1 year 7 months ago - 1 year 7 months ago#26797by Jayjay
Jayjay created the topic: Chronic Pain All Over My Body For Most Of My Life
I've been looking for a place to try and get help and support for my ongoing pain. I do have support from friends and family, but they don't really know what I am going through, as they have never experienced this type of pain. I'm sorry that this post will be super long, but I've had this pain for most of my life. I just desperately need some help with coping.
I guess that the pain began when I was 12, when I had my first period. The menstration has always been incredibly agonising and only got worse as I got older. The true agony of it began in my 30's. I am now 39. I'd bleed heavily for about 12-15 days (I was going through half a pack of pads a day), had the most excruciating cramps down the legs and in the abdomen, migraine through the roof (Till I cannot see out of one eye at all and my face feels numb), vomiting and nausea, aches all in my muscles as if I had been beat up or had the worse flu. These symptoms started out relatively mild when I was younger, but the bleeding became heavier and more days and the pain more agonising over time. I went to doctors and they tried several pills to help with the hormones, but none of them helped.
When I got into my early 20's, the pain from my periods seemed to continue for the entire month, even though I was not bleeding for much of it. I began to have dreadful stabbing pains in the pelvis and on both sides of my stomach right up to the hips. The leg cramps were daily and especially bad at night. I began to get pain down my back and arms too and felt like I was beat up and almost every inch of my body was in pain. I also began to get severely constipated and was only able to poo every 2-3 months. My stomach would get larger and more painful (Looking like I was pregnant) until I finally got utterly agonising diarrhea and it would come out. This had continued right up till my current age. I have had daily Movicol and other tablets to make me regular, with no result.
My migraines were now 24/7 and though I went to three Neurologists and dozens of medications (Even Botox), they couldn't get them down or even manageable. They all ended up giving up on me and I haven't been back to a Neurologist in about 8 years. They are completely debilitating and all I can do is lie in bed and wait for it to go.
In my late 30's, I began to develop bruises all over my body, though I wasn't hitting myself on anything. I'd get extremely exhausted too. They came very 2-3 months and lasted a few weeks. They are mostly on my legs and arms and stomach.
Whenever I told my doctors that I had all of these symptoms, I was told that I had the flu, or Gastroenteritis, and given days off of work and antibiotics. Nothing further was done about how bad my periods were. They didn't seem interested in the bruising that kept showing up every few months. I have currently seen over 20 doctors within the last 20 years (I have seen more than 3 doctors this year alone) and none have been able to help me. They have even suggested that it's in my own head and I have had to use Panadeine Extra and Nurofen, because the doctors are unwilling to give stronger painkillers to people when they can't prove they have a legitimate condition causing it. I would have a kind doctor here and there who would give me a script for Endone or Tramodol, but only one. The doctors seemed to believe me at first, but when they stopped believing me and helping, I'd go to another doctor. I needed fresh eyes. This has unfortunately been viewed as doctor hopping in order to get painkillers. New doctors who learned that I'd seen so many, immediately viewed me as a druggie trying to get a fix and wouldn't give me pain relief.
In 2009, my pain began to go through the roof and I found a large lump in my stomach. I went to a female doctor and she suspected an ovarian cyst. Subsequent tests revealed that I did have a 10x8x8 cm cyst on my ovary. Due to the agony of my periods, the hospital thought that I had Endometriosis. My uterus swelled up so that I looked pregnant and I found out it was 4-5 times its usual size. They also found that my right kidney was down to 23% function and I had six fibroids growing through my uterus lining. A doctor at the Canberra Hospital (Dr S) operated and removed the cyst by laparotomy. He removed 2 fibroids, but couldn't get to the rest due to my uterus being so big and twisted to the side. He saved both ovaries.
