Category: ‘My Story’ – stories from women who have experienced PGP

My story: PGP is treatable with manual therapy

By Kim Stewart

I wanted to share my story to give people hope. Whether you are pregnant and experiencing PGP or you have had it for months or even years – there IS light at the end of the tunnel – PGP IS treatable with manual therapy! I hope that by sharing my experience, it will give women confidence to trust their own body, consult the Pelvic Partnership and get the right treatment long before I found it.

My PGP journey started in March 2013 when I was 12 weeks pregnant with our first baby. My husband and I were out walking our Labrador when suddenly, my right leg gave way and I almost hit the floor. This happened every few steps and I began to worry about how I was going to get home. A couple of weeks on and the pain got worse and to the point where I couldn’t sit/stand/cough/sneeze/laugh without getting extreme shooting pains through my pelvis. I panicked: I thought I was losing the baby. The GP saw me within a couple of hours and quickly diagnosed PGP. She reassured me that the baby was fine and, although it was painful, I wasn’t to worry. She referred me to a group physio session which I attended a couple of weeks later.

Acupuncture not manual therapy

I knew I needed a 1:1 session so I went along to an ‘assessment’ at 19 weeks and they identified a slight backward pelvic-tilt on my right side. That night, I was in that much pain, my husband called an ambulance as I was unable to move from the chest down. The A&E doctor put it down to PGP and told me to continue to take paracetamol and codeine for pain relief. After that, the physio decided not to do any manual therapy because of what had happened post-assessment and instead gave me weekly acupuncture. It didn’t do me any harm but it didn’t do me any good either.

Difficulties at 20 weeks

At 20 weeks, I totally broke down – my husband called my mum and sister. I was in so much pain, I could barely walk and spent any time I could in the swimming pool or bath – it was the only relief I got. I couldn’t see how I was going to get through the next 20 weeks with a baby that was growing and putting more strain on my pelvis. My mum was doing my shopping, we’d employed a cleaner and I was feeling more and more isolated. Every time I tried to explain it to people, you could see they didn’t believe the intensity of the pain and thought I was exaggerating it. Work was becoming increasingly difficult so adjustments were made so I wasn’t in a client-facing role, driving to meetings, etc. I got to 28 weeks before going off on maternity leave.

Unsympathetic midwife

At each of my antenatal checks, I was met by an unsympathetic midwife. I remember her saying at 32 weeks, “Your baby is deeply engaged and is sitting low in your pelvis. And, you have PGP, so you are going to be in pain.” I felt like such a wimp. The remainder of the pregnancy was far from enjoyable – I was in so much pain, if I left the house, I’d end up sitting on the floor because I couldn’t carry on walking. I remember a particular trip out when I ended up in M&S and was crying on the floor. People were staring at me but I couldn’t have cared less!

Labour at 38 weeks

My care was 50:50 consultant/midwife led and my consultant kept reiterating that a natural delivery was best and the longer I could continue with the pregnancy, the better. At 38 weeks, my consultant gave me a sweep. I had a show the next day and contractions started.

My labour was very traumatic. I endured intense pain for three days before being admitted into hospital on the Sunday evening, at which point I was told I was only 1cm dilated. I couldn’t believe it as the consultant had told me the previous Thursday I was 1-2cm dilated. If the pain was this bad now, how bad was it going to get? I was given paracetamol which was less pain relief than the co-codamol I’d been taking during the pregnancy for the PGP. I was put in a bath and told by a midwife, “I don’t want to hear from you until your contractions are every minute and last for a minute.” Those two hours were unbearable.

Delays with the epidural

At midnight, I told my husband that I couldn’t wait any longer and the midwife confirmed I was 4cm dilated. I then waited an hour for someone to take me to the delivery suite. It was only then that I was informed that the baby was back to back and because the baby wasn’t moving, they needed to monitor it. This meant that the only option for pain relief was an epidural as anything else could harm the baby. I waited over five hours for an epidural, I felt like I was being tortured. The anaesthetists kept coming and promising I was next but they were so short staffed, I kept being put behind the four emergency c-sections they needed to perform. During this time, I became ketotic so I was given a drip to provide energy, IV antibiotics were administered as we’d become exposed to infection as the doctors kept having to do blood tests on the baby’s head and I was tachycardic so I was having to have regular ECGs during labour, as well as being strapped up to a heart rate monitor. In addition, I was on a drip to speed up the contractions.

