I am brand new to the world of chronic pain my name is Caroline and i am 34 i don't know where to begin but i want to share my story because i need support i feel very alone and scared.
It all started with my stillbirth my son died in utero at 22 weeks 18th of July 2012 his name was Michael it was a very traumatic experience that left me with prolonged pelvic pain, weeks after the birth i discover i have retained product and a D&C is required. After the procedure i continue to have pelvic pain so i see the top pelvic pain specialist in sydney he suspects i have ashermans and i have a hysteroscopy/lap he was right half of my cervix was blocked by nabothian cysts he removes it and says u can try for a baby at that point in time i was fuelled with grief and sadness all i could think about was having another baby looking back my body wasn't healthy and it wasn't the smartest thing to do i should have waited but i fell pregnant straight away. The pregnancy was fuelled with anxiety, stress and me being unwell and in pain for most of it. I was to be induced on the 18th of July 2013 the anniversary of my babies death. I remember going to the hospital with such a heavy heart but i could not imagine the events that unfolded next. I wa staking aspirin throughout the pregnancy because i have blood clotting disorders also i was taking vitamins as well so i ended up with a huge baby so when it came time for labour it just wasn't happening to cut a long story short i had a botched up epidural 3 spinal taps they had to put me under general anaesthetic and cut my baby out while i was laying there lifeless on the operating table. It's standard to give voltaren for pain relief after a c section well who knew that would be the reason why i am typing this today. a week after being discharged from hospital feeling very unwell suddenly i went to vomit and my upper chest froze up i had sharp pains everywhere i couldn't breathe my husband called the ambulance and i was rushed to hospital. At the hospital they did a MRI on my spine to make sure there was no damage from the epidural (fortunately there wasn't) although there was disc degeneration at L5S1 and i also had a CT scan showed up nothing they told me they couldn't explain the pain and that there was anatomically nothign wrong with me. Well they were bloody wrong i got sent home and started taking more of the voltaren which was making my situation a lot worse. About 3 days later i start pooing blood but i don't know it and then the next day i start vomiting up blood turns out i had two bleeding duodenum ulcers that had perforated and a contained leak at the small intestine i was 1cm off a perforated bowel. I spent 5 weeks in and out of hospital i would go in for 10 days at the high risk ward they would send me home next day i would vomit up blood and return back to emergency this happened a total of 4 times. i will never forget at my last scope i prayed to God please show them them the bleed so something could be done and he did they saw the vein pop out of the ulcer and gush out blood i was sent off for an angiogram where they embolized the vein. Over those 5 weeks there was a incident where i had a scope and the gastro guy saw soem blood but did nothign 2 hours later i start vomiting up fresh red blood in the ward the ICU button is hit it was crazy my hemagoblin dropped to 51 clinically i should be dead but for some reason God has spared my life.
I have spent the last 6 months seeing so many specialists and spending a ton of money i have nerve pain and pelvic pain from the c section i am also suffering bad abdominal pain from the perforated ulcers. The ulcers are now gone but i am left with scar tissue and i suspect nerve damage i am booked in to see a pain specialist at the north shore private pain clinic in sydney in March. I have 2 kids and everyday i cry not knowing how i am going to get through this. Noone can tell me if this pain will ever go away i am suspecting it is here to stay and i have to deal with it. I am also booked into seeing a psych for trauma treatment using EMDR.
You have been through a very traumatic time - I don't think that adequately describes it, but I can't think of anything else!
I a not surprised that you are really distressed and having two small children to look after would no doubt be compounding your situation. One would like to think that the worst is behind you now that they have finally fixed your medical issues. It doesn't give you too much faith in the medical system does it?
I think that you will find that once you get to the pain clinic, they will assess you and provide the appropriate all round treatment. You will probably feel much more supported than you do now. The psych. will help with your trauma too because I get the feeling that this is making you quite upset and that in turn makes your pain worse. Chronic Pain is a beast at the best of times, but when we get stressed, it rubs its hands together in glee and escalates. It's not fair but that's the way it is unfortunately.
