Mysterious pelvic pain without diagnosis

[pianoteacher]

I am 35 years old, and have been dealing with pelvic pain for over 5 years.  Initially, my PPO blew it off as irritable bowels....ran no tests, whatsoever, though.  Finally, after repeated complaints, referred me to my gynecologist.  My gyn was absolutely convinced that it was endometriosis.  He performed laproscopy and found nothing but an ovarian cyst, which he drained.  That was is Jan, 2001.  Problems have continued.  Pain is in the center of my lower abdomen, is there pretty much all the time, but worsens as I near menstruation (and sometimes at the time of ovulation).  Bowel movements are extremely painful, and I will tend to become constipated as I near menstruation as well.  Intercourse is also painful, and will sometimes leave me in so much pain the next day that it's difficult to even walk.  Tampons are not an option anymore, because they are so painful.  Menstrual cramps are so painful that it sometimes frightens my husband.  I do urinate more frequently than anyone else in my family, but I was never concerned about that until I began digging around trying to get answers about this pain.  I've had pelvic ultrasounds, transvaginal sonograms, and a colonoscopy, as well as several blood tests (couldn't tell you what they were at this point).  So far, everything comes back normal,except for a little bit of fluid in my abdomen.  I do have a retroverted uterus, but the doc doesn't seem to think that is causing all of this.  I don't know where to turn next on this.  Is it my bladder? My uterus? My small intestine? Or maybe something totally different?  Please Help!!

[painfulendo7]

A related discussion, Are there any women experience pelvic pain from endo? was started.

[Nobbit]

A related discussion, TO:ANYONE was started.

[ponch456]

I've had pelvic pain for the  past 3 yrs and 6 different drs later the last doctor diagnosed me with pelvic floor disorder/dysfunction.I sit all day at work and my pelvic floor muscles wont go back to the relaxed state and my pelvic area has pain 24/7,Doctors dont really recongize this condition.I found a dr at the Cleveland clinic that diagnosed this.I've been doing a lot of stretching excercises to stretch these muscles back out and going to a physical therapist to treat me internally.If you want to get the book "Headache in the pelvis''.This dr had the same problem and its his passion to help people his phone number is in the book and he will talk to you pesonally.He also has a clinic out in California to treat this condition,i havent been there yet! Good luck
                                                                                               Tim

[PainfulDaisy]

Hi I am so very happy that I AM NOT ALONE!!     I am 44 - 1990 I had an 8lb 12oz girl emergency C-Section-   In 1999 I had a partial hysterectomy(removal of left female organs- which found large mass between uterine & cervical wall & was removed as well)....   off and on I have had light spotting (when too much walking or moving furniture)  there has been pubic pain for the past 9 years.  About 3 years ago the severe pain returned on my left side.  Why?-theres nothing there!  Docs discounted me!   About 2 months ago I was lying down and thought I was urinating ... looked at my pants & it was blood!  Well that is NOT suppose to be happening!   Simultaneously, there was a sharp pain (felt like a sword) thrusting thru my lower left side near pelvic area went straight to my lower back.  Spottingh lightly for a couple days afterward.  Pain so bad tho I went to ER... CT scan/blood tests)white cell count off) Docs there discounted me as having a vaginal infection.   WRONG!!!   The doc I am seeing now is awsome.  She really wants to know what is wrong.  I have extreme pain 24/7 & when I turn over in bed.  However... too many blood tests scans & such... I have done my own research.....    There are many names for our problems  Symphysis Pubis Dysfunction.....    Sacroiliac Joint Dysfunction/ Disease.....   Musculoskeletal Dysfunction..... Piriformis Symdrome.....    go search these... GOOD RESEARCH SITE:::   www.pelvicpain.org         I am going to suggest these problems to my doc... see what she says.... sometimes we have to do our own research   WILL LET YOU ALL KNOW....

[rhea1603]

wow so many others out there like me. I started out with some pain without my period, 6 years ago had lap done and they cut off a cyst on my right ovary, and got rid of slight endometriosis. 4 years later pain returned, i just had my 2nd lap done 2 months ago and everything was fine he said. I was fine for 2 weeks after lap and than the pain came back in my lower left pelvic area stronger than ever. it comes all of a sudden and I fall to the floor and it hurts so bad i start to vomit, than i cant keep pain meds in my system b/c of vomiting and i end up in the er. gyn says nothing is wrong. something is wrong people just dont vomit over so much pain for nothing. I have been to the ER 6 times in 5 weeks. had every test done everything comes back normal. now tomorrow i go to GI doctor for colonoscopy. how do you deal with the extreme pain without going to the er when it happens b/c i dont want to live like this anymore, and i dont want to have to stay medicated. I need answers, my last option after GI doctor is exploritory surgery b/c Ive seen everyone else all ready and no one can explain whats going on.

[alwayssunny]

I too, have chronic lower left abdominal pain-however, I still have all of my organs, which have so far all tested "normal". The doctors are now suggesting a possible hernia but I haven't been to the surgeon to confirm this yet. Has this possibility been considered by your physicians?

