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, 11 November 2009

Finally meet the light at the end of the tunnel:

Never mind baby meeting the light at the end of the tunnel, I did today when I met my new consultant and the new midwife that dealt with me today.

I was extremely scared and anxious and worried about my baby and all the talk of high risk and things and this morning on the way I got a call from a children in need team lady which panicked me lots as it is all unnecessary but if they insist on wasting their time I am more than confident that they will be able to see the facts.

Saw the midwife before the consultant and I broke down and cried a bit and was honest about my past and how things have gone so far, and all I want is to be able to walk again, have a healthy baby make sure he is ok and be the best mam I can be, she gave me all my results from back in August till today, which no one had given us previously and she gave me a much needed cuddle.

That cuddle was just enough to lift all the stress and weight from our shoulders we have been carrying till today, 37th week in pregnancy. She was reassuring and so kind. I am still in shock at how far a smile, a positive attitude and a caring nature can go. This meant so much to me, felt like I had won the lottery, really did. Really was the best thing.

The consultant was fantastic too and he has restored all my faith in the NHS now, I am relaxed and much more confident about the birth now, I feel I am in really good hands and he confirmed he believed me about the SPD which was such a relief for once for me not to feel I have to prove anything or that I am a burden or a problem and now I don't need to pay for a private physio to justify the condition prior to the birth.

He even agreed to refer me to the Physio I have been speaking with after the birth if the condition has not subsided and I am still struggling which is greatly appreciated and again means more than the world to me and my husband and means I could get better for my baby!

He spoke of possible induction so we could meet our baby as soon as next week! Which is such a relief due to the amount of pain I am in, which I know I am not coping with but baby is healthy and happy and it is him that is keeping me strong!!!

I see him next week wednesday and really have a good feeling about everything now, it is so weird how things have turned.

I am still adamant on supporting SPD sufferers as I was between two hospitals previously that I feel now, have caused such unnecessary additional suffering and stress throughout my pregnancy up until now.

Raising awareness cannot do any damage and should help others get the care they need and help professionals become better and more respected people, as I know their jobs are difficult and some may be making their jobs more difficult than necessary, so knowledge is always a good thing.

I feel so blessed and lucky now to have found this consultant and this team prior to my labour and birth as it means so much to me to know I am in safe hands and has taken such stress away.

I have been smiling all day and for once cannot wait to see the health professionals again!

In all this madness my ex consultant did one thing in my favour, and transferred me to this new hospital! Although he said they would say the same I am glad I met with them and that they didn't, they seemed to know lots about SPD too!!! So i didnt have to even show them the SPD acwph documents!!!!

*siiiiigggghhh* of relief!

On the way out, this is one thing that I will remember forever, the midwife came up to me asked me how I felt and I was so excited to tell her that I am so happy and I cannot wait to walk again and that I may be induced next week, what a relief and tears were filling my eyes as she gave me a second cuddle and kiss in the forehead, I have never felt so warm, safe and happy and believed in my life. That feeling I will carry with me forever, its feelings like that you miss especially when you have never felt like that for around 37 weeks during your pregnancy and its surprising that all it took was for someone to listen, let me sob a little, believe and advise positively in regards to my care.

Today is a turning point and a day I will never forget as long as I live.

I may sound insane at how much today means to me but I mean it genuinely from the bottom of my heart, after a long hard struggle it is fantastic to have a day like today actually happen, it really is!

Cannot wait to meet you baby... think things will turn out for the best now!! <3


Tuesday, 10 November 2009

oooh i just remembered: IMPORTANT!



I will add this here while I have just remembered.

During the talk with what is now my ex consultant in regards to the psychosomatic, unjustified diagnosis, my endometriosis was mentioned.

He said to me that he had operated on me in the past due to abdominal pains as a question, I said yes, my 2nd laparoscopy in which you lasered my left ovary due to endometriosis (as he had previously stated many times over the last year).

He replied that he only lasered me (my husband as witness) as I was complaining of pain all the time!

