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, 18 December 2009

So i contacted a company in charge of many PREGNANCY, MOTHER & CHILDREN magazines:

For confidentiality purposes and for respect of identity protection, personal info about myself and the lady who replied have been removed. They are irrelevant... (my emails are black text, hers are purple.)

Things in brackets are where I have removed content, think you'll see these clearly:

My last e-mail reply:

--------------

"FYI,

I am not a sales person, i am not selling anything, especially my disability, i have suffered for a long time and i don't want any other women to go through what i am going through and i certainly was not 'pitching' i understand that you deal with many people looking to make lots of money to line their pockets but i am proud to state i am not one of them. I have worked for my money, helped charites, worked for the NHS as a L.D. Nurse cadet, with all the fantastic disabled children and adults the world decide to shut out.

I was trying to contact magazines that state they care about women and their pregnancies but i see now that maybe you just print what you think people want to read and want free stories etc, i was happy for my story to be printed freely and nothing negative either, i prefer to be used as an inspiration for others to help them cope, thats why i was in the (challenge name here: aimed at inspiring young people to start their own business in the recession) challenge and why that article was sent to you about that too. My business did a lot of charity work and i am proud of who i am and where i have come from and i am proud to say i don't care about all the crap i have in my home, it may not be much, but i could live without it, what i cannot live without however is help when i cannot walk, food, access to a toilet and basic hygiene facilities that every person should have access to.

I am asking you to raise awareness about severe SPD prevent suffering of millions of women who don't know about it, I could be your sister, your mother, your daughter, a friend or relative as this can happen to anyone, would you sit back then? I doubt it, i think you would research severe SPD and you would find rarely anyone knows much about it, so would posting a short article on it, and how to manage it be such a disadvantage to your magazine?

I think as a customer, as an individual and as a disabled mother who has suffered and is still suffering, that it would help people to have some knowledge on SPD and how to manage it, so when their mothers, sisters, daughters etc get it they can help them, and we dont have to state NHS professionals dont know much, they will find that out for themselves, but when they do, they can say because of 'such and such' magazine i know what shes going through and this is what needs to be done so her baby doesnt die and she doesnt end up disabled for life.

Now what newspaper or other media area publishing their story would fail to mention where they heard that from, how they knew about SPD???

If your a magazine about health and safety of pregnant women surely it would be hypocritical to deprive women of knowledge that could change their lives, a few black and white letters on a small area of one page in one of your magazines could raise so much awareness, help so many women and their children be safe, now i dont have the opportunity, the voice or the magazine myself to do this, hence i am fighting for women everywhere to get the understanding and safety and knowledge they deserve.

I am no saint, I am not a hero, I am not a sales person, I don't want money, I don't want to sell anything, I am just a woman.
I am a woman who has suffered, and all i want is other people to not suffer like I have.

If you wished to help further you could help stop my suffering too, by mentioning my need for a stairlift, not even asking people to help.... but that is at your descretion.

Just think about it.


Kind Regards,
(My name here)
Sole trader business name here
(website address here)
T: (tel number here)"

--------------------

*note: i did send a reply before the one above but found myself begging her to raise awareness of SPD etc and did not explain that i am not pitching etc and certain things in her e-mail which was ignored, needed to be addressed.... so i sent a more appropriate and honest one above, a one that i wasn't holding my tongue on to please her, as I feel SPD is serious.*

--------------

"On 18 Dec 2009, at 11:12, (lady from magazines e-mail and name here) wrote:


Hi (my name here),
Many thanks for getting in touch and congratulations on the birth of your son. I'm so sorry to hear about your SPD and all the problems you've encountered. We are very aware of SPD/ PGP and cover it on an annual basis, although it tends to be more of a Q&A piece than a first-person story. I don't think your story would be quite right for our publication unfortunately, but best of luck pitching elsewhere.
Incidentally we don't pay for stories and I'm not sure the other parenting titles do either (although you may want to check), so you may want to consider getting in touch with the women's weeklies who do tend to pay.
All best wishes for the future,
(lady's name here)

(lady's name here)
Features editor
(magazine name here)
E-mail: (lady's email and name here)
Direct tel: lady's phone number."
---------------------------
Don't think i wrote clearly enough to get my message accross as i got the above message:
----------------------------

14/12/09 01:25 Subject of email sent: URGENT: I have a story that may shock and be of interest to you?

Email:

"My name is (my name here) and I have a story that may shock you and be of interest to you.

I am 22 years old and my pregnancy caused me to be disabled.

Blog site is http://pgpandspd.blogspot.com

I had endometriosis and polycystic ovaries and was told i cannot have children. I conceived on clomid and became disabled. Attached is an article about when i first found out i was pregnant and started my business (my business need not be mentioned in the article...