Prepared for a C-section that never happened

During this time, my legs were in and out of stirrups (a practice which is not appropriate for a woman with PGP because of the strain it puts on the pelvis). At 1pm in the afternoon, the doctors decided to prepare me for an emergency Caesarean section. We got to the theatre and the anaesthetist administered a full spinal block. The doctor explained that as, “I’d gone through so much” she was going to perform a “trial forceps” manoeuvre. Shocked herself, she said a miracle had happened and, from moving from the delivery room to theatre, the baby had turned into the correct position. She said that she’d give me twenty minutes to push and, if no success, she would continue with a c-section. The anaesthetist held my hand and, said, “If it gets too much, I’ll knock you out completely, you just give me ‘the look.’ ”

Maisie is delivered

At this point, I just thought, “I have to get this baby out,” so I just grabbed my legs and pushed as hard as I could. Maisie was out in 1.5 pushes!!

We were all so excited and it was such a relief to have my baby in my arms. I was in theatre for a number of hours as I had a fully retained placenta which the doctor was having difficulty removing manually. During this time, my legs were continually in stirrups. I lost a lot of blood and was borderline for a blood transfusion but the doctor said they’d test my blood the following morning, which never happened. I was then anaemic and on the highest dose of iron tablets for several months and would sometimes faint, not ideal with a newborn! I also got very poorly in the week after Maisie’s birth and ended up back in hospital for several nights on IV antibiotics after an infection in my uterus, endometritis, which was probably due to the manual removal of the placenta being very invasive.

Still searching for relief

I’ve explained the birth in detail because in the weeks that followed, I was in a lot of pain with my back/pelvis. I’d been in stirrups for several hours and had a forceps delivery, both of which are not recommended for women with PGP. At my six-week check, I explained the pain to my doctor and, although sympathetic, she just brushed if off: “I’ve read your notes, you had a very traumatic labour, your back will be sore, it will take up to 12 months to settle.” I kept repeating this to myself every day when I was in pain. I tried to return to exercise, I could do it but I was in a lot of pain, especially afterwards. Sex was impossible. I thought it was a result of the forceps and the pain would settle in time but it didn’t. I saw a physio through the NHS and I thought things were improving but I think it was more to do with my positive mental attitude, I was so desperate to be pain free! My periods were also very heavy and the pain was like being in labour again at times. I also had multiple UTIs and was on a continuous low-dose antibiotic.

Things really came to a head though when I went back to work when Maisie was 11 months old. Within days of sitting at my desk, the pain got to another level. I was getting shooting pains in my pelvis, I could barely walk. I begged the GP to help and he ordered an MRI scan. My discs were nice and healthy and there was no nerve damage so he suggested physio. In October last year, I ended up in hospital for three days and after various tests/X-rays, the surgeon suggested the PGP had never gone away. He said it was extremely rare, he’d only seen it with a handful of patients in his career. He advised to carry on with the crutches and prescribed oxycodone, naproxen, codeine and paracetamol for pain relief. He suggested I sought physio with a women’s heath physio but that was rejected as Maisie was more than 12 months old! I saw a specialist physio who refused to work on me in fear of doing more damage and straight away got me in touch with a spinal consultant.

The start of positive intervention

My spinal consultant was brilliant. She quickly identified that I was in the chronic stage of PGP and had SI joint dysfunction. She ordered scans of my symphysis pubis as she wanted to make sure that there was not a majorly abnormal gap that required immediate surgery. She also booked me in for facet joint injections as there was some wear and tear showing on my scans and wanted to see if those made any differences to the pain I was experiencing. We spoke about the birth and I explained the flashbacks and nightmares I had been having and that I couldn’t talk about it without crying, even 15 months on. She said it sounded like PTSD (post-traumatic stress disorder) and referred me to a psychologist for CBT (cognitive behavioural therapy). She also gave me diazepam for when the pain was unbearable – that was much more effective than any other medication I was on as it reduces muscle spasm, but you can’t take it long-term.

Two days after seeing her, I literally couldn’t stand up again and was in so much pain, my father called an ambulance. Rather than be admitted into hospital over Christmas, the doctor gave me a stronger strength oxycodone prescription. This was a common theme. Every time someone (doctor/physio, etc) touched my SI joint/pelvis, everything would flare up, big time!

Over the next few months, I was feeling worse and worse. The effect of the medication meant that I was constantly tired and could barely keep my eyes open. I was slurring my words, my eyes were bloodshot and I was convinced I was going to end up in a wheelchair. I felt more and more isolated and I felt so guilty that I couldn’t be the mum I wanted to be, getting down on the floor and playing with Maisie, going for walks in the park, normal things! I felt guilty as I was continuously asking my mum and sister for help with the shopping, bathing Maisie, etc. It was impacting my whole life, it was embarrassing at work when I ‘got stuck’ and couldn’t move. I felt like everyone thought I was a massive wimp and it was all in my head. My hours were reduced at work and my role was changed so that I could work from home. I am so lucky to have such a supportive husband as I can see why relationships could break down in this situation. We just kept talking… And, he gave me lots of cuddles which helped!