[zitisue]

First I am a guy so I have no clue on woman plumbing. However I have had pelvic pain. Pretty severe. My docs first thought it was prostate and prescribed anti-biotic and oxycodone for pain. The tests that were taken were urine, blood, rectal digital. The funny thing here is that no one had a clue but now I was on a 2nd run of antibiotics. This gave me a wonderful oral thrush and yeast infection on top of everything. The docs uro and primary did not agree on a diagnosis. The uro said my pain was not prostate but here is a med just in case ( wonderful right?) The primary thought my prostate was enlarged where the uro said it was not. So the primary gave me meds just in case. Understand I am in severe pain and am grasping at any straws to rid myself of this because franky I could not sit for more then a minut without great pain. So I took the meds. After my second or third visit to Uro he said I should have a colonoscopy to see what else might be up there. Test results perfect. My colon doc said he also could not figure the pain out. I said to him that my butt was inflamed and could he look at it or in it. He did and decided to start prodding around to find the source of the pain. He found it. Its called Levator syndrom ( look it up) its like an inflammation of internal rectal muscles. It make sitting hard, bowel movements hard for a women it would make sex hard  etc etc. Treatment is hot or warm baths and anti inflammatories. This is brought on by stress. Whats funny here is that the colon doc had a whole write up on this and gave it to me. Yet at first he said he had no clue on whats causing the pain and if I did not ask him to go up there again we would still be guessing. he had no prescription treatment for this. i had to do my own research. I went back to Uro who said he was familiar with this problem and gave me yet another med. Thankfully I am about 85% better ( it takes awhile to heal) I can sit for longer stretches. I still sit on a pillow though...............Remember look up Levator ani syndrome.  OUt  

[hopelesslytired]

Have you ever been told it could be PCOS=polycystic ovarian syndrome.  I had several if not most all of those symptoms before I was diagnosed 9 years ago.  There are some methods of treatment available.  Might want to check it out.  My first time was presumed to be appendix b/c I was 16 when I ended up in the hospital thought appendix was going to burst.  Ended up being an ovarian cyst that had completely enveloped my right ovary and essentially killed (no blood to ovary) it.  They had to remove it right then & continued to have problems after a couple of years or so...then eventually ended up with hysterectomy at 23 (had one child at 20) and several surgeries to "clean up" in between.  Let me know if you wanna talk more about this!
hopelesslytired

[hopelesslytired]

OMG!!!!!  I am kind of relieved to find you guys!  I only joined medhelp to find answers for my condition b/c the 5 doctors I've seen in the past year have no idea!  About 2 1/2 years ago, I began to have severe and chronic pelvic/abdominal pain.  To describe where it is, it is sitting sort of 'inside" my hip bone on the left side.  Occasionally it hurts to the middle of the pelvic area.  For 2007, I had 3 surgeries in 13 months.  I feel like hell most of the time; my current doctor has got me on extended release morphine twice a day with Lortab for breakthrough pain which I have to make sure I count them as I take them so not to go over the maximum amount daily.  

Along with these 3 surgeries I have had numerous blood test that occasionally show an increase in white blood cells but nothing else.  I've had colonoscopy which turns out only minimal case of colitis--guess what-wrong side no symptoms.  I've had catscans no idea--thought possible kidney stone but nope.  

I have had a complete hysterectomy when I was 23 due to PCOS; I've had gastric bypass 6 years ago which was a great success--they've found no problems with that surgery....the last surgery in November 2007 was by my ob/gyn who is fantastic but still can't explain.  My symptoms had been so bad that I was completely nausiated, fever, pass out sick EVERYDAY!  He did laporascopy and took care of some major adhesions==some were "binding" as he said & now I'm not the nausiated passout hurting anymore.  However, I still have this same pain everyday all day continuously.  No idea to why.  I have no organs in that area--and ob/gyn got everything he saw.  He knew specifically the area of concern and I trust that he didnt' see a cause in that area.

I cannot function without the daily pain medication --believe it or not, I work, have 2 kids, husband, and finishing my bachelor's degree and working full time---I just don't like hurting constantly and people who know what's going on to look at me like I'm crazy!

I know my husband gets tired of me being tired and hurting all the time.  I probably "suck it up" and overextend myself but its only b/c I want to not bring him down or cause probs in our marriage (of 15 years).  Any help would be fantastic, just like all of you.  I am on Premarin hormones b/c no ovaries, no uterus; and they are good for me.  I can't imagine-just like all you--what can be doing this to me.

