Thursday, February 18, 2010

Some research

I finally got some time to do more research. I've learned quite a bit from the following links, such as conservative treatments are almost always recommended, bed rest is most important, be very careful in subsequent labours. They're mostly research articles. I have copied some stuff that I think important under the links, and highlighted the most important parts. I'm happy to know that caesarean is not a 'must' for my next baby. I'll wait and see.

http://www.sciencedirect.com/science?_ob=ArticleURL&_udi=B7CRN-4P83D6T-1&_user=10&_coverDate=02%2F29%2F2008&_rdoc=1&_fmt=high&_orig=search&_sort=d&_docanchor=&view=c&_searchStrId=1211152689&_rerunOrigin=google&_acct=C000050221&_version=1&_urlVersion=0&_userid=10&md5=71b70f22af53e109ce4447ad94b79519
external pelvic fixation

rupture of the symphysis pubis in spontaneous labouris is caused by marked intensity of the uterine contractions plus marked rapidity of labour
Pregnants with lack of pelvic flexibility in the absence of other predisposing factors, are at increased risk for development of rupture.11 Furthermore multiparity, difficult forceps delivery, precipitous labour, congenital anomalies, rickets and tuberculosis may implicate symphysis pubis separation.

With a seperation of more than 4 cm must be checked for sacroiliac joint pathology. Below 2.5 cm of separations must be treated conservatively by restrictive pelvic binder and absolute bed rest on lateral decubitus position

conservative treatment with bed rest and binders for 3�4 weeks in separations greater than 2 cm

http://www.ncbi.nlm.nih.gov/pubmed/8184705

The incidence of symphysis pubis separation is reported to be between 1:600 and 1:3400 obstetric patients

Treatment should generally be conservative and symptomatic.

Recurrent separation of the symphysis pubis could occur during subsequent deliveries but generally is no worse than the first occurrence.

http://www.ncbi.nlm.nih.gov/pubmed/3701720?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=3&log$=relatedarticles&logdbfrom=pubmed

All the cases in our 11 patients suffering peripartum pubic rupture occurred after spontaneous vaginal deliveries. Maternal age, parity, clinical pelvimetry and fetal weight did not play a clear role in the development of symphysiolysis. Rapid descent of the presenting part in the second stage, however, was a common feature. Nonoperative treatment of pubic diastasis and expectant management of subsequent deliveries seem advisable.

http://www.childbirth.org/articles/pubis.html a collection of a few articles' abstracts

http://allnurses.com/ob-gyn-nursing/please-help-student-9974.html in 2001

problem isn't even mentioned in my Maternity nursing textbook

http://www.ncbi.nlm.nih.gov/pubmed/14510169?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.Pubmed_Discovery_RA&linkpos=4&log$=relatedarticles&logdbfrom=pubmed

can be managed successfully with absolute bed rest

http://parenting.ivillage.com/pregnancy/pfirsttri/0,,midwife_3q0p,00.html

Saturday, February 6, 2010

My xray

This is the only xray I have kept. I had it done in March 2008, 15 months after the birth. I had another one done in China 6 months before but I didn't have it to take home. I was told it was 1.8cm. On this one, 6 months later, it was 1.5cm.

I don't quite understand the rest of the report but I can clearly see the 1.5cm...

Friday, February 5, 2010

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.
++++++++++
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.

+++++++++++

Thursday, February 4, 2010

Tips on PSD, compiled 15/03/2007

100608 updates: I feel that we need to be careful in our daily life for the rest of our lives after PSD has happened. I've heard a few cases where the pubic symphysis is torn again. I haven't but I believe it's a horrible feeling, and I don't know if it's gonna be worse than the first time it happened. So I will try my best not to have it happen again in the rest of my lives.

Things that I heard that re-tear the pubic symphysis are like:

1. running for bus
2. bending down to pick up toddler

Tips on PSD, compiled 070315

I've collected some information from internet and my own experience on how to deal with SPD. Hope this helps you.