Six weeks passed and none of my pain had improved. I went back to Dr S and he told me that it was only fibroid pain and that there was no Endometriosis and he couldn't see anything else gynaecologically wrong with me. He was so emphatic about it, that he cancelled by support to the Endometriosis clinic, which I'd only been to once. Dr S also refused my calls and wouldn't see me again. Calls to nurse M of the clinic also remained unresponded to. They cut off all my help from other Endo sufferers.
I also began to see the Pain Clinic in Canberra, but found little help there. They seemed more determined to get me off of my painkillers and to do meditation and exercises, than finding out a reason for my continuing pain. They also thought that my pain was all in my head, because Dr S told them that nothing gynaecological was wrong with me.
I had Endoscopies, colonoscopies, CT scans, and ultrasounds, but baring the fibroids, the swollen uterus, and kidney, they said they found nothing wrong with me. I lost my job because I was unable to work with my pain. Painkillers weren't working and I could only curl up in bed day and night and unable to sleep.
In desperation I asked my doctor for help and she sent me to Dr U at the Deakin Specialist Centre. She sent me up to Sydney to see a brilliant surgeon, Dr Lam. He took one look at all of the results from my various scans and tests and demanded to know why I hadn't already been operated on. He said that I most definitely had bad Endometriosis. I was sent home to Canberra and got a call that night to go back to Sydney for surgery in a few weeks. In implant was put into me (Zoladex) to take down the swelling of my uterus and reduce the fibroids.
He did the surgery and he found Endometriosis riddled all over my uterus and on my bowel. He also removed the four remaining fibroids. I was so grateful! Almost a lifetime of pain and he'd fixed me!
I healed up and the pain mostly went away for a year and a half, but there was still some lingering pain of about 30%. My periods began to get bad again and the pain in the abdomen and my migraines slowly crept back up. I went back to Dr Lam and he said that usually Endometriosis takes 5 years to grow back, but that mine had already begun to do so after only a year and a half. He said that I had rapid healing and my hormone level was high. He refused to do surgery on me again (He said he didn't want to be opening me up every few years to remove the new Endometriosis) and he recommended the Mirena implant be put in. I begged for my uterus to be taken out, as I had never wanted kids and could adopt, but he told me to "Get a Husband and pop out a few babies." He told me that I'd have to live with the pain. He also recommended hormone treatments if the Mirena didn't work.
I went back to Canberra and Dr U of the Specialist Clinic put put the Mirena in me. She told me that she didn't expect to see me again.
The pain got worse and worse, even with the Mirena in. I lost 3 more jobs over it. Because Dr U wasn't seeing me anymore, the hormone treatments were never done. I tried to get on with my life and my doctors wouldn't give me any pain relief. I began to switch doctors in order to get some fresh perspective and help. Subsequent CT scans and ultrasounds revealed nothing in my uterus. They said it all looked fine. I know exactly what Endometriosis feels like and it definitely had grown back, but no one wanted to remove it or take my uterus out.
I managed to move on with my life, though I lost jobs and I was in pain every hour of the day. I couldn't find a doctor who believed my pain. In 2015 I asked a new doctor to do tests. They found that my kidney was down to 18% function, my spleen was enlarged, I had a new 6 cm cyst on the same right ovary as the last one was removed from and fibroids. This doctor called a previous doctor, who hadn't believed my pain, and who told my new one that none of these issues were serious and that I'd have to live with it. The new doctor agreed and that was the end of it. He told me that if my right kidney died, I still had another one. He put me on nothing for pain, or to try and help the kidney. Bruises had begun to appear all over my body for no reason. All my blood tests came out with flying colours.
I kept taking myself to the Canberra hospital Emergency when I couldn't handle my pain, but they always ended up sending me home when they couldn't help me. I was not admitted to the hospital and they never got my pain down. One doctor there told me my pain was coming from not not being able to poo for so long. I was given an enema and sent home and the pain continued. Other doctor's told me the pain was all in my head. The minute they heard that I had a history of Endometriosis, it was like they didn't care to help me anymore. I was told that there was nothing I could do and to go to a specialist. My current doctor tried to get me into my former Gynaecologist, Dr Y, but she refused to see me and said that my issues were too complicated. I tried to see another Gyne in that Specialist Centre, but she also refused on that same basis.
