My story: an Occupational Therapist’s personal account of PGP and practical tips to manage the symptoms
I have wanted to share my experience of PGP to help support and encourage pregnant and postnatal women with this diagnosis.
I hope it will be useful to other women for to share my experience of PGP in both pregnancies, having had both a natural birth for the first and an elective c-section for the second with just under a two-year gap between our boys. Because I’m an Occupational Therapist (an OT helps people engage as independently as possible in the activities/occupations which enhance their health and wellbeing), I wanted to share some examples of equipment and compensatory techniques that might help you in your work and home life whilst coping with PGP.
My first encounter of PGP was on a holiday we took when I was five months pregnant with my first child. Up until then I had been having a good pregnancy and enjoying my growing bump. It no longer looked like I had eaten too many of the hula hoops I craved. I was working full-time as an OT in the community; this required me to be very active in my job and involved lots of driving to visit patients in the surrounding area. At this point I wasn’t aware of PGP and no one in my family, work or friendship groups was aware of it either. Whilst on holiday we decided to meet some of the family on a country-side walk. After walking rather a long way I suddenly felt a sharp, intense, pain in my pubic bone. I doubled over and held my hands in-between my legs, feeling like something was about to fall out. After a couple of minutes the intensity had reduced, leaving me with a hot throbbing feeling. We decided to cut the walk short and bus it back. In the weeks following I continued at work as normal without making any significant changes to my day-to-day life whilst still believing that this hot, throbbing feeling must be very normal for later pregnancy.
As I am a very independent person who loves to be active (as well as a stubborn health professional) it takes a long time for me to ask for help regarding health matters. Eventually I spoke about my symptoms at my next midwife appointment. She immediately referred me to a Physiotherapist believing I had PGP. However, all I was told about the condition was that it would disappear after birth. I simply accepted this and continued as I was. In hind-sight I should have asked far more questions, and asked for advice on coping with the condition. But as some of you know, when it is your first pregnancy we seem to just nod and go with it, assuming everything is OK and normal.
I did not see a Physio until 34 weeks when I attended a group education session. At this point I really felt I needed a one on one Physio appointment as an education session was now not appropriate as my symptoms had greatly intensified. In-between waiting for a Physio appointment my mobility had considerably reduced to only walking a couple of metres unaided. I was finding climbing stairs increasingly painful and needed to crawl up on all fours. The Physios that I worked with were fantastic and even though they had not worked within this particular area they supplied me with crutches and a pelvic girdle belt as well as giving me some practical advice. (Editor’s note: this does unfortunately prove they had not worked within this area as crutches and support belts are not real treatment –providing manual therapy is the best way to treat PGP successfully). I decided to see if I could change my work role so that I would become office-based. This would remove the need to use my car as often as I was finding getting in and out it was becoming increasingly difficult.
Work were fantastic and allowed this change to happen for the remainder of my pregnancy. I also changed my working environment, utilising a gym ball and a wobble cushion to sit on at my computer space and taking regular breaks to stand and walk with my crutches so I didn’t seize up. It was very fortunate I was able to do this within my team, and I am aware this may not be possible for most people. However, a pregnancy risk assessment, usually overseen by your manager/ supervisor and Occupational Health should be normal procedure in most lines of work. This should involve a review of areas of risks to you and the baby, and subsequent actions to address these risks should be agreed by all parties and regularly reviewed, enabling you to continue you to work safely and with as little pain as possible. In the end I finished work earlier than planned at 34 weeks as I could no longer drive even to work. This sadly meant I was housebound for the remainder of my pregnancy.
Finally I had a one on one Physio session at 38 weeks! My pelvis was out of alignment and needed manipulation which the Physio did complete competently. Sadly both the Physio and I knew this was too little too late. Four days later I went into natural labour (10 days earlier than expected). Both my husband and I felt underprepared in how to manage PGP within labour. We hadn’t written a birth plan as that was to be discussed at my next midwife appointment. However, despite everything my labour was a very positive experience with fantastic team work between myself, my husband and the midwife. I laboured mostly on the bed as I was unable to sustain standing. I needed physical help to change positions and to keep my pelvis aligned and I gave birth side-lying. There were other complications (non PGP related), but the birthing team assured me that this was nothing to do with PGP and the restrictions that it placed on my body position during birth. After William was born I received one further Physio appointment for my PGP. Again, in hindsight, I should have requested further intervention as my recovery from birth to being able to be an active mum took over eight months. However, lessons were learnt during this pregnancy and this was to be invaluable for my handling my second pregnancy.
This pregnancy was a completely different experience even though I was aware that PGP was again likely and could potentially manifest earlier. We did, however, after many in-depth discussions, decide it was right for us to have another baby within a two year gap. I took control as soon as I found out I was pregnant. This involved being assertive about my body position, using compensatory techniques when necessary and speaking with health care professionals early on about my past history of PGP, prior to any PGP symptoms becoming apparent.
