February 19, 2008 at 6:37 pm (PGP, SPD, hospital)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, hip scan, hip ultrasound, pelvic surgery, pelvic pain relief, painkillers, new medication, analgesics, meds
Right - today’s news. I’ve just returned from 3 hours at the hospital. 1 laying down x-ray and 2 flamingoes later - “Yes, you are in a lot of pain, aren’t you?” said the consultant and his assistant as they tried to push my symphysis joint hard enough to feel what was going on. I cried. They continued at my request, but still couldn’t press hard enough to feel what they wanted to, so decided to stop as I was in tears and in danger of biting through my lip. Perhaps not the best outcome.
Anyway, the consultant, Mr. Mohanty, was very good.
He was honest about surgery - told me he’d done the operation around 20 times - half the time it works brilliantly, half the time not so well - and that means a patient could end up much worse, with a very immovable pelvis! Meaning, having more children would be difficult, and would definitely involve a c-section and would need a lot of discussion. (but, if I have another child, I knew I’d need a c-section anyway as my GP and gynae agree that it’s the only way for me, realistically… but that’s neither here nor there!)
He was not keen to operate on me. He says he has no idea why it works for some people and not others and, though he’s carried it out on people with my degree of misalignment and separation before - and those with a lot more separation - he hasn’t carried it out on someone as young as me. He said he felt very responsible for me and it must be extremely difficult to be so young and have this happening. He said he didn’t know how we managed to cope with daily life, I told him that I don’t really cope, which is true enough.
What happens next? He’s writing a referal for me to have a scan (CT? I think so) and then have anaesthetic injections into the symphysis joint under scan conditions (so they can see the exact area through the scan, presumably) and see if that helps. After that, I have to go back to see Mr. Mohanty and discuss my options, which depend on how the injections go.
So, that’s cheerful news! I’m being taken seriously and moving through the system some more.
It was gone 5:30 by the time we’d finished. We started with the x-rays at 3:30, so I’ve had a few hours of being well and truly prodded and poked!
Hurray? I think it went quite well.
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February 18, 2008 at 9:03 pm (PGP, SPD, hospital, rant)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, dsp, national health service, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, hip scan, hip ultrasound, pelvic surgery, pelvic pain relief, painkillers, new medication, analgesics, meds
Okay, so I braved not only the stairs today, but also the frosty glare of morning as I queued outside my GP’s surgery in the hopes of being seen reasonably quickly in the “No appointment needed between 8:30am and 10:30am” slot. Luckily, it worked and I was back home within an hour, for once. Much inward rejoicing was done.
The point of this exercise was to change my medication as being violently ill for days on end is not my idea of time well, or indeed happily, spent. This means that my current list of painkilling fun now is as follows:
2 x 50mg Tramadol Hydrochloride, 4 times a day,
2 x 500/10mg Co-Dydramol, 4 times a day, and
1 x 400mg Ibuprofen, 3 times a day.
I also have antidepressants (to work against the pain on my nerve endings, and also to help me fight against the pain wanting to drag me down) and the pill to take, so I rattle along quite nicely when I can bring myself to move. The ibuprofen, I must admit, are particularly stylish in their neon pink shells. It’s all a bit 1980s in my makeshift medicine cabinet.
It’s the big day (orthopaedic consultant appointment - what else?) tomorrow. I’m nervous and hopeful, but trying desperately hard not to pin all my hopes on this one man in case he doesn’t have the answer for us. It’s difficult, though. In fact, it gets increasingly difficult daily due to the fact that I just can’t shake this incessant pain and I can clearly see the day when I will not be able to face those stairs again, leaving me stranded here. Not the most cheerful prospect I’ve ever faced.
I’m tired to the depths of my poor aching bones. I feel ever so frail and weak from being so ill the last few days and my glasses, only brought out for the computer and reading when I’m tired in normal circumstances, have become a permanent feature perched upon my poor nose. What a picture I must be, laying here, swathed in a giant patchwork quilt lovingly restored by my mother and an almost equally giant weetabix-esque jumper on permanent loan from my boyfriend, with those afore-mentioned glasses adorning my paler than usual face. Ah, beauty, you come in many forms.
