Pelvic Pain Support Network
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Severe SPD for 7yrs

Hi Everyone,

I'm new on here. I had severe spd when I was expecting my 2nd child. I was bedbound at 20wks, I stuggled to do anything even going to the bathroom was agonizing. I had my baby and it took me 5months before I started to walk and drive again. I had no support or help from the doctors. I was living in pain day n night and I just got on with it.

Two years past by and my pain became unbearable again. I knew i was pregnant somehow but pregnancy tests kept coming up negative but i knew. Finally it showed up that I was pregnant with my 3rd child. Again I was bedbound by 10wks until I had my baby. My baby was 5months before I started to walk and drive again.

My youngest is 5yrs old now I'm suffering so bad, I've had the pain for 7yrs now. And currently housebound for over 2yrs now. My docs keeping sending me to pain clinics, no medication has helped ease my pain. I'm on drugs that just put me out. Can anyone help me please as what I should do.

I've had the nerve block injection but that was no good. Anyone know of a good pelvic specialist would be grateful for any information.

Thanks shaz

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What are your exact symptoms now and where do you live? US?

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I have severe pain in the pelvic area as if my bones are crushed. The pain goes down my legs. I had spd which Symphysis Pubis Dysfunction.

Walking, going upstairs, turning in bed, pain in the area between vagina, can't move my legs apart. Can't have a baths.

I live in the UK, I'm just referred to one pain clinic after another. And treating me for chronic pain. No use of medications nothing seems to help me.

Thanks shaz

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Considering you've had two children with a difficult birth.

How about considering Pelvic Physiotherapist women's obviously,I do believe they would be able to tell you a bit more if not help with your problem. Do a bit of reading up on them,and ask questions.

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Same question Shazk,Where do you live.

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I live in the uk

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I have read on it but there's no help. I just get referred to pain clinics one after another. Lost hope now

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No you can't loose hope. I'm in terrible pain daily but while I have breath in my body I'll do what I can.

Now I don't know your money situation,but is there any chance you could afford one consultation to see if they can help you.

Where do you live in the U.K.?

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I know what you mean, but feel like I come to a dead end each time. I will try that if I can get it done privately. I live in the West Midlands. Docs are saying I have chronic pain and that I have to learn to deal with it.

Thanks for your help Gemini71, hope you better to.

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My part of the woods then. You probably know Harborne,I've been recommended a Physiotherapist there,I'm seeing her in May I can't remember the name of the practice off hand. But I'll check it out and send it you . When I emailed them I was told £70 but if I couldn't afford it,they would sort me out,as there into helping people . I'll be back.

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Ahhh thankyou so much, that would be grate. Hope it goes well for you. Not long before you go to see your physiotherapist. Xx

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I feel you are being medically neglected. Have you had an MRI? CT scan? X-ray? What were the results? What about the support of a psychiatrist or counselor? Is there no multi-disciplinary Pain Clinic anywhere near you?

Were your deliveries vaginal or C-sections. Since the third child was born have you chose to and had a tubal ligation? What method was used IF you have had a tubal ligation?

Have you been offered a nerve pain modulator like amytriptyline or Nortriptyline? Are you depressed?

A nerve block will NOT work if only anaesthetic is injected. The doctor must inject steroid as well. When I had my fluoroscopy-guided pudendal nerve block done with anesthetic and 80mg. methylprednisone.....it worked! I could sit for the first time in 19 months. Can you find out what type of nerve block you had what was injected and whether it was done with guidance? Did you ask for a copy of the report?

Do you know if nerves have been injured in some way and how? Pain down the leg is often the sciatic nerve. Do you have neuralgia? ( nerve pain....electrocution pain, burning pain ) Do you have myalgia.( muscle pain ). If you have been forced to be bed bound, your muscles may have weakened and atrophied. When was the last time your doctor measured your heart and liver enzymes? What about creatinine and BUN. Is your blood pressure stable?