My pregnancy was categorised as under ‘consultant care’ due to the acute PGP I suffered (as well as other non PGP complications) in the previous pregnancy. This time PGP started earlier at 20 weeks. I instantly knew the symptoms and acted quickly, immediately requesting an urgent Physio referral via my midwife prior to my next appointment with her. I received a one on one appointment within two weeks. At that time I was beginning to notice minor symptoms of PGP compared with the acuteness of last time. This is because I had actively compensated prior to symptoms starting; reducing the distances I walked, getting up from the floor using support from another chair and not splitting my leg position, having a pillow between my legs at night, minimising the need to go up and down the stairs, not crossing my legs or sitting on the sofa with my feet curled up around the side of me, as well as keeping my legs together when completing car and bed transfers.
The Physio gave me a pelvic-girdle and a list of core-stability exercises following a physical examination. (Editor‘s note: best practice nowadays for Pelvic Girdle Pain is for the physio, osteopath or chiropractor to provide manual therapy ahead of suggesting core-stability exercises. This ‘hands on therapy’ is designed to realign the pelvis (which is often asymmetrical with pelvic girdle pain) and to release stiff or stuck joints. Manual therapy is the most effective way to combat the symptoms of PGP). We also took time to discuss the labour options available to help me be fully informed of the final decision that my husband and I would make. The Physio also made the recommendation to keep my referral to her ‘open’. This enabled me to contact her directly when I needed further advice or input.
At 24 weeks I contacted the Physio to request some crutches and further telephone advice on management of PGP with an active toddler. I knew I had to be assertive with my body and pace my activity, as I was aware that the symptoms were unlikely to reduce. Doing this helped me to have some control over it which was important for both my physical and emotional wellbeing. I must admit that it was hard to keep positive, especially as I needed to have crutches again. This was hard to accept at first. At that time I was a full-time, active mum who attended five groups a week whilst pushing a pram to each. Things had to change and fast. I needed to be realistic with my abilities, and I needed to learn to ask for help. My husband and I knew that this pregnancy was likely to end up like this and we took time (before I got pregnant) to listen to one another’s concerns, fears and frustrations as well as try and plan in the help we knew we would need. I looked at PGP as a challenge – to somehow continue being an active full-time mum and not let PGP become a negative experience as it had been in my first pregnancy. To do this I set out to utilise strategies that would be positive to us as a family and especially for our toddler. I continued with all the body position precautions I mentioned above, and I now had to work out how I would further manage myself, let alone a toddler whilst being on crutches! Recognising my skills as an OT to aid this but also using my general common sense to perform these daily activities was crucial to my health and wellbeing.
Below I have bulleted as many tips I can think of:
- Plan your day. Know what you would like to achieve that day and be realistic in how this will happen. (This helped me plan how much I would have to walk and to try and keep the amount of stairs I encountered to an absolute minimum.
- Pace your day. Being less mobile means most tasks take longer and when you are in pain it is tiring physically and emotionally.
- Lists and more lists. Be ultra organised. (I found being increasingly housebound but being able to active ‘manage’ family life via lists and planning for activities really helped me feel I was still a valued member of the family. Also, this helped when other people needed to look after my toddler as they knew exactly what he would need in his bag.)
- Think an activity through, and task analysis – breaking tasks into components and altering how you would normally do it if needed. e.g. Many activities I did with my toddler became ‘table top’ activities. This included making jigsaws, building towers, cake making, painting, play dough. Anything I knew myself and my toddler could do off the floor we did as I was unable to do any floor work due to immobility and pain.
- Plan comfortable nappy changing areas both up and down-stairs. I even used the sofa to change on, to halve the amount of bending I needed to do.
- Involve your toddler. Plan your day and include them. That way he starts to grasp that mummy wouldn’t always be with him. In a bizarre way being on crutches was so beneficial for both myself and my toddler in preparing for the baby’s arrival. I would not be able to lift my toddler post c-section, so he started getting used to not being picked up when he had hurt himself or wanted a cuddle. I just bent down to him or sat on a chair to reach his eye level. This also helped me loosen up my 1:1 playing with him as I wouldn’t be able to give complete all day attention.
- Involve you toddler in helping you. I would ask my toddler to be helpful by picking up objects off the floor for me e.g. the phone I left over the other side of the room or picking up his toys at the end of the day. This really helped his transition when his little brother came along as he felt a valued member of the family and confident in his increasing independence
- Teach your toddler to climb into his car-seat. I even used a step stool to save trying to lift him in.
- Make preparation to enable you to have both hands free for crutches. I swapped my nice one-strap nappy bag to a practical rucksack!