The crunch-point came when I broke down in tears with the spinal physio I was seeing through the NHS. He tried to get me to do a pelvic tilt and the pain was severe and my jaw was shaking. I was so frustrated, I needed reassurance that he could help me but he instead suggested to my consultant that I went onto antidepressants. It gave me the push to seek help outside the NHS. I knew my own body, I’d been in this pain since I was 12 weeks pregnant and knew that something wasn’t right and antidepressants were not going to ‘cure’ me, they would just mask it. (I was a little naive at the time but now understand that they can be very effective in dealing with chronic pain.)

Googling the Pelvic Partnership

That’s when I found the Pelvic Partnership via Google and I made the call to Sarah. It is literally the best phone call I’ve ever made and has turned my life around again. Sarah was such a breath of fresh air. She listened to my story and said I was a textbook case of someone with PGP and getting nowhere. She was very impressive and knowledgeable and gave me the hope I’d given up on – I could get better! Sarah then recommended Lucy Walmsley, who is just brilliant. Even though she is based more than three hours away by car from my home, I would have travelled anywhere in the world if it meant I could get the correct treatment.

I first met Lucy in February this year and knew straight away that I was working with someone who knew exactly what I was experiencing and, most importantly, ‘why’ I was in the pain I was in. She reassured me that I was not ‘going mad’ and explained things so clearly, I now understand the cause of PGP. In my case, a stuck SI joint on the right side. She explained the different muscles that are affected and the reason for the pain and why I couldn’t stand/sit for more than 20 minutes without my legs giving way. Lucy also suggested that I may be experiencing pelvic floor dysfunction so my spinal consultant referred me to a women’s health physio who confirmed this. Due to the forceps delivery, my pelvic floor had gone into spasm and, therefore, made sex unbearable as well as adding to the pain from the SI joint dysfunction because the pelvic floor muscles were not working properly so that the larger muscles were firing and fatiguing after about 20 minutes of any activity. She also explained the effect of PTSD on pain so my problems were quite complex, a triple whammy if you like! All three issues needed to be dealt with in harmony as if we ‘fixed’ one, e.g. the SI joint, so the pelvic floor dysfunction could still cause pain. In May, I had some SI joint injections, which enabled Lucy to finally get to the troublesome SI joint and I felt instant pain relief. I can’t describe how amazing that felt after two years of ongoing PGP!

So, here we are four months on and I am well on the road to recovery. I no longer take any pain relief, apart from the odd diazepam tablet if is particularly bad. Recovery will take several months as the muscles need to be strengthened to stabilise the pelvis but I am not in any pain at all now, as long as I stick to no more than 20 minutes of activity. The length of time will of course increase as the muscles get stronger. I have had a couple of setbacks where my SI joint has come out of alignment but with Lucy’s support, I know that this is a normal part of the recovery. All I wished for was that I would be able to dance at my 30th birthday party in July and that is going to come true!

I am ever thankful to the Pelvic Partnership and to have found Lucy because without them, I would probably be in a very bad place. Which brings me back to the beginning of my story – PGP CAN be managed effectively with manual therapy. I’ve written this article to help prevent anyone else going through what I have. If you can get ‘the right’ treatment for PGP at the onset of symptoms during your pregnancy, it can be managed and the recovery will be much quicker post-natally. But also for other women who are yet to have had effective treatments, it’s never too late. Please do get in touch with the Pelvic Partnership as they may be able to suggest a therapist close to you – I promise you, it will be a life-changing call!

Thank you, Kim, for sharing your very moving story and for confirming the success of finding the right support and excellent manual therapy through the information supplied by the Pelvic Partnership! We are so glad that Sarah helped you on the road to recovery and that treatment from experienced physio, Lucy Walmsley, has had such a positive outcome on your life. We are also very pleased that you were able to dance again during your recent birthday celebrations, fantastic!

Kim went to see experienced Physiotherapist, Lucy Walmsley MSc MCSP, at Stow Physiotherapy Services. Lucy is listed on our ‘Recommended practitioners’ list’. For more information visit www.stowphysio.co.uk.