My man is sure to crack a smile in a few minutes when I apologise for my weariness and trudge towards our bedroom. It’s pretty certain that I’ll get at least a hug to send me on my way, so I can’t complain. I do love my cuddles.
I wish I had some hope that I will wake up tomorrow feeling a) rested, b) smiling and c) without pain. Maybe if I try ever so hard I will be able to wish myself into a smile upon awakening, but I really don’t remember the last time I felt either of the other feelings - upon waking or otherwise.
Sleep now, worry later - a new motto? Let us see.
4 Comments
February 15, 2008 at 10:51 pm (PGP, SPD, hospital, rant)
Tags: SPD, symphysis pubis dysfunction, consultant, painkillers, tramadol, codeine, paracetamol, mad mums, madmums
My painkillers have been changed this week. I was in so much pain over last weekend that I had to force myself out of the flat and to the doctor’s surgery that is happily situated about 5 minutes down the road from us. Now I get to rattle around taking:
2 x 50mg Tramadol Hydrochloride, 4 times a day,
2 x 30mg Dihydrocodeine, 3 times a day, and
2 x 500mg Paracetamol, 4 times a day.
I think it’s having the Codeine and Paracetamol separately that caused me to be sick this week. Codeine has made me be ill in the past, apparently I haven’t quite grown out of that yet, though it all seems to be calming down as I’ve managed to successfully keep both small amounts of food and drink inside my stomach today. Hurrah! I feel incredibly weak and painful, at the moment, which is less favourable news. Especially as I have a GP appointment on Monday morning and the much waited for consultant appointment on Tuesday afternoon.
I’m still gathering advice for the consultant’s appointment and the 2 best places for SPD advice that I’ve found, so far, are Mad Mums and UK Pelvic Pain/SPD/DSP - lovely people who have been/are going through long-term pelvic issues caused/made worse by pregnancy. They reply, are supportive and incredibly kind. While, obviously, it’s awful that so many women go through this agony, it is wonderful when we can join together and help each other through experiences. I’m just so touched. It might seem silly, but it’s true.
The Pelvic Partnership, upon me emailing back to say how scared I am of phonecalls, have also been incredibly kind. I really must work up the courage to phone them, as they don’t sound as scary as I had previously imagined. It would be a huge step for me.
2 Comments
February 11, 2008 at 7:55 pm (PGP, SPD, hospital)
Tags: consultant, SPD, surgery option, symphysis pubis dysfunction
Having received my confirmation letter for my February 19th appointment, I decided to use the magic of Google to look up the consultant I’m seeing. My lovely physiotherapist had told me he was “very good”, so I was hopeful. Here is what I found:
“Mr Mohanty is the only surgeon in Cardiff with a special interest in surgical treatment of pelvic conditions. He deals with acute fractures of the pelvis and hip socket and also carries out complex delayed reconstruction following trauma. Mr Mohanty has a special expertise in dealing with post- pregnancy pelvic instability and has carried out successful stabilisation procedures in women with such painful instability of pelvis following child birth.“
I’m not the only one bored of being in pain... though I must admit my NHS waiting list times have been pretty short so far!
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February 11, 2008 at 7:13 pm (PGP, SPD)
Tags: important, petition, sign now, SPD, symphysis pubis dysfunction, symphysis pubis dysfunction help, symphysis pubis dysfunction petition
“We the undersigned petition the Prime Minister to Fund research into the disabling pregnancy related conditions of Symphisis Pubis Dysfunction (SPD) and the more severe form Dyastasis Symphisis Pubis (DSP)”
If your beliefs tally with the above ones, PLEASE sign the SPD Care Government Petition. Who knows, it really could help - if not us, then perhaps our daughters.