There are lots of things you can miss out of the article which will be fine by me (thats at your discretion) i just need this help for stairlift and need to help others about SPD.



Before I go any further my reasons for contacting you about this story are serious:
I wish for no other individual to go through what I have gone through, to prevent more individuals from becoming disabled, to raise awareness about the pregnancy related condition and I am desperate to raise a minimum of £4,000 for a L-shaped stairlift or have one donated.

My story may make you cry but know that I am coping as best I can and remaining optimitstic for our miracle child, our son.

The story summarised below, in which I will enclose a link to my blog, where there is everything that has ever happened to me about SPD and associated with SPD.

First of all SPD:

1 in 4 pregnant women get SPD : page 77, section 9, problems, NHS book given free to all 1st time mothers in the UK.

SPD is symphysis pubis dysfunction, it is where the pelvis misaligns when you move by millimetres or centimetres, it can develop into DSP, Diastasis Symphysis Pubis which unlike SPD can be identified by X-rays and scans.

5% of women according to acpwh get SPD severely and need a wheelchair (All statistics and facts are on my blog with links to accredited info) I am one of the 5%.

NHS, NICE guidelines state 9% of women suffer from SPD from conception,

This is my story.

I woke up around 14/16 wks and could not turn in bed at all, i was diagnosed with SPD at 16 wks, was in a wheelchair at 20 weeks.

Was made homeless and had no access to food during my pregnancy, had to close my business on the 18th july and my husband became my 24/7 registered carer.

I am completely disabled due to SPD and immobile.

I have had no access to a toilet, shower or bath since JULY 09. I cannot get upstairs, we are in council house now.

I use a commode and i am lucky if i get to a relatives once a wk for a shower (have to use shower seat aid) but it hurts everytime as there is not enough room for my legs to swing into the tub as sink basin and radiator is in the way.

my ex consultant made the allegations that my SPD is psychosomatic and my midwife has been horrid to me, stated early on that i am putting me and child at risk (during pregnancy) on a debt collecting visit from hospital for £10 for a tens machine that the hospital agreed i can have use of for free, she never did any antenatal checks and wrote down the debt collection as antenatal check.

i ended up on the bathroom floor at one point in hospital as nurses failed to use a hoist and wouldnt help me incase they hurt their backs.

i changed hospitals and the delivery was great, needed an emergency c-section but care was great. given new consultant met once and would help me.

after care was abismol and offensive opinionated remarks were put in my postnatal notes, the consulant discharged me without notification and because of ex consultant i need to see a psychiatrist and social services children in need are involved.

an ex O.T from the hospital suggested i showered at the leisure centre if i struggle bed bathing.

The prolene stitch from the stitch and beads have been left in me and was told would be removed, now i have been refused surgery and its non dissolvable and wont migrate. The nurse said its not like they have left a glove inside me.

i have been passed from pillar to post, treat horribly, isolated, insulted and now all i have is a physio and O.T whom are lovely but cannot help me until they try to get me an MRI scan...

The social O.T assessed me for a stairlift but needs confirmation that my condition is likely to be long term (which it is) but no one is sticking with me long enough for them to gather the evidence.

My stairs are L shaped and thats the problem.

Much more shocking incidents have happened and comments have been made and me and my husband have been made to suffer and still are suffering. I am desperate to raise much needed awareness as many health professionals do NOT understand or are aware of SPD and this needs to be changed as 1 in 4 women get SPD.

I have had to do much research and all can be found on the blog, theres about 48 blog posts and although it sounds many it shouldnt take too long to read.

I am prepared to be photographed for this article and you are the first magazine i have approached, i bought (magazine name here) all the time and still do and hope that you will help me to raise the much needed awareness, to help women now and help us get the stairlift we are so desperate for.

our son was born 20th november and SPD has ruined lots of motherly privilidges other women will have and i am deprived of.

I am on 200mg of morphine daily and have paracetamol on top.

some posts may be irrelevant to the article but please let me know what your feelings and/or thoughts are about this as i am not contacting other magazines unless/until you decline the article.

I am happy to discuss what content you wish to post too.

Blog site is http://pgpandspd.blogspot.com

Thank you for your time.

(My name here) x

Kind Regards,

(My name here)
Sole trader business name here
(website address here)
T: (tel number here) "


----------------

Right, I don't know if this lady will respond again so you may not hear anything more of this, but I have tried to raise awareness of severe SPD to magazines and certain TV news departments.
All I can do is apologise, and I hope that someone from the media will decide to use their voice to help women like me and you and the 1 in 4 that get SPD.
Mentioning severe SPD also helps minor SPD sufferers cope, we need a voice, we need to help, and we need it now.
x