Now we come to 2016. I still have the agony in my abdomen, my migraines, my bruises, skin sensitively, the aches in every muscle of my body on a daily basis. Peeing became agonising too. My body no longer tells me that my bladder is full. The only way I know that I need to pee is when I suddenly get a flare of agony from my stomach through to the base of my back behind my left hip. The pee does not come out on it's own and I need to bear down every time and hold my breath in burst, till I empty it. This happens day and night. I still only poo every few months. I can't even seem to bear down, as if my muscles down there are not working. My cramps from my waist down are also there all the time and especially worse at night. My skin hurts too, like it's on fire, though that pain comes and goes. Any touch of clothing or from laying in my bed makes it worse. I've mentioned it to my doctors for years and they've done nothing. I have not been sent to any specialists. I have stabbing and burning pain in my abdomen at the pelvis, all the way hip to hip and around my belly button. I feel exhausted all the time and sometimes I can't even get out of bed because my limbs feel too heavy. I barely sleep anymore. I've stayed awake for 7 days. I've lost all enjoyment in food and have to force myself to eat. I've lost a lot of weight. When I eat it causes worse stabbing pains and I bloat up and have trouble breathing. I was an Author and have now lost my passion for writing. I can't think properly and am often confused and my memory is bad.
I saw a new doctor (Doctor Y) because I began to get a sharp pain in my vagina and up into my stomach. She thought I have a urinary tract infection and the antibiotics didn't work. I was sent by her to the hospital. They tried to get my pain down, which was quite severe. I was there for nine hours and they couldn't get my pain down and sent me home anyway, after my urine and blood tests came up clear. I was put on some Endone, which did nothing to help me, but he doctor wouldn't put the dose up so that I could continue to work. She tried Tramodol, but it also did not work well. She send me for an ultrasound and CT scan and it found that my ovarian cyst was now 11x10 cm. The kidney was worse.
She sent me back to the hospital and they admitted me to the Gynocology Ward. I was there for days and then sent home again. They were concerned that my cyst might twist and cause me more agony. I was not put up for surgery.
I could no longer go to work and Dr Y sent me to the hospital again. They admitted me and I was finally booked for surgery. They also would not take out my uterus, though I am almost 40 and will definitely not be having kids. They took out two cysts (I'm not sure how they missed the presence of the other one on the scans), with the second one at 6 cm large. The ovarian cyst had indeed twisted. No fibroids were found. I told them that I could still feel the agonising pain that I went into hospital for, but now it was worsened by the surgery pain. I was in there for a week and a half and sent home, despite having a pain score of 8/10.
The pain was still all over me, though the surgery pain is healing nicely. The doctor found that I had an infection in my belly that the hospital hadn't looked at before discharging me and gave me antibiotics.
I was admitted yet again by my GP for the pain. I kept getting passed between the Gastro and Gyne doctors and because I was placed into the Critical Care Ward (Because neither Gastro nor Gyne wanted to take responsibility for me), I became forgotten in hospital for several days. No doctors came and neither did the Pain Centre, though the nurses said they kept calling there and also the Gasteo and Gyne areas. The the Pain Clinic thought I'd gone home and was visiting them as an outpatient, when I was still laying in a hospital bed. Doctors did eventually come and by then I couldn't eat solids anymore and was surviving on milk, juice, and mashed potato. My stomach was greatly bloated and I felt exhausted all of the time. I could no longer eat solid food and the hospital dietician put me on milk, cream, eggs, and some shakes. Anything that hits my stomach brings fresh pain. The Gynocology department has emphatically told me that I do not have anything wrong gynaecologically. They did not see any Endometriosis. I am seeing the Pain Clinic and they have allowed me to see the Endometriosis clinic, though they don't believe I have it. If I don't, then I'm not sure why the pain feels the same as it did in 2009. The Gyne doctors gave me to Gastro. They came and I was sent home with vague assurances that an Endoscopy and Colonoscopy would be done by some stage.
