My story: my quest to find the right treatment
First experience of PGP
I first noticed symptoms when I was pregnant with my first child. I had lower back pain and experienced shooting pains down my right leg when bending and found it difficult to stand up again once in a bent position. I mentioned it to my midwife, who dismissed it as ‘the aches and pains of pregnancy’. I hadn’t been pregnant before so I had no previous experience to draw upon and so I believed her and didn’t mention it again. Interestingly, I read a lot of pregnancy magazines and did read about Pelvic Girdle Pain (PGP) in one article, but didn’t even begin to think that I might have this – I just remember feeling sorry for the poor woman in the article. I had planned to start my maternity leave at 34 weeks, but due to my long drive to work each day (45 minutes), I ended up being off work for the last 2 weeks, because I was just unable to drive for that long, and couldn’t manage constantly going up and down the stairs at work. Again, I just thought this was normal for a heavily pregnant woman, and no-one told me otherwise.
Our daughter was born in December 2009. I managed to have a home birth, but my labour was long and I was asked to change position after almost every contraction. I felt all of my contraction pains in my thighs (which I now know to be a sign of pelvic problems) and I was unable to open my legs very far to deliver my baby – so they were held wide open for me – all causing further damage to my already sore pelvis. However, she was a healthy baby and I was glad it was all over. It took me a very long time to recover from her birth. I did not leave the house for almost two weeks and I could hardly walk due to what I now know to be PGP. My husband did everything for us in the first few months, as I could not lift my baby from her crib, into our bed to feed her at night etc. I improved slowly and was fully recovered from what I thought was sciatica (due to the shooting pains) when she was eight months old.
Trying for another baby
We decided to try for another baby soon, as we did not want a large gap between children, so I found myself pregnant again when my daughter was 10 months old. I was pregnant for just four weeks when the pain returned. This time I knew it wasn’t normal; I mentioned it to my midwife at my ‘booking in’ appointment and asked to be referred for physiotherapy. I was seen within a week by two physiotherapists – one who had been assigned to me and another –a women’s health physiotherapist – who had seen my referral letter and wanted to observe the assessment in case I might have PGP. This was great, as she knew what she was looking for and in the end, took over the assessment from her colleague, finally diagnosing me with PGP. It’s funny to look back now, but she asked me at the time if I had any pain in my pelvis, to which I replied, definitely not! It’s hard to know where exactly your pelvis is in your body and how it would feel if it hurt – I had no idea. She told me that the right side of my pelvis sat higher than the left side and my right sacroiliac joint was sticking and that’s what was causing the problem.
Coming to terms with PGP
She gave me a Pelvic Partnership booklet about PGP and asked me to come back the following week for treatment. I was utterly speechless. I could not believe that I had PGP, after reading that article, a year ago. I went home and read the booklet she had given me, and it made me cry. Everything that I had felt and had experienced was written down in hard print – it was all real and I hadn’t been making it up. It was a revelation. It made me feel so happy to have a ‘real’ and treatable problem, but also really scared about the future, as the booklet highlighted the level to which PGP can progress if untreated. I yearned to be THAT woman, who is still doing everything she usually does each day while being pregnant and barely noticing her big bump. I wanted to show off my bump to the world, by walking around in figure-hugging clothes and feeling really amazing. However, it was not to be, I had five further sessions with the women’s health physiotherapist, being seen each fortnight, where she attempted to manipulate my joint on one occasion and gave me exercises to practice at home, but by the end of these sessions, I was using crutches, and discharged, being told there was nothing more she could do, it was up to me to do the exercises she gave me to prevent any further deterioration. She advised me to wear a maternity belt, restrict my activity to a manageable level and to do the exercises to strengthen the weak muscles on my right side. I was 21 weeks pregnant. I had to stop work at 20 weeks pregnant, as I couldn’t manage the drive, the long hours or the stairs.
Looking for assistance
I asked my doctor for more pain relief and was given stronger pain medication, which lowered my pain to a bearable level, but I was never pain-free. I also asked the doctor to refer me to Occupational Therapy (OT), having read the Pelvic Partnership’s booklet, and they arranged for a shower support, bed rail, and perching stool, to make life at home a bit easier. They even came and put in stair rails for me to haul myself upstairs. I was loaned a wheelchair from the Red Cross and applied for Disability Living Allowance and a Blue Badge. By the time I was 26 weeks pregnant I could only walk using crutches and needed the wheelchair for distances further than about 10 meters. I was determined not to sit at home all day like I had in my last pregnancy, though. Now I had the equipment, I could get out and about with help from friends and family. So I still went shopping- hiring mobility scooters – and went on holiday. Caring for my daughter was a real challenge, as I could not bend down to pick her or her toys up, could not carry her, bathe her etc. She learned to be very independent – climbing the stairs, getting into her highchair on her own etc. Our friends and family helped me a great deal, and we will forever be indebted to them, giving up every moment of their free time to help.
