My story: the shock of PGP
Delight and distress
In June 2011, I was delighted to find out I was pregnant with my first child. However, by the October, when I was four months pregnant, I was experiencing intense pains in my pelvis and groin that were beginning to impact upon my everyday life. I mentioned it to my midwife, who informed me that ‘all pregnant women get pelvic pains’ and not to worry about it. I started going to a pregnancy yoga class and the class teacher mentioned SPD (now known as Pelvic Girdle Pain or PGP), but when I enquired about what it was and suggested that I might have it she almost ridiculed me and told me ‘you’d know about it if you had it and you wouldn’t be here’. These responses led to my feeling that I was over-reacting and that perhaps I was just not very good at being pregnant! I wish now that I’d been more assertive and asked to have another medical opinion; however, I was continually minimising the pain that I was in for fear of being seen as weak or a nuisance. Sadly as the baby and my bump grew, so did the pain. I can clearly remember walking into town in the November to meet my mum and aunt (about half a mile) and once I got there I was almost paralysed with the pain and I genuinely thought I wouldn’t be able to get home.
Help offered but no manual therapy
By December (six months pregnant) I could hardly stand up without being in agony, walking was very difficult and so was driving. I finally went to see my GP, who incidentally was a lot more supportive that my midwife, and he referred me to the Women’s Health Clinic in the Physiotherapy department at the hospital. At the clinic they gave me crutches to aid my walking and gave me some tips to help the situation, i.e. keeping my knees together, sitting down to get dressed, rolling out of bed, which would have been useful but I’d already adapted to doing them due to the pain I was in. I tried to continue working but it became too difficult and after Christmas my GP suggested that he provide me with a sick note. This presented its own problems as I was worried about being stuck at home on my own for nearly three months with nothing to do but focus on the pain.
More support but still tears of frustration
My employers were supportive during this period and arranged for me to have restricted duties that I could carry out at home, which at least gave my days some sense of purpose. I did feel very isolated, though, as the majority of my friends and family didn’t really understand the pain that I was in and I still got the sense that people thought I was over-reacting to ‘normal’ pregnancy problems. On one occasion my brother and sister-in-law decided to take me out for a meal to cheer me up but when we arrived the restaurant was up two flights of stairs. I hauled myself up in agony and was in tears by the top. My brother felt awful but he genuinely hadn’t realised how bad things were. Thankfully my husband was brilliant and tried to do what he could to help, which essentially meant doing everything around the house and for me when he was there. During the last few weeks of the pregnancy I was practically house-bound but my friends called in regularly and I found ways to manage. Owing to the fact that I had lost my balance and fallen a few times, my husband insisted that I start carrying a small bag around with me across my chest so that I could access my phone if I fell, and this was really helpful as I began to carry other things in it too so that I had my hands free for my crutches or to hang on to the walls! I did find it difficult not to become upset when I felt as if I was missing out though, for example, I couldn’t decorate the baby’s nursery or help build the furniture which I obviously really wanted to do.
No instant cure following the birth
Throughout the pregnancy, I clung on to the fact that once the baby arrived I would be ‘cured’. Numerous midwives and doctors all assured me of this and I had no reason to believe otherwise. Following a difficult delivery in which the baby got stuck and forceps had to be used (hours in stirrups was not ideal) my son Jacob was born. I spent a couple of days in hospital being unable to walk due to the ‘spinal’ I’d had and the stitches but I cheerfully left my crutches behind when I went home. After a couple of weeks recovering from the delivery I fully expected to be back to normal so stubbornly walked miles with Jacob in the pram. However, I would often return home in serious pain. I mentioned this to my health visitor who informed me that my pelvis wouldn’t recover until I stopped breastfeeding so, although it wasn’t what I’d been told originally at least I had an end date in sight! I stopped breastfeeding after five months and waited for the pain to go but again it didn’t! At this point I was so focused on looking after Jacob that I tried to deal with the pain through using painkillers and wishing it away! I should have been more proactive at seeking further help but I was listening to the advice that it takes your body a year to recover from childbirth – of course this doesn’t mean that you should be in constant pain! Therefore it wasn’t until Jacob was a year old that I spoke to my GP again, who agreed to refer me for physiotherapy.
