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.

Thursday, 7 January 2010

Hiding away and hoping...

I have been hiding away and avoidant again for a while but now i need to speak up again...

Xmas is over now and we had a nice xmas as we stayed at my parents and they had bought a sofa and a matching sofa bed for their living room just for us!! Can you believe it, changed their furniture just so i would be able to sleep over at xmas.

I love them so much!

We are still fighting for a stairlift, our son is 6 weeks old 1st january and I am still trying to get my 6 weeks check up.

Whats happened about the stairlift?

Well, my new consultant originally refused to send social a letter about me as he refuses all his patients since a check from the county council previously bounced therefore its been seriously held up.

My SPD's getting much worse and a while ago now i was in hospital with the stomach pains, different to SPD pains and the consultant who saw me on the 10th the one who discharged me without telling me who i was reassigned to on the 10th Dec said that it would subside 6-8 weeks on, here I am 6 weeks on and its getting worse not better and now my joints are stiffening up, in which my health visitor (who is bloody fantastic by the way) and my GP (who does try his utmost best bless him) said that its possibly due to my immobility.

Anyway I got a call from my consultant and I asked for his help and I said to him they need me to meet certain criteria and my SPD is getting much worse etc... they need a letter to say that its likely to continue for the inforseable future and i explained all the problems with not having a stairlift. He said that if they did not pay him he may send me a letter to give to them.

Then i receive a letter this morning saying that he will only be prepared to write to them if a payment method is arranged on the outstanding amount and that it will briefly say that he believes it will subside in 6-8weeks!

By the time he sends that it will be around 10 weeks and it wont have subsided so they will shut my case down despite the SPD is still active, not accept another letter and i will have to fight to get all the way to 'start' again and wont be allowed to pass 'GO' as I will be stuck on the 'jail square' and am being refused bail and a get out of jail free card! SO basically its all a game to them and I will have to try and get on the list for an OT assessment again that is if theres not a policy, which is what i am expecting next, that prevents them re-assessing for like months or a year probably!!! It is so unfair.

My problems due to lack of stairlift:

-Stress = no eating and no sleeping. irritable, defensive, shaky, sweaty and on edge.

-cying

-not being able to decorate downstairs as too many things in living room would have to be moved and no where to put them outside, in kitchen or hallway, so no carpet, and no wallpaper.

-not being able to decorate upstairs, as Rob wants to do it WITH me and too right as it is our home and we like to pick things together but i cannot even view the rooms.

-i am constantly getting infections and I am saw in places I should not be and I am using sudocrem, I know its embarrassing but they are doing this to me, making me suffer!

-Feeling no self worth as I wont wear nice clothes or go to surestart with baby or anything as how can i leave the house like this?

-cannot have bed bath as cannot get into positions to clean properly, the shower seat is adapted so i can wash everywhere with husbands help but cannot stand for long or move to positions where i can have a bed bath and cannot wash my hair at all.

and much more... :(

UPDATE from: Thursday 7.1.10.

My 6 weeks check up has been unnecessarily postponed till late January around my 10-11 week postnatally.

I am in a lot of pain with the Prolene stitch and it is opening up my wound.
I am getting worse in regards to my SPD.

I requested an appointment earlier than that and as soon as possible due to the need for an assessment and some help, they have refused despite me breaking down in tears and needing help. They have said if i am not happy change my consultant then!

My consultant was still only willing to submit a report about my SPD for the stairlift (bearing in mind his opinion is that the stairlift is nothing to do with him) ONLY if social services / county council sorted out some sort of payment that was outstanding, which i received a statement confirming this in writing to which without further, and much needed assessment, he was going to write that my SPD is likely to subside around 6-8 weeks, I have been trying to get an appt. as soon as possible as this was his opinion from when i saw him at 36 weeks pregnant.

I have seen him twice since but for no more than 10 mins max per seeing him. The first one was to say that the week i was induced he never told me but he was at a meeting down london, then i was discharged without notice to which when i phoned for his help, his secretary stated politely that i am not to contact him again, and the second time was when my prolene stitch was swollen and they did a CT scan and said that there was nothing sinister and they will leave the Prolene in.

I am starting to feel let down now as more people i meet are making me feel like I am a problem.

Luckily the social services OT is willing to hold my case for now and I have phoned DLA for help from them to which they are sending me a letter to forward to social to say about what rate I am on and how long i have it for, to attempt to help with the case. She will show it to her manager at social and see but apparantly a consultant needs to write them.

So again, I am suffering, and waiting.....