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MumsnetGuestPosts (MNHQ) Mon 18-Feb-19 11:09:45

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.

Laura Smith

Pelvic Partnership

Posted on: Mon 18-Feb-19 11:09:44

(69 comments )

Lead photo

PGP affects one in five pregnant women, and makes it hard to do everyday tasks, like sitting, standing, climbing stairs, turning over in bed or walking.

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

Twitter: @PP_PGP_charity

BrendaUrie Mon 18-Feb-19 13:50:07

I'd PGP the same as SPD?

BrendaUrie Mon 18-Feb-19 13:50:16

Is*

littlecabbage Mon 18-Feb-19 13:53:22

BrendaUrie

Yes, it is.

Sleepthiefsmum18 Mon 18-Feb-19 13:57:01

Thanks for this. I’m currently experiencing symptoms 16 weeks after birth. I know I need to see a physio and I’ve identified one, it’s just finding the time with a baby and toddler to look after. I’d been hoping it would go away, but this has prompted me as I don’t want to still be suffering in a few years time!

ButterflyBitch Mon 18-Feb-19 14:39:15

I had this with both pregnancies but worse with my first. The physio referral wasn’t put through as urgent so I ended up with one of the tubi grip style things which did sweet fa to help by the time I was seen. I ended up barely able to walk by the end. Couldn’t wait to go into labour. It stuck around for 3 months after though until I saw an osteopath who sorted me out in three sessions.
Second pregnancy I saw a osteo as soon as the pain started so it didn’t get so bad. But if you can’t afford to pay osteo prices what do you do?

BrendaUrie Mon 18-Feb-19 15:40:18

Oh it's horrible.

With my daughter I was on crutches from 14 weeks.

My husband had to tie my thighs and hips together at night so I could sleep. It was really awful.

keepingbees Mon 18-Feb-19 15:58:43

I had a terrible pain from about 20 weeks, but it was in the back joint where my thigh went into my hip if that makes sense. It was so severe I could hardly walk and I couldn't drive as I couldn't lift my foot to do the pedals. I had to go upstairs sideways very slowly. My husband had to swivel me in and out of bed, I couldn't part my legs or lie flat at all.
My midwife refused to refer me for physio as she said by the time the referral came through I would've had the baby. Labour ward advised constant paracetamol, which I wasn't happy to do for months on end, and warm baths which was impossible as I couldn't get in or out of the bath. I was just left housebound in agony, baby was also measuring very large too, and they left me to go 10 days overdue unable to move. I never understood why others got crutches and help which I was refused.
Years on I still struggle with that hip, I still can't lay flat on my back and it hurts if I exercise. My knee on that side is also painful which I think is connected.

Spudlet Mon 18-Feb-19 16:38:58

I remember sobbing down the phone to a physio at the hospital, begging them to fit me in. They couldn't. They were a specialist team but they were so oversubscribed I only saw someone once throughout my pregnancy - ironically I saw much more of them afterwards! It's a definite factor in my decision to stop at one child. My midwife was sympathetic but also said that she'd always thought women with PGP were making an unnecessary fuss until she had it herself in her third pregnancy - it's appalling that this is seemingly not covered in training.

I saw an osteopath once but she worked on horses as well as people and was quite, erm, firm - put me right off. I saw a different, much gentler osteopath afterwards but I couldn't afford more than a couple of sessions.

I've realised I haven't put a question here because I don't know if Laura will be able to answer but I do think that healthcare staff need better training - and more resources are needed as well for specialist physios and other treatment. Physio made a massive difference to me, but I needed far more than I got!

gluteustothemaximus Mon 18-Feb-19 18:43:33

Absolute agony. With all 3 pregnancies. Was pretty much housebound unless I wanted to walk about with crutches. If I did want to get out, the pain that followed that night was horrendous. So I stayed indoors. Isolating. No one understands. Pregnancy isn't an illness after all hmm

PhoenixBuchanan Mon 18-Feb-19 18:49:46

Pelvic Partnership is an amazing organisation. As they say, the key is manual therapy! Waiting lists are so long on the NHS though, and it is a problem that needs immediate attention. I'd strongly urge women who can afford to do so to go to an osteo or chiro in private practice. I got so much relief from chiropractic treatment.

InACloudOfGlitter Mon 18-Feb-19 20:12:35

I've never heard of this organisation but wish I had throughout my pregnancies. The pain of labour I have almost completely forgotten about, but pgp is still fresh. My youngest child is three this year and I still have pelvic pain ranging from mild discomfort to severe pain depending on how much I have done that day.

LivininaBox Mon 18-Feb-19 21:28:35

I had a number of appointments with NHS physios during my first pregnancy for PGP, all they did was give me a few leaflets and some advice about how to get in and out of bed etc. I could have had that from my midwife. How about the NHS pays its physios to do some, you know, physio?