Little awareness of PGP from seeing the physio
The therapist I saw knew very little about postnatal issues and decided to work on my back and hips, despite my repeatedly telling him about where the pain was (over my symphysis pubis and in my groin). He was yet another medical professional who told me that the pains I was experiencing were ‘normal’ for mums. I began to question whether I was a hypochondriac as none of my friends seemed to have trouble walking, sitting down, standing up, lifting their baby etc! After a few sessions with this therapist I asked to be referred back to the women’s health department for what I hoped would be a more specialised assessment.
Dashed hopes and unhelpful thoughts on having more babies
I attended the appointment in January 2014 deciding that I was going to be very assertive and describe the pain and the impact on my life in detail so that they would understand how much I needed help. When I did this the response of the physiotherapist shocked me. She informed me that I could ask my GP to refer me for X-rays or other assessments but that in her opinion I shouldn’t have any more children and that anyone else would probably tell me that same thing. I left the appointment in tears feeling completely distraught that my opportunity to ‘complete’ my family had been taken away from me. Coincidentally that weekend we went to visit some old friends, one of whom is a surgeon. He was horrified at what had been said to me and advised that he knew a colleague who specialised in the pelvic area. He suggested that I speak to my GP and ask him to refer me to see him, despite him working for a different Primary Care Trust. When I did this my GP was again supportive but informed me that in order to fund any appointments or treatment from outside our PCT I would have to ‘jump through hoops’ locally. Initially I agreed to do this – I had X-rays, an MRI scan and finally a procedure to inject a solution into my hip to identify any problems. This was really painful and ultimately completely unnecessary and I think was the point that I had reached my limit. All that had been discovered was that I had a ‘wider than average’ gap in my symphysis pubis but it wasn’t known whether this had been caused by my pregnancy or not.
Hope in the form of the Pelvic Partnership
I was feeling increasingly negative about my chances of recovery. I had been in constant pain for over two years and it was affecting my ability to enjoy motherhood and function in general life. As well as this, my husband and I wanted another child but were fearful of the potential consequences. During one of my internet searches on the subject I came across the Pelvic Partnership and decided to give them a call. Speaking to them gave me hope for my future and also made me realise that the medical professionals I’d seen so far did not understand PGP at all. The charity advised me on the types of things people should do when assessing me (strip me to my underwear and check my movements) and what sort of X-rays are useful (‘stork’ X-rays where you stand on one leg). Almost immediately I felt more positive and decided to be more proactive in my approach.
Firstly I began seeing an osteopath who had done training on postnatal issues. When I went to see her I felt comfortable that she knew what she was doing as she assessed me in the way the Pelvic Partnership suggested that she should. She stated that my pelvis had ’tilted’ and therefore my muscles had adapted to this and affected other areas of my body. I began having regular treatment which seemed to provide some relief. We also decided to go and see the pelvic specialist my friend had mentioned privately. We travelled over 150 miles to see him at a Nuffield Hospital but I instantly felt that we’d made the right decision when we met him. He was the only medical professional that I’d met on this journey who seemed to fully understand what I was talking about, and sympathise with my situation. He immediately sent me for X-rays where they had me standing on one leg. They quickly deduced that there was some ‘wear and tear’ on my pelvic bones but that there was no structural reason why I couldn’t carry another child. He acknowledged my fears but assured me that permanent damage was unlikely and that there were medical procedures that could be done to help if the pain continued, such as steroid injections, however noted that many people didn’t need or want this option. However, he also suggested that I see a gynaecologist just to make sure that there was no internal damage caused by Jacob’s birth that hadn’t been picked up. I therefore had an ultrasound and a meeting with the gynaecologist which didn’t detect any major issues.
The joyful prospect of adding to the family
Finally, nine months after that awful appointment with the physiotherapist, we felt like we’d determined that there was no reason for me not to get pregnant again and we just had to pluck up the courage to go for it! I was still terrified of the prospect of putting myself through that amount of pain again, but my main concerns were how I would look after Jacob, who was now nearly three and full of energy, and if I would recover afterwards. But we decided that our desire for another child was strong enough to deal with these things and by November 2014 I was pregnant!
