PGP / SPD My story:

Did You Know There May Be Surgical Options for Severe SPD? 🤔 For years, many people living with Symphysis Pubis Dysfunction (SPD) or Pelvic Girdle Pain (PGP) have been told that symptoms will improve after birth. For many, they do. But for some of us, the pain never fully goes away. Some people are left with long-term pelvic instability, chronic pain, mobility difficulties, and life-changing disability years after pregnancy. Whilst doing some recent reading, I discovered that surgical techniques have continued to evolve. Historically, severe pubic symphysis instability was treated using metal plates and screws to stabilise the pelvis. However, newer procedures are being explored using specialised suture and fixation systems designed to provide support whilst allowing a degree of natural movement within the joint. These procedures are not routinely offered to most people with SPD and appear to be reserved for severe cases involving significant instability and ongoing disability despite...

From My Bed, I Built a Lifeline: When I ran a helpline during the years I was bedbound, I came across far too many women from all over the world calling me for help, support, and simply someone to listen. Some were pregnant with their first child. Others their sixth or seventh. Many had been abandoned. I listened, comforted, reassured, and helped them navigate systems that often seemed impossible to access. One woman's story has stayed with me all these years. She was pregnant with her sixth or seventh child. Her husband had left her. She was alone, disabled, in pain, caring for multiple children, and had no support network around her. I helped her explore what support might be available, including carers, adult social services, advocacy referrals, and local assistance. I wrote supporting letters and helped signpost her to services that could make a difference. All whilst I was bedbound and housebound myself, living with permanent Symphysis Pubis Dysfunction (SPD) and Ehlers-Danlos...

When Medical Authority Becomes Abuse: While decluttering today, I came across my formal complaint from 2009 — the one where I challenged a gynaecologist (I’ll call him Mr O) who was repeatedly abusive and inappropriate towards me during pregnancy. Reading his responses now, with distance and clarity, the hypocrisy is glaring. His explanations don’t hold up against medical facts. He openly shows disdain toward me for using medical knowledge to challenge his behaviour — particularly around the treatment of Symphysis Pubis Dysfunction, which he clearly misrepresented. He attempts to justify referring me for psychiatric evaluations and social services investigations, presenting this as “normal duty of care for every mother.” He supports this narrative by claiming I was abusive and that everyone around me would say the same. Of course they would — because he had already primed staff by labelling me “psychosomatic.” He dismissed my documented physical needs, including my need for a stairlift...

I know that living with SPD is difficult enough, but mix that with a joint condition and it is a whole new ball game. But, that does not mean that you cannot get the help you deserve.  http://www.hypermobility.org/   are a HMS Charity that has guided me through some of the tough times with HMS. If you become a member like i have, you receive lots of important and relevant information, and if your blessed to be in an area where they meet up, in which i am not, then you can discuss things with others who are in the same situation. I cannot update anything else as the Health Psychologist Department have not been in touch despite the fact that i was informed ONLY the Pain Psychologist Dept, have dismissed me. I am losing faith and losing patience and i am very grateful to be able to receive counselling yet again via my GP. But this counselling is not the psychology i need to be able to accept this disability to the full. Many women struggle accepting SPD, HMS and ev...

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 an...

Official Link for facebook users:  http://www.facebook.com/note.php?created&&note_id=221810881208099 FULL info provided below also: Applicants for volunteer and trustee positions: Please send the following questions filled out to: help@supportpelvicdysfunction.co.uk   Please note : We have additional meetings with cavos but at this time they are not mandatory for trustees. (trustees may be welcome to come along to some of them, or all at a later date). Required information via email or post.  POST: Please request corresponding postal address by calling 07721656764 on Mondays OR Fridays, 11am-4pm. Suggestive advice line open from 10am-5pm on same days. (The following information is mandatory whether the applicant is known by us or not.) *If question is starred, it is mandatory.  (If you do not have a landline, please state in answer so question has been answered, however you must have atleast one mobile or telephone number you can put down s...

HOW TO SURVIVE WITH SPD OVER THE WINTER PERIOD: Here are a few things you can do to help you stay well and as pain free as possible this Christmas Period: Avoid going out if your SPD is very severe and if the weather is very poor,the cold can make your SPD much worse so you must stay warm. Shop online, or get a relative to shop for things you need for you. We understand that being stuck at home can make you feel trapped and can affect your self esteem, so we suggest that you invite people over to you and invite people who will understand and can help you be happy and remain positive about the SPD and the situation you are in. It does not matter the severity of the SPD or whether or not you are pregnant with SPD or have had your baby and still have your SPD, SPD at any level, in any situation causes pain, makes you uncomfortable, and can affect your mobility and can make you feel low or affect your confidence. You are not alone and the support group is a great place to start...