of stirrups, interventions, or 'wide gap' positioning damages or severely separates the pubic symphysis. At this point, SPD become Diastasis Symphysis Pubis (DSP), which can be very painful and difficult postpartum. DSP can only be officially diagnosed after pregnancy with an X-ray, ultrasound, or MRI scan that will measure the distance between bones. "

So SPD wouldn't be picked up on an X-ray DSP would be.

Before we got out I had my stitches removed, well they tried to and what happened was that the lady cut off both the beads so the Prolene stitch (non-dissolvable) is now still inside me.

Apparantly thats OK as it will eventually dissolve over months and months (maybe) and it's "not like we have left a glove inside you" according to one lady.

I have to watch out for infection.

We are glad to have left!