An email that explains everything I need

Below is an email that someone sent me 3 years ago when we met on a baby forum and found each other experiencing exactly the same trauma. It's the most precious thing that I ever received. So I put it here (after gaining her consent) and hope it does the same help to someone else.

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I know all about that need to do research and more research and I think this stems from your desire to find others who have experienced this same condition to say “I know what you’re going through”. The loneliness of this condition is a big issue, it was for me. I felt like certain family members didn’t “get it” and deep down were thinking I was a wimp (not my husband – but perhaps people in his family). So I think your need to search the internet is because you want to be told by people who know what you’re going through that you’re not alone and that this does get better. And see? You found me and here I am telling you that you certainly are not alone and yes, you will get better, just slowly…

Don’t miss out on precious time with your daughter though to do this internet stuff. Trust me, I have a 14 year old and you never get those cute innocent first months back. Before you know it, 10 years will have passed and you will long for those first early days of discovery and sweetness. So please, try to put your thirst for info on the back burner whilst your daughter is awake and just make the most of those moments together.

I understand your anger with the medical profession. I was so angry with my obstetrician I wanted to sue her. My husband kept saying “just let it go” and this angered me even more because he of all people is supposed to be the person who sticks up for me the most and here he was just telling me to drop it and basically “shut up” about it (he didn’t literally say that, but that’s how I took it). I emailed some lawyers, had a few conversations with some of the big medical negligence law companies and did eventually decide just to let it go. I got to the point where this anger and resentment was consuming me. So I also advise you to find some coping mechanism to help alleviate this anger in you. Because at the end of the day, there really isn’t anything they can (now) do about it and you’re the one home suffering with these constant negative thoughts which are only in the end doing you harm. So try as hard as you can to let go of that pent up “argggggggghhhhhh!” feeling towards the medicos.

This condition is very rare. My obstetrician had been delivering babies for 50 years and she had only ever seen one other case, back in India. You are only the second person I’ve come across who has suffered DSP. I guess you can take pride in the fact that you are trying to reach out to others and help others with this condition (via your website) and that is a positive step you’ve taken towards emotional healing. Once you let go of the anger, hurt and resentment you can work towards acceptance, positive helping of others (which you’re already doing) and eventually emotional closure. I am still not at the emotional closure stage, but I am feeling a lot better about things. This is only since my recent positive birth experience though. It’s like it was an eraser that wiped out the rawness of the memories of the other birth. This one just went so well and smoothly and this time I chose to bottle feed so it was a breeze compared to all the breast feeding complications. It was just so easy and it helped me heal. A lot.

I too had no pain relief during my labour. None at all. And I tore really badly. It was the most unbearable pain I’ve ever experienced, all of that – labour, the head getting stuck in my pelvis, the head ramming through – splitting my ligaments in half on the way. OUCH. I took Panadeine Forte afterwards too, but only for a week or so. They made me constipated and that was hurting me too. Everything bloody hurt and then the mastitis on top. Not a happy time.

As for the spd UK link – it used to be a fantastic website but the UK govt. pulled funding on it a year or so ago and yes, I realize it now only has those ads.

It sounds to me like you went through the public health care system. In regards to having another baby, my advice to you is 12 months before you get pregnant next time, take out private health cover. Choose your own private obstetrician. Do research on EB to find one in your area that doesn’t mind doing caesars if you choose to do it that way. Talk to everyone you know to see which doctor they had and see who is a popular choice. Choose your own private obstetrician. Be proactive in your own health care. Be your own advocate. Stick up for yourself, nobody else is going to unfortunately. Tell them right from the outset that you want a caesarean. Email that woman in UK whose email address I gave you and ask her for some advice. I emailed her and asked her advice and this is what she told me:

Yes if it was me I would demand a c-section in order to prevent any further damage to my pelvis, plus the delivery would be organised and controlled, and with a c-section you get to spend some additional time resting in hospital before being discharged, so any worries or concerns about pelvic pain, etc can be addressed.

Hope that helps

Angie

Just be really demanding and persistent. Tell them you can’t take care of yourself, your toddler and your infant with pelvis problems. Don’t worry too much about a second pregnancy. I know it is the downright scariest thing I’ve ever decided to proceed with. Everyone around me – EVERYONE told me I was insane to consider having another baby after what I went through. I took my Xrays and my story to a private obstetrician (obviously a different one to who I had the first time) and asked them “could I have another baby? And what are the implications for the pregnancy and the birth?”. He said I could have another, but the pregnancy would be painful because the ligaments would stretch again. But they would not tear again, just stretch. So not as much pain as you’re going through now, but still…some pain. He said I may be wheelchair bound or back on crutches/walking frame towards the end of the pregnacy (which I was on the frame but mainly at night). It was a scary, risky decision but I decided to proceed. I figured if I never had another baby I’d regret it forever and I knew even if it was painful it wouldn’t be as bad as the actual pain from last time and if I could handle that I could handle anything! And here I am…4 months post birth with a beautiful girl (after 2 boys) and I’m absolutely fine. So my advice to you is if you really want another baby, have one. Don’t take the pelvis issue into account with your decision. Just decide “do I want another baby or not?”. If the answer is yes, then go for it but be prepared. Like I did, enroll as much support around you as possible: Coles Online, a cleaner (mine was $40 per week) and I’d wait until your current baby is at least 2.5 before I’d try to conceive, just to give you ample time to heal. It is possible and it is worth it in the end.

