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Symphysis Pubis Dysfunction
This condition has now been in my life for years. It’s the one thing that reduces me to tears on a daily basis. I developed this condition in my 4th month of pregnancy with Joshua and throughout I was told this condition will rectify itself after birth.
My son is now nearly 21 months old and this condition is still with me. It is now more painful than ever with no signs of reprieve.
SPD is not only a pregnancy related condition it can be developed in men and women that have previously had a fall or damage to the pelvic area. Although the majority of cases are brought on by pregnancy hormones, which work to loosen the ligament that holds the pubic bones together (Pubic Symphysis) in order to allow babys head to pass through the pelvis when giving birth.
In my case I had trauma to the pelvis a few years back along with extra weight before my pregnancy. That added to excessive weight gain throughout my pregnancy and the hormone changes in pregnancy. Bingo.. unstable pelvis at the sacroiliac joints and the Pubic Symphysis joint.
No Work
I was signed off work by my 7th month of pregnancy due to the condition. As I worked at a desk all day and found it unbearable to sit for any length of time. Also I was having physio weekly and was advised that unless I gave up work and started to rest more I would damage my pelvis permanently.
I wore the pregnancy support belt I was given day and night along with 4 layers of bandaging I wore all the time to try and correct the instability in my pelvis. Nothing worked; I barely slept and was in constant pain.
After my son’s birth by elective section I was looking forward to the pain subsiding. Then for things to get back to normal. However with each passing month my hope disappeared. I was informed by the physio at my local hospital that I needed physio 2-3 times per week but they could only fit me in once every 3-4 weeks.
The Chiropractor For The Pelvis Girdle Pain
Running out of options I visited a chiropractor and found this and acupuncture helped for the following 2 days after an appointment. But at a cost of £30 per visit and 1-2 visits per week we could only afford this for 6 months. So I have now been without physio or a chiropractor for nearly 2 years
Luckily Joshua slept through the night from 5 weeks old. Unfortunately even now I do not sleep solidly through the night. I often wake up 3-6 times a night with excruciating pain in one or both of my hips and or legs. My hips, pelvis and lower back all crack and crunch and I can feel both sides of my pelvis moving independently.
The Surgery The Wait
Last January I finally had my appointment come through after waiting months and months to see a specialist at the hospital. On seeing the Consultant he sent me for X-rays and confirmed that I had this condition. (really, I never would of guessed) Then I was told to lose some weight and once I am in my 40’s they would consider me for surgery. (I am only 33 currently) He also told me that the surgery is not always effective. The success rate for the surgery for Symphysis Pubis Dysfunction is only 50%.
I feel like I have a body of a 90 year old. Although I am doing everything I can to help myself. I am increasingly disheartened and I am beginning to think things will never improve.
I do have incredibly low periods with this condition whereI can’t stand to keep taking all the pain killers. However I know if I don’t I could have days where I am in such immense pain it hurts to make any movement at all.
Life Changing Decisions
I took voluntary redundancy last year from work as I knew that sitting at my desk will be excruciating and I would not of been able to maintain it in the long term. This does get me down thinking about the pain I will endure. Especially if and when I have to return back to work as some days I can’t even manage the most basic of household duties without bursting into tears.
I want to play with my kids; I want to carry out normal life without having to fit in things while I am having a good day.
Don’t get me wrong I know there are people out there that are far worse off than me and I try to think about this when I am getting down, although it doesn’t always work at keeping me positive.
I cannot tell you how debilitating this condition actually is. It affects every aspect of my life and that of my family. Maybe one day I will be old enough for the surgery and my health and quality of life will improve. Until then I will continue down the weight loss route and keep taking the pain killers.
I have since written an update on living with the condition:
Symphysis Pubis Dysfunction (Pelvic Girdle Pain) … Continued
Useful Websites:
http://www.pelvicpartnership.org.uk
Header Image Courtesy of Wiki
You have my sympathies. I was signed off work from 4 months into my pregnancy due to it and H is now 31 months! However, we have also found out now that I have a number of neurological issues where are genetic (most likely) and the pregnancy just made things a whole lot worse. I certainly won’t be having any more children unless surgery (which I hope to have next year) works!
Please do let me know if you do go ahead with the surgery and if it works for you. Some days it petrifies me and others i just want it as i dont see and end in sight. Have you found anything that relieves the pain?
I had SPD with both pregnancies, it did resolve itself, but a good friend of mine is in your situation, and is still in pain 3 years post partum. Am sorry, it was bad enough when I was pregnant, I can’t imagine your pain and discomfort, and the mental toll it takes, so long after birth. I haven’t got much to offer in terms of help, but I live with chronic pain from arthritis, which won’t “go away” either, so I just wanted to send some sympathy from one who is 36 but also feels 90 most days! We hobble on, am sorry you’ve got to struggle with it! 🙁
I am sorry you have to struggle too! how awful to have your condition so young. Have you found anything that helps relieve the pain (other than pain killers?)
We could start our own gang!
I have psoriatic arthritis, which I’ve had dormant since I was about 12, but was fully triggered by the hormonal changes post pregnancy first time round, according to my doctors. I only take pain killers if I really have to, because they’re fairly hefty (tramadol, diclofenac) and make feel fuzzy, if I’m in a bad flare, I can take muscle relaxants too, which can ease some of the pain (it’s in my hands, feet, shoulders, knees and hips now) but I’ve found that reducing my sugar and gluten intake helps with the inflammation, and I take a lot of supplements recommended by a dietician and nutritionist. I also see an osteopath regularly, which helps with some of the joint pain. I have taken cortisol injections, as well, but they give me awful acne, and are only effective in the short term. My friend is considering surgery, she’s been told she has to be 35+, and not having more children, and they’d like one more, but she’s not sure she can deal with the worsening of the pain from pregnancy.
i am taking the same pain killers as you as well as ibuprofen and paracetamol, some days i think i must rattle as i walk! although i try not to take the heavy duty ones till hubby is home and the kids are in bed for the same reason as you (they make me fuzzy)
I would like another child in the future but i am the same as your friend, i am not sure i could take anymore pain and if the surgery didnt work i dont know how i would cope.
SPD sounds like a really horrible condition. I was lucky enough not to get it during pregnancy but suffer with a mild condition of it now. This sounds awful though – and well done for getting back on your feet 🙂 xx
Thanks Vicky, some days i can barely move without the need for hardcore painkillers but i am still going! back on with the diet in January 🙂
I can totally empathize. I’m trying to cope with this problem myself, although mine is not as bad as what you have described. I too was told that the pain would go after the birth of my child, and was concerned that this did not happen, especially once I met her and saw how tiny she is! My daughter is now 3 weeks old and while the pain is not as bad i still experience some discomfort. I’m now being told that it will take up to six weeks to get better, so I’m keeping my fingers crossed.
I do hope you find a solution for your case, I can’t imagine how horrible it must be for you. Its a pain like no other.
you have my empathy too! the Dr at first told me that if you breastfeed it can also take longer to rectify due to the hormones you produce when you breastfeed. I only breastfed for about 6 weeks.
I do hope yours improves quickly and you return to full health soon xx
Wow! You poor thing! I had twinges in my first pregnancy and then full on SPD by 20 weeks in my second. I was on crutches to move around (and I LOVE to walk – fast – a lot). It was hideous and I remember how much of a fraud I felt as it’s a condition no-one can see so don’t tend to understand. I was too embarrassed to make too much fuss so carried on working (and commuting) even though sitting at a desk was agony, sitting on a train for 2 hours each way was excruciating and standing was even worse. I was lucky though in that I don’t seem to have done permanent damage although do still get the occasional twinge when I’ve been sitting too long or walked too far.
