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.
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/inde x.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, 7 August 2009
07 August 2009 - What independence?
06 August. Freedom?
05 August. Confused.
Tuesday, 4 August 2009
04 August 2009 - Hope shattered
GP stated that they cannot refer me to such people on NHS.
I phoned back GP was in meeting so I left the message that according to the NHS book you can....
Let Consultant's secretary know what was going on etc, and was shocked to find how clueless she was in regards to SPD and PGP and she took all the hope I had left from me by saying in all the time she has worked for Consultant she has never seen him refer anyone in association with PGP/SPD and I had to give her a lot of info about it including the website address for the NHS book.
Less hopeful.... Just want my life back a.s.a.p.
03 August 2009 - Hopeful
The lady that spoke to me explained the correct procedures and told me for the first time I had heard this, that SPD/PGP is treatable.
Simple Manual therapy from a chiropractor, osteopath or Manual Physiotherapist which your GP, Midwife or Hospital Doctor can refer you. (ALSO stated in the NHS book as mentioned above, page 77.)
I was so relieved I don't want to feel useless, disabled and worthless anymore, and this pain is getting me down.
I had already had to close my business and have a fight on my hand for benefits. (Another story).
That afternoon the Occupational Therapist arrived as expected and was absolutely fantastic. I am calling her E.
E helped make my life easier straight away by merely understanding the stress, suffering and difficulties I have in everyday life now.
She is temporarily adjusting my home to make my life easier, and my husband is still full time carer.
DLA takes 11 weeks to process (Disability Living Allowance) so we are still waiting to hear from them and Employment Support Allowance which has been sent to processing too.
E has also measured me for the much needed wheelchair.
I feel more optimistic and less depressed.
29th July - Scared of losing baby
They kept getting worse so I rang my midwife who told me to phone the Labour Ward.
The Labour ward told me to phone an ambulance and to come in immediately.
The ambulance staff were lovely and helped me breathe whilst in pain on the phone until a gentleman turned up to give me gas and air, an ambulance then followed and premature labour was suspected.
We were horrified and scared.
At the labour ward it was concluded that the pains were not contractions and were related to SPD/PGP and are likely to have been triggered by the movement I had done at the Physio's.
My support belt was applied again and I was discharged to continue to take Tramadol but in less quantity as it can have negative and unsafe affects on unborn babies.
29th July 2009 - Second Physio
A kept stating that I had been measured for crutches despite A not being present at the time.
A was overly defensive and was difficult to communicate with.
In the end we (me and my husband) managed to get our points accross in which she showed me some exercises which were extremely painful.
I walked a few inches whilst screaming and in agony to be measured for new crutches.
A was reluctant to issue me with a wheelchair in which A finally helped by referring me to an Occupational Therapist to query one.
A also explained that the treatments of PGP in the form of Acupuncture and water therapy require transport to go to therefore I cannot be treated those ways.
A also stated this is a problem with patients who have missing limbs.
My opinion: Just because patients with missing limbs cannot get there does not make it right for them to not provide transport for disadvantaged people including ones with missing limbs.
A also stated that I should refrain from shopping etc and have my husband do it leaving me housebound and depressed, if this was a permanent disablement, which in some cases it can be and will be for 4 months in my case, hopefully, isolating someone is merely penalising them as opposed to helping them in regards to their disablement.
We had to use a hospital wheelchair at all times in which my husband struggled to be able to help me into the disabled toilet which didnt have enough room for wheelchair access let alone access for carers.
27th July - Fight to get to appointment with Physio
The GP's and The Physio dept. kept passing the book and if you do not have a need for oxygen or are a wheelchair user you are not eligable for you GP to provide transport.
(Out of courtesy) The Physio dept. managed to magically organise the transport I was suffering to try and organise myself. Despite being pregnant and trying to have minimal stress.
20th July 2009 - Hospital with pain
I was issued with Tramadol to replace the codeine I was taking and asked to take it with paracetamol. 50mg tramadol per capsule.
They referred me to the physio dept. in a different hospital.
16th July 2009 - 1st Physio
C was a physiotherapist that decided to see me when C realised that someone had misinformed us and sent us (me and my husband) to the wrong hospital. (Out of courtesy she saw us).
I could not move from the chair in the waiting area and was in a lot of pain and crying.
C gave me two support belts and 2 crutches which I was not measured for and made me have to bend over to use them.
We had currently purchased a walking stick having not been familiar with PGP.
Introduction:
I will be exactly 23 weeks pregnant on Wednesday 05th August 2009.
This is my experience with PGP, how I feel, the problems I have faced and I am still facing, the action I am taking and how I feel.
I suggest others post their stories in this discussion section at: http://www.facebook.com/pages/Supporting-sufferers-with-Pelvic-Girdle-Pain-Symphysis-Pubis-Dysfunction/99814304228?ref=mf