LyndzB Mon 18-Feb-19 21:44:07

I had this from about 22 weeks. Towards the end of my pregnancy I had to use a wheelchair. Told my midwife but she said there was nothing that could be done and it would clear up after the birth. She was right it did clear up but spending 4 months in real pain with no support was really difficult.

IVEgottheDECAF Mon 18-Feb-19 21:56:58

10+5 with dc #5 and already suffering with spd/pgp sad

Popskipiekin Mon 18-Feb-19 22:26:03

SPD is awful. Heavily pregnant and on crutches, only able to get to work in a taxi, barely able to walk to the loo, I cried every time I turned over in bed it was that sore, and I couldn’t get up from a horizontal position without being in utter agony. And I was one of the luckier ones. It came on late in my first pregnancy, had all but disappeared within 6 weeks of birth, and I didn’t have it at all second time around. Grateful to organisations like the Pelvic Partnership for all the good work they do. And commiserations to other ladies who go through this multiple times and from far earlier a stage than I had it.

vivariumvivariumsvivaria Mon 18-Feb-19 22:54:37

Physio is amazing. That is all I have to say <limps>

sweetkitty Mon 18-Feb-19 22:58:36

Still suffer almost 10 years on

Geoxxx Tue 19-Feb-19 00:16:19

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

SmarmyMrMime Tue 19-Feb-19 00:17:30

With hindsight, I was affected from around 18wks in my first pregnancy. I ended up pretty much housebound unless someone could ferry me door to door. At 34 weeks I went to the GP after my final trip to the supermarket where I could no longer stand the pain without crying and it was dismissed as pregnancy aches and pains. Being sedentary lead to Carpal Tunnel too and I woke hourly in agony from numb limbs and reactivating them through pins and needles before painfully heaving my body over. Having a newborn baby that indulged me with 2 hour blocks of sleep was bliss!

Second time was better. I'd found out a lot more so had much better self care strategies. It set in a few weeks later and I remember walking around town feeling my hips tightening up and seizing until I couldn't move. I borrowed some crutches in the last couple of months and they kept me moving. I did get some NHS help but it was too little, too late to be real use.

It carried on postnatally, exacerbated by a nasty tear. I was housebound for a month between the SPD and birth injury and some days had to crawl upstairs. I ended up going to an osteopath after 3 months when I still physically couldn't walk uphill as there wasn't enough mobility in one hip. The osteopath made a massive difference. Years later and I still can't do much digging in the garden as I get aches and shooting pains as I push my foot into the spade.

It is a vile condition, so restrictive, relentlessly painful, misunderstood and under-identified.

MovingThisYearDefinitely Tue 19-Feb-19 01:05:46

I had this. Nasty condition. Not comparable in any way to labour though. OP is ridiculous to suggest labour is preferable unless they have it easy! hmm

Rogue1234 Tue 19-Feb-19 07:03:09

I developed PGP at about 9 weeks, and was on crutches from 16. DS is now 1 and I still suffer with sore back and hips if I do too much.

I tore badly during labour and was repaired in theatre, and I'd still rather go through labour again than pregnancy!

missnevermind Tue 19-Feb-19 07:14:03

I had this with my last 2 pregnancies. The babies are now 7 and 10. I still walk with a stick and cannot walk far without having to stop and do internal stretches to ‘unwind’ my hip.
I had an emergency csection with my youngest and the next day I was up and trotting round the ward telling everybody how fantastic it was not to be in pain anymore.

RockyRocky Tue 19-Feb-19 07:34:21

SPD/PGP is a horrendous condition, which unfortunately it not taken seriously by the NHS. I was on crutches from 34 weeks, the physio just gave me a bump band and print offs of some exercises (I had 3 sessions, no examination, no manual therapy). Labour pains were nothing compared to it. My pain relief for birth was just water. Pain relief for SPD- TENs machine, codeine, naproxen, plus private Physio/ osteopath at £400 month. Which hardly touches it. I've had to send my eldest to nursery, as I couldn't cope with baby and toddler while in this pain. I had a scan last month and have another due next month- this is after a year of constant nagging the doctors. I wish giving birth got rid of the pain!

DuploRelatedInjury Tue 19-Feb-19 07:42:45

@MovingThisYearDefinitely yes but labour is a relatively short process in comparison to months of constant pain. I didn't even realise I was in labour until close to pushing with my first because the pains just didn't register above my SPD pain.

My youngest is 18 months and I still get pain. I still have to sleep with my maternity pillow on my side, can't lie on my back comfortably. My physio referral in my first pregnancy took over 12 weeks. I had to go on leave much earlier than planned as I couldn't handle the journey. In my second (new area) I was told they didn't refer to physio.

IVEgottheDECAF Tue 19-Feb-19 08:04:55

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

PartridgeJoan Tue 19-Feb-19 08:36:20

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.

Thisimmortalcurl Tue 19-Feb-19 09:03:22

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.

Spudlet Tue 19-Feb-19 09:07:14

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.

TheFairyCaravan Tue 19-Feb-19 09:14:35

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.