As if to imply I never had endometriosis.... so did I or didn't I Mr. Consultant? What is your game? ...and if I did not, what has been causing me agony abdominally since 14 in relation to my periods?? As you said yourself polycystic ovaries are not painful? Or was that psychosomatic as well?

Surely it is illegal to choose to tamper/operate/treat someone for something they ''do not have''?

I really suffered through both laparoscopies and pain was really bad, does this sound like someone who would endure such horrid operations to believe in *cough* make belief pain??!?!

I am really concerned about this and as soon as I get physical evidence for my severe SPD despite my physical inabilities and matches to the condition, in which the NHS have denied me so far, I will have to take action as that sort of consultant should really not be working in my eyes!

Malpractice at it's best....

So... if I dont get to see a private physio before birth I will be asking to see a specific one on NHS after birth for treatment of SPD and asking their opinion. Medical assessments are a necessity in my eyes, and it is not my fault they do not have any professional experienced in severe SPD available to assess me now!!!

I will sort this out as best I can and once I get someone who knows what they are doing to justify my condition and help me I will look at my support groups I have set up and attempt to organise something permanent to help SPD sufferers everywhere and raise much needed awareness...

Wish me luck!

I need all the luck in the world:

Lady Luck please shine down on me....

I see my new consultant tomorrow at a different hospital now (will be exactly 37 weeks).

Hope he takes me seriously and that I can get a professional examination for once.

This SPD is agony, the immobility is still agony too.

I had a dream the other night that I was walking in and when I woke up and found I couldn't even turn over again and was in absolute agony, it hit me all over again.

For the last three days I have had the baby burrowing deeper and deeper into my pelvis and I really am not coping, I feel sick all the time, drained, in so much pain and I think I will ask/beg the new consultant to just induce me.

SPD is bad enough on it's own but with the baby burrowed in there I am screaming more than usual.

I have not been good company for my friends who have taken me in whilst our house has mandatory major council works done due to being ill still. Their stairlift has been such a godsend, making me more independent and helping me up and downstairs so I can sleep upstairs at theirs with the help of my carer/husband, and with him helping me have a shower too (which is not all what people may think, it is so difficult to shower when you have to use a seat, need help with everything and feel useless) but he helps me and I feel better being a girly girl.

The house of commons wrote back and told me nothing I did not already know, and the Social Services O.T has failed to phone me back regarding the clash of their appointment to assess me for a stairlift with my urgent appointment with my consultant.

Think I will just buy a straight stairlift from ebay and just end up hurting myself with the first 3 steps, if I manage to conquer them at all. Not that they care anyway. Atleast I will be able to get upstairs despite what damage or pain it will cause to myself, which is all apparantly in my head anyway...grrr....

It will take forever if at all for them to bother themselves to get me one. After all like the hospital O.T said "Even people with Parkinson Disease are not being given stairlifts"... as if that makes it right...

So yes.. I don't know who I can trust right now and I am hoping for the best tomorrow, would make a nice change to be taken seriously, examined, believed and helped tomorrow.

Fingers crossed.

At the end of the day, I have options open that I have organised myself, such as the private physio etc... so if things continue to get worse I have options to prove my condition.

..trying to stay positive for now....heard good things about new consultant so let's see...

<3

Wednesday, 4 November 2009

MORE info on SPD: AND LINKS:

BIG thanks go out to a lady on babycentre for finding the research below, but I hope this helps all other sufferers too!!!

She posted:

Here's a reference in a medical journal:

Owens K, Pearson A, Mason G. Symphysis pubis dysfunction: a cause of significant obstetric morbidity.

European Journal of Obstetrics Gynecology and Reproductive Biology2002;105:143–6.