My story: complaining about poor treatment for PGP

By Julie Hinckley

Like many women, I wasted too much time at the hands of poor physiotherapists and osteopaths who knew little about how to treat PGP effectively. I felt strongly (and still do) that these practitioners and their governing bodies needed to know how their involvement added to my lack of progress with PGP, in the hope that other women would be spared from the same fate. Also, it was important to me to release my distress and anger at having wasted a year and a half of my time, which greatly delayed my recovery. In the case of one practitioner, in particular, it was important to me to raise my concerns about several aspects of their practice so these were clearly identified, outlined and recorded.

Overall, it was very important to me to do everything in my power to prevent other women having to go through the same lack of care and absence of suitable treatment that I had experienced. It is only recently, thanks to the Pelvic Partnership helping me to find an excellent physiotherapist, that I am beginning to lead a normal life again and to recover after having PGP for so long.

Making a start

Firstly, I wrote complaint letters to each of the physiotherapists I had paid to see privately. When I received no replies to my letters, I then emailed my complaints to them, and this brought a response from one or two. Next, I contacted the HCPC (Health and Care Professions Council) to complain about these physiotherapists because this organisation regulates health, psychological and social work professionals and investigates ‘fitness to practise’ type complaints. I also contacted the General Osteopathic Council and was sent a form to complete in order to make a complaint about each osteopath who’d let me down.

In addition, I emailed the Director of Women’s Services, the Head of Physiotherapy and the Chief Executive for my local hospital to raise my concerns and to complain. I also got in touch with PALS (Patient Advice and Liaison Service) at my local hospital, detailing my complaints about my treatment for PGP. After waiting for two months and still not receiving a reply, I started making phone calls to them and this approach finally started to get things moving.

Getting some redress

A month later I received a written reply, which I felt was not enough, as I believed my complaint had still not been resolved. So I emailed again telling them this and explaining my reasons. All in all, I waited four months to receive a decent apology and a detailed response which could demonstrate to me that my complaints had not only been understood but thoroughly investigated.

Looking back, it was shocking to see how many times I had to chase things up myself to find out why I had not received replies to my complaints. However, it was well worth my time and effort in pursuing these complaints to the NHS, as I know that steps are being taken to address the treatment of PGP for other women in the future. I also know that the NHS practitioners I named have been investigated and are aware that they did not deal with my PGP effectively. The reply I had indicates that they have done a comprehensive review of their services and made significant changes, as well as addressing and monitoring the individuals involved. This feels like progress but I am still in the process of following up my complaints via the HCPC.

Why complaining is vital

I really want to urge women to complain about the poor treatment they are receiving or have received for PGP because as far as I can see, this is the only way we can help to force through changes for the better. It is also the only way to let the practitioners know that their treatment of PGP was ineffectual and demonstrate dissatisfaction with their service. I feel that if no one speaks up, these practitioners may think they are doing a good job and successfully treating women for PGP, when in fact the reverse is true!

In my case, a great deal of time was wasted and my progress towards a good recovery was considerably delayed. So I would like to spread the word to other women that if you are still in pain and not noticing any improvement after each treatment session, then do not waste any more time on that practitioner. I wish I had known this at the start of my PGP, to avoid the unnecessary pain and problems. Back then, I had not found the Pelvic Partnership and did not know what sort of treatment I ought to be receiving or that I didn’t have to put up with chronic pain for month after month. I really believed what my NHS physios told me for almost a year: “Keep doing core strength exercises and you will get better,” and, “It is down to laxity of ligaments and you will get better with time.”

I wish I had received ‘hands on’ manual treatment at each session, from a knowledgeable practitioner who was experienced in treating PGP successfully. Ideally, you shouldn’t have to look outside the NHS but I felt I had to go privately to get the treatment I needed. All I would say about going private is that having your life and your mobility back is worth it. I hope there are some decent NHS physios out there, as it is not fair that women should have to pay to get better. Indeed, many woman may not be able to afford the luxury of going for private treatment.

‘Thank you’ to the Pelvic Partnership for listening to me, supporting me and providing the information that helped me through a very difficult time.

Thank you, Julie, for your article showing the importance of making a complaint when manual therapy is not offered or the practitioner is not sufficiently experienced or proficient to really bring an improvement to mobility, pain or freedom of movement after each treatment session. It is very difficult to have the confidence or energy to complain when you are feeling vulnerable, in pain and when you have limited mobility. If you can, get in touch with the Pelvic Partnership and ask for additional support from family and friends (who can also accompany you to increase your confidence).

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The Pelvic Partnership consists of volunteers who have had pelvic girdle pain (PGP) and wish to support other women. We aim to pass on information based on both research and the experience of other women with PGP. We are not medical professionals and cannot offer medical advice and the information we provide should not take the place of advice and guidance from your own health-care providers. Material on this site is provided for information and support purposes only.

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