“SPD (and DSP) affects the pelvis in early pregnancy and is related to hormonal changes. In SPD the pelvic tendons slacken too much and basically cripple the sufferer, meaning they depend on mobility aids to get around. Usually, SPD corrects itself after birth, as hormones return to normal. However, if it doesn’t it’s known as the more severe form: DSP. The sufferer then has a permanent instability in their pelvis, leading to chronic pain and limited mobility, resulting in a dependence on mobility aids. Aside from the physical issues, the condition has a psychological effect on the sufferer, leading to depression and a reliance on strong pain killers. This affects the whole family, often resulting in one partner leaving work to care for their family, which compounds the psychological issues of the sufferer. This is a massive drain on NHS resources, and there is no clear path of treatment and no known investigation into identifying the causes, preventing, or resolving the condition.”
1 Comments
February 11, 2008 at 1:59 pm (PGP, SPD, hospital, rant)
Tags: SPD, symphysis pubis dysfunction, orthopaedic, babycentre, forums, medical, appointments, consultant, worry, crawling, rolling, redhead, Pelvic partnership, email, phone
For early February, and Wales, it’s stupidly wonderful weather that we’re having. Wonderful being a totally subjective idea, of course. I’m hating it! I hurt too much to even think about going outside to frolic in the sunshine (what an image), and even if I could - I’m a redhead. I’m pale. I’m freckled. Consider. Sunshine, as a general rule, is not my friend. Ah, well, I wonder if Henry will be the same way? Who knows.
Henry’s learnt to roll, and will happily roll from one end of the room to another. He pivots as his way of changing direction. Quite clever really. Every 5 minutes or so he needs to be put on a different side of the room so he a)doesn’t hit anything and b) doesn’t get bored and upset. He likes to watch television in crawling position, we keep watching him closely and wondering if he will in fact crawl, or skip it altogether and keep on rolling. After all, rolling over musical toys is a fun and easy way to get them to play songs to you, isn’t it? Button pressing’s fun too, and a new skill he’s mastered, but I don’t think it’s quite as fun for him!
So, fun things this week - ummm… for once, I don’t actually think that I’ve got any medical appointments! The shock, the horror. Next week, however, is the big orthopaedic consultant appointment! I’m attempting to gather information from the good people on the babycentre forums , the babyworld forums and the madmums forums about what I should ask about - so I hope that they’ll have some ideas!
I contacted the Pelvic Partnership by email, as I don’t feel very comfortable talking about my personal details by phone - in person or by writing suits me far more. The good news - I got a reply very quickly, within 2 working days. The bad news, “…Sadly I have very little experience with ’surgery’ but my colleague Sarah our chair has much more knowledge and experience. You can call and leave a message on her number… she will call you back as soon as she can.” I guess I won’t be getting any help then.
Philippa, who was the woman who took the time to reply to me, sent a lovely email, it just wasn’t very helpful for me personally.
I’ll keep plugging away, hoping for the best, though. It’s all I seem to do. Slightly depressing but what else is there? Oh yes, enjoying life. Hard to do around a strict, seemingly endless, medication timetable, but possible. I love my boyfriend and our son and I know I’m lucky to have them, it’s just unfortunate that all this pain goes with something that should have been such a natural process!
1 Comments
February 8, 2008 at 7:34 pm (PGP, SPD, conversation)
Tags: bollocks, boyfriend, conversation, dsp, my role in life, pain, pelvic girdle pain, PGP, post natal pgp, post natal spd, postnatal pelvic pain, shining light, SPD, symphysis pubis dysfunction
I love my Welshman. Here’s a snippet from the wonderful world of our conversations:
“I’m starting a new blog about my SPD.”
“Is it still called SPD, what you’ve got?”
“Well, that’s the only thing I’ve ever had it named as, so I’ll stick to it until I hear different.”
“Fair enough. You can be the major source of depression for all expectant mothers out there who have SPD.”
“Oh…”
“You can be the shining ball of light that says, when people tell them it’ll all go after birth, BOLLOCKS!”
“Yes. That’ll be me.”
Should I be proud?