I have recently wondered (b/c I had the flu and was coughing profusely) if it could be some type of deeply imbedded muscle that has damage to it?????  Throw anything at me, I'd appreciate it & I'll watch this postings.  Thanks,
hopelesslytired

[UNNOTICED]

I HAVE CONSTANT BLOATING, RLQ PAIN OVER 5 YRS OR MORE, BUT GETTING MORE INTENSE. SENT ER 4 TIMES ? APPENDIX. TESTS ARE NORMAL STILL PAIN CURRENT 24/7, IT MAKES ME FEEL FATIGUE, MY INSIDES FEEL LIKE THEY HARDEN, THROBBING, BURNING SENSATION FROM PELVICE TO LOWER BACK, TO UPPER BACK ALL ON THE RIGHT SIDE, AND NOW STARTING MORE PAIN AND CRAMPING RT UPPER ABDOMEN AREA, BP GOES UP AND CRASHES...ETC...ETC.... BUT OF COURSE ALL DR STATES IT IN THE MIND. HAD 3 LAPRSCOPIC SURGERIES 3RD FINALLY TOOK A OVARIAN CYST. IT 1YR I AM STILL PAIN/CRAMPING/ BURNING SENSATION ETC..IVE BEEN TO ER SO MANY TIMES, ITS CRAZY...

NEED A SOLUTION....

[paininthers]

Add another case of pelvic pain, retroverted uterus, and being rubbished by doctors to the list.  I had a laparoscopy two years ago and had deep endometriosis removed from sacro-iliac ligaments and ovary.  Gyn then discharged me with no follow up, saying the problem was sorted.  Since then the pain has got unbelivably worse, and some days I can barely walk.  I also cannot urinate properly and now have to sef-catheterise daily or I get infections.  Last year spent a week in hospital with urinary retention.  From being super fit and a regular at the gym, I am now very weak in the hips, abdomen and legs, and nothing I do strengthens them.  Gyn only wants to see me if I agree to more surgery, which I will never do.  It only worsened my problems.  Can't tolerate hormones as had bad reaction to them in the past.  Seems I am just another hysterical uninteresting woman groaning about something or other in the opinions of doctors.  So many of us, such similar variations of the same problem.  Are we all just clinically irrelevant?  We are just supposed to carry on like nothing is wrong whilst incapacitated with pain and other issues?  I suppose I'm one of the luckier ones, they found the endometriosis, but it got me nowhere.  Seems I'm all better now, apparently.  Sorry for the rant, just needed to join in on this one.

[cllamonica]

I am currently suffering from pelvic pain as well, and I had a pelviscopy on last week. My doctor said that I should be better in 3 to 4 days, and if he couldn't find anythig during the proceedure, we would have to look at pain management. Of, course he didn't find anything and I am still in to much pain to return to work. Has anyone been able to get an update on their condidtion? Please help!  

[Piano3play]

The fact that so many of us have these symptoms shocks me and frightens me.  I am only 20 years old and ever since March have had noticeable throbs of pain in my uterus and ovaries.  This pain is never constant, instead it comes and goes.  For a while I wasn't having my period and so I attributed it to that.  But once I did have my period, after six months mind you, the pains still continued.  I'm treating another problem in my stomach and thus my doctor and I haven't given much focus to this problem.  I would be interested to know what pianoteacher finds out also, for maybe it will give me something to look for.

[pianoteacher]

Guess it took me a while to check back on this.  Sorry.  I have no new information, though.  I'm supposed to go for a follow-up to the GI doc in a couple of weeks.  I'm guessing they'll say they can't help me since there's nothing wrong with my colon.  Will post again when I know more.

[2miserable]

OKAY, BOTH OF YOU LET ME KNOW WHEN YOU FIND OUT WHAT THE PROBLEM IS!! I TOO HAVE PELVIC PAIN, FLUID, AND A RETROVERTED UTERUS. I AM GOING FOR THE TRANSVAGINAL ULTRASOUND TOMORROW..I HOPE THEY FINALLY FIND THE PROBLEM!

[Jakataer]

Pianoteacher, when you find out what's wrong with you, I would like to know myself because I just posted a comment almost the same.  I should have strolled through.  I am suffering from nausea, general ill feeling, pain during and after sex (it got so bad one time I was in bed groaning and moaning.  No matter which way I laid in bed, I was still in pain.  The only thing that helped me was to soak in a hot tub of water.  I had sex the next day, and I cramped like crazy), I have excruciating back pain (really bad when I'm sitting), my periods are painful and my back is really on fire then, I have a sharp throbbing pain in my bladder area.  They found fluid in my cul-de-sac, and I have a retroverted uterus, too.  Yet the doctor said what may have happened was that I had a cyst that burst, and that's why I had that fluid.  Other than that, she says I'm completely fine.  Well I'm not fine!  I feel like **** 90% of the time.  My pains occur mostly on my left side.  It's stressful feeling this way, and the doctors tell you that you're fine.

[pianoteacher]

The only surgery I've ever had is the laproscopy, which was done in an attempt to find the cause of the pain.  I am not on the pill.  I took it for a few months when we were first married, in 1993.  The side effects caused me to quit taking it (weight gain & abdominal cramping).  I was on Depo-Provera for a year and a half (1997-early 1999).  No other birth control since then.

[Pum]

Have you had any surgury.  If so it could be adhesions.  It sounds like endometriosis but sometimes pelvic pain is unexplained. Are you on the pill? that might help.
Good luck.