I can’t imagine having it in my life still daily and hope that you can find something that helps. Have you tried Alexander Technique or pilates as they’re both meant to be beneficial? Take care of you. xx
its so lovely to hear from someone who knows what it is like to have the condition! it seem i may have it for life. although i have now shifted 4 1/2 stones (i was 18+ stones) it has eased a fraction but still not enough to let me sleep through the night. xx
I am suffering horribly still…11 years after my twins. Nothing helps…not even hydrocodone. It feels like you are being ripped in half. I just wanted to comment because you are speakingbif your weight. I am 5’5″ and weigh 120 pounds. Very small! So maybe losing weight will help some, but it still bothers me terribly and I can’t even afford to be any smaller. I just don’t want you to think it will be a cure. I know that sounds mean and depressing, but I don’t think you should torture yourself with “what if’s” if it isn’t even goung to help much. I’m sorry you struggle with this, too. It is a horrible pain that mist people don’t understand! I really don’t either…lol! I’m having a horrible bout at the moment…doing more research. Just left the hospital with more hydrocodone and a shot of Toridol which helps for 30 minutes. Uugh. Hope you get better soon. So stupid to be in this much pain at 36 years old…and SINCE I was 25!!!
Wow! Looks like ima part of a family! I lost weight too, and that didn’t help! 5’9 and got down to 117. It didn’t change the pain. I have such a high tolerance for pain now! I’ve been dealing with it since for 9 years. Some days I just want everything to end! Then I realize how selfish that is and how many people I love and who love me! Life is too short! The pain is absolutely terrible, and I got it before pregnancy. No one knew what to call it! Two cases of wine and champagne dropped on my neck started the whole domino of injuries! Lost all feeling in my left side arm leg toes!! Excruciating pain in my neck, hip, back! Then a bus hit me and really messed me up! That wasn’t even the worst of it! I worked my whole life to build up my career so I could then someday feel like I was at the point I wanted to be so I could then have a family! Nope! It was all taken away from me! I wasn’t allowed to drive anymore, seizures! I’m 35. Drained all my finances trying to pay the bills. And the terrible truth is none of it is my fault, but I’m the one who suffers! Still haven’t seen s penny from my company 9 years ago, and nothing from the City Bus! Impossible to hire workmans comp lawyers and injury attorneys and I don’t have the energy to try anymore! Even though, it’s a complete slam dunk! That’s my life! I’m in pain 365 days a year and always on medicine and they’re trying to take it away because Washinton is so controlling! I guess when that happens we’ll see if my body holds up! Until then, I try my hardest to be happy and positive! I try to do one thing with my love that makes us laugh everyday even if we are both in a bad mind or stressed because if we don’t, we won’t make it- that’s for sure! And we won’t stay in love! The passion will die! We ride the Scooter to the beach! Yelling ” Scooter Day!” It’s awesome! We have three dogs! I’m due Sept 4 and it’s been the worst most difficult pregnancy! It will be my one and only! A miracle, who has brought more pain than I’ve ever experienced! I wouldn’t change a thing because he wouldn’t be coming in the end! Life is full of a million secrets! Some you wish you never knew or experienced, and the rest you’re biting at you’re chops to tell someone!
I also suffer from this. I feel isolated because even when I try to explain it to someone, no one really understands. I’m sorry you’re going through it, I wouldn’t wish it on anyone. I’ve tried so many things to get better, but I have yet to figure it out. As I write this, I’m lying down because I hurt so badly. I wish I didn’t need pain killers, but I wouldn’t be able to function! Anyways, I would like to have someone to talk with, if you would like to. Thanks for sharing, Tennille. (My baby is now 4 and 1/2).
awww my lovely you have my every every empathy its such a debilitating condition. I have found that due to loosing some weight (was 18.5 stones now 14.5 stones that is starting to aviate the pain but its always still there. is surgery an option for you?
I had surgery 6 months ago, but I dont feel any better. I just turned 37 last week. My weight has fluctuated 15 pounds up or down, but I haven’t really noticed a difference that way.
I’m not pregnant but was with twins (one was breach), I can’t remember any pain then but wonder if that was the start of my troubles.
I have been over weight since junior school & I’ve had a painful back for as long as I can remember but two & a half years ago I was putting washing out on the line & somehow ended up on my bum facing the other way. Ever since then I’ve been in pain & it’s just got worse.
I’m being treated for slipped discs (they are killing various nerves) but I’m just getting worse & the symptoms are the same as PvP but my physio couldn’t diagnose it.
I’m now taking 150 of morphine & naproxen & paracetamal daily & the pain just gets worse! Any ideas would be appreciated.
I have excruciating pain in my groin, I can’t sit, stand or lay for any length of time. When I go to bed I have to use my hands to lift my legs onto the bed, I can’t lift my legs to walk very well so I shuffle along & use 1 or 2 walking sticks. I can’t dress my lower half very well, I have to sit down & wiggle my clothes on.
Im
wow Maggie you have gone through the mill. I do have to state first and foremost that i have no medical training at all. However having read your list of complaints it does sound very much like SPD!! my hips/lower back often ‘giveway’ and it reduces me to tears.
I do hope you can get to the bottom of your symptoms soon xx
Hi ladies,
I am a little comforted at reading that there are people who can empathise with this debilitating pain. I am 35 and suffered with PSD when I was pregnant (10 years ago!). Once my daughter was born the pubis area seemed to be rectified but looking back that was when the pains in my hips began. Over the years I have been backwards and forwards to the doctors who diagnosed minor osteoarthritis. My hips would occasionally give way and I would be completely unable to even move, my husband had to carry me down the stairs. Once anti-inflammatories and painkillers were taken I seemed ok although the dull ache in the hip joint seemed to always be there. Then the pubis area seemed to be very weak and I would struggle to put on socks and paint toe nails etc. pulling Wellington boots off was excruciating, still the doctors have no answers. 18 months ago my back seemed to give way whilst brushing my teeth?? I was suddenly on the floor and had no strength in my lower body and couldn’t get up. I had to lay completely flat and swing my legs using my arms in and out of bed or being carried. This time the doctor diagnosed sacriolitis and with anti-inflammatories was a little better. The pain switches sides and keeps being misdiagnosed as lower back pain. I can’t sit for long and spend my life either laid flat or standing. There are a lot of clicking sounds going on more recently and it all feels extremely weak.
The physiotherapist has recommended Pilates excercise’s but they don’t seem to do a thing? It is clearly affecting other people too but the doctor seems useless, she said it is osteoarthritis and other people have to live with it?
Surely we shouldn’t be written off as 90 year olds in our 30’s!!
I just wanted to add that I am very slim with a slightly high thyroid issue so have always been slim not sure if my hormone levels are a little out of sync?
Michelle you have my every empathy, it really does feel like i am a 34 year old in a 90 year old body!! i have since writing this post lost some further weight which has helped fractionally with the pain but even doing many strengthening exercises I have not found a cure. I am wishing you all the best and If i find a cure I will most certainly be blogging to let you all know! x
Thank you and ditto, if I find any kind of sollution I will let you know.
