I had a colonoscopy in Jan, 2012. Doctor said everything was "fine". I went home and immediately began to "collaspe". Severe pain in my entire pelvic girdle. Hasn't stopped. My GI was useless. He took out a Bible and started reading Sciptures. I have been alone with medical care now. I already have a "Church"; I wanted help from the pain. No answers.I am living in a "nightmare". Been to ER's, hospitals, etc. Nothing. MRI shiwed "nothing" according to the neurologist I saw. He couldn't wait to get me out the door.
I am so desperate for help. I had to go on Internet. Closest match was Interstitial Cystitis. Six months later, no better. Dr. was worth nothing. Never returned calls or listened. Unfortunately, almost every gyno/urologist is in the same practice as she is.
I am so tired of just "existing". I looked forward to summer, but now I can't do anything, so it means nothing anymore. No garden, no beach. Nothing. I've been deserted by some family members, and all friends. The Dr. wanted ME to find "Pain Management Doctors" for her. I don't know... SHE'S the doctor, not me. I've gave up on her after about 3 months. I am devastated by the "lack" of care in RI. I missed my own son's wedding. I begged her and went to hospital ER twice. "Go see your doctor" was the answer. I am in so much pain, I want to die. It's relentless. It could be Interstitial Cystitis or not... I am so depressed. Beyond depressed... I found one doctor, but the appt. is in Sept. I can't walk now. My pelvis and adductor muscles (between your legs) hurt constantly. I barely sleep. The pain wakes me constantly.15 mins-1 hour is it. I went to another dr. I told them on phone what I needed. Do I have IC or not? Only real answers were from the ICA. I found out that there is NO specific test. She hurt me just probing manually. Hunner's lesions are the ONLY difinitive diagnosis, but they only appear in 10% of people with IC. So, probing me more is useless. I feel very strongly that this is no cooincidence that this began immediately after colonoscopy. The pain is beyond words. Mix that with Fibromyalgia... I am useless. My Primary Care Physcian is awful and accused me of being "an addict". I cried right then and there New "policy" he says. I may as well just die. There isn't one doctor in RI who has empathy or sympathy. Thanks to all the deaths from celebrities (RIP), stronger sanctions are being taken. I never even got "high" in my entire life. I am lost. Six months after the procedure, and nothing is better. I take probiotics and Miralax. I either use too little or too much. I am religious, which has no bearing ohn this, but I pray constanly for God to show me the "way". I cannot live my life like this. I'm 57. I had planned to take my grandson places, and do things. Now, I can't even see him. I am bedridden and don't want him to see me like this. Both my children neither bother with me or my husband. It is hard to stand, sit, etc. Icouldn't "walk the line" foot over foot w/ Neurologist. I could before, now I can't balance. So many people try so hard just to make it through another day due to illness. But, most doctors don't care. I've yet to meet one that does.I don't know what to do, anymore. I'm here, but not "living". Medical bills are through the roof. I lost everything I ever treasured; which was my family. I see a psychiatrist to help cope with pain. There is no doctor in RI that is actually "Pain Management" Most call themselves that, but all I have found and called just do cortisone shots. Not being able to walk is killing me. Cnstant pain is just as bad. I cannot hold on much longer. My husband's getting "care-giver" burnout & yells at me constantly. My life is over. Insurance requires I go to only places in RI. I don't know what else to say.. Please pray for me... God Bless you all.
I'm sorry to see that your suffering both w/ pain & lack of familial support. What I have found, only 6.5 yrs in chronic pain, that many just don't know what it's like. It's impossible to explain the sensation and that emotional bearing it has on your soul at times. Doctors, the good ones, are there to help but they too cannot imagine what it's like 24/7.
Much of family just kinda dropped me once they discovered the med's I was on. Maybe there was a personality change but I'm betting the pain causing me to loose it had more of an effect. I'm fortunate enough to have a loving husband who married me in this condition. But I hate the amount of stress it puts on our relationship. I can see it. Even when he says things are fine.
All that being said, a few things that I have learned in dealing with family, husbands, physicians:
Don't discuss med's you're taking w/ anyone. It's between you, the docs involved in your treatment, and the pharmacist
men like to fix things. Many times their annoyance is due to the things out of their range "to fix". I try and ask for help from my husband w/ things that are realistic for him to accomplish and succeed: e.g. helping set out medications, vitamins, supplements. He helps make new appointments.
