Undermined, patronised, dismissed

[doadeer]

I feel really upset about a hospital appointment today, and I just feel the need to vent at what I hope will be a sympathetic board.

I had an awful pregnancy 2 years ago, lots of scares followed by the most horrendous pelvic pain which resulted in me being practically house bound as I couldn't get back up the stairs. It was truly miserable. Pre pregnancy I exercised daily... By 20 weeks I couldn't walk without pain. I was of you who have lived with daily pain, will know how absolutely debilitating and demoralising it is.

Fast forward to the present, despite what I would say has been £1000 spent on osteopaths, physios, Pilates, and all manner of specialists to try and help me be able to walk in 30 minutes without pain, I'm still in a sorry state. I'm only 30... I can't bear for this to be my reality forever.

I had a call with physio today, in order to determine which type of scan I should have. from the onset, he put me down, patronised and diminished everything I was saying. He told me it wasn't as if my body had suffered a trauma so I should be fine. Only a man would say this. Many many women suffer what can only be described as trauma in pregnancy or childbirth.

I felt so angry and frustrated, I burst into tears after the call, which I never do.

Can anyone relate?

Thank you @wagtailred that gives me some hope! Did you have a procedure?

I can walk for 20mins ish before noticeable pain... Walking up stairs still makes me gasp sometimes. I'm only 30 😢 I can't give up and accept this is me. Pre pregnancy I was about to train as a yoga teacher I could do the splits.... The contrast is unreal.

Wow @snowinapriltime.

I'm absolutely incensed for you. I can't imagine how angry you must have felt "calm down dear" and "hysterical women" come to mind!

Today on the video he asked me why I mentioned alignment and did I understand what a neutral pelvis was - he actually said where did I hear those terms! My family have a yoga business, I talk about body movement every single day and it's a huge part of my life.

doadeer i didnt have the surgery i was considered for. Basically the risk of complications was very high as its near bowel and bladder and there was a risk of being left with nerve damage. Then the consultant said it only relieved pain for about 50% of people but it did help stability. I was more bothered about the pain than stability so didnt think it was worth the risks for me.

It did just slowly improve over time.

I'm sorry you have had such a bad experience when you have been through so much and were hoping for some help.
I just want to say that 'trauma' in the sense of musculoskeletal injuries has a specific meaning - the specialty of Trauma and Orthopaedics for eg, the trauma refers to sudden bony injuries like fractures etc.
This doesn't excuse what the physio said to you, as anyone with any understanding or respect for the process of what women go through carryng and birthing their children wouldn't say that, especially as I assume they knew your history of chronic and debilitating pain. Also injuries that would be classified as 'trauma' such as pelvic fractures are often sustained during childbirth but not diagnosed. So he's wrong on both counts.
I'm not trying to defend him at all, I just think he was possibly working under a different definition of trauma when he said that. That in itself is also a problem with the patriarchal nature and language of Western medicine that doesn't have the scope to acknowledge the lived experience of those it hasn't been designed for (mainly women).
Good luck with your MRI and the rest of the process and I hope you find someone more helpful and understanding and that you get some relief from your pain. It sounds like you are doing so well to be able to do what you do and look after your toddler.

[quote doadeer]@ScrimpshawTheSecond I'm glad you found relief - it seems to depend so much on who you get. Pot luck!

@BettyFilous people who haven't had it just can't understand how debilitating it is. I've got a fantastic pilates instructor who is physio trained I do 1 to 1 with her and she advised I need a scan because she think there's something wrong. I honestly don't see how I could have another baby at the moment - I would be a mess. I'm so glad you found someone sympathetic and your experience second time was slightly less awful! How are you now? How many years on? [/quote]
The second pregnancy was easier, for two reasons I think:

1. I asked for physio early and went to all the hydrotherapy and physio appointments I was entitled to (instead of prioritising work )
2. I recognised how debilitating the pain would be if I tried to ‘push through’ and continue with normal activities, as I did first time. It meant being firm with my toddler (walk or pushchair, no carrying) and DH. After a certain point DH gave a lift to work, where I’d struggled on with buses and walking first time until I was in crippling pain.

