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.

Monday, 2 November 2009

So disappointed.... my consultant really was below the belt today...

It's been a while since I updated the blog, that is because we have now moved house as we had to and we have been waiting for our broadband to be reactivated.

I have become depressed due to the disability I now have to 'put up with' and got myself a psychiatric assessment as I was also sick of health professionals not taking me seriously and acting like I could just walk when I really cannot.

I have accidentally tried as I have been half asleep or in a world of my own, and my body immediately reminds me that I cannot and I will suffer for it :(

The diagnosis? That I am quite optimistic despite the situation and my concerns are for my baby to make sure my baby has the best he can have, also that the problems I am facing are very real and not psychosomatic and that anyone who would have to adapt to such a severe disability despite the cause would feel the same.

This has also been confirmed by social services and my health visitor was fantastic, a great shoulder to lean on and vent to, and she really cheered me up as she said even though I am having such a bad time with the disability and have been stuck downstairs for months, the baby won't notice or care, he will be happy and well looked after and as long as he is clean, healthy and fed he will be happy... so maybe it is just me worrying....

... I was happier until today!!!!

Visit to my consultant went really BAD!!!!

Not only did he say that he thought the pain and me not being able to walk is in my head or should I say 'the pain is real it is just in your head' he also believes I can walk and don't have severe SPD.

When I asked him if he had worked with severe SPD sufferers he said yes (defining severe SPD sufferers: those that are 5%, get SPD mechanical or hormonal so bad they end up in a wheelchair and I have spoken to several who have had SPD for 11 years etc.) So i replied: Women in wheelchairs then? He said no crutches, which proves my point, that it is just minor SPD.

This coming from someone who does not even know what DLA or the Pelvic Partnership is. Who also does not have a doctorate or any qualifications/experience in psychiatry/psychology.

THE WORST THING IS he also said that I am putting my baby at risk inferring the child would be in danger as I am psychosomatic in regards to disability and pain and that I don't need a stairlift.

I have never cried so much in my life... I said to him I just want to be taken seriously and he got really defensive, he has referred me elsewhere and seemed quite keen to.

I feel this is just easy for him to say to make him feel better about not being able to understand or help my problem/condition/disability, other than that I wouldn't know why he could possibly want to state such things especially after I justified everything and said that professionals have stated that I am sane and no risk to my child, and said that it was myself who arranged that as I was worried about being depressed as a mam as I wanna be the best mam I can be, and after saying that because of the disability I have had no access to a bath/shower or toilet, cannot walk far, we both have lost everything as we became homeless and I had to shut my business early.

As if anyone would want to go without food when pregnant with a miracle child they would die for and love sooo much already. Someone who is fighting for babies born under 22 weeks to be acknowledged as human!!!

How dare he!

I mentioned that one of my friends SPD was not taken seriously so they overdosed etc, I failed to mention that was UNDER HIS CARE!!! (won't disclose identity to protect individuals and they are a fantastic person, parent and friend).

I feel what he has suggested is weak as a person, bullying, discriminating against disability and unprofessional and spoken unjustified, with no evidence and out of turn.

I am very shocked at him today, my husband said to me I cannot believe you were not expecting him to say that cr*p? But I honestly had faith in him and yeah I really was not expecting him to be so insensitive and closed minded to make such an assumption let alone state it out loud!


We were shocked because he got close up to my face and called me 'mental' before he explained the psychosomatic things and he has done some horrible things, more personal i will put in a complaint later if i have to!


I am so happy I am not vulnerably depressed and have my husband to rely on as I think words like that can push people too far... I already feel a burden on my husband and useless as a person as it is.... I would hate to think what someone not as strong as me would do.... it's people like him that cause such mental illness and depression.

I have had the worst time tonight as it really did upset me... but like my husband said, he is completely wrong and he won't be the first doctor to do something like that nor the last unfortunately and I need to move on and find someone actually experienced in severe SPD and thinks the transfer would be the best move for me as a person.

I cannot believe he still had that assumption though after I justified everything and had references to the people I have seen and he still said all I want you to do is to try... does he think I am not trying!!!!!

If this had happened to him or his wife I think he would sharp change his tune.....

I feel sick to my stomach today...