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
I did find spd made labour more painful in particular my already sore pubic bone felt like it was going to break under the pressure
I can identify with this so much - every word. I got PGP from 15 weeks and found that nobody (except for those that had experienced it before) really appreciated how bad it was. It's so isolating and I never really understood the impact that chronic pain can have on your mental health.
I found a physiotherapist through the Pelvic Partnership and I honestly don't know what I would have done without it.
Mine was completely comparable to labour. Didn’t have it with my first two pregnancies but my third ...never really experienced pain like it . Waking up in the night screaming because you had turned over ... all the mental energy to focus on getting up and making yourself do what you had to do .
Absolutely awful .. my third child was my longest labour, no pain relief and a shoulder dystoration... and it was in no way worse that 26 weeks off that hell.
I did see a physio at one point and found it useless.
It makes me quite upset that there was something out there that would have helped and we don’t it seems from this post in the main recieve it.
She didn't say labour was worse than PGP. She said she looked forward to labour because she couldn't believe it could be any worse than PGP. That's not the same thing at all.
I looked forward to labour because it meant my pregnancy would be over. There was no joy, or anticipation at that stage, the constant pain and the total loss of dignity had stripped all that away. I just wanted it to be over. I didn't really care how, or how much it hurt. I just wanted an ending.
I've had severe PGP for over 22 years and have had more manual therapy than most people have had hot dinners. I love the Pelvic Partnership but their stance of "PGP is treatable with manual therapy" really irks me because sometimes it's not, the same way as sometimes it doesn't go away after the birth like all the midwives and doctors tell you it will.
I was on crutches from 16 weeks and bedbound from 26weeks. The only time I left the house was to go to hospital appointments and then that was in a wheelchair. I had a very fast labour with DS2 because my symphysis pubis had seperated so much.
After the birth I saw practically every physio in the hospital but my pelvis was so loose as soon as they'd get it into postion it would slip back out. DS2 was 18months old when I had my first steroid injection into my symphysis pubis. I was then referred to a pelvic surgeon, the gap between was symphysis pubis was huge still and the left side of my pelvis was rotated upwards and outwards. I had more manual therapy, again to no avail.
We moved across the country and I was still in agony, by now DS2 was 5. I decided to see if paying for an osteopath would make any difference. I chose one who was recommended to me, and who treated an England sports team. After 6 or 7 sessions, he admitted defeat. That was quite disheartening.
One morning, when DS2 was 8, I lifted my leg my pelvis made a huge crack and the right side dropped. I went to the local A&E and admitted for a few days. While I was there I had scans and x rays. They found that I'd now torn ligaments in my right hip. I had more steroid injections and they started to talk about surgery but they weren't confident to do it there so I was referred on.
As it was we moved again, and when the surgeon at the very, large teaching hospital saw my scans and xrays he booked me in for surgery straight away. He was very apologetic that I'd been left as long as I had. When I woke up from the surgery I had pain, but the PGP pain was better. For the first time in years i had hope. That turned out to be short lived. The fusion didn't take, the screws and plates he used were too big for my frame and they were loose and the surgery exacerbated the pain in my SI joints.
I did loads of research and found a very good pelvic surgeon who is local to me. I paid for a private consultation. He took one look at all the scans, examined me etc and said the fusion needed repeating. After that operation I spent six months in a wheelchair/bed. I wasn't allowed to use my legs for any weight bearing not even to push myself up in bed. Unfortunately I ended up having to have my SI joints fused too.
Since then my fusions have broken down twice and I've had to have them redone. I'm still in a hell of a lot of pain and am unable to walk unaided. My surgeon won't discharge me because he says I'm not well enough, he gives me regular steroid injections to try to give me some relief. I'm waiting to see if my pain consultant will agree to denervate my SI joints. I had a spinal cord stimulator trial but they couldn't get it turn off my pain in my pelvic region although the neuropathic pain in my legs disappeared, so I can't have one. On top of the SPD I've now, also, got arthritis in my pelvis, hips and spine and Fibromyalgia which they think was triggered by the SPD.
I appreciate that I am a very rare case but my life has been completely robbed by SPD.
Oh my goodness @Thefairycaravan .. that makes mine seem like an absolute walk in the park. I really hope you get the best treatment possible.
I was lucky in that my physio referral came through very quickly (second time round...), and my first appointment was within a week of me seeing my GP. It didn't do any good though.
First pregnancy was awful because of it, and I've never felt so low or so isolated. Friends didn't seem to twig how bad it was, or that I could do with visits/help, and I felt my world close in on me.having a newborn was an absolute joy compared to the spd.
I'm now feeling the same in my second pregnancy. I'm feeling those walls close in again, and I know it's just going to get worse.
I had this. Horrible.
Can I ask what this organisation actually does?
Have to admit, I was aware of them during my pregnancy but other than lots of pep talks on their website about we don't have to suffer, I'm not sure of what their purpose is?
Apologies for slightly playing devils advocate here.