its a deal 🙂 x
Michelle…you and I sound like we are in the same boat. It is unfortunate. I’m sorry you are going through this. I have been back and forth to more doctors the last month. The unstable pubic bone has caused me to get osteitis pubis. The mri showed that I have multiple fractures on my pubic bone. The doctor wants to take a bone graft of my hip, cut out the bad bone from my pelvis, and fuse the pubic bone together with a plate and 4 screws. The recovery time is long…I just recently read about a lady who did this surgery and she was out of work for 4 months, and a year later is still not fully mobile. It is scary. I don’t know what to do…they increased my pain medicine again, and it does not even help for longer than an hour…maybe. It never is gone completely. Please let me know how you are doing. It is very rare for this to still be bothering 10 years post babies. Less than 2 percent, my doctor said. Why do I always fall into such small percentiles? LOL! Hope you are doing well…
Michelle, I can relate to your symptoms, my (one) hip just keeps sticking out sideways I think due to back muscle spasms, and it’s so painful! Difficult to walk about, going up and down stairs painful and slow, difficult to bend at waist so getting dressed and bending to get into a car are all very difficult and take ages. When really bad can’t drive. Have left three jobs due to pain and immobility and it is very frustrating and depressing as no one can see/understand quite what you’re going through! First bad case of complete immobility and hip problems was aged 42, now I’m 48 and shocked that some of you on here are so young- I thought I was!! I too had a most unhelpful doctor who told me I had arthritis like millions of other people on the planet and to “live with it”. I am generally a very active, busy person and to be written off like this (and having left one job) was making me feel very low. I eventually through another doctor had an MRI which confirmed three slipped discs and an eventual diagnosis of Degenerative Disc Disease. All this took years. Now I sort of plateau – I’m extremely fortunate in that some days I feel totally fine but have to be very careful movement wise what I do. Today my hip is out sideways and very painful again and I’m shuffling round the house and googling for answers!! No one medically has shed any light on why my hip is so out of alignment and painful and sometimes in the early days of my period I’m woken in the middle of the night with excruciating (like giving birth) stabbing pains that are so painful that I’m sick. No doctor has a clue what that’s all about. I stupidly decided to clean out kitchen cupboards in the early stages of my pregnancy with my daughter, and hopped off the stool I had been standing on but did so awkwardly and caught my tailbone badly on the back of it (vertical wood). It hurt a lot and I’m sure I heard a crunch! What an idiot, but I wonder if that is the root of all this …. I too am quite slim so weight not an issue for me. Good luck to us all – so dreadful that even getting a diagnosis is a nightmare in itself!
I agree! I have seen a couple of really nice, sympathetic doctors (and many who are not). It is so frustrating that there isn’t anything they can do! I’ve tried a billion things, including a symphysis fusion. I’m so discouraged. I feel like a 30 year old in a 90 year old body.
Oh that’s terrible that a symphis fusion didn’t help. We surely can’t be doomed forever? I wonder if they have got any further in America, they are usually slightly more advanced. Do you have the sacroiliac problem too?
Its ludicrous isn’t it that we are forced to live in pain or be so strongly medicated we would sleep all day .. something really does have to change
I do live in the United States. I even went it the world famous Mayo Clinic. Even there their only recommendation was a symphysis fusion and sacro-iliac fusion. They suggested to try everything else I could before trying surgery because the surgery has a low success rate. They highly recommended a pain clinic and counseling because there wasn’t anything else. Ugh!!! I have to try really hard to be positive or else I completely lose it.
awww honey i am sending massive hugs, you are not alone x
Tennille, I was reading through the past comments and wondered if you tried a pain management program. I had great success at RIC in Chicago. After leaving the program I don’t feel like I’m drowning in pain all the time. It helps me get through my days. and I’m on new mess to help me sleep.
awww my lovely i am so so sorry your suffering with this, it really does seem that this condition and those leading from it are like invisible illnesses and that the general medical population know its there but dont have the knowledge, understand or ability to fix .. i keep hoping
It is very hard to stay positive but we have no option. I have lived only half a life over the past 18 months, it seems such an injustice.
I came across an interesting topic the other day but will need to look into what exactly it was when i am at work as it was on that computer. It was talking about injections into the pelvis area which effectively irritate the ligaments to harden/strengthen them up. Has anyone looked into this?
This to was recommended to me, its apparently only experimental, insurance wont cover the procedure, so I am unable to try this or I definatley would.
I have never heard of injections but i certainly will be looking into them! I am prepared to chase any option as waiting for something to come is not going to happen xx
My doctor talked to me about these. He does not recommend them because in his experience it is a lot of trouble for a couple DAYS worth of pain relief. He said for this condition he has never seen it be beneficial…anyone else with another experience?
I’m not sure if this is the right site. I have never been diagnosed, only ignored of my pain and symptoms. First pregnancy 25 years ago, fractured my tail bone from a very hard fall. My OB thought I may have to have a c-section because my tail bone healed incorrectly and thought during birth my tail bone may either be re-broken or harm the baby. Had a natural birth with no complications. Second pregnancy no issues with pain, had leaking of membranes at 24 weeks. Sealed back up was on bed rest for rest of pregnancy. Third pregnancy, crippling pain, if I would be lying on the floor I would be unable to move or get up for hours. Fourth, fifth, sixth, and seventh pregnancy not much out of the ordinary pain. The usual aches and pains associated with pregnancy. Once in a while maybe really bad but from what I remember it was bearable. When my seventh child was about 1, I was doing my usual working out. Now between baby #6 and 7 I lost about 70 lbs and worked out and lifted weights everday for years. Like I was saying when child #7 was about 1 I started experiencing pain so bad I was unable to walk, sitting was very painful. I had to be literally carried everywhere because we lived in a 3 story home and I was not able to get a wheel chair around the home. She is now 9 and I have had child #8, and I am still having the same issues. It comes and goes but I do have walk with a cane alot. The pain is so unbearable most of the time. Still no diagnosis, doctor prescribes nerve pain blockers and thats it. I’ve been to chiropractors, physical therapy, nothing makes it better. I was told at some point to be prepared to live after 50 in a wheel chair. I am 43 and my youngest is 6. I am in no way prepared to give up and be confined to a wheel chair. Its not my weight so it cant be a weight bearing issue. I was told by one doctor that the hormone relaxin has caused the ligaments in my hips to be so relaxed from multiple pregnancies that they will not go back to pre-pregnancy. Has anyone else ever heard of this being a permanent disability? Can anyone help me with some hope on treatment?
although i dont have any medical treatment with your Doctor saying it was relaxin causing the ligaments in your pelvis to be relaxed to me this is sounding SPD to me although as i say i am not medically trained. here in the Uk there is the option to have the pelvis pinned and plated back together however i believe this not always effective, on one of the comments above someone mentioned injections again i have not heard anything about that option before.
I can offer a virtual hug and be here to vent. I have experience with lots of different treatments, but I am 37 and have been using a wheelchair since 31. I am actively searching for a cure. Some women have had great success with pelvic fusion surgery. Have you looked into that? I had it done if you are interested in it. My surgeon was great and had good success prior to me.
That sounds dreadful. I think you have to just keep researching as they can’t just write you off into a wheelchair. I am SURE that together we will come across someone who can help.
I spoke with a Doctor yesterday to ask him about being tested for over production of Relaxin as like you my problems have come to a head some time after pregnancy, mine was 10 years? He told me that this is not common practice and that it would be part of clinical research not just GP diagnosis.
I believe I have had some kind of hormonal imbalance since my second pregnancy as I have also suffered from facial hair since then, they have tested my hormones but have come back with nothing so far? I think they are testing a limited amount of hormones and wonder if privately I can be tested for more? Has anyone else looked into this?
Keep looking and I’m sure we will come across something/someone.
Thank you all for the kind words. I too feel like no one understands the severe pain I am in. My oldest is always so sympathetic with me, he always tells me I’m to young to be walking with a cane, he is right. I am off to the doctor again today with some information for her that I have researched from the internet. I have just decided to live with this in the past and figured there was nothing anyone could do for me. I am so happy I am not alone and there are others that know how disabling this is. Its been 22 years since the onset of this, but has only been about 9 years since I have had an issue with movement and walking. I’m tired of the tears, the crawling on the floor, and not able to sleep in my bed because I can’t get up the stairs.
During my appt., my doctor didn’t seemed to pleased with the information I had printed out for her. She just asked “what are these papers I had brought for her”. She barely glanced at them. I proceeded to tell her what I had found. She did an exam and had did a couple different tests, found some extremely painful trigger points in my pubis bone. She then sent me for another x-ray and had said she doesn’t think the pain is originating from my back. After almost 9 years, YA THINK? I have been referred to an Orthopedic. We’ll see how this pans out next week.
I would of personally thought you would of been under an orthopaedic consultant anyway .. although the UK and USA are different so that could be why x
I was just referred to an orthopedic today as well. What did they do…what tests, and what info did you get? I hope they can help. My xray showed that my pelvic bones are misaligned. One side is higher than the other. The ct scan was negative…not sure even what that means or what it can show…
I pray that I have found the right site. I have been in severe pain for almost five years. I can’t stand for to long without being in severe pain in my upper inner legs, groin and lower abdomen. I can’t sleep I have to turn from side to side because my hips and legs hurt. I have been told it might be from me having endometriosis even after I had a hystorectomy. I have been crying my eyes out from reading these post because I have been searching for an answer of why I’m in so much pain and I wonder if this is it. Please help! I can give more detail if needed.