- See if others can transport you around. I was fortunate to be able to plan with family and friends to drive us to toddler groups. If this isn’t possible then perhaps you can host play dates at yours…
- Involve extended family in toddler sleep-time. I arranged for family and friends to be able to put my toddler into his cot, so I only needed to help him out of the cot once in the day and didn’t need to carry him upstairs. However, I did keep a rug downstairs so he could sleep on the sofa when I knew he wouldn’t be able to access the cot.
- Online supermarket shopping. Thank God for home-delivered shopping!
- Reduce cooking sessions. This can be as simple as cooking double what you need and storing spare meals in the freezer. We were fortunate that after we had our second child we had meals prepared by friends from church who brought them round for the first two weeks.
- Utilise a swivel seat or a supermarket carrier bag. This will ease the movement to swivel-transfer into the car keeping your legs together as much as possible. At times I needed my husband to support this movement.
- Trip Planning. Know where you are going to park, what facilities are there when you get there and where these are situated. Many garden centres or shopping areas do have wheelchairs you could utilise. I phoned ahead to a lot of places to check first. I needed some persuading, but it was fantastic as my toddler sat on my lap and we were able to get out and about as a family. Sadly the Government still won’t permit the issue of temporary disabled-person badges for cars for people like us. However, this may change.
- Ask for an OT referral. Once your symptoms have started to limit your capacities it really is worth requesting OT intervention. If you are unable to access your toilet at night you will need a commode by your bedside. I had a commode downstairs as we do not have a downstairs toilet, and I could and only wanted to climb stairs once a day. I also used a raised toilet seat and free standing toilet frame to aid toilet transfers. These pieces of equipment can be arranged by an OT or loaned by the Red Cross in most areas.
- Slide sheet, silk sheets or silk pjs to make bed-transfers easier, as well as enabling re-positioning self in bed! I even took my slide sheet into the hospital so I could be moved more easily in bed post c-section! A bed-lever, which is an aid to help the user independently move themselves whilst in bed and also to assist leaving or entering a bed. This could be provided if needed after assessment by an OT.
We decided to go ahead for a planned elective caesarean section due to previous complications, as well as knowing my PGP could be managed better, lowering the risk of further complications in the unpredictability of labour. This was discussed with the Physio, midwife and consultant and we felt empowered and fully informed before making any decision which is surely what client-centred care in the NHS should be. Any fears I had of the c-section being very clinical and not personal were completely unfounded. We had a great team who talked us through all that was happening and asked my opinion and advice regarding leg positions etc. in prenatal and postnatal care. I was expected to keep up with the normal recovery post c-section, walking the next day to the toilet and starting to care for our baby by my bedside. However, the postnatal team were fully aware of my limitations and being on crutches was a visual reminder to them. I had support in breastfeeding and was provided with an appropriate chair and stool so I did not need to cross my legs. I took in my own slide-sheet which supported my independent bed movement and transfers, which was so essential. I also felt more in control of my pain medication and had confidence to ask for regular pain mediation and higher dosage when I needed it. I was discharged on day two. My midwife prior to c-section had highlighted to the community team that I would need to be seen at home due to being housebound. This was also communicated at hand-over to the health visiting team. I also requested our baby to be weighed at home for the first four weeks which they were very happy to do. After five days the crutches were gone and short distances in the house were walked! I am in week nine and I have started to drive and I’m nearly fully independent again. I’m requesting a review Physio appointment as I am still having pain in my symphysis pubis joint if I am up and about walking for more than five minutes in one go. However, I’m hoping to be back to full steam ahead in the future. From my experience the health professionals were very amenable and happy that I had taken charge of my care and worked as a team together for a positive recovery. I therefore want to encourage you to take action with your health-care team. Please do not do what I did in my first pregnancy, i.e. I just nodded and accepted care which I now realise fell far short of my need. I would highly recommend seeking assessment from an Occupational Therapist if you are finding your normal work and home routines difficult or if your physical ability to complete these tasks is affecting your daily living. There are a number of avenues to seek OT input. First you could discuss an assessment with your GP, midwife, health visitors or any other health professional you are involved with who could do a referral on your behalf. Secondly, you could contact your local County Council and ask for a Social Services OT assessment and thirdly, you are able to contact private OTs. The College of Occupational Therapists (COT) has a Specialist Section for occupational therapists working in independent practice who are fully qualified and registered with the Health Professions Council (HPC).
Many thanks, Helen, for sharing your experience of PGP and for passing on a great deal of practical information that you found after experiencing PGP in both your pregnancies. The Pelvic Partnership would like point out that maternity or pelvic-girdle belts are useful to use to hold the pelvis in place once manual therapy has been given and any misalignment of the pelvis has been corrected (and stiff or stuck pelvic joints have been freed). Although exercises can be useful further along the treatment path, best practice is now to provide manual therapy as soon as symptoms occur because it is the most effective way to combat the symptoms of PGP.