Are you able to sleep? Do you have an appetite? I lost my own appetite for years as I was too sleep-deprived from not having my nerve pain controlled. Also to, I lost my sense of smell and taste from taking prescription Lyrica and Cymbalta...both of which were ineffective for pain relief.

Like you, I was thought to be psychosomatic and I was not taken seriously. Long term suffering of physical pain is NOT healthy emotionally, physically and spiritually. You do not want to develop an organic brain disease from being left in pain......you might lose cognitive function. ( I did for 3.5 years ).

I need to research SPD...never heard of it BUT it sounds painful. Thinking of you.

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Hi Konagirl60, I had c-sections with all my children (3). I had a MRI and X-RAY that was done 3yrs ago to check if I had Arthritis. And was discharged from Corbett hospital. Yeh I had a nerve block with anaesthetic, I'm not sure it was to numb the area slightly for the nerve block injection. I've been on Amytriptyline aswell and currently on morphine patches the lowest dose. Had a higher dose I was completely drugged up, lost my appetite and was unable to move. So I was moved back to the lower dose. Nothing seems to work, I can't turn in bed sometimes sleeping for me difficult as I'm in pain. I've been on all sorts of drugs that haven't worked at all.

Yes I think I have some depression I've been house bound for more than 2yrs now. My children don't understand d pain I'm in and why I only stay at home. My doctor doesnt understand what a pelvic specialist would do. No one's checked or no recent xrays. Just popping the pills.

Feel life has come to a stop. Yes I feel as if my mussels have weakened due to having to lie down all the time. I'm happy to hear that you got better.

Thanks for your message x

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I just searched support groups for Mothers in England. Have you had a health visitor from a local clinic come to see you and assess your health and the new baby's? Apparently, any new Mom can have this? Usually a nurse is the person that comes.

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I contacted them 5yrs ago no help at all. My youngest is 5yrs now.

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You are ‘stuck’. Would hiring a registered nurse consultant help? Doctors have to answer to a registered nurse. I hired one and it saved my life.

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Hi Konagirl60, I have the district nurses come by and occupational therapist who has contacted my doctors and is questioning them about what treatments I'm on. And why I'm not sent to be seen by a specialist. Didn't know about a registered nurse, I will look into that. Thankyou for pointing that out to me. I would love to get back on my feet again. Thankyou for your advice.

Shaz Xx

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Good luck. You need help. The doctors are brushing you off.

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Hi Konagirl60, so true. I feel they don't understand what I'm going through. I personally don't think they don't know.

Sorry for the late reply I've been really unwell cause of my pelvic pain. I had severe sharp throbbing pains, like my bones have been smashed. Along with it comes the headache, always get it. When my pelvic pain is at its worst.

Even with so much information out there I still think there's not much awareness about this.

Thankyou for your message again.

Shaz xx

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Shaz, does it hurt to sit? Does it hurt to walk? Does your foot get numb? Can you sleep?

I had to be diagnosed out of country because no doctor in my home province believed me. They all thought I was psychosomatic. Even with a firm U.S. diagnosis, my G.P. refused to believe it and my Pain specialist dropped me. That is neglect and abandonment!

I almost died from severe sleep deprivation and no control of my severe life threatening nerve compression pain. I think there really are ‘death panels’ and doctors decide who can get treated and who cannot.

I was a single divorced Mother. I believe I was ‘victimized’ because I am female and I was 51 years old when my chronic nerve pain started. Also to, they were protecting a doctor whose surgery on me caused issues. No one who should have cared did. I do not know why?

Do they offer private health care where you live? We have private clinics here and the rich can move ahead because of it. The average person waits a year for an MRI and a year to see a specialist. Unmanaged chronic pain that lasts a year likely causes ‘somatization’. Most but not all doctors have NO CLUE what being left in untreated pain does to a person.

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Hi Konagirl60, I can't sit or walk properly, I'm on the sofa alday. I have to lie down all the time.

I kinda get the feeling of neglect aswell I'm 42 yrs old and my problems started with my daughter who is 7yrs old now. This problem I have should go away after child birth. But no for me it took me 5months before I would start walking again.

