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...

..A noose that is unwanted and put there by so called professionals trying to help, who are just making things more complicated and causing more suffering if you ask me. (Don't worry was merely a metaphor.) I finally gained access to much needed services, i.e. Pain Management Clinic and Physio experienced in Manual Therapy, when we receive the initial assessment from Social Services, which *surprise, surprise* was based on some false information too! The ex consultant of mine and ex midwife accused me of 'exaggerating' my condition and stated that I sought access to Adult Services and additional help RE: my condition, without consulting them. Do these people NEVER write anything down? I asked, I begged, I screamed, I cried, I gave up and tried to help myself, as they refused me the help I need. So now I hope they are happy as Welfare have defined our young son as "a child whose vulnerability is such they are unlikely to reach or maintain a satisfactory level of health ...

You'd think things would get better from here... you would be wrong. I was in agony the same night I was discharged and my pelvis locked up when I laid flat on the bed preventing me from breastfeeding and I had to sleep on the sofa. My parents had to come out at 4:30am and help my husband lift me to the sofa. When it did this again the next day the urgent care dept out of hours suggested I phoned the ward I was on, the ward I was on did not want to know and as far as they were concerned as they stated "You have had the baby now..." and basically I am no longer their problem. So I phoned A and E and and my mam and dad came and took me and the Dr there gave me morphine but said I could breastfeed on it. Morphine made my baby vomit so I stopped it. Second time I was stuck on the sofa unable to move and scared incase I needed the toilet as I couldn't even nudge myself forward or sit up/back so I phoned urgent care at 23:00 and the lady came out at 02:00 and gave m...

I was referred for acupuncture to the Physio, and I had my appointment today which was impressively faster than usual. The lady physio that dealth with me, 'A' was the same one who had dealt with me in the past and even though I was somewhat skeptical about acupuncture and treatment she did do well. She went through everything with me and made me feel comfortable. She was great today and I underwent the acupuncture straight away which was a surprise as I was expecting to have to have another appointment for it to have been carried out. The acupuncture took the heaviness and pressure away and allowed me to relax for 15 minutes, I have had pain tonight but I am willing to see how the acupuncture goes. It is now 20:50 and I am in an extreme amount of pain, so lets see how I am after next weeks session, this is extremely unpleasant :(

The Pelvic Partnership called back yesterday and my husband spoke to them. They have confirmed that without treatment my condition could last up to 2 years or more. They have said that it is treatable during pregnancy and we have to go private since the PCT have said they don't offer this service currently despite what the NHS first book for pregnant mothers states about SPD. This is not good news. We cannot do that at all. * * * I don't think we have much of a national health service anymore, more and more people are telling me about how our hospitals are leaving babies to die over an estimated due date! By refusing to rescusitate babies they estimate to be under 24 weeks! And what makes it worse they are not even issued with a birth or death certificate, which in my opinion I define as murder and immoral. I don't want to go into detail I am so upset as it is. Just needed to get that off my chest and people are welcome to correct me if I am wrong.

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...

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.