How wonderful - there’s a new Pelvic Girdle Pain charity on the block! It’s specifically set up for sufferers living in Scotland but the fact that more people are clamouring against the tide of government/health policies and trying to bring Pelvic Girdle Pain into mainstream medicine can only be brilliant news for everyone affected by this debilitating state.

It’s not just your pelvis that gets weakened by this, but also your relationships with friends and family, your sense of independence, your identity as a woman, mother and person, and your grip on reality. Pelvic Girdle Pain should be a household name in that everyone should be made aware of the possibility of it and the full effect that it could play out in your world. When I was diagnosed with it - medical professionals were so surprised that someone so young, so fit looking, in otherwise good health, should get SPD in a first pregnancy and I was told pretty definitely that within 3 months of the birth it would be vanishing into as much of a memory as the birth would be.

Pelvic Instability Network Scotland (PINS) has inspired me to compile this list of SPD/PGP/DSP websites that I have found useful: if there are other informative and helpful places on the web to visit that you know of, please leave a comment as I will be adding to this list often.

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Pelvic Partnership - The only other UK charity in this area that I am aware of. The website doesn’t give a lot of information as regards chronic (read: post-partum) pain. Well, no more information than common sense and a visit to a GP who has more than vaguely heard of the condition will give. The group of dedicated volunteers with personal experience of Pelvic Girdle Pain keep a helpline going, they also have “a number of e-mail contacts that will direct you to the person who can help” .

I’ve not yet used the helpline, but I did try to get help via email a while back and it’s pretty obvious that they prefer to give advice over the phone. Fair enough for some, I know, but I spend a lot of time talking talking TALKING about my condition with my GP, fiance, Mum…. the list goes on, it would’ve made a pleasant change to be able to write it down and get a written answer I could refer back to, perhaps print out and keep with me when I go to medical appointments etc.

UK Pelvic Pain/SPD/DSP is the single best resource that I have found for post-partum sufferers. This appears to be where those women in it for the long haul hang out, finger tips poised above keys, ready to pass on their struggles and knowledge of the medical world and procedures it offers. It’s a veritable hive of information. Though it is not the busiest place, I think it is the emailed conversations behind the scenes that give the most information and reassurance. I can’t recommend it highly enough.

The Delphi Forum set-up takes some getting used to, it is unlike most other forums I have seen and makes me wonder why that format was chosen (as opposed to the easier to navigate versions you can create). I can only assume that it is from the “old days” of the internet and asking members to update their url bookmarks to a clearer discussion board is too much trouble. If it ain’t broke, and all that.

Obviously two websites does not an exhaustive list make, but the evening grows late and the heat grows stifling so I should probably take this opportunity to either a) catch up on the soaps, b) give my love some attention or, as ever, c) sleep. Decisions, decisions…. !

I’m so insane. There’s no chance I’m going to be well enough to get a job in the near future. I don’t know what’s up with me. I just seem to need to be able to visualise a “normal” life for myself when I’m feeling one kind of low to make carrying on worthwhile. Looking/reading back with a slightly clearer head, I see the insanity.

I’ve been working on the Disability Living Allowance form today, went to see my GP this morning and she actually suggested I give it a try as she is fully supportive of my needs.

I’m becoming a recluse. I guess I should be spending my time trying to find a 2 bedroomed house or ground floor flat in Cardiff that accepts DSS so I can stop being imprisoned by the 40 odd stairs leading up to this flat.

More often than not, I just want to curl up and get into a pit and forget about all the pain. I only seem to wake up for my beautiful little boy and Michael. Is this what motherhood is?

My, oh my, it has been a while: my apologies for anyone who has noted my absence with regret.

Happily, I don’t seem to be any worse, though it’s true that I’ve not seen my GP for a while. I do plan on seeing her tomorrow, however, as I need a to clear some kinks out of my current prescription. The postnatal depression is still there, even with the antidepressants, as is the pelvic and hip pain. Oh yes, the pain is very much still present and a daily reminder of the “miracle of childbirth”.