Hi Amy, I am not medically trained at all so i cant give you any medical advice. However when did you develop this pain?
It has been going on for over four years. And when I’ve seen the post if feels like my story being told
my lovely i am sending massive hugs!! – Has your Dr attempted diagnosing your condition at all?
Sorry just now seeing this after having my second female surgery and hysterectomy to see if that would help with the pain I have not been back It’s hard for me to trust the doctors. I have been to so many trying to figure out what is going on and still nothing but pain. That’s why when I saw your site I was hoping that you lovely ladies could help me:-) I know you all are not doctors but have been going through the same thing and I was trying to find out if my story sounds like spd
That is fantastic news, it is surely taking you in the right direction. I was also referred the other day to see someone who can test me further in my pelvic area so fingers crossed we may get somewhere. Good luck and keep us posted!
that too is good news Michelle, please do keep me posted x
Hi everyone,
Just wanted to update you as I recently had a second set of blood tests back which confirmed that I have Hyothyroidism (Underactive Thyroid) which I was very surprised about as I have never been overweight in my life and eat continuously? The rest of the symptoms fit though, dry skin, tiredness, facial hair, depression, and lots of others. Looking into it further the Thyroid is responsible for hormones which I strongly believe are responsible for my pelvis issues as I previously mentioned.
It is just a theory and I am certainly no Doctor but I do trust my instincts and know my body better than anyone. I have now been prescribed thyroxine which I may need to take for the rest of my life but I do get free prescriptions too so that’s a bonus!!
Please let me know if anyone else thinks these may be connected .
Hi Michelle this is super news that you are on your way to a diagnosis and treatment. I had a battery of blood tests hundreds of times including one for my thyroid so fear mine is not the same. However I am super happy that you have some hope of becoming pain free .. do let us all know how you get on! xx
Hi Jaime,
I hear your pain for sure! When I was in the eight month of pregnancy with my youngest I felt pain in my pubis area. According to my doctor then my baby was very big and was already bearing down. Well I gave birth two weeks over the due date. My baby was over 10lbs and I gave natural birth. No one told me about pubis symphosis then!! Ok I will tell you that was 35 years ago and I am now 57 years old you must know all those years of pain huh? I also went to a Chiropractor who helped me a great deal and I got relief but coud not afford the cost after 18months. So now I have pain still trying to sort it out.
awww Kathleen it sounds so like my story .. i love the chiropractor but i so wish there had been help to pay for it as its been the only thing that has eased my pain for a few days at a time x
I had pelvic girdle pain in both my pregnancies. After the first pregnancy I was still in pain five months on. The Nhs advised Pilates which I did religiously. However I then saw a private Physio who after around six sessions had reduced the pain to only a minor niggle in my leg. My second pregnancy was horrendous but with the right treatment I am almost pain free (gave birth 10 weeks ago). I speant the last four months of pregnancy sleeping in short bursts of an hr and unable to walk sit or stand for longer than 15 mins at a time.
I strongly urge you to shop around for the right women’s health Physio. It may cost you a couple of hundred pounds but in the long run would be worth it. Check the list of physios on pelvic partnership.
I’m no Physio but from what I understand it IS possible to be cured and it’s all about realigning the entire body…not just the pelvis.
In summary…..
I went for a second opinion and it was totally worth it. Had I not, I too would have been in pain for the rest of my life.
The only cure was to realign my ENTIRE body.
since this post was written i have seen several physios all recommended for SPD and although some relief was felt after the visits the time frame was only a few days of slight pain before it kicked back in again. Unfortunately in my case my ligaments are too over stretched to maintain my posture and realignment from seeing the physio.
I am so so pleased that you have found something that has helped you though! xx
I too have been in physical therapy three times a week. I was told years ago my ligament were extremely stretched. My physical therapist told me this is impossible, not sure why she thinks so but that is what she is telling me. My pain she says is from my SI joint being irritated for 9 years? Really I just don’t buy it, but I am doing my PT three times a week as prescribed by my Orthopedic. I haven’t had much change. The exercises they have me doing makes the pain so much worse, but they are the professionals so I do what they tell me. I have until June to finish PT. Soooo frustrated!
I was assessed by another physio with the power to refer me for an MRI recently, I’m not sure if it will show anything but she did say that I had one leg longer than the other so maybe the alignment theory is true? I had been given some excercise’s and seat positions from the earlier physio and they caused me excruciating pain so I have stopped until after my scan, the second physio said that was the right thing to do, it’s not supposed to cause you more pain. Strangely my pain seems to have moved recently, from the SI joint round to my hip area. It feels like it is very inflamed and very sore and after some very light gardening yesterday I have not slept all night from the pain.
I wish someone had some answers but all the medical people I have seen just seem flummoxed?
i get that same thing the migration to the hip area! sending big hugs x
That also is another one of my issues. My left leg is 1/2 inch shorter than my right. I have arthritis in my right hip and I have a small degree of scoliosis. It seems like its never ending. Theres nothing they can do for the scoliosis because of my age. I was given a lift for my shoe for my left leg which causes me more pain because my body doesn’t want to adjust to it, but as for the rest Its a waiting game to see if the PT works. I am not very optimistic.
i am keeping my fingers crossed for you! xx
hugs lovely its such a strange condition isnt it what works for one doesnt for another x
After reading this I literally feel your pain as well as the constant pain I’ve been suffering from with SPD since I was 14 weeks pregnant in March 2012. By June 2012 I was on crutches and signed off work (I too have a desk job and couldn’t sit because of the pain). My Physio was convinced it would disappear after I had my daughter. How wrong was she!
I’ve been taking opiate medication for two years. I have had endless Physio, hydrotherapy and acupuncture and the SPD lingers on. I’m taking in excess of 15 tablets a day. My women’s health Physio has discharged me because she doesn’t know whys to do with me. My GP doesn’t know what to do with me and each day I am in pain. My daughter is an active 19 month old, I can’t keep up with her or lead a normal life because of this awful disabling condition. I am now waiting to be seen at another hospital in Oxford as the women’s health Physio thinks my spine is causing the problems. I would love another baby but I’ve been warned I will get the SPD again (again, it’s not gone from last time)..
awww honey i so know how your feeling right now and its so frustrating and painful!! although i cant fix it, you are not alone! xx
Thank you, I’m so glad I’ve found people who know how I feel. My husband gets the brunt of it but he doesn’t understand the pain I’m in and I think my GP thinks I’m making it up! None of my friends have ever experienced this (thank god) so sometimes I feel all on my own with it. Never in my wildest dreams did I think having a baby would result in such an awful condition. I’m just waiting now to see the orthopaedic doctors. Fingers crossed they can help. I won’t be stopping until someone can help me! Shame I have to rely on the NHS, I think if I had money I could get it sorted a lot quicker!
Well done you, keep going until eventually you find someone who can help. That is what I intend to do too and at some point one of us on here will get the right diagnosis and treatment. It’s an awfully debilitating condition and you have my every sympathy trying to handle a young child with the pain. I have two older girls who I have to ask to help me (I’m age 35 so not old).
Can I ask if you drive and if you do are you in pain? I am finding driving any kind of distance so painful because of using the clutch.