However, I don’t think my symptoms were as bad as yours by the sound of things. I had to take the stairs slowly sideways on, but I could still get up and down them.

My youngest is 12. I used to get a flare up in the week before my period, when it hurt to walk for a few days. It is much better now and only occasional twinges.

I'm sorry you were treated so badly. I hope if you can find the energy to complain (and understandably, not everyone does) you get some satisfaction. Like others, I've experienced similar pain from spd (2 pregnancies and c sections). Mine unfortunately got worse after the birth of my second. It's stable and managed now but will always be there. The main things I've been told are "well at least your baby is ok" and "it may improve after menopause".

@Broomfondle that's a really good point thanks for explaining that all makes sense. Yes I think the term "trauma" is very charged but he was correct I didn't fall down the stairs or have a car accident.

@MotherForkinShirtBalls it's become normalised that women should experience pain post pregnancy and birth, as long as your child is OK you shouldn't complain. As if the two go hand in hand!

I often have family members keep asking me what's wrong with me... They can't believe I'm still having this and I haven't been miraculously healed.

Gotta say, I am hoping menopause sees off the niggles for good.

Out of interest, do you have hypermobility? I asked my physio about it as we have lots of hypermobility in my family though I am less bendy that most of my family.

@BettyFilous

Gotta say, I am hoping menopause sees off the niggles for good.

Out of interest, do you have hypermobility? I asked my physio about it as we have lots of hypermobility in my family though I am less bendy that most of my family.

Yes I do through some joints. I have super open hips - I could sit in lotus position or butterfly for a long time. I have hyermobility in wrists too. I don't have through knees or elbows.

Part of the reason I had such bad SPD was my joints were open but my muscles were weak because I spent so much time stretching in yoga and not enough time strengthening!

Thank you Doadeer

Hugs to you OP. I have, sadly, experienced the broad side of a misogynistic medical establishment during pregnancy and childbirth. The worst is that you are in a fragile state and unable to 'fight back' in the same way as when you are at the heights of health. Please believe me, though, that at your age anything is possible. You can move forwards, with or without the pain, with the right support and the right headspace. Good luck.

@snowinapriltime

Can I add one little story.

I have a hereditary condition and needed to be get young child tested for it because it is hereditary.

I think I may have been too knowledgable for the GP's good - he tried to say my son did not need to be tested - I politely put forward my case, explained the reasons, but in the end needed a letter from my consultant to say yes snow's child needs the test.

On the test form for the hospital the reason for the test was noted as "severe maternal anxiety" I am one of the most chilled out people you can ever meet my husband and I laughed but I still thought what a load of sexist Bull shit.

I have had this with our youngest... when requesting a test for a genetic condition (dh has the condition so will definitely pass on one copy of the gene) a paediatrician In a different hospital had requested this for our eldest when she was born. The Gp referred us in to paediatric phlebotomists, but then when result came back equivocal she was all funny with me “who told you to do this test, it’s only slightly out of the reference range, id just wait and see etc” if we did just wait and see the next thing we might see is acute organ failure so I’m not happy with that, but she made me feel like I’m munchausens or something.... maybe they’re all Covid stressed and being less kind than usual?

Oh, I’d also second that my SPD was better second time as I was more careful earlier and got a (nice) physio referral. I have very mobile joints from childhood gymnastics and a standing up job with lots of lifting, pushing and stooping which I think made it lots worse.

Just out of interest, someone mentioned the struggling to walk when carrying something... I still occasionally feel like my legs might give way and have to lean against a wall, usually when carrying something above my waist... is that a post-pregnancy thing?

Interesting those saying SPD got better second time. I was cheerfully told by multiple midwives it would get worse 🙄

Mine kicked in at 19 weeks when I was doing a standing balance in yoga. By 29 weeks I was struggling to walk. It was the most crazy thing.

I think I may have been too knowledgable for the GP

There are some medics who take a knowledgeable patient as an affront. They prefer to operate within a strict hierarchy of 'doctor instructs, patient acquiesces', and will deliberately, actively and aggressively undermine a patient who is too involved/informed.

