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

Finally home:

You'd think things would get better from here... you would be wrong.

I was in agony the same night I was discharged and my pelvis locked up when I laid flat on the bed preventing me from breastfeeding and I had to sleep on the sofa. My parents had to come out at 4:30am and help my husband lift me to the sofa.

When it did this again the next day the urgent care dept out of hours suggested I phoned the ward I was on, the ward I was on did not want to know and as far as they were concerned as they stated "You have had the baby now..." and basically I am no longer their problem.

So I phoned A and E and and my mam and dad came and took me and the Dr there gave me morphine but said I could breastfeed on it.

Morphine made my baby vomit so I stopped it.

Second time I was stuck on the sofa unable to move and scared incase I needed the toilet as I couldn't even nudge myself forward or sit up/back so I phoned urgent care at 23:00 and the lady came out at 02:00 and gave me morphine and an IM Tramadol injection.

Keep being passed from pillar to post AGAIN!

I had problems with my community midwife still, the last time I saw her she randomly brought up my SPD, which what she said upset me and my husband yet again.

She stated that I don't have SPD as the X Ray was normal and even my new consultant confirmed this. It was said in such a way that inferred that she was trying to prove me wrong and make out my SPD is psychosomatic.

I phoned my GP crying my eyes out (For the first time in the whole time I have had SPD I got really upset! Despite not having counselling, professional diagnosis, and having to cope with being completely disabled and immobile from being completely mobile) The Dr basically said that my psychological / mental state was taking over and thats exactly why social services children in need team and the psychiatrist has to be involved!

Some help that was, pardon me for being human and having a normal human response to an extreme stressor!

They have also changed my health visitor so again passed from person to person!

1st night home I tried to give myself the Clexane 40mg injection as no one would show me how to do it I had to try myself. It went wrong, the needle must be different as it got stuck going in and kept sticking and I managed it but it has frightened me for the moment I am terrified of these spring loaded injections and cannot do them.

The temp midwife we had for the weekend (one day sunday) had to do the other one and said my midwife would weigh baby tomorrow, and I had to get the midwives to do them, and I ended up arguing with 7 health professionals, same argument over and over again, about them wanting me to inject myself.

First off my community midwife came out the monday after (same day she mentioned about my SPD) and got quite nasty about me not doing Clexane referring to me as being silly etc... and even suggested the Dr stops them to solve the problem as someone would have to come to my home and give me them and she cannot see the midwives doing that! She said they'd do them at the surgery tomorrow and complained that the midwife we had yesterday did not weigh the baby.

She also changed the baby on her knee prior to weighing him in our new suede chair and ignored my polite request to merely put the changing mat under incase he wees, responding "he'll only wee on me..." lovely!! We want our house hygienic thank you! Then she put the dirty nappy on our carpet on the floor despite my husband holding a nappy bag ready in front of her face, then having to tut and pick it up in front of her... again HYGIENE?

Same thing more or less happened with the Clexane when we went to Dr's Tuesday (had to as lots to cover and sort out and baby appt. too and we had transport) and the nurse was reluctant to do it despite what midwife had said.

She stated "Well you expect to come to the Dr's everyday for them then?" I explained that I couldn't to which she replied "What's the matter, you houseound or something?" I got really upset as I answered "Yes." Because at the moment I am :(

I got her to phone the ward who had given me them to confirm so she did that, but they told her I was on 2 injections as thats what I was on in hospital and told her I self-administered.

So I explained again, they gave me one daily after hospital and that I have never done them ones before!

She said "Who done them when you were in hospital then?" I explained that the nurses/midwives did.

She then said she could show me completely ignoring the fact that unless I get a hypnotist there's no way I can do them as I had to fight with my head to finish the 1st one I did and its terrified me since.

She kept going on abut the paperwork as if it was my fault and that I should have paperwork and it all got too much for me so I responded

"Im sorry but it is not my job, position or ability to organise the communication between NHS staff and I am stuck in the middle of it all, being passed from pillar to post, having to explain the same things over and over again to different people and I am sick and fed up of having to do so and being scolded all the time for things beyond my control"

to which she replied "oh, its alright *my name here*..."

and i interrupted saying "well no, its not alright, its not my fault i am here now as no one showed me how to do the clexane and i dont appreciate that it went wrong and I need someone else to dio it now nor do i appreciate being blamed and made responsible for passing messages which most are important and serious in regards to my health, to and for NHS staff. "

She still tried to show me and get me to inject and i said that I am not a nurse, have had no training with injections and cannot be expected to inject now after what has happened.

(I felt quite proud of myself for being able to say all of that for once at the time it was happening and being able to stick up for myself for once!)

Anyway, she eventually did it after looking through all my confidential (mostly not related) notes that had nothing to do with Clexane and were private and some about the social services safeguarding children's dept.

After that we got nurses at home to do them that still wrote in their notes " with the aim to teach *my name here*  how to self administer " word for word.

I had to explain to them too that I could not do them.

Hopefully it will sink in!