Good luck getting a diagnosis x
Thanks Michelle, I am going to keep on going with this, my GP told me last week it might be something I will have to come to terms with, that they might not never find out why I am in this pain or how to treat me. I think this is utter rubbish, basically shes saying I will have to be on medication for life? I am 30 years old, theres no way I am going to live with this indefinately. I am hoping the referral to the osteo department at my local hospital might shed some light, it seems my SPD is being caused by chronic lumber spine stiffness but nothing seems to help it; pilates, physio manipulating it, accipuncture, hydrotherapy etc etc.. It is hard with a toddler because she doesnt understand why mummy cant do what daddy does (running around, climbing around). Thankfully I do drive which helped a lot when I was pregnant so I could maintain a little bit of independance. I did have to buy a new car because of my condition as my old car was too low to the floor so hurt me getting my daughter in and out so I brought a C-max which is higher. I struggle driving long distances because of the pain, but I can drive and force through the pain barrier as it is the only way I can get around! I do struggle with drowsyness with the medications I am on and unfortunately have had a couple of crashes because of this! Has anyone on here had experience of getting a disabled parking badge for their car? I have had one in the past but it ran out and I am in the process of applying again through my local council.
Chloe,
Just keep pushing and I will too, there has to be answers somehwere, they just can’t write us off at our age?? I too was recently referred to an Osteo who has now referred me for an MRI in 2 weeks. I am not hopeful it will show anything to be honest as I believe it could be my ligaments around my pelvis. I too have done pilates etc but it didn’t help. In one of my earlier comments I mentioned a theory about the ligaments being affected through the hormone relaxin which is an american theory I think but our health system only test relaxin levels in clinical studies, or so I was told by my GP.
Ialso had to buy a higher car because of the pain getting in and out and have thought about requesting a disability badge but I just don’t think my GP takes my condition seriously enough. I am not on medication, just paracetamol which don’t do a thing but I can’t function on the stronger tablets.
Good luck with your Osteo appointment, let us know how you get on 🙂
Hi
It was so interesting to read the description of your symptoms. For years I have battled pain in my lower back groin pelvis legs knees etc. I had heart surgery last year and feel that all the symptoms were aggravated post surgery. Over recent years falls have also worsened the pain and I have become clumsy due to the restrictions on my mobility.
Recent MRI scan (November 2013) confirmed extensive arthritic problems around my lower back and groin area and seemed to point to the solution being hip surgery. I have insisted that my pain is in my groin and causes me problems walking, sitting, climbing stairs, descending stairs, sleeping(need a pillow between my legs to ease the pain).
Last week my orthopaedic consultant explained that hip surgery will not relieve the groin an lower back/girth pain as it’s pelvic symphysis ( I think) he stated he could operate and I will still have the excruciating pain that needs me to take morphine, Gabapentin, Naproxen etc. I was also diagnosed with Fibromyalgia about 5 years ago.
I had dreadful pain when carrying my two girls and by the end of each pregnancy was practically unable to walk 🙁
Now this is the bombshell, I’m not of childbearing age and had emergency Caesarian sections with each delivery.
I am also 61 !!!! So there is very little information on this condition for women of my age. I was so relieved to read your blog and your symptoms are so like mine, I just felt I had to contact you to see if many women of my age have this condition.
I now have to wait again to be referred internally at my hospital, not sure what department I will be referred to
Love and hugs
Cathy xxxxx
Hi Cathy, I am so sorry you emailed me a few days ago and I have been playing catch up with blogging so didnt get round to responding.
my personal thoughts are that there is very limited knowledge in the healthcare arena regarding the condition, i think regardless of age, certainly I have found they all agree what it is but have limited knowledge, understand and what seems live very limited options to treat it.
I would love to hear more on how you get on with your next referral and obviously what happens only if you would like to share it. xxx
Hi Jaime
I wasn’t sure the e mail had sent. I will keep you informed. I intend to visit my GP to get an early referral as the orthopaedic consultant warned me that the internal system is very slow. The MRI scan was unbearably painful and it lasted over an hour being in one position with weights on my hips. That was last November and our local hospital is undergoing a new computer system my results got “lost”. Recent CT scan confirmed his earlier thoughts about the pubic symphysis and I will now wait for further appointments. I have suffered years of pain and sometimes dread people asking how I am, choosing to say, not too bad, rather than bore them with the list of aches and pains I experience both day and night.
Over the last few years all drs seem to do is prescribe more and more pills which only serve to dull reflexes and leave me feeling zonked. I am guessing that maybe I could be referred to gynecology but am not sure. Over the years I have tried lots of alternative treatment none of which have helped, the Fibro diagnosis was a number of years ago but at the moment the pelvic pain is becoming more acute and also more restricting. My parents are both in their eighties need care full time as mum is bedridden and dad has vascular dementia. I try to help as much as I can but would welcome some relief from this constant pain to enable me to be more involved. Thank you for you kind words, take care and I will keep to informed of any progress hopefully
Cathy xxx
Hi, I’m so glad I found this blog. I felt so alone for so long. I had mild SPD with my daughter and she was 5 lbs at birth. However with my son I was on bed rest at 7 months needing a cane to walk. He was breech and kicking my pelvis apart. (In my life I have been in two bad car accidents and fallen down a flight of stair twice, both on my butt.) Thought I recovered until a bad work week and long road trip left me in sever pain again (6 months postpartum). I live in the US and the only website I find are UK so you gals over the pond seem to have more support or understanding. All my dr are at a complete loss with me. I finally saw a pain management specialist which helped get me to walking without a cane. I had my pubic symphysis infected with cortisone twice and because of my bad gait I developed bursitis and got injections for that. The injections help get me back on my feet but not fully recovered. I can now touch my pubic symphysis with pain. I thought I was in the road to recovery. I got to the point where I had more good days then bad. I noticed that I would have flare ups right after ovulation so my OB/GYN put me on the birth control to see if that helped. It made it worse in just 3 days. In all this I have learned I have two kids of pain. One triggered by hormones and the other is being over active or sitting to long. I’m at the point where I’m struggling working part time and thinking about disability. My son is now 17 months and I don’t think this is going away. Thanks for the blog and I’ll be following it. Is there a Facebook group or something for suppose? Thanks and cheers, Shannon
Hi!
I had SPD from being 3 months pregnant with my twins in 2001 and I never really recovered. I just hoped that my back would get better but after several attempts to get the Drs to treat me seriously, I finally got referred to a specialist last year.
I was diagnosed with degenerative disc disease in my lumbar spine by the back specialist. I could see the problem, but I was still nt convinced that was the problem so was referred again to a pelvic specialist.
The pelvic specialist ran more scans and diagnosed me with SIJD, with arthritis and boney spurs. He referrred me for open fusion and I go in 5 weeks.
I am nervous, don’t know really what to expect, but after 12 years of feeling like a 90 year old, unable to put my knickers on without a struggle I jumped at the chance. I have just turned 40 and figured I had more to gain than lose.
So, I am having a bone graft fusion, fixed with plates and screws in my r SI joint.
Two weeks ago I had a diagnostic injection (3rd one – 1st one could not get in the joint, 2nd one was in the sciatic nerve) and it worked, I literally did not want to go to sleep in the evening because I was so amazed that I could lie down without pain!!
If anyone has any advice, would love to hear it, theres a lot of info about Diana and Ifuse, but I can find very little about open fusion!
Take care all, good luck with your joints!
Hi All
Well just an update from me. After kicking my heals for soooo long at my GP for a referral to a decent doctor and therapist in backs, I was seen my a consultant specialist in back problems last week. She said after 2 years of suffering my problem needs to be addressed. She said PGP is a hard condition to treat as not everyone with it responds to treatment in the same way. I find any hands on Physio flares up my pain and nothing really works including the mountain of pills I take a day.
She suggested an MRI scan which I have next Monday morning. I am also seeing someone at our local pain management centre next week too. She advised gabapentin which I am taking and a referral to a muscular Physio after my MRI. Ok I am still in a lot of pain but I am getting there with getting into a service to treat me. I was originally seeing the women’s health Physio who couldn’t help me anymore so discharged me. The only problem is the waiting times for appointments. I now haven’t seen a Physio since Jan as I’ve been discharged and re-referred to other hospitals..
Just also wondered if any of you had used a tens machine? I find mine helps a lot.
