Primarily Pelvic Pain........Anyone Else?

Discussion in 'Fibromyalgia Main Forum' started by kristaemoser, Sep 11, 2003.

  1. kristaemoser

    kristaemoser New Member

    I have been diagnosed with fibromyalgia only last year. I had Endometriosis for years and years. I was first diagnosed with that back in 91. I have had 6 laporoscopies, two beautiful baby girls, 1 hystorectomy and ran one marathon. I am not sure if all of this is what has created my chronic pelvic pain, or whether fibromyalgia is what I had when I had all of those laporoscopies. I know that my muscles have hurt for a long long time, but never as bad as it is now. I actually had the hysterectomy for this very same pain. Two weeks after my hyster......by the time the drugs ran out. It came back. I hid the pain from my husband and friends because I thought they would either think I was crazy or a druggy. I finally had the self esteem to tell them that I am in horrible pain and really really hate the pain meds. I think it is funny that anyone would want to abuse this horrible medicine. It does not make me high! it makes me tired and depressed. But I know without it I would be on disability and would not be able to share my life with my kids and family. I owe it to myself, to my family and to my job in that order to take the crap. I would like to talk to you all about the different medications and symptoms that you have. I am very happy to have found this site and look forward to talking about everything with people who understand. I would also like to speak specifically to anyone that suffers from chronic pelvic pain as a result of the fibromyalgia. I wish everyone pain free days. Krista
  2. moose1070

    moose1070 New Member

    Krista,
    I know all to well what your talking about, I myself have had a total of 9 surgeries all female, my last one was a total Hyst. in Feb. 2001, I had four tubal Preg. Endo. and out of the nine surgeries 8 of them started out as laporoscopes but ended up having to be cut open. I to had the Hyst. to get rid of the lower back pain and pelivc pain and also like you after the drugs wore off the pain was gone for abit but came back, I suffered afew UTI's and kept telling the doctor something was wrong but they chalked it up to hormones! Then my husband took ill in Nov. and we spent Nov.- Jan in and out of the hospital and there was alot of stress put on me, after everything setteled down in March I looked up the # of a pain management doctor I use to see for my pelivc pain and gave her a call, it took to visits and I later found out the team of doctors in her office a roomey and noro research Fibro. and on the second visit I had been DX and had an appointment with a Nero doctor as well. Ive had afew MRI and they still think there may also be an underlieing DX as well, like MS or something because I have been having pains in my legs, I have to see her tomorrow. Im getting better pain management with my Nero doctor now and she is very good to me. What meds are you on and do you see a romey or Nero. yet? Im glad to see you here, I have not found anyone like you on this board, it seems we are coming off the same boat!! what other syptoms to you suffer? Keep intouch, id like to know how things turn out for you? sorry, I think I just gave you my life story.
    moose1070
  3. obrnlc

    obrnlc New Member

    hi krista and moose!
    i had the same deep pelvic pain and burning, aprox every 6 mo. for years (always thought it was gyne. related) and had numerous gyn. workups. Diagnosis? I must be nuts! Finally the pain got so bad i switched gyn. and she did a lap to see what was in there, then followed up with complete hyster. and ovaries due to endo and fibroids. Problem was, i always had endo and fibroids, and it never really bothered me--all pain came back right after surgery, not until it hit my legs and became widespread all over that i even heard of fibro! I have "talked" to other girls that have had the exact same thing, apparently fibro often starts in this area (right groin for me) because of a muscle called the "iliopsoas" (sp?) muscle. So, i am sorry to hear of your pain, but it does seem to "validate" all the crazy symptoms when you hear of others in the same boat! At least we don't have to deal with periods anymore! Also, i NEVER had pain when i went to the gyn. office, because the last thing most women do before going to the gyns. is soak in a hot bath! live and learn, huh? Take care and feel better! Laurie
  4. Misdiagnosed

    Misdiagnosed New Member

    Just reading your posts - and I think 'obrnlc' mentioned something VERY important - the iliopsoas muscle. The fact your problems have a focus, the pelvis, points strongly to this being the key problem.

    I've had unbelievable problems because of this muscle. My left psoas was short and tight and caused my right side body muscles to rotate to try and achieve pelvic balance, then due to emotional stress I had a hip spasm and the muscles got locked - they wouldn't return to normal. I was unaware of the rotation other than feelings of tightness. My masseur said it probably took about 10 years to get tlike that .And it's taken me nearly 3 years but I'm undoing the mess. And it took a very cluey body worker to diagnose me. The twisting was doing crazy things to my whole body as you could imagine. Doctors had no idea what was wrong and it was only in Nov '02 that the problem was correctly diagnosed.