MRI scan and injection both on May 23rd, should be a fun day at the hospital! The MRI letter cautioned me against mascara - I wonder if men are also lucky enough to have this addition?!

Henry now spends all day pulling himself up to stand against anything he can get a grip of, including his Mummy and Daddy’s unsuspecting legs. He also enjoys walking from place to place if his hands are held for support. We’re very proud of him - he’s just 8 months old!

Speaking of Daddy’s limbs, Michael has broken his scaphoid in his right hand and has been plastered. He fell down our stairs. We alerted the landlord months ago to the fact the light on our landing doesn’t work and it was quite dangerous. Maybe we should have been even more vocal about it?

As it was sunny last week, our little family surfaced and winced our way into Cardiff city centre - the sun had also brought out a gaggle of Michael’s friends and I hope I wasn’t as quiet and terrified as I usually am when faced with… well… anyone, really. Especially male anyones.

I’ve started hunting for a mostly sitting down job, something along the lines of call-centre/receptionist as I can type 60 words per minute and have a clear, cheerful voice. Perhaps it’s all a bit optimistic but I’m rather banking on this treatment on the 23rd changing my life for the better.

See - that all came off a lot more joyous than I actually feel! I guess that’s a good thing. That’s what I get for being informative.

My options are running out. My lovely GP keeps offering me morphine and I keep turning her down, but it’s starting to get ridiculous. I don’t know how much longer I can realistically cope with pain like this, let alone the mind-numbing lack of mobility.

Obviously the upcoming injection is something to keep hopeful about - but the prospect of 2 more months in agony is less exciting.

Rejoice with me now…1, 2, 3 - REJOICE!

The good news is  that I have an appointment for my anaesthetic injection into the symphysis pubis “joint” - the slightly bad news is that it isn’t until May 23rd.

However, I’m focusing more on the fact that the appointment exists and fills me with the delightful taste of a hope that things may start to get better for myself and my little family, than the fact that the appointment is…oh, almost 9 weeks away.

So, at 3:15pm on Friday 23rd May, you’ll know that I’ll be in the hospital hoping for the answer to my prayers!

In other, wonderful, news - baby Henry can now say “Dada”, “Dad” and “Hiya!!”. Sometimes, in special fits of enthusiasm, we even get treated to “Hiya Dada!”, which is very sweet, especially with his infectious baby grin. His grin, by the way, will be changing soon as he has cut his first tooth (bottom centre, right) and when it is fully pushed out he’ll start looking truly like our little boy, rather than our chubby, smiling, baby.

Also, he’s taken it upon himself to get on his hands and knees in the crawling position, he rocks front to back but doesn’t seem to realise that if he just moved his limbs he’d be able to catapult across the room with more speed and accuracy than his current mode of slightly haphazard rolling and pivoting. I often wonder if he gets dizzy… maybe, if so, that would go some way to explaining the increasingly frequent giggling/bouncing fits he gets! I can’t say that I don’t love them, though, so I hope that they persist.

On Saturday, Henry saw his first few flakes of snow through our windows. Although he didn’t appear as impressed as I was, I think that before too long snow will be a source of amusement and joy to him.

What about me? The pain is still bad. I still feel more than slightly incarcerated in our upstairs flat (lovely and large though it is) and so have been taking solace in sewing. It’s a secret love of mine, needlework, from embroidery to quilting, blackwork to crewel; I find myself transported into an older and, arguably, simpler age.

My wonderful man cannot be faulted. How he manages to watch me in this state, knowing he can’t take the hurt away, I do not know. I see that it upsets him when I wince and limp, when I have to hold onto door frames for support until I manage to make myself more stable. Were the situation reversed, I don’t know if I’d be able to cope anywhere near as well as he does. Henry and I are lucky to have him in our lives.

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.

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.

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.

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!

“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.”