Thisimmortalcurl Tue 19-Feb-19 10:33:59

Oh my goodness @Thefairycaravan .. that makes mine seem like an absolute walk in the park. I really hope you get the best treatment possible.

LivininaBox Tue 19-Feb-19 12:08:50

@definitelymovingthisyear I absolutely agree that PGP is worse than labour. In labour you have pain relief available and a team of people supporting you. Noone is expecting you to look after a newborn baby while in labour, or cook a meal, or do the laundry. There were times I wished I could die in my sleep so I didn't have to face the pain of getting up to my baby again in the night. I never felt like that during labour.

Hugtheduggee Tue 19-Feb-19 12:59:53

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.

squeezysparklyballs Tue 19-Feb-19 14:31:55

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.

spaniorita Tue 19-Feb-19 14:33:09

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'.

cookiewuk Tue 19-Feb-19 19:04:02

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??

toffeeghirlinatwirl Wed 20-Feb-19 00:03:10

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.

flamingnoravera Wed 20-Feb-19 15:48:25

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.

45andahalf Wed 20-Feb-19 16:54:40

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 flowers. 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.

45andahalf Wed 20-Feb-19 16:59:12

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.

oldsilver Wed 20-Feb-19 18:16:49

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.

LauraSmithPP Wed 20-Feb-19 19:56:29

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.

LauraSmithPP Wed 20-Feb-19 19:58:41

Hello @butterlybitch

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/

LauraSmithPP Wed 20-Feb-19 20:04:01

Hello @keepingbees!

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.

LauraSmithPP Wed 20-Feb-19 20:07:36

Hello @spudlet

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.

LauraSmithPP Wed 20-Feb-19 20:10:01

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).

LauraSmithPP Wed 20-Feb-19 20:12:54

Hello @movingthisyeardefinitely I agree, I would not (and did not) compare the pain of PGP to labour. Every woman’s labour experience is different, as is every woman’s response to pain, exhaustion, intervention etc. I wouldn’t begin to draw comparisons when I can only speak for myself. I was trying to say that I was so desperate for the constant PGP pain to end that I wanted ANYTHING to make it stop – even going through labour. My own labour brought me a whole different kind of pain, which I won’t go into now, but as @Thisimmortalcurl and @spudlet mentioned, it was short-lived (relative to PGP) and did result in an end to the PGP pain (and of course my lovely baby boy!). Sadly not all women find that PGP symptoms end after birth, so it's important to get treatment at this stage if things are still bad for you.

LauraSmithPP Wed 20-Feb-19 20:13:32

@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.

LauraSmithPP Wed 20-Feb-19 20:14:19

@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.

LauraSmithPP Wed 20-Feb-19 20:16:22

Hello @Hugtheduggee
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.

@Gluteoustothemaximus @PartridgeJoan and @LivininaBox you have clearly also been through some difficult times mentally and emotionally while dealing with PGP. I hope you are feeling better now and really pleased @PartridgeJoan that the Pelvic Partnership was able to help you.

LauraSmithPP Wed 20-Feb-19 20:17:40

@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.

LauraSmithPP Wed 20-Feb-19 20:18:35

@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.

LauraSmithPP Wed 20-Feb-19 20:21:37

@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.

LauraSmithPP Wed 20-Feb-19 20:24:10

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/

LauraSmithPP Wed 20-Feb-19 20:28:57

Hello @Spaniorita
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/

LauraSmithPP Wed 20-Feb-19 20:35:26

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.

LauraSmithPP Wed 20-Feb-19 20:39:02

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!

FionaFreesia Wed 20-Feb-19 20:40:53

If you had one piece of advice to give someone with PGP, what would it be?

LauraSmithPP Wed 20-Feb-19 20:43:22

Hi @FionaFreesia - good question! I would say - persist, persist, persist until you get manual therapy!

WutheringBites Wed 20-Feb-19 20:45:28

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?

WutheringBites Wed 20-Feb-19 20:46:51

Oh and I still get it now, despite manual therapy and littlest one is 3. 😰

FionaFreesia Wed 20-Feb-19 20:47:28

Hi Laura,
Do you think it's worth asking my doctor for an x-ray?

LauraSmithPP Wed 20-Feb-19 20:51:22

Hello @wutheringbites

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.

LauraSmithPP Wed 20-Feb-19 20:53:25

@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.

LauraSmithPP Wed 20-Feb-19 20:57:42

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/

Thisimmortalcurl Wed 20-Feb-19 20:58:05

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 .

WutheringBites Wed 20-Feb-19 21:30:13

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!!!

Popskipiekin Wed 20-Feb-19 23:16:50

Thanks Laura. I have donated. Best of luck and hope pelvic partnership goes from strength to strength.

LauraSmithPP Thu 21-Feb-19 09:03:43

@Popskipiekin Thank you so much!

LauraSmithPP Thu 21-Feb-19 09:04:50

@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!

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