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.

Friday, 11 December 2009

Fobbed off much?


Well I was sent to hospital yesterday morning early hours by an out of hours urgent care DR.

I had a female problem and increased bleeding and large clots etc.... (not very nice to state in a blog really is it, but anyway that was the problem.)

The lady Dr that examined me was adamant I should try to have the examination without the use of gas and air, and didn't have my notes, so obviously didn't take me seriously and I am still suffering now!

Internally I am in agony and she has made my SPD worse.

I was crying during and after and got some gas and air but when it started working she took the gas and air off me. She then kept saying assertively which i did not appreciate, (my name) look at me! Look at me! Over and over. It got to the point where she said (my name) your pulse is normal! I replied, it has been normal before when I have been in agony with pain that it has taken morphine to reduce, and she kept saying (my name) look at me! over and over again. I then said you are not another one of them who think my pains all psychosomatic are you, as I was getting upset at that point as I was trying to calm down and cope with the agony she had caused, she said no i am trying to calm you down as tensing makes pain worse. Well I did what she said and breathed etc and the pain stayed the bloody same so I bottled it all up and sobbed at home.

I had to take 10ml of Oramorph on more than one occasion early hours of today and last night, (doubled dose) as advised by casualty Dr I phoned, and 2 paracetamol at times yesterday and had 30mg more than what i was prescribed which is not much more but i had to double doses up at times.

I was told by the Registrar/Dr there that the Prolene left inside me does not immigrate (if thats spelt right) and just sits where it is left and that if it is 100% prolene in my notes, hospital will call me back to have it removed, so i was happy and left it for her to check my notes next day.

I phoned today and there is nothing in my notes about it or the surgery, just about examination.

I expressed my concern that things keep being left out of my notes and actually mentioned about the inappropriate entry by (stated her name on the phone) and said that they tended to focus on the negative, in regards to my postnatal notes. I also mentioned that I had felt inclined to write in all the missing things and state how I felt about the unprofessional entry but out of courtesy and respect for the staff I decided not to, despite what had been done and documented against me.

I also mentioned how I feel right now, which is just left to suffer, without any professional dealing with me etc, and the physio cannot work with me yet etc... and that the physio in the hospital could have made me worse as the more I find I move, the more immobile I find I end up and in pain... and that my SPD is getting worse and I don't know why as others are getting better (mentioned midwife). I clearly needed to get these things off my chest! The lady at the hospital stated she cannot comment, and I just said I know, I am just in pain and upset.

So the lady I spoke to looked into it and will be speaking with registrar tonight as she is on night shift tonight and spoke to my new consultant (yes i am still discharged from him) he said in contradiction to what I had been informed, that Prolene can migrate and he is not prepared to operate to remove it yet. Will review in three months.

The options I have is to be referred to another gynea consultant by G.P but they could think the same.

I have been trying to get a gynea since I was pregnant, for my pains I have in that area anyway, and the pains more important so will see if i can still get one. (Don't know if same or seperate issue to SPD)

Will see what comes about from the registrar etc.... and in the meantime waiting for more oramorph to be delivered as I am in agony (isn't the word for it!) and waiting for the home visit from the GP.

Also waiting for visits from O.T and Physio today and Health Visitor.

Health Visitor said half one, and for some reason I think thats when O.T and Physio will be coming, and knowing my luck the GP will turn up then too... nothings ever easy. Cannot comment on that yet though, as it has not happened yet.

*fingers crossed*