I developed pelvic girdle pain (PGP) which used to be called Pubic Symphasis Dysfunction (SPD) during the fourth month of my second pregnancy. That baby is now 15 months, and I'm still severely disabled. My gait is waddling (like a duck) and I am in agony. It is worst after a night in bed or a period of sitting or lying. But I cannot stand for long, either. Because I can't bear weight for long, I have to use a wheelchair to get out. In the house I use furniture or crutches because it's a small house. Have had to give up work, can't look after the kids, am really miserable. What advice do you have?
Please help. I just found this community today and I'm hoping to connect with anyone who may have gone through similar. Thank you.
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shiner
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What part of the country do you live in ? it's unusual for pelvic girdle pain to continue after the birth for this length of time. I guess you've seen physiotherapists and tried the belts etc ?
I am so sorry to hear about what has happened to you, especially when you should be enjoying your new family. It is a really sad situation for you.
I'm afraid I can't offer advice, but I do understand!
I suffer from all that you have mentioned since a rather brutal vaginal hysterectomy. My pubic symphysis was pulled apart, my sacro iliac joint disjointed, and this happened in 1994.
It took a long time for anyone to take me seriously when I complained of this consistent pain, because I'd just had surgery. But I knew I wasn't right. I was told that I walked like a duck too!
Where I am now........years down the road the opinion is that during surgery my legs were allowed to fall too far apart, and that when my sacro iliac joint set, it trapped the pudendal nerve.
I had a wonderful physio who was able to correct my gait, but the nerve damage was done!
I even had a Prof at Guys Hospital, London offer to fuse my symphysis. But I was advised against it, as it is meant to be flexible.
I have reached the National Hospital for Neurology, and Dr Baranowski who is trying to fix me. But it is a long slow frustrating path.
Have you been referred to a Pain clinic?
They can be very helpful, mine in Poole worked hard to find a diagnosis.
I went on a pain management course too for a month, to learn techniques to cope with pain.
I am not fixed.
I am in despair, and have had some very dark moments in the last 18 years.
So PLEASE make some noise, get a ref to a Pain consultant before the damage "sets"! Also, a good physio can really help.
Don't give up, or feel you are being a nuisance! You need to do this for the life that is ahead of you.
I have sacro-iliac joint problems which started following a gyne procedure 14 years ago. I think this was also due to the position on the operating table. It worsened with time to the point where I couldn't move on many occasions. The joint moves out of position. It was 7 years before it was recognized and it was a physio who identified what was happening. She uses a lot of force to manipulate it back into position and she has shown my daughter and husband how to do this for me. I also have exercises to do but am not very good at remembering to do them.
Suzy, just to let you know we are having a meeting on pelvic pain on 19th January at the Orangery suite in Wimborne. It is for health professionals ( GP's, physios, gynaecologists, and patients ) The pain specialist at Poole and I have organized it and we shall both be speaking at the meeting.
What things are you trying to improve the situation ?
I was due to attend UCLH next Monday to discuss MRI results with bladder specialist. She had a thought that endometriosis may be growing in my urethra. But having waited 9 months, it has been cancelled!
I put so much hope and anticipation into my appointments that I feel devastated when this stuff happens.
I'd definitely like to attend anything local as London is always a long wait for appointments, long stressful day, and long recovery time!
Thank you for letting me know about Wimborne.
I hope that you are recovering from your Latvian trip.
Oh no ! has the appointment been rescheduled and who are you seeing ?
This is a very specialized field and should be dealt with by an endometriosis specialist in the field. Have you ever had a diagnosis of endometriosis ?
I know an expert in endometriosis and the bladder in Paris ! there is no wait and they don't cancel appointments !
They will rearrange my appointment next week, but it could be weeks.
I am doubtful that it is endometriosis, but you clutch at straws, and because I had spots of it years ago, the specialist Ms Susie Elneil, thought it might be a possibility.
I am desperate for a diagnosis!
A definitive name for my pain.
That's why I thought pudendal entrapment ticked ALL the boxes, and I really don't understand why Dr Baranowski doesn't think it is anymore.
I feel that I am back to square one.
I do have an appointment at the Pain management centre, at National Hospital for Neurology to talk about psychological issues soon. So I might use that as a way back to see Baranowski.
He hasn't discharged me, I can contact him through his specialist nurse. But she just told me to read "Headache in the Pelvis", and Tim Parks, "Learn to sit still".
I use the Samaritans as a coping mechanism for when despair turns to thoughts of harm.
I wish I could see one of the many specialists that I read about on this forum, but would it be worth going to Nantes, or Turkey if I don't have a definitive diagnosis?
I was like you for years and didn't know where to turn. There was less support then than there is now and I exchanged messages with other patients. This and an empathetic French doctor gave me strength and hope when I had none.
The specialist you mention is a urogynaecologist and not an endometriosis specialist. Even tiny spots of endometriosis can cause huge problems depending on the location and whether nerves are involved, so this shouldn't be dismissed as a possibility. It may need new and sophisticated techniques to identify it though. h
How do you get to London, does someone go with you ? You don't have to have a definitive diagnosis to consultant other people. In fact 40% of those with chronic pelvic pain don't have a diagnosis but the cause of their pain can generally be deduced from the medical history and a clinical exam.
Who are you seeing about the psychological issues ? Do you sleep OK at night ?
I hope you feel a bit less isolated and unsupported than before. I live in Poole and you'd like to chat or meet up, just let me know. (I'm at a pain meeting in London on Monday but after that will be around the rest of the week.
Do you want to e-mail me about this today ? we could arrange something for tomorrow ( Friday ) I'm in London again next week and then Brussels too for the launch of Pain Alliance Europe
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