I'm sure precisely nobody would be surprised if I said this plays out most often within a male HCP/female patient scenario.

@doadeer I am so sorry you have had such a bad experience with your physio. I hope you get better care soon.

I'm not sure if you might have heard of www.careopinion.org.uk ? Some NHS Trusts/services pay attention to feedback they get there, particularly since it is public and searchable. (You can see services' responses to feedback, too).

Also @KimThomas - the Birth Trauma Association is fantastic - thank you (and to your colleagues) for doing what you do! :)

What an arsehole. Pregnancy can really fuck you up.

@doadeer
I could have written your post. We have very similar stories. Also suffered from SPD/ PGP for 2.5 years. Ive been dismissed, offered counselling, offered pain killers, told the pain was in my head- that it couldn't possibly have lasted this long, been told it's "just your hormones". I had 1 NHS physio lecture me on the theory of chronic pain over 2 sessions instead of actually treating me. I've seen a few physios and osteopaths privately, and they can tell which areas hurt just by touching me, so I know it's not in my head. I have managed to have 1 scan, showing an inflammation of my sacrum- this was through the rheumatologist. I've made complaints to PALs and CCG, but havnt got far. On many occasions I have felt completely dismissed, and I'm sure that if a man had gone in with the same levels of pain, so much more would have been done to support him.

@RockyRocky that's terrible what an awful time you've had. Where are you at now?

My normal physio is so mad she wrote this great blog rlsportstherapy.com/?page_id=306

I'm paying privately at the moment. Which I can't really afford to do (I had to leave my well paying job, as I couldn't physically do it, and get an sitting down office job).

Lockdown really set me back. Looking after 2 small energetic children has brought out the main more so. Before lockdown, I had found hydrotherapy worked, but pools here are all still closed. My latest physio has a long waiting list, so only able to see her every 3-4 weeks.

I think people in general are quite dismissive of it (not just healthcare workers). I've had so many people say, "I had a bad back when pregnant" or "yes, my legs were a bit achy and I had to sit down lots". This is completely different! Sometimes my legs just don't hold me up! While pregnant and struggling, I had my boss continually say to me that pregnancy is not an illness, and I stupidly just pushed through the pain

I basically diagnosed my own ectopic pregnancy years ago, with a male GP folding his arms and ordering me out of his consulting room because I asked him to order a scan to determine it. I chose to travel hours the next day and pay for a private scan. Then my GP practice couldn't do enough to help!

Left to them and their attitudes I might have lost my life.

Thanks, Deer, my blood test showed hemoglobin of 5 (should be around 12), another doctor called me in the next day, i had a hysterectomy and felt not like a new woman, but like about 3 new women once i had recovered from the op.
It can be done! I hope you are listened to soon

Oh @RockyRocky that's beyond debilitating. Where is your pain now? I've become an expert on exercises if you need any advice though fitting it in with two children is far the greater challenge.

There is definitely the attitude that some pain in pregnancy is normal, people expect that it will just disappear but when you have had a condition like ours but all of the muscles, the joints, ligaments and tendons are all inflamed and angry they do not go back to normal. We just learn to live with pain.

OP, I'm so sorry, I can sympathise so much. Had SPD and a traumatic birth where I was yanked into stirrups and my legs forced apart (i kept telling them to stop and that I had spd but they ignored me). I remember hearing my pelvic bones grind together in this really sickening way.

I went from distance running pre pregnancy to barely being able to climb the stairs for about 9-10 months post partum. Everyone kept telling me "nono, spd is caused by relaxin so it goes away right after you give birth" but it really didn't.

I went to my GP who rolled his eyes at me. I explained that it was agony for me to even go to the shops and he said "Are you sure you're not just staying ay home because you're a bit depressed?"

I managed to get physio on the nhs, with a lot of pushing. In my case, luckily it did help and I'm back to normal again two years out (but now pregnant again and really scared of this happening again).

Sorry, I don't know what to say but you're not alone.