Objectives: To investigate the prevalence and severity of symphysis pubis dysfunction (SPD) in pregnancy and the postnatal period. Design: A postnatal questionnaire was sent to 248 women who had been referred to the Obstetric Physiotherapy Department in 1997 and 1998 with symptoms of pubic pain either during pregnancy or soon after delivery. Setting: A north of England teaching hospital, The Clarendon Wing, Leeds General Infirmary. Participants: Questionnaires were sent to 248 women. One hundred and forty-one were returned (response rate 57%). Results: The condition is associated with much unrecognised obstetric morbidity. The prevalence in our unit over the 2-year study period was 1/36 women. Many medical and midwifery staff have little knowledge of SPD. Patients often felt ignored when they complained of pain. One out of four of the respondents were still symptomatic 6 months later.Conclusion: Further research is needed to identify the best practice in the antenatal care provided, including the provision of support belts, the most appropriate mode of delivery and postnatal treatment.

If you PM me your email address I can send you a pdf of the full article.

Secondly, clinical recommendations from the royal college of midwives:

Fry D, Hay-Smith J, Hough J, McIntosh J, Polden M, Shepherd J,

et al. National clinic guideline for the care of women with symphysis pubis dysfunction. Midwives 1997;110:172–3 - it's not possible for me to get a copy of this, but the fact it was published means there must be some guidelines for midwives.


She also posted:

http://www.nice.org.uk/nicemedia/pdf/CG62FullGuidelineCorrectedJune2008.pdf and http://onlinetog.org/cgi/reprint/8/3/153.pdf

Symphysis Pubis Dysfunction
Physiotherapy
Volume 83, Issue 1, January 1997, Pages 41-42

Deborah Fry MCSP, Jean Hay-Smith, Jennifer Hough MCSP, Jeanne McIntosh MCSP, Margaret Polden MCSP, Jancis Shepherd RGN RM MTD and Yvonne Watkins MSc MCSP MMACP


NICE antenatal care guidelines page 113:

"Symphysis pubis dysfunction has been described as a collection of signs and symptoms of discomfort and pain in the pelvic area, including pelvic pain radiating to the upper thighs and perineum.

Complaints vary from mild discomfort to severe and debilitating pain that can impede mobility. The reported incidence of symphysis pubis during pregnancy varies in the literature from 0.03% to 3%. In Leeds, a hospital survey of women (

n = 248) in whom a diagnosis of symphysis pubis dysfunction had been made, estimated that 1/36 deliveries were associated with symphysis pubis dysfunction either during pregnancy or soon after delivery.219Among the respondents (57% response rate), 9% reported that symptoms first occurred in the first trimester, 44% reported symptoms in the second trimester, 45% in the third trimester and 2% during labour or the postnatal period. [EL = 3]

There is little evidence in the literature on which to base clinical practice. No higher levels of evidence than case reports were located on effective therapies for symphysis pubis dysfunction, although the use of elbow crutches, pelvic support and prescribed pain relief have been suggested.

220 [EL = 4] It is important to remember that many medications for pain relief for bones and joints may not be appropriate for use in pregnancy.

More research on effective treatments for symphysis pubis dysfunction is needed."


UPDATE:

just spoken with a private physio today who was fantastic and he has said after childbirth i could be referred to him on nhs!!!! which is even better!


means i just need to get through the next few months and then atleast i will receive treatment to be able to walk again after baby is here!!! ♥

After describing my pains he doesnt think its in my head either!!!

....just goes to show...I may be able to walk sooner than they think and maybe i will have grounds to take action finally, and to protect other women from some nhs staff!!!!


Baby has dropped and I feel let down:

*OH SO ALL SEVERE SPD SUFFERERS ARE PSYCHOSOMATIC AND PUTTING THEIR CHILDREN AT RISK ARE THEY?*

My baby has dropped now so I am really excited, in all this madness and mess he is so fantastic we were playing with Mr. lumpy as he is known now despite us already having given him a name, all night and he was so responsive, he is so beautiful already and I cannot wait to meet him.

In all this chaos he is the best thing that is happening right now.

Got a call from my G.P today, the call was so-so... I am disappointed as the NHS have failed to provide me with a medical professional experienced with SPD or even experienced in pelvic joints, so looks like I am going to have to go privately if I want to be taken seriously.

As fine as I am to see a psychiatrist I do not understand how they are so keen as to suggest it is psychosomatic when failing to even be prepared to allow me the assessment of an experienced individual who can confirm my condition or as they seem to want at the moment confirm there is no condition.

