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, 7 August 2009

07 August 2009 - What independence?

07th August 2009.

Hmmm....

Thought I would feel better today and more independent but I have had one of my worse nights ever, and cannot move today at all without the pain being bad again.

My house adaptation stuff came and instead of feeling more independent, in all honesty, i feel old and cried. They haven't given me a helping hand ( a thing to grip things from the floor etc) either so I am still extremely embarrassed at the fact that I need help from my husband to dress myself and everything. If I drop something, I may as well forget about it unless my husband picks it up for me and I hate the fact that he is more like a slave than a husband, when will I get the phone call I need, "we have gotten someone who is able to treat you so you will be able to walk now and not suffer for the 4 months you have left."

I am starting to get scared at how worse this is getting and upset that I cannot take any more pain relief safely and I am even having thoughts like what if this continues after child birth? I would feel useless as a mother... I cannot even look after myself.

I feel useless, I feel like such a burden on my husband and people who help, and I have no one to talk to.

I have never felt so isolated and alone, yesterday was fantastic but only pointed out how alone this condition has made me.

Just having a bad day.


06 August. Freedom?

On the 06th August 2009, I was told my wheelchair may not be ready for up to 2 weeks, so I was lucky enough for a relative to go to the Red Cross and pay £20.00 to hire one for 6 weeks. (You get this back but they ask you to make a donation.)

The relative brought it to my house and dropped me and the husband off in town.

This is the first time I have been out of the house properly for ages and.. well.. it was nice :)

We got fish and chips and sorted a few things that needed to be sorted out, out, and I am/was so happy to be able to see outside without being in extreme pain when moving.

My husband pushed me everywhere despite me trying to attempt to steer the thing... that was funny as I couldn't quite manage to steer straight, so I am lucky enough to have someone there who is so wonderful and helpful and made today the PERFECT day.

Its all the little things that happened today that made me feel so much better. Just the ability to go out for fish and chips, I felt on top of the world.

Oh! As my relative was about to drive away I had them in stitches laughing as I was attempting to wave at them as my husband pushed me up the ramp and all they were able to see was this moving hand behind the wall, so made me chuckle too.

I never felt as self conscious as I thought I would being in a wheelchair, although one man gave me a prolonged evil stare and when i glanced at him (twice) he never broke eye contact... this was the only unpleasant thing that occured today though.

But there is nothing as queer as folk!

When I got home, I tried moving a little and still cannot, bowled over in agony curled up as best as I could on the couch with a quilt and my Tramadol and Paracetamol, but despite being in severe amounts of pain and the little one kicking me like there is no tomorrow (Must be comfy in my tummy tum tum), was still in a happy daze due to the freedom I had today.

Overall, best day in ages.




05 August. Confused.

On the 5th of August, a few things had happened since the enquiries. I am 23 weeks pregnant exactly today.

My midwife was reluctant to make home visits in the first place and now I am seeing my consultant (who is now back from holiday) on Monday 10th August, my midwife has stated he will see to my ante-natal care. (Feel like her hands have been washed from me? ...yeah)

So will I ever meet my midwife this pregnancy?? It is looking more and more unlikely.

I still need to sort out a MatB1 form or something for SMP, get some stockings (as suggested by my Occupational Therapist 'E') and sort a few more things out like parentcraft/ante-natal classes.

Luckily this time transport has been arranged via my GP for the 10th August.

I will have to see what Consultant says in regards to referrals, as my midwife has said that PGP is more or less untreatable despite what page 77 of the NHS free book to all first time mothers states in black and white. So confused.

I am anxious and scared as I have had endometriosis and polycystic ovaries (problems) in the past, my consultant has treat me and been great but I am terrified my Consultant won't take me seriously this time due to the problems I have and have had, this is my issue though and I hope things go OK as it's obvious that I am suffering with PGP/SPD.

My OT says that my house adaptation equipment is on it's way and OT will try and help me with them monday 10th PM if I am back, and I have filled out yet another medical form, this time for ESA so will post that as soon as possible.

Fingers crossed for something good to happen.




Tuesday, 4 August 2009

04 August 2009 - Hope shattered

On the 4th August 2009 I contacted my GP and Consultant (I am under shared care in regards to pregnancy care).

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

On the 3rd of August 2009 I got a phone call from the Pelvic Partnership whom I had called previously as I found them in the NHS book that is given free to all first time mothers, (page 77 section 9 Problems, Tel number on page 150).

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

On the 29th of July I was shocked to find I had muscle spasms which were contraction like in pain style and were agonising.

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

On the 29th July I saw the new Physiotherapist I am going to call A.

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

On the 27th July it took me 3 hours to try and arrange transport to my 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

On the 20th of July 2009 I was rushed to hospital, Labour ward, with more 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

On the 16th of July 2009 I was diagnosed by a physiotherapist (hospitals and names are not included in this to protect identites) by C.

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 found out I had SPD (Symphysis Pubis Dysfunction) which is mainly known as Pelvic Girdle Pain (PGP) as the Sympysis Pubis is not always the only area that is affected, when I was about 16 weeks pregnant.

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

This will help others and raise awareness and allow YOU to speak out about what happened to YOU.