Dr S (Yes, the same one who misdiagnosed me before) said that he'd replace my Mirena, which appeared to have failed. He was confident that this would fix all of my pain, so I eagerly accepted the offer. I honestly never felt any relief from it being in there, though I am grateful to have had no periods since 2011. I was admitted into day surgery three days ago. They put in a new Mirena and did an Endoscopy and Colonoscopy. I woke up in complete agony. The sort where I was literally screaming and begging them to help me. The agony was at 10/10 and I felt like swords were being thrust through my stomach. Because I couldn't stop crying and the pain was so intense, they kept moving me to different areas (They told me to cry quieter and that I was disturbing other patients). They tried Endone and Buscapan and even shots of Morphine, but couldn't get my pain down.
They moved me to the Gynelogical Ward after six hours of the agony (And still screaming for someone to please stop my pain and help me) being unabaited and into a room with a pregnant woman, who was upset by my crying and being in pain. I was scolded by the nurses who said I was being too loud and upsetting the mothers and their babies. They sent for the Pain Unit to help me, but it was cancelled and a doctor who had been at my surgery came and examined me. She said that it was just the gas they'd put into my stomach and that I had a history of being in pain and having issues. She also began asking me if there was stress in my personal or work life and asked me if I had any hobbies and friends, or unsupportive family, and she was clearly trying to pin my pain on psychological reasons. She was very unsympathetic and left in obvious disgust, then had me discharged after only an hour of being put into the Gyne Ward. The nurse said to go to Emergency if the pain was no better. My parents helped me get home and the nurses spoke to them as they wheeled me out in wheelchair, as I could not walk or stand. They stressed that the pain was only gas and that my psychological state was making it all worse than it actually was.
I had to take double my painkiller dosage to even get my pain down a little (I am on Tapentadol 200 mg, OxyContin 10 mg, Targin 20 mg). I had a good result from Morphine and Ketamine in the hospital after surgery, but that was by a drip and PCA and I couldn't continue being on it out of hospital. The doctor and pain clinic won't put me on a higher dose of Oxycodone or try some new medications. I told them that I don't care what I'm on, as long as it takes my pain. I have not slept all night and my pain has dropped to only about an 8.5/10. I fainted this morning when I went to the bathroom and I only seem to get relief when I curl into a foetal position. I hurt everywhere. It's been DAYS and my pain has hardly gone down. Surely any gas in my stomach would be long gone?
I am doubled over most of the time and spend much time in bed, though I do get up and walk around. Cleaning my house is impossible and I've now been off of work for four weeks. I have no income because I have no sick leave or annual leave. I'm trying to get Centrelink, but HR at work is taking their time filling out the forms to prove that I work for them, so that I can get Sickness Allowance for a while. My family is helping me to pay for medication and food, but it's taking its toll on them.
I don't know what to do anymore. I can't seem to get the help that I need and I can't prove my pain to anyone. Blood tests and scans show little. They think it's all in my head. I am going back to work next week and I honestly have no idea how I'm going to cope, but I have no money and need to pay my rent and bills. The Gynocology and Gastroogy departments have washed their hands of me and I know that going back to Emergency will do nothing. I'm almost 100% certain that I have been given reputation for being a drug addict looking for a fix now, because the low doses of opioids do not work on me. When I was in Recovery after my last surgery, they told me that I have an intolerance to opioids. This information doesn't appear to have been put into my file. I do not want to have to take painkillers for the rest of my life, because they can't find what's causing the pain and put me onto the right type of medication. The hospital always sends me home just as bad as I went in, when blood and urine samples show nothing. I am utterly miserable and in agony and I am NOT COPING. I'm scared that something is really wrong with me.