    I urge you to get your iliopsoas muscles treated - they are a major cause of pelvic pain.

    Kind regards
    Gill

    You can get your psoas muscles treated - it needs stretching and lengthening on both sides. Find a good bodyworker who knows how to treat the iliopsoas.
  5. Dree

    Dree New Member

    Hey Krista....
    Wow, if I didn't know better, I would swear I wrote this post. I was diagnosed with FM Nov '02, but have suffered much longer. I actually told my pharmacist the other day, this (pain) is my life as I know it...I was diagnosed with endo back in the early 80's. Not much was known about it then and it got pretty much the same "attention" as fibro does today. The "it's all in your head" thing...My ob/gyn was pretty good to me though. It was the outside world that was less than forgiving. But, thanks to many surgeries,(like you) fertility docs and treatments, several miscarriages, and...LOTS of money later, I was blessed with 2 beautiful daughters...(gotta love those petri dishes, lol)My oldest is 16 now, my youngest 13(her twin did not survive). I had a complete hysterectomy when my youngest was 3 months old...2 months later an emergency appendectomy and a year later, another lap to remove endo from my bladder. I've since had 2 more laps for adhesions....I definately think endo is a predecessor to this or vice-verse...I've read things that imply there is a definite "possible" link to the two......But, in answer to your question....my pelvic pain and lower back pain have been my primary "pain" complaints.....I've discussed with my doc on several occasions, having another lap done to remove scar tissue. My theory...won't it eventually lead to more scar tissue?....That's how it all got there in the first place ;-)) So, right now...I am trying to avoid another surgery at all cost. I've had enough to last me a lifetime and more than some will ever have in a lifetime.......As far as other symptoms go and the wondering question of this being a "progressive disease"?...Everything you read, says it is NOT progressive, but they didn't ask me..lol....I do however, think you reach a sorta plateau...For me, it was always the pelvic and low back pain....In the last 4-5 months, I've had to trade my "new" (what I thought was comfortable) bed, for my couch...because of pain in my hips.....Pain in my legs, for now is tolerable, but annoying. Thankfully, I have a very mild case of RLS....I also have IBS and costocronditis. And, it goes without saying...I never sleep..or at least restfully......Today, after being in an almost 3 week flare, I woke thinking.."yea!...no pain (or very little)...got in my car to buy groceries(kids complaining NOTHING to eat...lol) and my chest felt bruised and had the weight of 2 elephants sitting on it....So, I guess "pain" is always there. Some days, just not as bad...and never in the same place....Oh...forgot to add the hypothyroidism in my list *grin* and the nice goiter that comes with it. Thankfully, that is controlled with my meds....Only other meds I take...ambien , my estrogen and Panlor (for pain, which I think is along the lines of Vicodin)...Doc had me try the duragesic patch, which really seemed to help painwise, but I couldn't get the darn things to stay on, plus they are costly. Other drawback...pharmacy was always out of them......Guess, I am fortunate in the "low" amount of meds I take. Wish I didn't have to take any, but if they allow me to function (half-way normal)...then I will do what it takes. Like you...I don't get a "high" from them and they tend to make me a little tired. Why would anyone choose to feel tired or depressed?......
    Anyhoo...sorry this ended up so long. I tend to be kinda long-winded (southern thang...LOL)...Big yes on the pelvic pain....so I completely understand and sympathize with your pain......Nice meeting you and look forward to more. I'm a "newbie" here and your post was actually my first post to reply to....Take care and hang in there. Hopefully they will find something soon for all of us....
    Warmest hugs
    Dree
  6. jadibeler

    jadibeler New Member

    I posted a message myself this evening regarding pelvic pain, although the word "pelvic" was not in the title. The answers I'm getting suggest the same thing - the psoas muscle (as well as polycystic ovarian syndrome). Funny thing, "psoas" was one of the words I paid special attention to learning when I was training for medical transcription, due to the silent P, but I never really knew what it referred to.

    Since I need a full gyn exam by now anyway, I'll look into that first. As for a bodyworker, I just met a local theraputic massage therapist and she's been helping me via e-mail with supplement ideas. I'll check her out as a bodyworker if the ovarian cyst theory doesn't check out. I'd sure prefer massage to surgery!!!

    JoAnn
  7. Susan07

    Susan07 New Member

    I had a colonoscopy this past Monday and found out I have diverticulosis, little pockets in the colon (like small hernia's). After doing internet research I'm thinking this could be some of my pelvic pain.

    Pain free days to you too
    Susan