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.

Sunday, 11 October 2009

06:39 am and as usual sleep deprived and in agony and crying:

For the last few weeks my pain has got worse (it was always constant) but now it's much worse and it is keeping my husband and I awake.

I am sick of all this torture, it's bad enough being in pain all the time but thinking about if that person sat behind that desk at DLA who needs to make an opinionated assumption as to whether they feel I need 24/7 care without sending me a medical assessor experienced in severe SPD, declines me again despite factually needing 24/7 care our lives will just get much worse as we are not eligible for anything. It's not like we can say, oh OK then, our bad.... my husband still cannot work, I still need 24/7 care and we have no choice but to appeal again to take it to a tribunal.

I have sent them confirmation in letter form from my G.P stating I am likely to have it months after the childbirth due to the severity of my SPD, documents on minor (some areas severe) SPD and requested a home medical assessment in an essay of a letter about my individual case.

All we can do now is sit and wait with our fingers crossed they can see the proof is there!

In the meantime, our lives have fallen apart and I am now depressed so need to speak with someone.

Any sane person having everything they ever worked for and owned ripped away from them and leaving them bare when they are pregnant and in need of food etc. due to a disability they are likely to have for a minimum of 2 months up to 2 years after childbirth that was just sprung on them and not their fault would feel the same.

I am worried about others, what would happen to a single mother expecting that needs 24/7 care if she has not got anyone to look after her and social services cannot provide the care she needs, and who would be there to help her look after the baby as it is not her fault if she gets SPD that causes all this??? Would they leave her in the same position as us? Without a bath/shower/toilet? Without a home (luckily we have a roof over our head as we have gotten a council house) and without carpets (stone cold concrete floors) and without financial help for food/bills/rent etc???

We're out of options.... ring DLA on thursday but don't hold breath...