1. Wear a special pelvic belt to help hold your pelvis together. Try to wear it all the time. I find it impossible to wear it all the time because it causes other problems like upset tummy or numb legs. It does help sometimes because your pelvis feel more stable.
2. Suck in tummy muscles as much as possible when changing positions.
3. Toughen your tummy muscles.
4. Abdominal exercises: core strength
5. My physio asked me to use an exercise ball to do the following exercises (which turned out making things worse and another physio who experienced PSD advised me to stop):
1) Sitting on the ball, lift one foot a little bit, and hold for a while, then the other.
2) Sitting on the ball, gently tilt pelvis.
6. Pillow between legs when lying on your sides
7. Pillow between knees when rolling in bed.
8. Pillow under knees when lying on your back
9. Stand with feet together.
10. Keep your legs together all the time.
11. Symmetrical all the time.
12. Avoid lifting, twisting, standing on one leg only, sitting with cross legs, tailor position, vacuuming, squatting.
13. Limit vigorous activities
14. Allow joints to heal while remain as active as possible.
15. Be extra careful not to slip!
16. Adapt your stride length to your pain.
17. Take one step at a time on stairs.
18. Rest as much as possible.
19. Sit with your back straight all the time.
20. Some people say supportive running shoes help handle the condition.
21. Some people say swimming makes them feel better. But do not do breaststroke. (I don’t know how to swim so this doesn’t help me.)
22. Some people recommended try Pilates.
23. I’ve been referred to an Orthopedist and due to see him next Wednesday. If he helps I’ll post more info here!
24. Some people find Osteopath + Chiropractors are effective.
25. Someone mentioned was referred to a Reumotologist. I don’t even know what a Reumotologist does!
26. (updated 100608) Physios may introduce some gentle exercises, mostly about 'core strength'. But I've found it's best for me to do no exercises at all. Of course pelvic floor exercises are a must to do, and it doesn't normally affect the pubic symphysis. I don't find any other exercises have done any help. As matter of fact they actually can make things worse. I don't even walk much. I find when it's severe I'd better limit activities to minimum. When mild, I can increase my activities just to keep my body and mind alive and fit and functional.

My story by 20/03/2007

Date updated: 20 March 2007

1. Which pregnancy did you have PSD? Was it during the pregnancy or after birth or both?

I got Diastasis when I was giving birth to my daughter. I didn’t know anything about PSD before the birth.

2. Did you have injuries BEFORE the pregnancy that you think might affect your pregnancy or PSD? (For example some people hurt their back by pulling a boat or lifting a lot of boxes) If so please provide details.

Back injured when lifted a lot of boxes at work. Was diagnosed as ‘soft tissue strain’ Lower back pain till now. Thought this might be related although was not pregnant then.

3. Did you have injuries DURING the pregnancy that you think might affect your pregnancy or PSD? If so please provide details.

No.

4. Do you think there’s anything else that might have affected your pregnancy or PSD? If so please provide details.

My back was painful during the whole pregnancy so I didn’t have much exercise, only about 20 minutes walk every day. In the late pregnancy I was mostly in bed because my back was too painful to walk or sit. The doctors said it was the hormone or relaxin produced by pregnancy that caused this pain not the injury any more.

5. When did you go into labour? How? How long was your labour?

I went into prelabour (contractions) on early am of 23/12/6 and first stage on am of 25/12/6. The midwife broke my waters because my cervix was dilated too slowly. The baby was born early am of 26/12/6

6. Do you think there’s anything in your labour that affected PSD?

Yes definitely. I was pushing with 3 people pulling my two legs. I heard a cracking sound in left thigh/groin area when pushing. Then after the labour I found I couldn’t walk. I believe this caused my PSD.

7. What were the symptoms when you were diagnosed with PSD?

 I couldn’t lift my legs hence couldn’t walk. I could only move my toes so I could move to the toilet.
 My husband had to lift my legs to help me get into bed and out of bed.
 He had to lift my upper body to help me sit up on bed
 I couldn’t roll in bed. I couldn’t actually move in bed. I couldn’t lift my legs in bed.

8. What were the treatments you received?

The doctors in the hospital said they were going to do nothing about it.

I took Panadine Forte for 2 weeks then Nurofen and Panadol for about a month.

The physio from the hospital saw me while I was in hospital and gave me some bands to hold my pelvis together (it was public holiday period so she couldn’t get a pelvic belt). She sold me a pair of crutches so I could walk. She also gave me a sheet to tell me how to take care of myself in activities, such as keeping my knees together all the time and going backwards when on stairs.

A week later I went back to see her and she sold me a pelvic belt so I could hold my pelvis all together.

I went back to see her at 6 weeks, 7 weeks and 9 weeks postpatrum for my back pain.

I went back to see her at 10 weeks and another physio suggested very gentle ball exercises. And suggested to see Registrar.

The registrar referred me to see Orthopedics surgeon. I’m due to see him at 13 weeks.

