Guest post: “I looked forward to the pain of labour as I couldn’t believe it would be worse than PGP.”
Pregnancy-related Pelvic Girdle Pain (PGP) can be a very painful and debilitating condition, both during and after pregnancy. The Pelvic Partnership’s Stickmum campaign is aiming to raise awareness that PGP is treatable with manual therapy. One of their volunteers, Laura, shares her story of how manual therapy helped her to walk again after a struggle to get a proper diagnosis.
Posted on: Mon 18-Feb-19 11:09:44
(69 comments )
Before I had my first baby, I was cycling or jogging to work every day. I knew I wouldn’t be able to keep this up throughout my pregnancy, but I had a vision of walking to and from work, then practicing prenatal yoga every day, to keep myself strong and supple as my baby grew.
I managed this for about 16 weeks, and then the pain started. A jarring, aching pain throughout my pelvis and groin, which then spread into my sacroiliac joint (the big bony bit at the bottom of your back). Within a few weeks, I found it difficult to walk. I remember asking my mum to slow down as she walked ahead of me one day, as I couldn’t keep up. Before I’d always be the one who was rushing ahead, and now I could only take baby steps, very slowly.
Thanks to my sister, who had had similar pain in her pregnancies, I discovered I had pregnancy-related pelvic girdle pain (PGP). It’s hard to describe the pain of PGP, but if you imagine someone taking your pelvis and pushing one half up and one half down, then banging on your sacroiliac joint repeatedly with a large hammer, you’ll get an idea. PGP affects 1 in 5 pregnant women, and makes it hard to do everyday tasks, like sitting, standing, climbing stairs, turning over in bed or walking. My pregnancy turned into a vision of months of pain, having to carefully plan every trip to minimise walking or sitting on hard chairs, and feeling constantly exhausted after the smallest activity.
My midwife was sympathetic but did not offer a physio referral until I asked for it, instead suggesting it was just one of those things we have to put up with in pregnancy. It was the same story in my second pregnancy, when I was a different part of the country. In both pregnancies, I ended up on crutches, in constant pain, and utterly miserable. I looked forward to the pain of labour as I couldn’t believe it would be worse than PGP.
In both pregnancies, I ended up on crutches, in constant pain, and utterly miserable. I looked forward to the pain of labour as I couldn't believe it would be worse than PGP.
We had always wanted three children, but we had to consider how a third pregnancy would affect our lives and my mental health. PGP can be incredibly isolating – I have many friends who’ve struggled to conceive, and I felt I couldn’t complain about my pregnancy, as it was something I had chosen and was lucky to be able to do at all. It was hard to play with my son during my second pregnancy (I couldn’t sit on the floor, run after him or pick him up), and I worried that he would blame his unborn sibling for spoiling our fun. We’d also need to pay for extra childcare, and account for my husband taking extra time off – he’d had to help me get dressed in the morning and sometimes to pick me up off the toilet.
If I hadn’t found the Pelvic Partnership, I don’t think we’d have had our beautiful daughter, Emme. They told me about manual therapy treatment, and explained what that involved. I found a great physio and immediately started to improve, so that my third pregnancy was a completely different, positive experience.
The Pelvic Partnership is a tiny UK charity with a simple, life-changing message: PGP is treatable. Through their Stickmum campaign, they provide women and healthcare professionals with information about best practice for treatment and management of pregnancy-related PGP. Their website is packed with information and real stories from
women who have experienced PGP. They work with health professionals to improve the understanding of PGP so that more women can get an early diagnosis and referral for treatment, reducing long-term costs to the NHS.
Their new Stickmum video ‘What to expect from treatment’, follows one mum, Becky, as she receives manual therapy from her physio. In a recent study, the Pelvic Partnership found that, although manual therapy is available on the NHS, more than half of women surveyed were never offered a referral for physio, and 43% of women felt their symptoms were never taken seriously. Two thirds reported mental health problems as a result of PGP. Other studies have shown that 10-19% of those with PGP in pregnancy still have significant symptoms 11 and 12 years later.
I was so determined that other women shouldn’t go through what I’d been through that I asked the Pelvic Partnership if I could volunteer to help with their Stickmum campaign. We want to create a chain of women supporting each other. You can help by sharing our campaign page and videos, or following us on Twitter and sharing our campaign tweets and hashtags #pgpistreatable #getamummoving.