Thank you for letting me get this off of my chest. I am so glad to have found a place with other people who have pain like mine and I hope that we can help each other cope.
arjay replied the topic: Chronic Pain All Over My Body For Most Of My Life
After over a year on this site I thought I had seen everything about medical abuse of our members and I find it hard to feel sympathetic to Doctors who seem to have lost the Hippocratic oath when they started to practice. Occasionally I came across one who is so far above the others its a pity that they are so difficult to find. My experience with over 60 years of seeking help from the medical profession is not one of high praise,apart from a few that I have been treated excellently and professionally
Blaming the patient when they dont know or cant be bothered is all too prevalent if they cant diagnose a problem. As a manager of people over 30 plus years many would not hold a job in business for long.
To tell you to "pop a few babies" Irresponsible,dispicable and I think is possibly gender abuse.
There are many problems in the health industry in the training and treatment of Doctors and lack of time and resources but that does not mean they can take it out on their patients.
I have never taken my problems out on my staff,ever.
As a brief read of your post it would seem that seeking treatment elsewhere would result in less trauma for youself if this at all possible,Sydney or Melbourne etc.
To say its all your head when your body is bruised, your kidney is damaged etc etc is probably typical of many of our members experiences with their pain issues.
Its unfortunate that world wide usage of opiods to treat chonic pain rather than acute pain where it has less tendency for addiction is now practiced by many in the centres i go to and also in phamcies.with reluctance and disbelif towards sufferers. If they could be less aggresive and more helpful in offering alternative our suffering would not be further inflamed. But such is life at the moment.
One of the areas I am looking at the moment is called the microbiome,it studies the bacteria of the digestive system and its function towards good health. The effects of antobiotic drugs etc on the food as we process it from beginning to end and affecting our ability to get the nourishment we need and the removal of the rest.
As a thought faeces and urine are the bodies way of elimination toxins and bacteria from us.
One of the things I thought reading your post is that as your food is being processed through your body and not being eliminated for some time these could possibly be saturated up in your body and be recycled when they should be eliminated.
Maybe a gentle look into a diet that can assist your body to defacate more regularly may assist in getting your body back to better health.
Anyway these are just some thought which you may like to consider,as always my heart goes out to all who suffer
God Bless Arjay/Ron
Ps keep posting others may have suggestion and support
1 year 7 months ago - 1 year 7 months ago#26838by ToddH
ToddH replied the topic: Chronic Pain All Over My Body For Most Of My Life
I had the same thing as you - same responses etc. It happens to everyone they can't work out.
Then I had a motorbike accident and had crushed my spinal nerves which is agony. Again they kept telling me there was nothing wrong with me. (They can't see nerves) It took 8 years to find out I had crushed my spinal nerves. 8 years of absolute agony - had to give up a great job .
To get to the point. A friend of mine is a medical specialist in another area. She lives interstate so I rarely see her but when she saw how much pain i was in she was shocked.
Her advise was to go and see an anaesthetist. They are the only specialists who learn about pain. I found a miracle specialist who was the first one to diagnose me correctly. Both my shoulder and vertebrae were crushing my nerves 24/7.
If I were you I would find an anaesthetist who is experienced and see if he can correctly diagnose you. They believe your pain. My Pai Dr also treats migraines. I've seen a person in terrible pain with a migraine walk in and walk out in 30 minutes laughing.
If i were you I would look up one who treats migraines - my Pain Dr's name is [Removed by Moderator]
He's on the Gold Coast. So I would look up the procedures he does and try to mimic a pain doctor anaesthetist who performs the same procedures in Sydney. I would't try Canberra again. Word travels too fast. Start from the beginning. You can use the stuff you wrote here but take the bad things you said about Drs out.
Tramadol is not a nice drug. See if you can get Oxycontin or eve morphine although morphine isn't as strong. Does't matter if you get addicted, aything is better than 24/7 pain. If you message me I'll give you the name of a med that ca really help you come off the painkillers but please keep it quiet. Seems when something works they withdraw it.