9. How have your recovery been?

 Week 1: I could walk very slowly with crutches. I could walk on stairs by going backwards one step at a time. It was very difficult to get into and out of car.
 Week 2: I could manage to get in/out of bed myself, although very very painful. Tried to sleep on tummy for a little while, because too hot/painful to lie on back for long time. Except for toilet and meals, all my time was in bed. With the help of the pelvic belt, I could lift my leg for like half a centimeter from the floor and had to put it back onto the floor in half a second. Still in a lot of pain from the very swollen vagina area and the pelvis. Really difficult to cope with the pain without pain relief (even my labour was a drug free one). Have been having Panadine Forte since the childbirth. End of the week I was able to walk without crutches or belt, like a penguin. When coughing still very bad pelvic pain.
 Week 3: I started walking without crutches as physio said better not rely on crutches so can recover sooner. I walked downstairs for the first time (except having to go to the appointments). Walked without crutches all day. Found the two sides of the pubic bones were not even: one seemed to be more out than the other. GP said no lifting, and the uneven bone maybe due to swelling or bone sliding during birth.
 Week 4: I can walk forward on stairs now!!!!!
 Week 5: I can walk on stairs continuously, not one step one rest, and don’t have to hold my breath. First time to wash dishes after the childbirth. And went to the shops across the street for a little walk
 Week 6: still too painful to do pelvic floor exercise. Went to shopping mall. Very very tiring and painful. There’s still a long way to go.
 Week 7: stopped pain relief. Painful lower back. I believed it was because I was trying so hard to walk, that I pull the muscles in my back too hard and they got strained. Physio did some treatment and gave me an exercise to toughen my tummy muscles. For the first time after the birth, I drove to my friend’s place which is 10 minute away and stayed there for 1 hour.
 Week 8: can sleep on my side for a little while. The lower back pain got better.
 Week 9: admitted to hospital for mastitis. No progress in pelvis this week.
 Week 10: Upper back was painful. I guess it was from the tummy muscle exercise: lying on my back and bending my knees, lifting my head and trying to touch my knees with my hand. Was told to put a rolled towel under upper back when lying for 2-5 minutes a couple of times a day.
 Week 11: physio advised to try exercise ball to tighten my tummy muscles. Still not much improvement.
 Week 12: lower back very painful. Read some articles and realized that it might be a symptom of PSD. I feel when I walk without the belt it’s like my pelvis is wiggling. I finally decided to get a disability sticker.
 Week 13: it’s less painful to roll in bed now and I can sleep on my sides for most of the night. Lower back is still very painful and hard to sleep because of this pain.
 Week 14: I’ve been able to sleep on my sides most of the nights. Lower back pain has been less because I haven’t slept on my back a lot. Walking is better too but long walk (eg. 1 hour) can still cause sharp pain in pubic area. It would still feel like something’s trying to break/tear that area and come out. Once I make more movements like up and down stairs a lot carrying bub this sharp pain can come back too.

10. What have you found helpful for your recovery?

My physio’s advice: to try to walk without crutches when possible, to keep my knees together, to wear the pelvic belt.

11. What do you think aggravates your condition?
 Doing housework, like washing dishes, doing laundry.
 Parting my legs.
 Lifting.
 Tripping over something.
 Being too tired.

What's this blog about?

This blog is about women's pubic symphysis problems. During pregnancy and/or labour, there might be problems with pubic symphysis, such as Pubic Symphysis Diastasis, Symphysis Pubis Dysfunction, Pubic Symphysis Separation.

The ligament between my Pubic Symphysis was torn. It was what I was told by my physio over 3 years ago after I had my first baby. Months later when I found I was still in pain and disabled, I found this 'Pubic Symphysis Diastasis' on my discharge sheet from the hospital. I started doing my research, found little information. I met a few people over internet who had similar problems, only one had exactly the same experience as I did. I started a yahoo group and invited all these people to join and discuss these conditions. Then I started to feel really depressed so I gave up talking about it.

Now I'm setting up this blog aiming to help others who experience the same or similar problems. I also have another blog in Chinese which I aim to have exactly the same information as this blog. http://blog.sina.com.cn/allawahj

My plan is to post all the information I collected on this blog so anyone can view it.

I'm also thinking of doing more research and posting new information and links in the blog, but it's a daunting task which I might need to find a lot of time to do. So it's just a thought at the moment.

You're welcome to post comments, with your collections of information and experience or discuss anything related to Pubic Symphysis problems.