If you need help with pelvic pain, please don’t wait - visit our website or our Facebook page. You are not alone.
Laura will be back to answer any questions you may have at 8pm on 20/02/2019
By Laura Smith
@WutheringBites thanks for reply - good to hear we have more pelvic floor evangelists in the world. I also have my yoga teacher to thank for making me a little over obsessed with mine!
Thanks Laura. I have donated. Best of luck and hope pelvic partnership goes from strength to strength.
I’m a dr; so it’s really good to see the profile of this raised - thank you!.
I don’t think there’s much I can do about the pain I get now (I have lots of other stuff going on, including hypermobility which I think is probably linked) and I’m positively evangelical about pelvic floors!!!
Thanks so much for responding @LauraSmithPP . I work fit the nhs .. in a completely different sector but I do quite often see pre and post natal women so it’s great to have something to pass on .
You have done a great thing getting extra attention and help out there .
I will echo what many women have all ready said that it tends to be dismissed as part and parcel of “ normal “ pregnancy pain .
So so frustrating.. I had “ normal “ aches and pains with the first two but after my third and the experience both physically and mentally I would never have another .
I am glad that so many of you have told us you have found the Pelvic Partnership helpful – that is great feedback to us as volunteers, as we aim to make people feel less alone and empowered to look for the right treatment for their individual symptoms, and I would encourage anyone reading this who is struggling with PGP to check out the charity’s website for help and support. The charity is run by volunteers who have personal experience of PGP. We are always happy to receive donations to help us to support more women pelvicpartnership.org.uk/donate-now/ . Also, anyone who would like to get involved as a volunteer to help improve treatment of pregnancy related PGP will be warmly welcomed - we value your experience. You can see our contact details her: pelvicpartnership.org.uk/contact-us-and-faqs/
@fionafreesia Good question. X-rays can rule out serious bony problems but don’t show joint movement. Often women are really disappointed if they just have a straight X-ray (which is all most places offer) which shows there is nothing of concern. They then feel that their pain is not being believed. Stork xrays will often show a bit of asymmetry as they are taken standing on one leg so show of things move too much. However, the best X-ray finding is nothing on a stork X-ray - this means you have ruled out serious bone or joint damage and also serious ligament stretching, and therefore it is likely to be that one of your sacroiliac joints is a bit stuck, which should be straightforward to treat. However you don’t need an X-ray to get to good manual therapy, and the sooner the better. X-rays will often not add a great deal of information that a good manual therapist can’t work out.
Sounds like you've had a rough time. Hydrotherapy can be really good as pain relief, but doesn't sort out the underlying problem, which is why it doesn't improve your symptoms throughout the pregnancy. Manual therapy is the most likely treatment to help. If one type of manual therapy isn't working for you, it may be worth getting a second opinion. Sometimes, if you are having manual therapy, and it's still not better, it can be because of pelvic floor involvement, particularly if you've had a tear or episiotomy, so it's worth asking another practitioner.
On the b/f, my chair tells me that a recent study of 14k women in Scandinavia found that b/f actually sped up recovery, and the theory that it delays it is based on the theory that PGP is all down to your hormones. So again we'd suggest asking for a second opinion on your manual therapy and pelvic floor.
Best of luck.
Do you think it's worth asking my doctor for an x-ray?
Oh and I still get it now, despite manual therapy and littlest one is 3. 😰
I had terrible spd/during all three pregnancies and found the only thing that helped was hydrotherapy. I used to have a half hour treatment on a Friday morning and be able to walk (very short distances) for Saturday! Otherwise I was completely immobilised.
I have a theory that it takes longer to resolve after delivery if you b/feed (although I did, for 18m each time). Is there any evidence that backs this up?
Hi @FionaFreesia - good question! I would say - persist, persist, persist until you get manual therapy!
If you had one piece of advice to give someone with PGP, what would it be?
