It's all my head?' Really?!!

Since I've posted so many times I'm going to gloss over the gory details. The basic gist of the story is chronic pain that my doctor has no idea how to explain and/or treat. I've been told over and over to find a new clinic. I would love to do so, but the area I'm in makes that very difficult. Therefore, I have stopped going to the doctor. My problem now is that...well, I don't do anything. I always feel like crap, so I just don't go anywhere. And when I am around people I do my ****edest to not show how horrible I feel. No one believed me before, and now it's that much worse. My best friend shunned me for doubling over in pain at her house, telling me there was NO WAY it could possibly be that bad, and after my doctor also not finding anything I just figured I should try my best to pretend it wasn't happening. But it IS happening! I just don't know how to deal with it anymore! Any advice would be appreciated.

Have you had a hysterectomy ???

Because before mine I had such severe pain - hospitalised 3 times with varying suggestions - pelvic inflammatory disease, ovarian cysts (septated so possibly pre cancerous), my bowel was adhered to my uterus so at risk of perforation.

I then had to fight to get my TAH and afterwards it turned out to be severe adenomyosis and now I'm totally pain free!!!

The pain takes over your life - so I really do sympathise with you and hope you get an answer x

I have not had a hysterectomy. I had a D&C/polypectomy in April 2012 and an ablation and diagnostic lap in May 2012. The ablation did make my period WAY lighter, which was the goal. No endo was found during my lap. I went to the doctor last month, a few months early for my yearly as I'd been having more severe pain than usual that landed me in the ER. They told me they were 99.9% certain that I had an ovarian cyst that either "had, or was about to rupture", but did not do an ultrasound to confirm. They gave me some pain meds and sent me home. I had a US at my doctors office which found nothing. They also did a CT w/ contrast, and that also found nothing. The day I went in just happened to be one of my worst days and everyone I talked to there told me how miserable I looked, but I went home that day with nothing but an rx for antibiotics that even my doctor was pretty confident I didn't need. After a long struggle with insurance I finally got them and they didn't work. I am supposed to call my doctor back after taking them to let her know if they helped or not, but she told me if it didn't work then she would schedule a colonoscopy. I don't want that done. Maybe it seems irrational for me to be so afraid of that after already having had the other procedures done, but I am. I never had issues with anxiety before last year, but now it's awful. Plus, I don't understand why. She said we would be checking for colitis, which I have none of the symptoms of. I don't know. I'm just tired and frustrated, and frankly feeling a bit sorry for myself, which is not my usual way of things. My kids will only be young once, and I'd like to be able to enjoy that but I just can't the way I feel anymore.

I haven't had a colonoscopy yet, but, if I was having severe pain, and my doctor wanted to schedule one for me, I'd do it. I do, however have great trust in my doctor. Imagine if you didn't do it, and a problem turns up later.. Anyway, I'd suggest another doctor, but I guess that's easier said than done. If you're concerned what your doctor will think, any doctor worth their salt should encourage you to get a second opinion if you want one. Just sayin'

I think if they are unsure of a diagnosis they do stuff to help rule things out.

My symptoms were triggered by having a Mirena coil (fitted October and removed 5 days later) I was hospitalised then and again November and February.

Each time I was given iv antibiotics and ultrasound scans, which found a variety of cysts each time they looked. I also had a colonoscopy, followed by a laparoscopy (that's when they found my bowel was stuck to my uterus).

I had my TAH in the June, after I refused to have an ablation unless my consultant could give me 100% reassurance my pain would go.

I totally sympathise with you. Hang in there.
My life (my husband and children's) was literally turned on its head for 8 months as I barely functioned in the home. At no time did anyone (gynae or general surgery) suggest it could be adenomyosis and none of my investigations found it.

Have they ruled it out for you??

Try to keep strong x

Oh! Honey, do I ever hear you!
6 years of symptoms that got gradually worse- pain, erratic and ever-heavier bleeding, urinary problems, bowel problems and other little "just not right" things and a doctor telling me that half of it was my imagination (my bowel problems couldn't possibly be related to my period troubles, I was just being more sensitive to it around my period) or just normal, though a bit early, hormonal changes... he was so offhand, so matter of fact, that I allowed myself to be convinced that it was just how my life would be until I finished menopause.... and then we moved from Montana to Oregon, I got a new doc and she instantly ordered imaging and bloodwork the second I yelped during my pelvic... turns out it was not in my head, I was not a wuss, it was in my uterus and I'd been a major freakin' trouper not to just take to my bed with a bottle of vicoden! (I wrote my former doc a rather nasty letter explaining what his cavalier dismissal of my concerns cost me)

I totally understand that being in a state with a limited medical community makes it rough to change providers but please, please find a way- do you have friends or family in an area with a better medical community that you could visit and get a second opinion....or a first opinion since nobody's actually tried to sort it out?

ReganCassidy, we have such similar stories! Each time a test would fail to show evidence of why I hurt, I would cry my eyes out! I would tell myself "there's nothing there, they say I'm fine, I must be nuts!". Then the pains would continue, some cramp-like, some deep achy constants or knife like jabs. Back to the Doc I would go!

I did try the colonoscopy/gastroscopy which showed no real bowel concerns but did show pre-ulcers from my constant Nsaid use. My family GP helped me pursue a surgeon for the hysterectomy because no other disease were found and I broke down in his office saying how my life has changed and pain control was a deciding factor in everything I did.

I haven't heard my pathology report yet (I'm 10 days postop LAVH). I would like to know what the reason for my pain was - we suspect Adenomyosis - but irregardless that pesky Uterus is gone!

I hope my lengthy story helped! In a nutshell, KEEP pursuing an answer/diagnosis! You deserve to live pain free!

Thank you all so much for your replies. I have not had an MRI (which I've read is the best tool for diagnosing adenomyosis beyond post-hyst pathology), but my doctor tells me that's not it. I'm still debating the colonoscopy thing, but am hoping to try to get a second opinion first. I'm not sure when or where, but we'll see. I really don't know many of my relatives, I do have an aunt in Grand Forks which is a larger city and closer to Minneapolis, so might consider that. On the good days I put it out of my mind and convince myself that it really isn't that bad and I should just stop "wasting time and money" on going to the doctor, but on the bad days I'm reminded why I'm still pursuing an answer.

Kathyr, I wonder sometimes about that too. Tylenol and Advil barely even take the edge off but it's better than nothing (I guess?) and sometimes I will take the PM version so if nothing else it will make me fall asleep. Delia, what did the problem end up being once they figured it out? Did you have adenomyosis as well?

Sorry about the tardy response, I just now saw this.

The problems turned out to be a rather large collection of fibroid tumours ranging from grape size to golf ball size, several polyps, a few fluid cysts (one of them lodged in my right fallopian tube) and adenomysis- the cysts and adeno were only confirmed post-op by the pathologist.... adding to my troubles was the fact that my uterus has always "reclined", tipped backwards a bit so that it put pressure on my intestines and bowels... thus, as my uterus became enlarged, the bowel troubles my previous doc said could not possibly be related to my cycle stopped being cyclical and became constant. Grrrr. Nope, was not in my head (Yes, I'm still pretty angry about the 6 wasted years and all the needless self doubt)