Here is my history, I beg you to read this... I know it is long.
When I was 17 I went blind in my right eye. CCF (cleveland clinic) never found out why... they diagnosed ON (optic neuritis) but just - after 10 years - ruled out MS. However I have been reading that MS can still be there in the spine... However a lot of people have said LYME could be the problem or ADEM. Either way, I have not received much in the area of diagnosis. I FINALLY have a very kind and caring PCP physician and she orders tests that she can deem medically necessary since I have no health insurance right now. That was my first problem.
Life has been tolerable but throughout since I got my period at age 11 I have had extremely HEAVY menses and lots of pelvic pain with bleeding and sometimes without. I also have excruciating pain in my legs when I began my period. I mean I would wake my Mom up at 3am to stand on my feet - that was the only thing to relieve it. I delt with it by taking Tyelnol almost every single night from that age on...
Other than that, I am healthy but last year this time of year I had meningitis - they never did a TAP and it was ruled (probably due to the fact that I didn't die!) viral, even though I had a high WBC in the ER... they did not test me or consider meningitis until I saw my old PCP (She is still a good doctor, but not right for me, I still would recommend her though.) - I have been suffering since then. I had vertigo for about 3 months straight and could NOT drive or leave my house. Once I was finally able to get back to life, I literally forced myself into working out - I got on a strict regiment of juicing fruits and vegetables and worked out 5 days a week. The vertigo started getting controlled... However, it came back mildly in October when I restarted my BCP. (ovcon 50) THEN in January of this year, I was hit in the kidney VERY HARD... I toughed out the pain and kept walking and working out on it, I thought I am not going to go back to bed for another 3 months for ANYTHING! But the pain got worse and worse and I peed blood at the end of Jan... they said possible kidney stone, and bladder infection. Well since then I have felt AWFUL. I have had a lot of spotting and bleeding between periods, bleeding when I am not supposed to, and it has gotten worse and worse and the pain is back again in my legs and my pelvic area. But it is EXCRUCIATING. I was given Hydrocodone 5mg and 500 Acetaminophen. It helped a little. Well as time went on, my PCP said this was a gyn issue, so asked me to see my GYN and she said, Endometriosis and ordered several surgeries to be done. I was finally able to function again when they gave me medicine for the pain... about a week before surgery the Nurse who handled any refills said I could not have the Vicoprofen and started to accuse me of med seeking - this is completely INACCURATE. I never refilled before I was allowed and I never took at a higher dose than my dr prescribed, and I followed instructions as completely stated in the pamphlet and always kept track of my prescriptions. This ended up screwing everything up... the dr did not call in my BCP and I started my period again, in just a span of 20 days I bled for 20 days straight because of this. I am in the process of trying to ammend what was put in my chart because it is not accurate - the nurse wouldn't even let me speak to the dr... I said now I am not comfortable continuing with surgery with that team and so I cancelled the surgery. I do not understand what just happened and I am in SO MUCH PAIN I cannot function. It SUCKS.
I am 28 years old, and a lot of times dr have said "at your age, this medication can be a problem" but if I am old enough to have this type of pain, and to just go randomly BLIND in one of my eyes and never have it explained, and old enough to be bleeding almost every single day of the month, then I am old enough to have the proper treatment!
I am now in pain management but the pain is not being managed. I have been given Cymbalta and that night I had suicidal thoughts, trouble breathing, and my arms went numb. I stopped it. They gave me flexeril and I sleep 12 hrs on it and it barely takes the pain away at all - it just really helps me to sleep... and that is a problem because of the pain. What do you do when you are in legitimate pain and you cannot get proper relief? I am being treated like an addict but I have absolutely NO HISTORY of it - and absolutely NO REASON for them to even think that I was abusing my medicine - because I wasn't! - I still have to live with my Mom because I cannot function enough to maintain a full time job right now because of all the bleeding and all the pain and the vertigo that still comes and goes.
WTF IS GOING ON??
They want to do a pain block, possibly - but it has steroids... and I am not very good with them since they have aggravated my eye in the past as well as my body... I am not closed to the idea of doing one, but how will they get to the root of the problem if they just block the pain?? And what will I do when I bleed??
We are talking pain where I am on the floor of the shower and it feels like everything inside me is going to fall out... pain in my legs where it feels like someone is setting me on a table and ripping them away from my body. I just cry and cry and I am sad I am missing out on the best times of my life because I am not being given proper relief, and I have to see different dr almost every other day... I don't know what is going to happen! I don't know why any of this happened to me in the first place! They never can give me a diagnosis other than they will try to say I am depressed, -- I AM NOT - when i am it is because I am so frustrated with my pain and that I am not being diagnosed or treated!
I am at my wits end and I have no option of going to another medical facility since I have no insurance. I cannot get insurance until I get a full time job and I cannot get a full time job until I am out of pain and not bleeding.
Well I got a new GYN and she completely DISAGREED 100% with my other GYN. She still thinks it is endometriosis but does not want to do surgery - says that it can impair my fertility.. that there is a risk of being in MORE pain afterwards. She suggested Lupron which I flat out said no too - WAY too many side effects... but she also suggested that we try Mirena - I am considering that but a little weary because she said I will for sure be bleeding for 6 months... I cannot lose another 6 months of my life. And the bleeding causes pain. I go through almost 90 tampons in 1.5 weeks. I have to wear lightdays every day. It SUCKS. She is going to try a lower dose BCP and then use it without the withdrawl pills after 3 months...
What do I do?
She wants me to see a pain management (already am) - but she said see a pelvic pain SPECIALIST... I don't know why but they pain clinic will not pass me to another dr unless the dr signs off on me. He has never given me a drug that even helped me. I have seen him one time, and see him again Monday. I just need some relief for when I am bleeding. It hurts a lot. It really does.
What do I do?
What is going on in my body?!
sorry for the frantic post but I am in so much pain I don't know what to do with myself and I feel like it is falling on def ears.
medications prescribed - now stopped: Vicotan (changed to Vicoprofen by GYN due to rebound headaches from Tylenol (have history of migraines) - SHE upped my dose and suggested taking 2 of my PCP's prescription which I denied willingness to do because it is not how dr prescribed it. So she switched me to Vicoprofen and said "you can even take 3 of these if you need to" AT A TIME - up to 8 a day! I never EVER took that much. Prn was 1-2 tablets every 4 hrs.
30 mg - Idk why I was given this, I reacted HORRIBLY too it. If there is an issue with depression, I would rather do talk therapy than put these meds with so many SIDE EFFECTS in my body.
medications prescribed - now taking: Flexeril
What WORKS: both Vicodin and Vicoprofen worked - Vicodin didn't work as well because of the rebound headache, Vicoprofen worked very well but made me a little moody. But I was able to function very well through the pain.
Flexeril works minimally for discomfort, but not pain. I believe more for sleep than anything. However, it is a 12 hr sleep I cannot stand and it gives me a TERRIBLE headache and makes me very tearful.
Ibuprofen (but my stomach is getting torn up)
all OTC have to be taken at MAX dosage for the entire DAY to even be worth taking at a time... so it is almost not even reasonable to take them.