Seeing a private, recommended physiotherapist
When I was 34 weeks pregnant, and after attending the Pelvic Partnership conference in May 2011 in my wheelchair, I decided enough was enough, and paid to see a private women’s health physiotherapist. However, at my assessment, my condition had deteriorated so much, that she was unable to even assess me properly, because I couldn’t stand unaided, couldn’t lean forward or backward or lift either leg, even an inch off the floor. It was so disappointing. She advised me to just get through the next few months, doing some basic exercises and come back after the birth to see her.
Having my son at home
Our son was finally born in July 2011 (11 days late!) at home in the birth pool. This time my labour was quick and easy – just 3 ½ hours in total. I was so used to such chronic pain from the PGP that a little more when in labour, went almost un-noticed! My birth plan was very clear about what I could and couldn’t do, and the midwives were great. My husband was a brilliant advocate for me too and was strict about my abilities, positions for labour, etc. It was not easy to secure a planned home birth. I had to change consultants, to find someone who understood PGP. By the end of my pregnancy, that consultant was the only person we had come across who knew what my limitations and also my abilities were with PGP. All other midwives, doctors, consultants etc. had no idea, and offered out-of-date or incorrect advice. In the end, it was so bad that I refused to talk to anyone but my consultant about my care. One well-meaning midwife, when I was refusing to be induced after going overdue, said to me. “Well if you are in as much pain as you say you are, you’ll accept an induction – so it can’t be that bad.”?! However, I knew that induction would most likely lead to a birth where I would need assistance such as forceps/ventouse and I would not be able to stay at home, where I had support and mobility aids etc.
When my son was seven weeks old, I went back to see the private physiotherapist. She confirmed what the NHS physio had said right at the start of my pregnancy, that my right sacroiliac joint was sticking, and causing everything else to be misaligned. She gave me exercises to do at home to strengthen my core muscles. I saw her fortnightly for a few months, making good progress (most of which was spontaneous), and when my baby boy was three months old, I returned the wheelchair and OT equipment – a big milestone. I also attended a postnatal yoga course, which really helped to strengthen my muscles.
I improved only to a certain level, however, and so I decided to seek another opinion. I saw a chiropractor, who told me my pelvic joints were strained and so he would not touch them. He instead worked on my neck and jaw, which he said was stiff and causing my pelvis to weaken. I saw him twice weekly for a month and then weekly for a further two months. By the end of this, however, I could see no change at all in my condition (save only in my bank balance)! So I sought another opinion…
Finding immediate results with a new, private physiotherapist
I saw another private physio, one of the Pelvic Partnerships recommended practitioners. The clinic where she works was 85 miles away from my home, but no one else had been able to help me, and this lady was very highly recommended, so I made the journey. It was well worth it because I noticed a massive difference after only one session. The way she manipulated my stuck joint was completely different from all the other physios. She put the strength of her whole body into moving the joint, and I could see and feel the difference in that same session! She also taught me how to use the correct muscles in my core, as I was compensating by using incorrect muscles. My pelvis was now aligned, which it had not been for a very long time!
However, I still was not 100% better! The Pelvic Partnership again helped me out but recommending that I see a physio who deals with pelvic floor problems. I saw another lady recommended by them, who found that my pelvic floor muscles were too tight – the opposite to what you expect after having children -. but also very common with PGP. This is because the muscles in your pelvic floor overcompensate and tighten to try and stabilise your pelvis if it is hypermobile like mine. After some pelvic floor physio, my PGP was gone! I still need sessions with the physios every now and then to keep my pelvis behaving, as I had PGP for such a long time before being properly treated. If you suspect PGP – get it treated immediately! As your recovery will then be much quicker and more complete.
The biggest lesson I have learned from having PGP is to keep seeking another opinion and to never presume that simply because someone is specialised in their field or looks and acts like a professional, that they are giving you the best service. If you are not truly improving, I would encourage you to seek another opinion!
Thank you very much for sharing your experience of PGP with us, Charlene. It is really encouraging that you have made such progress by questioning the support and expertise of those you have consulted and judging the effectiveness of the treatment by whether it really made a difference to your mobility and level of pain.