Hello @Hi Flamingnoravera
It sounds like you didn’t get manual therapy after your last pregnancy, so when this happens you often still have whatever the underlying problem was, usually a sarco-iliac joint at the back of your pelvis that’s a bit stuck. You’ve probably functioned pretty well on this, although as @oldsilver has said sometimes doing a bit of gardening, or stressing the joint a bit in later years can bring the symptoms back. The same applies if you get PGP symptoms at different times of your menstrual cycle – it is showing up an underlying niggling (or sometimes severe) problem. This usually responds really well to manual therapy, so worth giving this another go – don’t be fobbed off and told that it’s not all that bad and your core is just weak. Make sure they look at and treat your pelvic joints until the pain resolves. And yes, the practitioners who treat women during and after pregnancy will have the right skill set to treat you later in life too. Good luck with it, and do keep persisting. Please don't let it ruin your gardening!
Hi @45andahalf I'm really sorry to hear you are worried about making your family the size you planned because of PGP. Our chair, Sarah, had a terrible time with her first baby but she was determined not to let PGP stop her long term plans, and with the right information and support she went on to have two more children. Getting good treatment is really the key.
As I've said in other responses, we had to think long and hard about trying for a third child. We did a lot of planning to minimise the stress on me (mentally and physically) and booked out childcare for the last month of my pregnancy (from my mum and my mother in law), and I rearranged my work schedule. My husband worked shorter days, and I requested physio from my first midwife appt (see previous posts). I was lucky that we could afford to do this, and had the flexibility to do it, but I appreciate that it is a huge stress. You can get through it with treatment, please have a look at our website and give us a call if you need to talk it through.
Glad to hear that you got better after both pregnancies. I've asked our chair, Sarah Fishburn, to respond to you - here is her answer:
Often this can happen because you have a fairly strong overall muscular system, but as soon as you get pregnant, it just tips the balance and your underlying joint problem shows up again. It would be worth getting your pelvis checked by someone with good manual therapy skills, just to make sure the joints are all functioning symmetrically in the meantime, and particularly if you are planning another pregnancy – hopefully this way your symptoms wouldn’t be as bad in another pregnancy. You can find a list of practitioners on our website who may be able to help: pelvicpartnership.org.uk/recommended-practitioners/
I am sorry you are having such a difficult time @cookiewuk. If your osteopath is not helping you may want to consider trying someone else. The Pelvic Partnership keeps a list of recommended practitioners who have successfully treated our members. I appreciate that this can get expensive. Do try your NHS physio again – it does seem strange that they would only see someone once or twice if you have ongoing pain, but it is true that physios have a huge workload and are underresourced. This is better in some areas than others, unfortunately. I have to say that I had to make a lot of phonecalls before I got regular physio - and that was then I understood PGP and was able to put my problems into words. You can also go back to your GP to ask for a referral if you are not having any luck through the midwifery/health visitor team.
You might also find it helpful to speak to someone on the charity’s helpline pelvicpartnership.org.uk/contact-us-and-faqs/
@Squeezysparklyballs that’s a perfectly reasonable question! The Pelvic Partnership provides support and information about PGP to women with PGP, their families and carers. We aim to raise awareness that it is a biomechanical joint problem which can be effectively treated with manual therapy. We also aim to inform healthcare professionals about PGP and promote best practice for its treatment, with a view to getting better access to treatment across all areas of the country.
In practical terms, we maintain a website full of detailed, up to date information on PGP. We provide a telephone helpline and we have recently launched a support group on Facebook. Our trustees raise awareness amongst healthcare professionals by presenting at conferences and training events.
We’ve just launched a video showing what manual therapy looks like, and we hope this will empower women to ask for the right treatment - pelvicpartnership.org.uk/stickmum-campaign/
The charity’s ambition is to get to a stage where we are not needed, once women are offered the right information and treatment by their GPs, physios and midwives.
It is a tiny charity, with a huge amount of work done by volunteers who have experienced PGP in the past. I have only joined recently, but I can attest to the dedication of the other committee members and trustees who have worked for years to try to improve the situation for women with PGP.
@TheFairyCaravan thank you for sharing your story. Your experience is way beyond my knowledge level, so I’ve asked our Chair, Sarah Fishburn, to respond. Here is her message:
This all sounds like you have had a truly grim time, and I can completely understand your frustration at hearing our message about PGP being treatable. It looks like you have done absolutely everything you could possibly have done to get a good outcome, and in spite of all that, you still have horrible pain and it is having an ongoing impact on your life.