I love my tens machine. And update from my last post. I had an appt with an orthopedic surgeon and he was an asshat. He basically said the good news is that he couldn’t help me and said try some physical therapy and talk to a phsycologist. Found a new surgeon willing to meet with me. He thinks I have osteitis pubis. Had a bone scan yesterday and another MRI tomorrow. He talked about a surgery to clean/resect the bone and reattach the joint so it can heal. Hope to get some answers soon and probably a second opinion. He said he had seen a woman with similar symptoms during his fellowship and had some success with the surgery. He said its rare because most women with this condition usually resolved withing 6 months postpartum. I’m still concerned because most of my flares up are related to my hormones and my OB/GYN confirmed I have two ovarian cysts. I’ll keep you all posted.
Let us know how it goes! I think this is the same surgery I had last year. My surgeon had done only 3 of these surgeries before me, and two of them turned out really well. My surgery didn’t really help me. However, I can sit better and longer, but still can’t walk well without serious pain. I wish you all the luck in the world.
Tennille, what were your symptoms that let made the dr think surgery would help? So far my bone scan and MRI was normal. The orthopedic surgeon thinks I have osteitis pubis based pain when he touches my pubic symphysis and my history. Sorry your surgery didn’t help. Did it make things worse or no change? I afraid it will just make things worse and it’s not the right thing to do based on my symptoms that I feel are really hormonal based.
I had three MRI’s over the last four years. All of them were normal. My x-rays and all of my blood work were normal, too. He did the surgery based off of the osteitis pubis diagnosis and thought if he can stabilize my pelvis, then the osteitis pubis wouldn’t be bothered. I was desperate to try something, so I agreed. I regret it now, just because I’m dealing with a surgery site pain now and a major nerve was cut which causes numbness around that site. It’s frustrating. I honestly think I can sit longer as a positive result of the surgery. My overall pain isn’t as high as prior to surgery, but I think that’s due to me adapting my lifestyle to only do activities that don’t make things much worse (stairs, lifting things, being up on my feet for a long time, etc).
Tennille, all my test have been normal. How long was recovery? I’m at the point where I feel I have nothing to lose. I’m not working, I can’t sit or drive for very long and walking is a problem. I just applied for a handicap parking pass only to make sure I get close parking for all my doctor visits.
Hi ladies, thought I would share this wonderful chair I found. I recently bought a zero gravity chair so I could be outside and spend time with my kids. I’m unable to sit even for short periods of time. This chair is amazing and really helps me relax and be social.
Caravan Sports Infinity Zero Gravity Reclining Chair with Adjustable Headrest, Beige by… http://www.amazon.com/dp/B0032UY0BU/ref=cm_sw_r_udp_awd_OOKQtb089G7FR
Hi all
Well after all this time I now know what is wrong with my back. I had an MRI on Monday and the results showed two things. The first was a torn disc in my lower spine. Heals on it’s own within 2 years. The second however I’m still trying to get my head around. I’ve been found to have a condition called bilateral scrailiatis which is inflammation of the scralitic joints. Mine is worse on my right side. This could mean I have a condition called ankaloysing spondylitis which is a form of arthritis. It runs in my paternal family. So it was a shock yesterday to finally find out. I’ve got to Change my meds, have painkillers injected into my back, have Physio and lots more. They are not sure why it started when I was pregnant as I had no signs before.
This is exactly what I have and the same surgery I was recommended this week. Have you had the surgery? I am curious if it helped you. Please let me know…there is so few stories like ours. Even my doctor talked about how rare this is for us to have. He hasn’t seen any other case like mine before…which is not reassuring! LOL! Hope you are doing better.
I didn’t have the surgery. I made a longer post at the bottom about my journey.
Hi ladies,
Just came across another website which might be of interest in our plight to figure out what the heck is wrong with us http://www.sirweb.org/patients/chronic-pelvic-pain/ I am certainly going to follow this up on my next visit to the docs as my pain is mostly when standing or sitting and is eased when laying down. Still having dreadful issues with my thyroid and am off the Levothyroxine they prescribed me as it made me very very poorly but the funny thing was, my pelvis issues definitely seemed to ease whilst on them??
Michelle
Thank you for sharing this. I’m excited to have a new treatment to try. I had just run out of ideas when I read your article, so I am interested in looking into this. It’s a theory I hadn’t heard of before.
I’ve read the link you posted Michelle, my pain too eases lying down or taking 5. I’ve sent the link to my GP to read to see what she thinks.
Well I’ve been having another flare up after a holiday with my husband and 22 month old which I can’t keep up with. I’m just about getting the flare up under control but I’m fed up of taking fist fulls of tablets just to lead a normal life. I had a MRI scan today and I am seeing a Dr at my local pain clinic tomorrow. I hope they have some suggestions. Fingers crossed!
Hi Chole,
I think I read somewhere that it doesn’t usually show up on an MRI unless dye is injected into the veins but it would be great if it did, I will keep my fingers crossed for you too. It must be very hard running around after a very small person with this awful pain. Let us know if you have any joy.
Michelle
Thanks Michelle. The MRI was on my lumber spine which my consultant and women’s health Physio feel is the reason I got SPD in the first place because it it chronically stiff. The pain starts there and radiates down to my pubic bone, hips and my bum goes numb and so do my legs. I wake up chronically stiff every morning and in pain and my body aches all over which leads me to think there’s more to it than meets the eye. After 2 years I am now under the care of an orthopaedic hospital in oxford uk, and I intend to get to the bottom of why this has happened and how to get it treated. It’s made us decide no more children but it affects us in many other ways too. It’s just horrible 🙁
I totally know where you’re coming from, it really does affect your life
Hi Tenille,
I’m excited by it too, I still find it unbelievable how many ladies are suffering. Will keep you posted if I get anywhere.
Michelle
Hi Guys, I thought I would update you on my journey just in case it is relevant to any of yours? I have recently had a positive blood test result for anti CCP after years of hip, pelvis and lower back pain. The result would have been classed as high anything over 60 – mine was 386. Apparently this points very strongly to rheumatoid arthritis which would fit with my chronic fatigue symptoms also. There doesn’t seem to be anything they can do for it though so I am currently doing my own research online as GP’s seem completely inadequate in this field in the UK.
I will keep plodding on. Hope you are all feeling better.
Michelle
You all have my sympathy unfortunately I too suffered this agony during my last pregnacy and still suffer today 17 YEARS later:-(
Admittedly some days are better than others and I am fortunate to still be able to hold a full time job thanks to sympathetic colleagues.
awww Bridget i am so sorry you suffer with this too. What fantastic colleagues you have! i work from home these days so can regularly move so this helps massively x
I experienced this in my second pregnancy but “luckily” it wasn’t until later on and it did disappear at birth. However, I’ve been battling with it from quite an early stage with my 3rd (currently 34wks now) and it seems to be getting worse by the day. If I do normal things, I can barely walk by the evening. If I lay or sit about all day I can manage the pain. I look like an old lady hobbling about and I’m only 21!!!