Things he cannot do: diagnose me (I'm bad at this 1) complaining about symptoms (he is no MD, thus contributes to useless feeling). He cannot take my pain away, so I TRY to complain little about it. He is not my psychiatrist...when I need to vent its done here or in a PhD's office.
physicians are people too. There concerned about keeping there jobs (licenses) because they, too, have mouths to feed. They have to follow guidelines in order to treat patients with pain for no more than 3 months (sometimes less) if they don't have appropriate licensure
Physicians are fallable. What they gain in experience can sometimes go to there head, but most try to keep any open mind. Humble them. Prove them wrong if they are wrong about you.
There are always more physicians out there. You may just need to drive a little bit further. A resource for a finder I found on another Pain Board:
Gotta run now, but I'm here to lend an ear. Try your best with each passing day. Even hour. I know it sucks, but no matter how we think we are suffering, there is always someone out there who is suffering more. Try to surround yourself w/ positivity. Watch comedies. Read smutt. Do what it takes.
Ask your grand baby to come & visit but put a time limit on it. Maybe he/she can do a puppet show/performance for you (depends on age).
We cannot dwell on the things that have passed cause we no longer have the opportunity to change it. It's IMPOSSIBLE. There is nothing we gain but more hurt/sorrow. That's USELESS.
My best, B
Thanks for your Reply!
Oh my gosh! Bren Bren gave you extremely GREAT advice!! I saw your post on the other message board and I was appalled at the mean comments you received! You deserved a caring and compassionate response and I am so sorry that wasn't received on the other board. The responses to those crying out help on the other board have been very thoughtless, uncompassionate, and uncaring lately. So I am very glad you found this message board and found Bren Bren.
You are going through A LOT right now and I can't even start to imagine what it must feel like. I have been treated poorly by doctors in the past so I understand how that feels. But the pain you are dealing with sounds like too much to bear especially without medication. Please check out the website Bren Bren posted and see if you can find a doctor in your area that can truly help you. You may need to try to find a doctor in a neighboring state. I know many chronic pain patients that drive 100-200 miles just to see their pain doctor for their meds. If you do find a doctor that is not close, let him know how far away you are and see if you can work out a plan where you pick up your scripts every 3 months instead of every 30 days. The doctor can post date up to 3 prescriptions for Schedule II meds and then you just fill them when it is time.
If you aren't getting help from the doctors that are trying to diagnose and treat the problem, consider trying a completely different facility. Teaching hospitals are fantastic!!
Lastly, you are not alone when you say you have lost family. I have lost family too. I too think they ran away when they found out what meds I had to take to function. And I also believe that they don't want to be around people that are suffering, which is so very selfish!!! I would never do them the way they are doing me if they were the ones sick.
I'll be praying for you and know you truly have support from Bren Bren and I.
Thanks for the kind comments. Hopefully some readers can benefit from our comments and/or support offering. I doubt MPathia will be back, as you mentioned she was hammered on the other board. I dont know what to think of it but those who demonstrate histrionic behavior (which could be the reason behind an ejection from a psychiatrist's practice) tend to forget who they told what and deception snowballs. I hope I am wrong, but we will see.
I appreciate your contribution here. I really can't sit at a computer and when I created this forum, I had a functioning laptop. Now I'm resorting to mobile devices, which are hit & miss; thus my absence from WebMD for so long!
I was happy to see you're into engineering (did I read that right?) I'm married to an engineer. Which facet of engineering are you in?
I may start calling you A just to pin a name on ya
That was so sweet of you to write that for me. I know you're right about people not recognizing your pain and everything else.
I can't help "dwelling" somewhat... I try, but my children were so important to me.
That's what I cannot deal with. It has to be a "mother" thing...I've tried so very hard. I love them, they don't love me. I'm in a situation where I need support... I just get hurt. How can you stop loving your children? I can't... I wish I knew how
Thank you so much... Ididn't mean to do anything wrong. It is hard to do much of anything. I truly don't understand why people on a post would choose to be "mean" to ANYONE... I'm sorry... Thank you again, Bren_Bren & Anon_160307
I am on a mobile device right now so I can't type a long post but I wanted to drop and tell you that I will be responding with a more thorough response in the coming days. I did get some more info regarding the seizures I have been experiencing so I will tell you more about that in the coming days. I am hoping Thursday night I will be back on my laptop. Keep your head up. I know it is hard for you right now.
Hugs (( ))
PS: calling me A is fine with me. Actually my middle name starts with the letter A.
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