It is absolute agony!! I had it both pregnancies and had a physio referral second time around but it was extremely unhelpful as I was talked through doing pelvic floor exercises and given a leaflet on how to do kegels. Clearly wasn't a specialist physio. I suffered right the way through to giving birth - thankfully it stopped immediately after having both ds'.
My dd is 7 months now (3rd child) and I am in agony after walking approximately 2 miles today. I had to crawl around the house at one point, it was so bad. I am currently holding back the tears while feeling hopeless. I saw an NHS physio during pregnancy and have seen an osteopath 5 times postnataly but nothing has helped. I can’t afford to keep seeing the osteopath when it makes no real difference and the NHS physio tells me they are only allowed to see patients once or twice due to funding cuts.
I need something that will allow me to have a normal life again. What do you recommend??
Ooh my second pregnancy I had SPD from about 16 weeks. He’s 18 soon as still a pain. In my next pregnancy, I experienced it again but not as severe. I was advised to put in my care plan that I shouldn’t have stirrups. This was completely ignored of course.
I had it from 15 weeks, I was waddling like a duck and was so painful. I saw a physio andcwas given an elastic belt support to wear. It made little difference. This was 24 years ago. I now have very similar pain as I enter menopause. Is there any evidence that the condition can recurr in later life and does anyone know if the specialists listed on the PGP website might be suitable to seek treatment from? I've tried everything but none of the practitioners I've seen seem interested in my PGP during pregnancy as a factor in my current pain.
God, I thought I had a rough time of it with SPD from 26 weeks, on crutches or crawling around until I had DS, and with it taking months to resolve after DS was born. DS is 4 and I’ve only very recently been able to squat without pain. But some of you! FairyCaravan especially - your case is horrific . We wanted two children but I’m scared to get pregnant in case it happens again and doesn’t resolve. I had physio on the NHS while pregnant but it was completely useless.
toffee ditto with the stirrups. Until right at the end, the midwives were so careful and respectful but then DS got stuck, the consultant whisked in with her forceps and cracked me open like a spatchcock chicken. I was worse afterwards than I had been before DS was born! I could barely carry him anywhere, DP had to carry him downstairs every morning for me, and then we were stuck indoors for weeks until I could walk again. I could never use a sling because of the weight on my back and hips. I’m convinced that’s one of the reasons I got PND.
13 years ago, I was given a physio appointment...2 weeks after my dye date. After ringing them they agreed to bring it forward
after a few tears . I was given a tubigrip (not helpful) and a huge velcro belt (some relief). They wrote in my birthplan about not using stirrups and gave me some leaflets.
2 weeks later somewhat luckily I ended up having an EMCS, and of all the issues I had after - SPD (as it was then) was gone.
Funnily enough flamingnoravera in my 50s now, overdid the gardening and I explained the pain to DH as just like SPD. You may be on to something there.
Thanks for all the comments and questions so far, I will try and respond to as many as I can. I've consulted with my colleagues at the Pelvic Partnership, including our chair, Sarah Fishburn, to try to get answers to all of your questions.
It’s frustrating to hear that so many of you are not being offered good manual therapy treatment for PGP, and that some have even been refused physio referrals or told you can only be seen once or twice even if you are not better. Some NHS trusts DO offer good treatment for PGP and the Pelvic Partnership is trying to raise awareness of this good practice to all parts of the UK, so do go and ask again for a second opinion if this is not being offered. I’d like to say that my family and I have had fantastic care from the NHS for various things, and I was able to find a great physio in my last pregnancy. However, it did rely on me making my case and using the info from the Pelvic Partnership to be able to ask for exactly what I needed, and push for a referral through midwifery.
ButterflyBitch yes it is unfair that many women end up forced to pay for treatment. We want to see manual therapy routinely offered on the NHS. I’d encourage women to keep pushing for a referral for manual therapy and to show their GP/midwife the information on our website.
As PhoenixBuchanan says private treatment will be quicker and more convenient if you can afford it. The Pelvic Partnership keeps a list of recommended practitioners who our members report have treated their PGP successfully pelvicpartnership.org.uk/recommended-practitioners/
There are a number of comments from women who are still having PGP symptoms years after giving birth (also @InACloudOfGlitter @sweetkitty @SmarmyMrMime @missnevermind @Rogue1234 @DuploRelatedInjury).
It is never too late to get treatment for your PGP. The Pelvic Partnership hears from many women who respond well to manual therapy even after years of PGP.
The charity’s website has a section on PGP following childbirth which you may find helpful pelvicpartnership.org.uk/pgp-following-pregnancy/
Please get in touch with us if you think you've tried everything and you need to talk things through.
The training is variable across the country and depends on the university’s awareness whether this is covered on physio and midwifery courses – and of course whether they just tell the students that it is all the hormones and so miss an opportunity to spread the word about manual therapy and not just putting up with the pain. Obviously this isn't that helpful for you, but if women report their experience and get the message out there to physios, we'll help to encourage more universal training about PGP.
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).
@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.
@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.
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.
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