You have my sympathy. I’ve had three babies, and it hit me earlier each one. I have to admit, it stinks and I hate it. I feel like I’m too young to act so old!!! I’ve had a rough few weeks, so I apologize if I’m sounding too negative :/ I like connecting with others who are going though the same things.
awww Jodie you have my every empathy its such a debilitating condition isnt it .. i hope your pain passes very quickly when born x
I too suffer from spd it really is horrible. I had it towards the end in my 2nd pregnancy and for about 6 months after. This pregnancy it kicked in by 10 weeks. I’m now 34 weeks. I know how you feel waking up with the pain in your hips, which then means you have to move and cause more pain. I have a support belt and crutches and hoping that it eases off after baby is here but know that it may not 🙁 I really hope you get some relief from it soon x
Just seen this is from a few years ago. How are things now? X
awww thanks lovely, still no better i try to not let it get me down but daily painkillers are crap and dont take the whole pain away xxxxxx
Hi , I really feel your pain! I had my first child when I was 19 and I weighed 7.5 stone. No symptoms of SPD. 6 years later became pregnant with my second child ( my weight was 8.4. Stone @ 3 months pregnant) the SPD started when I was 6 months pregnant, wore a support and had physio… Like you I was told it would disappear…..I lost my baby weight relatively soon after the birth and felt fine… My third child came 5 years after the second… The pain was unbearable… ( 8.5 stone at the beginning of pregnancy , gained 5 stone to full term!!) I was in so much pain I couldn’t have pain relief because although I was 6 cm dilated when I was admitted to the maternity suite, we couldn’t distinguish what was labour pain and what was SPD… So I went ahead without pain relief…. Third child born 2 hours after being admitted… Needless to say I needed quite a few stitches!! Again lost the baby weight relatively soon ( under 7 months) and went back down to a very pleasing 8.4 stone. Exercised every day and was very happy. However … 10 years on Ann’s a few stone heavier the SPD is back in full force….. I guess the moral of my story is once you have it , it’s there for life …. But if you don’t ‘activate ‘ it ie get pregnant again or pile weight in like I have , then maybe it will keep
It’s distance!! Needless to say I’m back on the exercise abs I’m 100% it will disappear , although now i also so suffer with cervical spondylosis so the pain is heightened… Sound like a proper whinge bag lol but I’m not… It’s there yes, but up to me to manage it. I don’t believe it will ever disappear for a woman because we have the dreaded hormones to stuff us up time and again…. So my advice is , don’t let it control you, you control it whether it’s by losing weight or keeping up the exercise…don’t be beaten …. It’s frustrating and very painful … But so is a migraine …. So is have a tooth pulled …. And so is child birth….good luck my fellow sufferers , im there is spirit ( oh yes that was my final peice of advice… Have a cheeky drink to numb the pain -minus the pain killers of course!) xx
There are not enough swear words in the English language that cover my feelings on the hideousness of SPD. Nor the practitioners who imply that it will magically disappear with the arrival of the child whose pregnancy triggered it. My body has never recovered.
awww honey big hugs to you!! its an evil condition and it makes me super mad that i have yet to come across any UK medical professional that understands it or even wants to! x
i had Spd in my fourth pregnancy 15 years ago but of course in those days nothing was known . I wasn’t diagnosed until my baby was fifteen months old, I suffered dreadfully had horrendous 31 hour labour he was lying sideways and had every consultant try to turnhim, eventually prepared for cs but then he decided to be born vaginally but posterior presentation as were my others.. I couldn’t walk afterwards was in so much pain, I couldn’t lift my baby bath him etc. anyway eighteen months later I finally found a fantastic orthe traima specialist who diagnosed my problem . I had bone graft and metal plating but it was it successful in the fact I still have as much pain and disability impaired mobility as my twin sister who also was diagnosed and did not have the surgery. I use crutches and have had to buy my own wheelchair as I get no support from my gp. My. Neice recently was pregnant and sufferers Spd but was managed really well, she went on to have a full recovery so I think management in the early days is the key. Plenty of rest, no lifting, no standing for long times, etc. I am in daily pain with si joint dysfunction I have no bladder sensation no sexual sensation and poor bowel sensation. I often think what have I done to deserve this. My twin sister is in the same situation we are both hypermobile syndrome too so I think this could be more hereditary
. I can’t beR to read all your sad stories and the frustration you are going throught. I spent five years plus determined to get better even paying for private physio and chiropractic yet still like. This. I am not a good advocate but I would think seriously about surgery as I feel it has had little effect except to pull my pelvis together yet I get more back pain than I ever did. I had a hysterectomy a few years back and thought that would be my cure but yo no avail. I think there is still a lacking of understanding and support by the professionals . Even recently I saw a note my dr wrote on my record it read moans about her aches and pains as usual!!! I am now in process of changing my gp as I now know exactly what she thinks of me. I am writing a full summary of my trials and tribulations to give to my new gp . Forgot to say I moved house seven years ago so these gps do not know what my before self was. I was extremely fit active I was underweight if anything so I think weight has nothing to do with it. I wish everyone the best and my advise is , get as much rest as possible as early on , see a mc timoney chiropractic as I found these the best. If any and find a Dr that will listen.
awww my lovely .. big hugs to you!! … i think the point is we know our own bodies and we know when we are in pain but yet we are still fobbed off and its one of my biggest bug bares. xx
Have you looked into the possibility of having ehlers danlos syndrome?
The website below might be helpful to anyone who thinks they might have EDS. It has some diagnostic criteria for hypermobility. They seem to use the Brighton score and the Beighton Score. The tests for the Beighton score are something most people should be able to do themselves at home (do my joints stretch that way, basically)
I was just wondering how they diagnosed your condition? I am having terrible problems with hips, lower back and groin. I had spd in twin pregnancy… Both eight pound babies. Previous pregnancy almost ten pounds and baby shoulder dystocia. My problems are currently under investigation but problem sounds similar? I hope you are seeing some improvement.
Those sacroiliac joints are a nightmare! grr. I have back issues which my physio last year said stemmed most likely from one of the joints because of the positioning and level of my pain, then from Jan onwards after leaving physio I have had pain often with my right hip and shooting down the front of my right leg. I’ve just had xrays come back all clear so it’s not the same issue as you, and hopefully now getting some blood tests done to see what could be going on.
I have some good days where I only wake up a little stiff and mostly okay all day, but during the night the only way I can sleep and not have pain within the first hour is to sleep on my left side and even that doesn’t always help. I end up some nights sleeping sitting up as for me sitting is the most confortable.
It really is so debilitating not being able to do everything you want to on the bad days, but man does it make me appreciate the good days!! I hope they help you at some point lovely as long term pain is awful, I’m tired out after a year of it so goodness knows how you feel!
Stevie x
Hi are you still contactable ? I am currently 24 weeks pregnant with a 12 month old baby and have been diagnosed with spd, I am looking for any advice that can help me through these next 4 month I am in excruciating pain and am a nurse working in a busy ward. If your still available please could you get in contact. Thanks
Hi Amanda, I am still here and still suffering, do you have twitter? I am more than happy to chat. Jaime
Hi All, I thought I would give an update on my progress. I have been suffering with SPD for over 2 1/2 years. I have seen every doctors even an orthopedic surgeon that has experience with osteitis pubis in postpartum women. He said he could do surgery to remove the thing in between the pubic symphysis and shave it down. I decided that was not the right fit because it could create unstable pelvis years later. well my pelvis is unstable now. I finally met a dr at RIC Rehab Institute of Chicago and she found the right physical therapist for me. When I saw her I was at 20% functioning. When I finished treatment I was at 40% function. To me that was a big improvement. Then my PT recommended me for a Pain Management Program. So far this was the best thing for me. it was a month long program from 8-4 everyday. It taught me the basics of movement. I met with a Physical therapist, Occupational therapist, Psychologist and a medical Dr everyday. Also Biofeedback.I then improved from 40% to 60%. I still have pain everyday but I know how to pace myself thought out the day so im not in extreme pain in the evening. I still have not given up hope that ill be pain free but I’m much better at managing it. I have noticed that I have flare-ups after ovulation until my period is over. I’m unstable to walk, my hips will fall out of alignment and I have to cut back on my yoga moves because I’m to loose in the joints to hold the pose correctly. I tried to join a group on FB for support but they have not let me in. Is anyone interested in creating a private Facebook group for daily support? Let me know and I can try to figure something out. Shannon
I would definitely interested in a Facebook group of women just like us. Count me in!
Update on me: I’m trying a new physical therapist next month who specializes in Myofascial release inside the vagina (sorry if that’s too graphic). My sister has had amazing results with this type of physical therapy, so I’m going to try it.
I am just about to do a new post and update on this .. will create a group and add it on Facebook for everyone if they want to join?
Awesome! Let me know when you do it, where to go. Thanks!