Now I always write down exactly what i want to say before I go or I forget. It also helps if it's in time order. They aren't scared to give you pain killers or send a letter to your GP telling him/her what to do.
Movicol has't worked for me for years. I use Ducalax. Just be careful with it as it's really strong and can give you stomach aches.
You know you are strong from the pain. Please find an anaesthetist. I know they try to make you think you are crazy. You aren't. Please take this advice. it's the best advice i've been given. Good luck. Lysette.
Last Edit: 1 year 7 months ago by Peter. Reason: Posting of a Doctors Name.
Peter replied the topic: Chronic Pain All Over My Body For Most Of My Life
Thanks for the great information. I have removed the name of the doctor from your post, because we can't put their names up in the forum if they haven't given permission. What people can do if they do want to know the name of this doctor, is to send you a private message, then you can tell them.
Thanks for helping out those in your area who might benefit from seeing this doctor.
I wish the ring (this Chronic Pain) had never come to me. I wish none of this had happened. (Frodo Baggins)
So do all who live to see such times. But that is not for them to decide. All we have to decide, is what to do with the time that is given to us. (Gandalf the Grey)
Johnno replied the topic: Chronic Pain All Over My Body For Most Of My Life
Sorry I haven't seen your post earlier all I can say is WOW who have you upset ?
Look a lot of your problems are foreign to me as I am a fella but I could suggest that you search for a brilliant female gynaecologist (I hope that's right) we have some extremely knowledge members who may be able to suggest a brilliant female (plumbing)specialist.
If a man had suffered like you have he would be still sitting in the corner drooling and babbling incoherently so I am in awe of your strength.
Be patient someone will have an idea I hope.
I still can't get over the attitude of some of your doctors as if having a few babies could alter the pain you are in ,have you thought about contacting your local member of parliament and have a good chat with them about your pain etc and ask them to check it out and see if they can possibly help or give you some advise,but ensure you talk to women not men
as long as I wake up alive I'm happy
Because it could be worse
1 year 6 months ago - 1 year 6 months ago#26970by rosee62
rosee62 replied the topic: Chronic Pain All Over My Body For Most Of My Life
Oh my god... I am SO Sorry you have been put through so much! Both by your body and uneducated/uninformed doctors!
I have a history similar to yourself although I'm years down the track from dealing with the misery of finding the right Gynae specialists. There are some fabulous groups with more information on Endometriosis and co-morbidities that I think can really help you.
I can see three current major issues you need to get on top of (I say you, as ultimately we have to be our own health advocates - our doctors just won't do it for us).
1. - Significant bowel/digestion/elimination issues. This needs to be followed up ASAP - if you can't have toxins removed from your body you're always going to be worse off at the very least. A colonoscopy and gastroscopy needs to be scheduled. You need to chase this up.
2. - Gas pain from surgery possibly; where is this pain specifically? You use the term stomach a lot when it seems you may mean lower abdomen. It is very common to have gas pain following any surgery, and if your nervous system is sensitised (which I believe yours is) then the pain would be amplified unfortunately. This eases in time with movement despite the pain, and hot compresses (gas pain).
3. - Endometriosis. You need to get in to see a specifically trained specialist in Excision Surgery for Endometriosis. Get your medical notes and pictures to this new specialist for them to assess. I cannot emphasise enough how little is known about Endometriosis, and all the forms it takes visually. Was your surgery done with laser? Was the word excision ever used with you?
There are a limited number of specialists that are recommended for Endometriosis in Australia.. you want to get the right one on your case.
Also, I recommend reading a book called 'Explain Pain' - your pain system has become sensitised by now which means that any pain your body would experience is amplified. This would be a reason also why lower amounts of pain medication doesn't work. Research the terms Hyperalgesia and Pain Sensitisation.
Ultimately, please know that you Can feel better than you are right now. There is a lot to be done & organised.. but you are now on the right track. xo
Chronic Pelvic & Back Pain Injury
Last Edit: 1 year 6 months ago by rosee62. Reason: Grammar