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February 8, 2008 at 7:27 pm (PGP, SPD, birth, hospital, rant)
Tags: SPD, PGP, symphysis pubis dysfunction, pelvic girdle pain, birth, sacroiliac pain, ptsd, hospital, nhs, midwives, physio, physiotherapy, women's health physiotherapist, dsp, traumatic birth, national health service, august 2007, babies, baby, rant, chronic pain, post traumatic stress disorder, post natal depression, pnd, postnatal depression, depression, referal, orthopaedic, orthopaedic surgeon, hip scan, ultrasound, hip ultrasound, pelvic surgery, pelvic pain relief
I was diagnosed with SPD in week 26 of my pregnancy (last June) after 2 hospitalisations for severe pain. I was told, after the 1st one, that it was a water infection, given painkillers and sent on my way. As soon as the painkillers ran out, I was in more agony than before and went back to hospital. I finally was seen by a doctor who pushed on my pelvis once, asked if it hurt while I screamed and diagnosed me with SPD. I stayed in hospital for a week, saw a women’s health physiotherapist, was given a pelvic support belt and crutches (due to the severity) and told to come back to be properly assessed.
At the assessment, I was booked in for hydrotherapy each week until delivery, given a TENs machine for pain relief as well as cocodamol and tramadol. I went faithfully to hydrotherapy, but the pain just got worse, despite the TENs and analgesics.
I went into hospital the day I was 38 weeks to be induced. It didn’t work. The delivery suites were so full they had to stop inductions while I was there. After 4 days I was told that those pains I’d been experiencing regularly for the last 36 hours were, in fact, early labour and, after hooking me up to that machine that looks at heartbeat and contractions, they said I was in established labour. I had been for some time, but the midwife changeover had put me aside (it was late August, they were even more understaffed than usual as many were on holiday).
I was taken up to the delivery suite with my fiancé at midnight, 10cm dilated, and my son was born 13 hours, 2 epidurals (1 failed entirely), major episiotomy and multiple tears later. The delivery room was full, with surgeons prepping themselves to do something or other as I was at the last push. I later realized this was because my son was completely blue with the cord wrapped tightly around his neck. He had been stuck in my pelvis for some time, as his head was far too large for me, really.
“I can’t get it off, can you try?” is not what you want to hear from the midwife passing your newborn, dead looking child with cord wrapped around his neck, to another midwife. Luckily, my 7lb 4oz at birth son, Henry, is fine.
Anyway, I won’t go into anymore of the delivery horrifyingness. I spent about 10 hours in stirrups, though, which is not the best thing for my SPD, to say the least. My stitches had just healed in January when I had a gynae consultant appointment to check on their progress. I was told referred and remembered pains were the only problems, gynaecologically.
I’ve since had an x-ray of my pelvis, which shows lots of “wear and tear” on my symphysis pubis bones, as well as misalignment and a worrying gap. My physiotherapist showed me the x-ray at today’s appointment and was shocked that I’d been lying down during the x-ray, as the joint looked under the kind of stress you’d expect from the “flamingo x-ray pose” – she demonstrated by standing on one leg, the other bent up and touching the weight bearing leg’s knee. As if I could do that, anyway.
I work on my core stabilisation exercises daily, I take my tramadol and paracetamol faithfully, and still I’m in agony, worse than in pregnancy. The only thing worse than this daily, excruciating pain, was my son being stuck in my pelvis during labour and trying to push him out. Luckily, I’ve finally got my Orthopaedic consultant appointment booked for February 19th, and a hip ultrasound for March 7th - it’s nice to know that an urgent referal from last October has finally made it through the system! Will I be offered surgery and/or painkilling injections like my wonderful physio hopes? Who knows.
Having seen my x-ray, I know I’m not complaining about nothing! I’m still relying on crutches and muddling through the day, hoping for better things. I also apparently have postnatal depression, though how much that has to do with the fact that I’m bored and emotionally drained by being in so much pain I can’t do the lovely things I want to do, like play with my son, I wouldn’t like to guess.
So that’s me. Nice to meet you.
2 Comments