The problem worsened when I unexpectedly got pregnant with my 3rd child. I should have been told by my doctors not to get pregnant.

It took several months after birth of my baby boy before I started to get back on my feet.

I was still in pain constantly but I was able to drive, drop and pick my kids from school. It used to kill me the pain. I wouldn't be tired but had to leave the house work and rest. I would get back up for 1.30pm and cook for my husband then go and collect the kids. There was days when my children were collected by the school staff or my friend would collect them as I was unable to get out of the car.

I carried on like this until with daily pain and no medication. Until sep 2016 pain was so bad I couldn't get out of the car which I parked in front of door, was stuck in the car for over half an hour until some1 came to help me out. Since then I have not driven and have been housebound. Never expected that 1 day I would be disabled.

Sorry I carried on about too much.

I believe you there is negligence everywhere. My husband is also thinking of going abroad for my treatment. But the thought of travelling i find it difficult.

Shaz xx

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Where would your husbands take you?

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He's thinking of Pakistan, privately you can get Mri and ct scan in a week. And also be seen by a consultant more quicker than the uk here. But the issue is 2hrs checking at the airport then 9hrs plane journery further 2hrs checking at the Pakistan airport. Then 4hours drive to my in-laws house it's too much for me. I can't sit on a sofa for long, I have to lie down most of the time. Don't knw how I would travel.

Shaz x

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Shaz, I wear hot pepper patches ( capsicum ) when I have to travel or drive a long way. I also sit on a special pad that deflects the nerve signals. It is called ‘Spoonk’ and we found it at a health food store. Keep me posted on what you decide. Best of luck. You deserve to have some quality of life.

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Hi Konagirl60, sorry for the late reply. I'm not always able to reply back, my pains are so bad at times. I'm in agony most of the time and the pain is unbearable. The meds I'm on don't work and currently I'm on morphine patches, even these don't work. I wish that there doctors on this site aswell that could give advice as what should be done. I will look into the pepper patches and the spoonk. I get so lonely at home maybe with these I might be able to get out a little if not far but local.

Thank you for the letting me know about the patches and spoonk.

It's depressing with technology and information out there, the doctors still seem to find it hard to understand the problem. Shaz xx

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First, there is help. Even now. So much more is now out there for this condition than was once the case. You need to see a physio who has the expertise and training in this area. One who has the specialist interest in this field. There are a number. I see one in Cardiff, but previously travelled to the Cotswolds area from Wales, in order to get the right sort of support. I'm not pain free 13years later, I am fully functioning with pain that is usually very well managed. So, I would say I endure chronic pain but live a normal life. Thanks only to the right sort of understanding and help I eventually found. Honestly, I believe there is hope for you. And it is right to think that at this stage, atrophied muscles are probably part of the problem. Eventually, you are likely to realise that targeted exercises will be necessary for the rest of your life, in order to minimise the effects of the underlying condition, but you need to do this with guidance and it will be a gradual process of getting you there. The positive is this will start to give you a sense of self help, control and positive achievement.

You are not alone...please look up the Pelvic Partnership as a starting point and as a matter of urgency. I think it will be a life line for you.

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Hi bc18, Thanks for the information, even with all the information sometimes docs brush it off. There's still not much awareness around.

Sorry for the late reply I had very bad pelvic pain along with the headaches. It's gets so bad that I'm in agony.

That is good news at least you can get on with your life and are able to deal with the pain. Do you drive? My driving ended nearly 3yrs ago. Haven't driven since, miss little things in life. Shaz

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I drive, but I couldn't for some time...I am fully functional, but I experience pain that to others is invisible.

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Read up on Pelvic Congestion Syndrome. Your symptoms follow that in my opinion. It is varicose veins in the pelvis, rare. The more up and active you are the worse it feels. Blood is pooling in pelvic and causes achiness, cramping, sharp pain etc. it's, horrible. Gets worse with each pregnancy, laying down helps, it's a circulatory issue. I'm in your shoes, everyday a struggle. Please google it, interventional Radiologist is who you need to see. Hang in there😘

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