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, 21 September 2011

Health Psychologists:

Well after having me in the system over 3 years and missing me out, i finally got an initial assessment with one pain management health psychologist (i will call A) when the referrel was made to psychologist B.

After listening to me and seeming to want to help A stated that A would be having a meeting with B in 3-4 weeks and will be in touch afterwards.

Having previously felt suicidal and still do when i have times i feel really low or have had major problems, i discussed options with A and A stated that they have no services to help anyone who are suicidal at any time and that the person should call 999 or visit A+E when feeling suicidal.

This really hurt me as i was sent to A+E recently with PCOS -potentially- cyst pain / gynae related pains in my right side, and had been dealing with a specific dr who said he would operate when i was no longer fat. If i am honest i am not Fat, i am a little overweight but my BMI states that i only slightly obese. Anyway i lost some 2 stones and he withdrew his promise to operate via lathoroscopy.

 (May not be spelt correctly, sorry)

Anyway i was in agony and on gas and air and had literally and very seriously, had enough. I told the Dr if he was unwilling to help me he needed to get a Dr who would as i need help (still do) and i still have not got the 'new' gynae Dr as i was too unwell with my joints when my appointment finally arrived 3 months later.

That same night though, having been in all day i confided in the Dr and stated i would end my life if sent home because i cannot cope with the pain anymore, it was too much and i had had that pain for a long time! The Dr did not care and said it was psychiatrists i need and because he was from the same hospital as my ex consultant i feel he has taken a leaf out of his book and got wrong information about me as he did not even know or care i had been diagnosed with Hypermobility Syndrome!!!

Psychiatrists number 1021 and 1022 arrived and said i was not their problem as they cant help as its a gynae i need as im only suicidal due to pain!

I was sent home and if not for my husband and family i would not be here today!

I have to help myself as no one else cares.

Back to Psychologists, they finally got back to me after i had left a message with B, and anyway, A phoned and stated she would like to discuss my case with C (a psychologist i had seen about something else back in 2008) and I agreed.

But i have heard nothing back and i hope they do not send me to C as it is in fact B i need to see and i have waited so long and they never stated they would need to speak to a C at all!


A stated that A and B's concerns were that they do not know how i would respond to short term help, and i said short term is better than none and you won't know unless we try it!!! Three years i have waited, i am desperate, as i am, and need your help.

So now im back in the waiting game, and i dont think they can offer long term help but i told A that short term has helped me and A will only find out the same as i have told her from C.

My son is coming up two and he is perfect for his age, speech, cognitive development, motor skills etc. Perfect, and all A kept asking about was my son! He does not need any help, i need the help and i am fed up as he is also safe and in a safe and warm, loving environment!

I still use the anti-smacking, conditioning, token economy, time outs, distraction and ignoring techniques for tantrums from my previous work experience and education and i still have the BTEC national diploma book in early years.

A made me define all my experience and everything as if she had done nothing but ignore everything i had told her in the initial meeting, and i am gutted!

It is not my son that needs anything, all i need is someone to give me SOME time, to help me ACCEPT this disability!!!

Frustrated and feeling more and more alone, exhausted and fed up.

I do not care i am going to be honest, even though i am embarrassed, i have not had a proper bath or shower for about a month (flannel washes) and i have not washed my hair in 2 weeks because i could not due to my joint flare ups, i was bed bound downstairs on a sofa bed for the whole of August 2011, and i am still very ill. (hate not having downstairs toilet, just want to feel 'normal' or average and independent)

i need help soon.

There is NO home start to help us in this area or anything, thinking about it we have an OT assessment we are waiting for, but it might just be easier to move, this is because we can move into a property that meets my needs by having a downstairs toilet, and it might also have ramps etc, but we are needing the ramps changing here anyway as the metal grid holes are sharp and my two year old likes to poke the holes and has cut his fingers before and its really upsetting me, and were being measured for a new stairlift anyway as this one is breaking all the time so if we need those here, may aswell get them in a property that CAN be permanent and meets my needs!

It would mean we would never have to move again!

And life would be sooo much easier for us a family.

We're just worried and nervous with the stress of moving but people are right, theres no point keep patching this one up and getting stressed when we can move into one that can be adapted and suitable for my life, and my family's.


Definitely something we are considering....

Hope we can get help and things and im almost crying now at the thought of having a proper house, my needs met and our lives being so much easier!!!

We have no where to store the commode or wheelchairs or scooter here, and the cupboard under stairs, we had another look, may be too small for a toilet anyway! Maybe the OT is definitely right and moving would solve all our problems!

*fingers crossed*

Guess we had a very stressful move when we moved here and its put us off moving again as it was rushed, i was 35wks pregnant, we had no benefits as they were all pending, no fridge, no cooker, and a million and one additional problems, the house we havent decorated and have partly carpeted, downstairs is rugs etc, and this house has no rooms decorated at all, theyre all a state, and we may get a home with atleast one room done, but thats little things we could try and sort later. Its the fact we had so many problems moving and had to do so much all at once and had problems with BT charging us and SKY etc and on top bailiffs, many bailliffs from previous tenents that has gone on for 3 years as they are STILL illegally using this address to get loans! Don't know how they do it!!!

This time we move though, we have a choice, and we can do things step by step, and we dont have to accept the 1st thing offered, especially if it doesnt meet our needs, layout wise etc. So things CAN be easier but i know its still stressful.



*FINGERS REALLY CROSSED*

PLEASE wish us some good luck!!! <3

The council and social services have been great and so helpful so far and i hope that they can continue to support us throughout the move and adaptations etc.

Lets see :)

Feeling hopeful, and dreaming of a real life as a proper family in a home that can help us live our lives much easier....