Coping by planning for the worst and trying to stay positive
The way we dealt with the pregnancy and the inevitable PGP was to plan for the worst! Almost from the moment I knew I was pregnant I reduced the amount that I was walking and tried to avoid lifting etc – not easy when you’re potty training your eldest! We also had friends and family on stand-by to help out and had reviewed our finances to ensure that we could afford extra childcare for Jacob if necessary. In addition, I continued seeing my osteopath throughout the pregnancy, which seemed to really help. I was signed off sick from work when I was four months pregnant, at the same time that I had to begin using crutches again. Aside from managing the pain, which I’d prepared myself for, the biggest challenge was staying positive. There were days that were such a struggle from beginning to end, even simple things like getting myself dressed, having a shower and walking downstairs were unbelievably painful and the loss of independence was awful. Not being able to drive or walk further than the end of the road left me reliant on others for everything and I felt particularly guilty about the impact that it was having on Jacob. However, as he was three he was able to understand a little bit and tried to help me where he could, by picking things up for me for example. If he was in a stubborn mood, though, it was more difficult. Towards the end of the pregnancy I couldn’t look after Jacob on my own as it wasn’t safe for either of us to be alone together but my husband used his annual leave to look after both of us and family and friends helped too. It was very hard to have to miss out on days out with him and doing activities but people tried to include me where they could, for example, driving me to a park so I could sit and watch him play for a bit. I have to admit that the last few weeks of the pregnancy were extremely tough – I was barely sleeping, couldn’t take more than a few steps without ‘freezing up’ and was beginning to panic about giving birth again. Due to the pain I was in, the consultant agreed that I could be induced if I went a week over my due date.
A better recovery after baby Ethan’s arrival
In July 2015, I was induced and baby Ethan arrived quite quickly without any fuss! My recovery from the birth was much quicker and again I left the crutches in hospital. However, this time I was much more sensible in the following weeks, particularly in terms of the walking I did. Ethan is now six months old and an absolute joy. I still have some pelvic pain but it’s not constant or as intense as before and I recognise that my body is still recovering from pregnancy and childbirth and may take longer than most. I am also kinder to my body and instead of pushing myself will try to rest where I can and let other people help instead of being stubborn. There are still days when I feel pessimistic about my long-term recovery and get angry about my situation, but ultimately I cannot imagine my life without Ethan in it and I’m so thankful that we decided to have another child despite all of the problems we faced.
For anyone else in a similar situation I would give the following:
- Trust your own judgement – you know your own body better than anybody else.
- Communicate openly with your partner – it’s hard for them to understand the pain that you’re in and it can be frustrating for both of you so you may need to give them guidance on what is helpful and what isn’t. During my first pregnancy I hated letting my husband do things such as helping get me dressed. However, during the second pregnancy, I accepted this and it made things much easier. It’s also inevitable that you’ll feel angry at them at some point so try not to feel guilty!
- Don’t be afraid to let others know how much pain you’re in and ask for help even with seemingly ridiculous things like putting your shoes on!
- Persist in seeking help and don’t just accept what medical professionals tell you if you aren’t satisfied.
- Ring the Pelvic Partnership for support, information and to be taken seriously with lots of ideas for how to make progress wherever you are starting from with your PGP.
- Accept that style will go out of the window – it’s all about comfort!
- Try not to compare yourself to other pregnant women. It would be lovely if we all sailed through pregnancy but some of us don’t and the important thing is that we have our healthy babies at the end of it.
Thanks so much, Jenny, for your story and for taking the time to outline some bullet points which could benefit other women who find themselves in a similar situation. It is very encouraging to see that you really valued a conversation with a Pelvic Partnership volunteer and appreciated the information and support you received.
We would certainly like to encourage any woman who has PGP to give us a ring as soon as the symptoms start. Similarly, any woman who has intense pelvic pain and suspects PGP but hasn’t received a diagnosis, please contact us. We can then offer support and information as well as the chance to discuss what to do to be heard, get an assessment and to find appropriate treatment for PGP – no woman should be left on crutches battling without being heard and without being offered manual therapy from an experienced physio, osteopath or chiropractor.