I’m really pleased to hear that your surgeon is not discharging you which indicates that he is understanding of the level of pain and disability you are experiencing, and that he is still trying to find ways through to help, as this is often not the case for people who’ve had surgery, and it is much harder to get back into the system if you have been discharged. I do hope the SI denervation gives you some relief, and that the pain clinic also continue to support you. This on-going type of relationship is really important when you’ve had such a long-standing problem, and it sounds like you have a supportive team working with you.
As you say, PGP can sometimes persist despite all these efforts, but our message is to try manual therapy and not be fobbed off with the idea that it will all go away after the birth, and we do find that for the vast majority of people this is the case. So many people are told that there is nothing that can be done and don’t even start to access manual therapy until much later, when with early intervention it could have all been very different. I’m really sorry that this hasn’t been the case for you, and for your ongoing pain and immobility, and send my very best wishes.
@Thisimmortalcurl I totally understand your frustration and upset at feeling that a treatment that could have helped you was not even offered. The Pelvic Partnership was born from a group of women who felt the same way. Things are changing, in some areas the treatment on the NHS is good, but there is still a way to go. Word of mouth is one of our strongest tools, so please do tell others about us if you think we can help, and encourage people to ask for treatment if it is not offered to them. We are a small group but our plan is to create a long chain of women who help each other by passing on the message and getting their voices heard.
I am sorry you didn’t get the support you needed in your first pregnancy and I can appreciate how lonely it must feel facing it again. I know I had a mixture of terror and elation in my third pregnancy, and spent a lot of time talking it through with my partner before we decided to even try for a baby. I would encourage you and anyone else reading who is feeling low and isolated dealing with PGP to speak to their midwife and also to seek support from the Pelvic Partnership via their helpline or Facebook support group. Speaking to someone who understands what you are going through can make such a difference. Have a look at the stories on our blog, as it can be helpful to just hear about other women’s experience. You may also find some info on the site that will help you ask for treatment – feel free to print out sections of the help pages if it’s easier to just hand these over! The mental health aspect of PGP is often forgotten, not necessarily because people don’t care, but because it’s just not understood, and I know I for one would often say ‘I’m fine!’ at my midwife appointments when I was really not fine, mentally. I think people with chronic pain of any kind will understand how mentally exhausting and isolating it can be – you get to a point where you don’t want to complain anymore, but I found it helpful to just talk to people. I had been reluctant to talk to friends who’d struggled to conceive, but when I eventually told them how I was feeling they were so supportive – just as I would have been if they were struggling.
@DuploRelatedInjury that is so disappointing to hear that you were told a physio referral was not possible. I wonder if you have considered complaining. We are all encouraged to just put up with these things as part of pregnancy but unless people complain it won’t change. Did you try asking for a referral from your GP? It’s hard to put your foot down when you are feeling terrible but unfortunately that’s what we have to do sometimes. In my third pregnancy, I asked for a referral from 12 weeks, but was told to wait until ‘the pain started’, even though I’d had PGP twice before. I did this and then was told it would take several weeks, by which time the pain would get much worse. Then I discovered that the referral had been lost due to – can you believe it – a broken fax machine, so I had to go through several phonecalls to get an appointment in. I have to say that the physio team were very helpful and keen to get me in asap, but were held up by the midwife team not marking me as ‘urgent’. So my persistence eventually paid off, helped by the fact that I knew quite a lot about PGP by then.
@RockyRocky I am sorry to hear that it has taken so long for you to be taken seriously by the doctors. This has clearly had a big impact on your life. It shouldn’t be like this. I hope you now manage to get the treatment you need. Please do give us a call if you need support.
Hi @LivininaBox while many NHS Trusts do offer good treatment for PGP unfortunately your experience is not uncommon. The Pelvic Partnership is campaigning for all NHS Trusts to adopt best practice in treating PGP. I’ve had treatment in three different trusts with several different physios – all of whom were nice and wanted to help, but only one of whom really understood PGP and how to treat it. Some were very restricted by how much time they could spend with me and were acting in good faith to the guidance they’d been given (for example, offering support belts). Thanks to the charity, I was able to talk to the last physio team about what I wanted, and was better able to put my pain into words, but it did require some persistence on my part (and on the physio's part, as she went off to research it herself).
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