I would be interested in joining too x
Hi Jaime,
Im currently studying to be a chiropractor, I’m in my 5th year, so in clinic, over the last 6mths i have worked with several people suffering with this problem and seem to be making good progress with them. I know that you have tried chiropractic, but have you tried McTimoney Chiropractic (which i am training in) its a different approach and feels completely different to the ‘cracking’ , diversified chiropractor, we learn a specific adjustment for the misalignment of the pubic bone. Just a thought, it might help, might be worth a look into, best of luck with finding a way to become pain free.
How is the therapy going? Any relief with the new physical therapist?
Shannon
I don’t see her for a few more weeks. I really have high hopes though. Fingers crossed.
I’m seeing a new PT. She does neuro-muscular physical therapy. I have had two session with her and I’m in pain for two days after. She said this type of therapy will hel turn down the noise in my nerves. I hope this increased pain is worth it.
The last physical therapist I saw did the vaginal myofascial release and it helps. She them prescribed the thera wand (s shaped) so I could do it myself. I’m sure you can imagine what the wand does. She also taught Diaphragmatic breathing and done properly helps the pelvic floor relax. I joked and said its like breathing through your vagina.
I can sympathise whole heartedly, I am suffering the same pain and at a loss what to do. The pain on standing or sitting is unbearable at times, even with the pain relief. Did the pelvic stabiliser work at all? I feel my doctor simply does not understand the affects this condition has on everyday life. I hope you start to feel more comfort soon. X
Wow! I didn’t initially realise how many comments had been made, I feel like I’m not going completely mad with the symptoms now, after reading all your comments.
Unfortunately, I have not been pregnant and therefore this has not been the cause for me. Could anyone tell me if they had/have general low tummy/ bladder region sharp pains that come and go too? I have the all the girdle pains, but the tummy pains seem to stump the medical profession. Has anyone experienced these?
BTW, a big hello to everyone.
Pelvic stabilizer only helped a bit with me. If I was not in alignment then it would cause more pain. I went through several weeks of the right kind of PT before I could use it properly. Then used it to build more strength and I stopped using it. I’m now to the point of doing intermediate level yoga and I’m still in pain. The yoga helps manage my pain.
Goodness you have just described my life! I had spd at wk14 and by wk20 I was in a wheelchair and stayed that way for the remainder of my pregnancy. My son is now 2.5 and I’m still struggling daily taking Gabapentin 3 times a day and my mobility is limited. The drugs don’t actually work anymore but I daren’t stop taking them as I’m in pain but mobile. I’m waiting to see a pelvis specialist at UCL but it’s via the NHS so I doubt it will be anytime soon. I notice that this post was written a while ago. I’d love to hear how you are now, I have to say my future feels pretty bleak at the moment! Best wishes Helen x
Hi Helen,
I am still suffering and hoping to do an update post in the next couple of weeks … I will pop a link at the bottom of this post so you can easily find it … I found knowing i was not alone all the more amazing as it does get you thinking that your on your own when you are not xx
Hiya i live with this pain every day of my life too.. my daughter is 5 and a half years old and i was bed ridden for 6 months of my pregnancy. After being induced 9days early giving birth naturaly (was advised to have an epidural but the hospital kept saying noone was available) the pain of the birth was horrendous! All i can describe it as is putting a blowtorch inside a milkbottle and waiting for it to shatter into a million pieces!…i came out of the hospital in a wheelchair. Got carried up the stairs by my husband and my mum and couldnt get back down the stairs for 9 days.. after seeing various doctors, surgeons and specialists over the years and being told “you will be fine in 6months, another 6 months, give it another 12 months”.. Id tried physio, hydrotherapy, and cortysonne injections in my spine and pelvis that only made me worse..my husband then demanded i be x-rayed… they finaly gave in and did. When i got the results later that day and seen my xray i was horrified and totaly crumbled.. i knew it anyway after living every hour of my life in constant awfull pain but i was told that it would never get better.. my pelvis is totaly out of place, twisted and wonky, this has caused my hips and pelvis to twist and move so i was told the surgery (that dosnt have a very high success rate) would only make me worse and i would end up in even more pain and in a wheel chair for life..and that even if i did want to try it no surgeon would touch me because they would know the outcome of the operation. He did tell me that “your pain will end one day…but it will be the day you stop breathing” his words had a massive impact on me and to have what i knew already confirmed and to be told its for life that little slither of hope of one day it disapearing slipped away and i was reffered to pain clinic.. when i had to start telling yet another specialist how it effected my day to day life i broke down.. he perscribed some morphine (mst). lyrica and nortryptyline for me and i finaly get some relief from the pain. It controlls my life. My husbands life and my 3 childrens lives. Some days even with such strong drugs i cant manage the stairs so i have to stay upstairs in bed, i cant get in the bath, walk to the shops at the end of my road, and most importantly i cant walk my kids to school. My husband isnt able to work because he has to take the kids to school, pick them up and take me to any appointments, shopping, and if im on a bad day bring me food and drink. The basic things in life we take for granted. I would give anything to be able to run around in the park with my kids, to live one day without the constant pain and to be back to my old self. The mental impact it has had is even more damaging. I understandably became depressed, i have very dark days, i get paniky in crowded spaces, i get nervous around People i dont know, i worry to the point of sickness, ive become a totaly differant person and it has flipped our lives upside down! For years ive been asked to try using a walking stick to see if it helps. Ive refused and refused untill we had a little break away and i used one. The differance it made was great. Standing in a queue or something like that is so much easier now. Ive finaly got over the fear of what people will think because im young (turned 30 few weeks ago), then i sat and thought … if it helps me, why am i bothered what other people think?.. if they have a problem with me using a walking stick then that is THEIR problem not mine.. im finaly starting to get myself together and learning to live with the constant pain.. i have all the help i can have now and i am lucky i have 3 beutiful healthy children, a wonderful supportive husband and there are people much worse off than me. Its hard on bad days and its hard on my family but we have eachother and i wouldnt change having my babies for the world. Reading that there is other people suffering like this is a big help to me. To know im not alone. Thankyou for sharing your story. I hope you can have the surgery and that it works for you. Xxx
awww i am sending you the biggest hug, i think the thing that still grates me all this time on is the fact that many medical professionals still know nothing about it do they! … – have just updated done an update post too if you were interested https://theoliversmadhouse.co.uk/symphysis-pubis-dysfunction-pelvic-girdle-pain-continued/
I have been suffering with pelvic instability for 2 years now. At the sacroiliac joints. Have received normal physio which didn’t work. Now i am receiving redcord training and am doing very specific core exercises. This has finally helped me to lessen the inflammation. Standing goes better. Sitting remains a problem.
So ladies, maybe worth the effort to look into redcord therapy.
Good luck to you all.
I’m glad you found something that works. I’m doing something similar. It’s called neuromuscular re education. It breaks the core exercise down to a simple task. Once you master that then something else is added. Apparently in instability comes from pain and overtime certain muscles didn’t want to commit to a move due to pain. I had the strength but the coordination was out of whack. Now I have more balance and stability which has decreased the intensity of the pain. I see a therapist out of network but it’s so worth the cost.
I was diagnosed when i was 4 months pregnant with my now 2 year old.
I have never been in so much pain. Sleeping at night in a wooden dining chair next to my bed as i could not get in and out of bed.
Having to be helped on and off the loo, in and out of the shower etc. Totally humiliating to me as i have always been fiercely private.
The hospital pre birth were really great, once then twice weekly intensive physio, support girdles and crutches etc all helped. But giving birth was a nightmare. They would not allow me to stand or adopt any position except lying down on my back, ebven though for me this was the most uncomfortable!!
I am still suffering today (its always worse when the weather is cold) , and as a brittle asthmatic i am only able to take paracetamol… So i try to hold off until i cannot bear the pain to take anything as i dont want them to not work any more
My question is…,.what other pain relief options work for you all?
hi Emma thanks for taking the time to comment .. i have updated a new post that also includes a Facebook page so we can support each other and ask questions .. if you visit this post: https://theoliversmadhouse.co.uk/symphysis-pubis-dysfunction-pelvic-girdle-pain-continued/ we can all chat more easily