And you said “. I wouldn't want to get pregnant if I know for sure this is gonna happen again”. This will NOT happen again if you have a caesar. It can’t. You may very well (and it is highly likely based on what I’ve read and experienced) that you will experience SPD during a subsequent pregnancy but only for the last half of the pregnancy (at the most I’d say) and nothing like what you’ve experienced with actually tearing your ligament. I know reading the SPD support thread on EB is scary as some of the women in there really struggle, but if you do all the preparatory things like I’ve suggested you should be OK. And the time does eventually pass and I’d say all my SPD was gone after about 6 weeks this time. That’s not to say I was in agony all that time. It was totally bearable and manageable. NOTHING LIKE WHAT YOU AND I HAVE GONE THROUGH WITH THIS BIRTH OK??? You can do it!

I’ve noticed you’ve said a few times that “they” (the medical profession) can’t do anything about this condition. There is one procedure they can do, which is to have an orthopaedic surgeon put a screw in to bolt your pubic symphsis bones together, but this is really risky and they only do it to footballers with osteitis pubis (similar condition) that have half a million dollar careers at stake. My friend who had terrible SPD (and I mean the worst case I’ve ever heard of without actually having total rupture like you and I) really looked into this and was told by everyone she saw that it wasn’t worth the risk as it can leave you very stiff and in more pain than before you started.

Yes, you can get disability stickers for your car. Get your GP to apply for one for you. You can get a temporary one. My friend did this too. You can also get home help from your local council to help you with housework, but it depends on your local area. I didn’t qualify as I had a husband (even though he was away at work from 7.30am until 7pm every day).

Please don’t think that I’m saying you’re going to have 5 years of pain like you’re having now. I cannot say how long you’re going to be in pain for – nobody can. All I can do is tell you the facts of what I’ve learned on my journey and that is that my physio (who specializes in women’s birth problems) has seen a few cases like ours and she said in most of those cases her patients said it was 5 years before they were 100% pain free. For me, it’s been 3 years and 9 months since it happened and I carry on my usual life as though nothing happened. There are just some things that can be painful and only sometimes – things like really vigorous sex with your legs spread for ages (sorry if I’m being too graphic, but you get what I mean) – this can leave me a bit sore the next day; also if I trip over something I can be sore for a few days; if I slip on water where one foot takes off and the other stays put – this can tear it a bit; if I move the rug with my foot, it can feel that old twinge of pain (but only subtle and mild not excrutiating); if I crouch or kneel or get on the floor for too long I get a bit stiff but I am probably just not used to doing it for so long. So I’m not really in agony – just some mild achey kind of pains. Nothing that even requires panadol. Totally bearable. You will be over the worst of your pain by the 4 month mark and will improve every week after that. The more you can rest, the quicker you will heal. Do not wear your support belt whilst sitting down, only when standing or walking (at least this is what I was told) and I know this is a pain in the butt as you have to take it on/off/on/off all day long.

I know how frustrating it is to think that you want your life back. You have every right to feel angry and sorry for yourself. What I try to do when I feel like that is, I try to think of all the women who can’t have babies, or those whose babies were born with serious disabilities; I try to think about women who are on dialysis every day for the rest of their lives; or who are waiting for lung organ transplants, hooked up to ventilators. You, just like I did, will get over this. Yes, it will take time. Yes it will drive you to the point of frustration and depression in the meantime, but you WILL get over this. Some people aren’t that lucky. Just reading on EB alone you can see women who’ve had such bad tearing during birth that they now have colostomy bags or are permanently urine and faeces incontinent. DSP is excrutiating. It’s horrible. It’s awful. But it is something that does heal and you will have your life back. Try and focus on the end goal. You will one day feel fit and ready to take on the world. Just don’t “blow” this special time you have now with your baby daughter. You never get this time back and if you spend the whole recovery period wishing she was asleep 24/7 so you can go on the net to research this then that really would be the worst possible thing this injury could have done to you – not only robbed you of your physical capabilities for a few months, but robbed you of that special time of motherhood that is so very very precious. Do you really want this injury to cost you that too?

Feel free to vent any time. Any time at all OK? I work from home so I’m at the PC most days.

Hang in there, another day has passed. Another day closer to full recovery.

Perhaps read this out to your husband so that he knows you are not exaggerating.

Dear Rowena’s husband,

You don’t know me but your wife and I met over the internet as a consequence of having both experienced traumatic births that resulted in diastasis of the symphsis pubis ligament. I just want you to know that this injury is such a painful one. It is agony, I mean actual agony just to roll over in bed; to swing your legs out of a car; to move something on the floor with your foot. Rowena is going to recover fully, but this will take months and during this time, she needs your 100% support, not just to help with the housework and shopping and things like that (and yes I do realize you work full time), but mainly your emotional support. She needs you to stroke her hair at night and say how proud you are of her, how very sorry you are that this happened – that she is so very brave and it is really unfair that this happened, but you are there for her, to help her get through. You understand how frustrated and angry she is. You understand that she is going through a whole range of emotions: anger, self pity, resentment, guilt (that she isn’t the “perfect”, able to do everything Mum) and disappointment. You love her, are proud of her and that you and her will just take this one day at a time and get through this together.

I know this is the kind of thing I really needed to hear from my husband so I’m giving it to you now so you can pass it on to Rowena.

And Rowena, even if you don’t feel like showing that to hubby, I wrote it mainly from me to you to show you that I understand all those feelings you are going through and that I know deep down that those are the words you are longing to hear. And if your hubby doesn’t express them to you, then I’ll just have to do.

I hope I have helped in some small way.

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