I personally do not see how a psychiatrist can magically fix my misaligned pelvis before childbirth and believe me I will be taking action if anything happens from what I define as this malpractice.

It is easy to suggest something when you yourself are inexperienced but surely you would want to have the opinion of someone experienced and capable of examining me (which I have not had yet) first prior to assuming that it is psychosomatic and even making allegations that I would put my baby at risk.

I am disappointed at the lack of faith in individuals and the lack of care, I feel they are unjustified as they have lack of medical evidence as they are continuously refusing to examine me so I am taking matters into my own hands and going to see a professional privately myself.

Then I can provide the results and fair enough if they do turn around and say well there is nothing whatsoever physically wrong with you, of course I will then see some one in regards to cognitive abnormalities/mental conditions to get better; but to just immediately place an individual in such a situation without providing medical evidence that the condition does or does not exist is just careless.

I will be taking legal action if there is permanent damage from such assumptions.

They have to remember that it is just logical surely common sense to have a pelvic joint specialist review me prior to just wasting money and putting me at risk with the condition to someone who 'I need to work with to be able to get through childbirth'.

They don't take the pelvic partnership or the ACPWH seriously and despite the study I posted on this site they seem to prefer to act careless.

I am of no risk to my baby, and they have one big fight on their hands as I am not someone they can walk all over and I am not vulnerable enough to just give up, believe what they say, become depressed and worst case scenario, as some women would, overdose or similar.

I need to make a stand not just for me but for every SPD sufferer who they are taking advantage of, and putting in a vulnerable position, assumptions and lack of evidence can lead to fatalities. They need to be prepared to offer what page 77, section 9 Problems, right hand column (first NHS baby book given free to first time mothers) states in black and white. REFERRAL to specialists!!! Not people who believe they are specialists because they have experience with some women who have crutches and are fixed in the closed minded state that SPD is hormonal and only starts in the third trimester.

Something needs to be done now, so I will get MY OWN medical assessment from a PROFESSIONAL in PELVIC JOINTS and then I will happily own up if they are right!! And if they are wrong as I know they are I will be taking action.

Simple as.

Enough is enough, I am sick of them putting me through pain just because they are inexperienced with SPD, I have suffered enough! I have lost enough! I have wasted enough time justifying myself to people who are ignorant!

I only allowed them to examine me on my back to make sure my baby was safe and YES IT WAS (without swearing) EXCRUCIATINGLY PAINFUL and no mother to be should have to deal with such problems in their pregnancy, let alone anyone in general be forced to put up with what I have.

Just because I had a sane reaction in my past to a traumatic event does not suddenly define me as mentally ill. It is sad that 'professionals' in modern day society are prepared to ruin peoples lives with such closed minded, unjustified, assumptions.

This is NOT over and they are NOT taking my child from me, my message to them is clear:

Our child is our LIFE, and I would not expect any of them to understand when they are clearly incapable of referring me to the CORRECT department prior to just wasting my and others time labelling me from opinion!

My child will be very much loved and in all fairness I hope to God my condition gets better on its own as I cannot cope being involved with such people for much longer.

Get over yourselves and get me the correct referral! You are only failing as a Dr. when you fail to provide appropriate care instead of caring about your pride and trying to justify that your unsupported allegations are correct! People are more important than your pride, and you will only dig a hole for yourself by protecting your pride and referring people with real issues to the wrong department, I will take action if and when you make this matter worse by your decisions.

I know I am being harsh, but enough is enough, and if I don't do this and care, who else will? As the pelvic partnership cannot converse with professionals and professionals are not prepared to listen to them or SCIENTIFIC STUDIES BY MIDWIVES IN 2007 either.

RE: Study by Royal College of Midwives-Evidence-Based Midwifery, Sept, 2007 by Vanda K. Wellock, Margaret A. Crichton



Wish me luck guys as I have one hell of a fight on my hands, how are you supposed to justify your issues to people who already assume it is all in your head, and are not open minded enough to think otherwise, even for a second, I think I would have a better more intellectual conversation with a wall.


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...