I am sure that some of the others here will speak with you. You can come on here at any time of the day or night that you feel the need and post. Sometimes just writing stuff down helps. One of us will answer you when we see it.
I hope that you can hang in there until the pain clinic. Better days lie ahead for you, I am sure.
Not every day is a good day, but there is good in every day.
"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables
Welcome to the forum Caroline. It is a terrific place to take away some the complete loneliness and isolation of living such a harsh and harrowing life. I fully understand and empathise with you feeling so scared. You have had sheer horror experiences and your resolve has certainly been tested and....you have passed....congratulations and good on you
Even though it must be damn tough having little ones to look after, I am sure they will be a great source of love and pride for you also bringing you many moments of joy too.
I truly hope you have a fabulous husband, a great family and superb friends surrounding you, showering you with love and support, as you truly deserve that and more with what you have been through and continue to face daily.
I wish you well with the pain clinic, not too long for you to wait now. I really hope they are a brilliant team and look after you with genuine care.
Thankyou so much for your message your right i have truly been tested and yes i have passed but there are moments where i wish my life was taken in the hospital when my hemagoblin dropped to 51 then i wouldn't have to deal with all of this BUT i am still here so my life must have a purpose behind it my time isn't up yet...........
I wish i had supportive friends but alas i don't
My husband is a very nice person but he grew up in a family where the attitude was "stiff upper lip" you don't talk about your problems u just get on with it so no support there.
My family support me my parents are doing the best they can
Hello Carpedium, Your sstory brought tears to my eyes. You have certainly been tested by what life has thrown at you. But the fact that you are still battling on shows you are an incredibly strong person who has been through a lot of traumatic experiences and survived.
It must be very difficult to be faced with the attitude from your husbands side of the family. I too have inlaws who just jkeep telling me that i should just get better, which can be so hurtful. Its not like we enjoy being in pain 24/7. But i am glad to hear your family is supportive. Your hubby sounds like mine was before he was able to gain some insight into my conditions through reading and a psychologist who spoke to him about my needs.
He now has a greater understanding and we are learning to communicate a little better. He has been very supportive in the physical areas of my incapacity, but is still learning the importance of the psychological support . And it is still difficult for him to understand that one day i am capable of doing things and the next i am not, which is frustrating for both of us.
You will find support through the pain management course , and i believe the psychologist could help you deal with some of the traumas you have endured, as i have found that our pain stems not just from the physical , but also the psychological issues that we have. And these can increase our pain levels when we are upset or stressed
Support from others is here, and i have found just expressing our feelings here can help, as there are others here who you can talk to. We all share the burden of chronic pain in a variety of differing ways , but knowing you are not alone can help alleviate our sense of isolation.
I wish you good luck and please hang in there, there will be better times ahead.
Thankyou for your post it's nice to know there are people that understand I will hang in there 5 weeks left until i see the pain specialist and in between that time i am seeing my pelvic pain specialist on Monday and the gastroenetrologist on Friday ( I need a procedure done for my chronic anal fissure) terrified to be honest i am tired of procedures and surgeries but it needs to be done oh if only i could turn back time i would have done things so differently but alas life doesn't work like that and we learn from our mistakes.
Deep down though in my heart i feel so much joy that my family is now complete i got my daughter and son i so desperately wanted yes i had to pay a very high price for that but i am still hanging onto hope that my body will heal and i will eventually feel better over time.
I had my first psych appointment on friday it was awesome i loved it but the hour went very quickly I feel that would greatly benefit me in the long term i was happy that he validated that i had been through an immense amount of trauma and he thought it was extraordinary that i didn't even get a break it was just continuous trauma after trauma which compounded and unfortunately damaged my body.
Just wondering if anyone knows if teh pain specialists will be able to work out what is causing the pain if my current specialist (gastro guy) doesn't have a clue i really hope so i am so sick and tired of spending so much money and having no answers it is very frustrating
Thankyou so much for the love and support i am trying to just take one day at a time i have been watching the videos on this site and going through all the information.