chronic pelvic pain, no answers from doctors

[judgejud]

I am 31 years old and have three children. I have been having chronic pelvic pain for the last 2 years. I have not had a period for 9 years as I have been on depo injection for the amount of time. I have been from doctor to doctor with most telling me this is all in my head (hey I wish). A gynaecological doctor is finally see me and so far has done pap smear with the result being fine. (4 years ago i had CIN 3 and cone was done, this showed no HPV). He did internal with no results, and some blood test with both my WBC and CRP levels raised. My ca125 was only 8. He is now sending me for laparoscopy. Some how doctors have ruled out endometriosis as cause. I have swollen, bloated abdomal, it hurts sometimes with urinary and bowel movements, however I would not say this makes me feel better or worse. I am sooooooo sick of this and I am very scared as too what this may be, as all reseach is pointing towards ovarian cancer.

[flowersmithy]

Hi I am 38 years of age and have been suffering for a while now with absolute terrible probs below. I eventually went to the doctors because I had irregular bleeding. I am really frightened as I have been suffering for while with pain and I have nt been for a smear for years (naughty me). The doctor has tried to do a smear twice and cannot  because my body keeps rejecting the speculum and more worrying is that she cannot locate/find my cervix. I am seeing the gynae on Wednesday. I am worried and obviously perplexed as to why my cervix cant be seen. Does anyone have similiar stories and put my mind at rest

[cornczech]

I am 40 and 1 1/2 years from a complete hysterectomy for endometriosis. I had the exact type of pain from the ENDO....burning, cramping pain...after the hyster...I STILL get pain, but it is from the adhesions.....and I have had 8 abdominal surgeries....so adhesions are now the enemy, (and endo still grows with my HRT (estrogen only) but without HRT I am a wack-job.......I have been told I have IBS....that I am a drug seeker (despite my not being able to take ANY narcotics without severe pain and vomiting) and I have been told I needed a "shrink"....in the 20 years I have had chronic pelvic pain, I have only gotten a diagnosis (other than the endo) when I lied and said I had never had "this kind of pain" before....for example....about 3 years ago, I got this terrible pressure like pain in my LLQ...with loose bowels, slight fever, etc...normally, I would tell the ER doc that I had endometriosis and they would give me pain meds and send me home...not this time, I "lied" and said I had never had this kind of pain before....they did a CT and it turned out that I had diverticulitis (and lo and behold....HUGE adhesions from having another diverticular attack years before that I blew off as being a very bad GI virus!) I spent a week in hospital to get "cured".....so...hang in there and don't take "it's IBS or "it's all in your head" as a diagnosis when you KNOW deep down something is wrong.....

good luck to you!

[bwalton]

I have been feeling like I am going crazy until I came across this site, thank you to all of you who have posted comments about your pelvic pain, endo, cysts, of an unknown origin.
I don't think doctors understand the feeling and such they give you when you go in doubled over, ultrasounds hurt, exams hurt, you are mentally and emotionally frustrated and they say they don't know why this pain is the way it is, and basically it is in your head. The pain is real. It is so real.
I am a 23 years, healthly girl, who has endometriosis, had multiple laps, bowel resection, appendix and gall bladder removed. After all of my surgeries I feel better, but that nagging pain, doubling pain comes back. I am on depo-provera, and have done depo-lupron and many bc bills. I have seen specialist, and 2 different ob-gyn's. I am drained. I know somethings not right. I am now having pain, I have cysts, but they shouldn't be causing this chronic pain, sharp pain, if they aren't rupurting. I call the dr. and they say suck it basically. I see a specialist at UNC- Chapel Hill in March. Dr. Steege. He is supposed to be the best. Wish me luck, I hope I find an answer. I just want to live life knowing what is going on with me, not to made to feel crazy, and to fix or manage with it is.

B

[judgejud]

I went for back massarge today, however as soon I got off the table my lower back, right lower abdo and right had serve pain. I left it for a few hours to c if the pain would go away, but it didn't. I rang my doctor and he said to wait until laparoscopy. I have been throwing up and can not stand up staright. First what is wrong with doctors, why dont they listen to people. Second should I be concerned?
Judy

[judgejud]

Hi Stephanie,
I just your other posting on other site, I noticed you spoke about drinking. I have always been a big drinker (my male friends feel ashamed). However now after 2 or 3 rums and cokes I feel like ****, almost to the point of throwing up and drinking also brings on the pain, if already in pain makes it worse, and this really sucks cause I love my rum, I also smoke about 20-25 a day. Should I be concerned about this?

[judgejud]

Hi there, hope you are feeling ok. Did you get your ca 125 results yet? I had ca 125 and ca 153 done and results were 8 and 5. However was told at my age this does not mean much. Thanks for advise on laparoscopy, hopefully will have that soon, when doctor desides to contact me about the procedure. I only have the things I wrote, however I have put on weight. Best of luck to you and talk soon.
Judy

[Lmkcreationz]

Personally it sounds to me like endometriosis. The ONLY and I repeat ONLY way they can get diagnosis on endometriosis is thru doing a laparascopy.

Good luck!
Lisa

[judgejud]

I had surgey 11 or 12 years ago to remove my appendictis. When my last child was born (1997) I did have a large postpartum hemorrhage (losing 3.5 liters of blood). The doctors took me to surgey for clean out and then 5 days after that the doctors had to again due to more cloting. The only other thing I have had is cone leeps done for CIN 3.

[mikysmum]

Is the pain like a deep aching pulling sensation or a sudden really sharp pain that you want to just double over with as that's what I get from the adhesions.
Apparently the adhesions have pulled up my womb and then fixed it to my abdominal wall (I can't even get smear tests done now as noone can find my cervix).The only thing the Docs will do though is give me the depo injection (but it's for the endo aswell)or if I really wanted to which I don't at the moment I could go on zoladex instead.
I know that they can do surgery to get rid of the adhesions but for some reason they won't do it at my local hospital(although saying that I don't really want another op done).I think it's because of the risk of them coming back worse after the surgery.

[judgejud]

My pain feels like mild, however mostly serve contractions. There is no problem getting to my cervix by my gyn, however all other doctors have problems. I'm already on depo and have been for about 9 years. Question Milkysmum where are you from, Iam in Australia, so the pulbic system here is quite good. So should get in for laparoscopy with the next 2 months, and our pulbic system is mostly free.

[mikysmum]

I'm in England hun so gotta contend with the National Health Service which is getting really bad now.I've been waiting since the end of Oct for an urgent apt for surgery to have an impacted wisdom tooth removed that keeps getting infected and have finall recieved the apt for the middle of March (I hate to think of how long the wait would be if it wasn't classed as urgent but probably summit like a year or two's time eek).
I hope you get the apt to have the lap done ASAP so they can find out what's going on for you.

[Ms_Makita]

hi! do u have any other symptoms,nausea,or fever? (pelvic inflammatory disease)it can be acute or chronic,or a ovarian cyst? I'm in same boat as you are (28 yrs old)past year have had pelvic/abdominal pain,horrible digestive problems,bloating,painful bowel movements,100lb weight loss.Old pcp told me in Sept it was in my head after laparscopy in aug'06 to check for endometriosis (none found)then I was given its "IBS" theory,Oct'06 had appendicitis,appendix out,thinking it was end to pain,found 1.9cm (mass) in right ovary  ,ovary enlarged golf ball size,still in pain and having worsening symptoms,finally gyno sent me for ca125 test for "possible" ovarian cancer,dont have results yet,he also mentioned could be "hidden" endometriosis, it is behind organs and not visible.
     Endometriosis and ovarian cancer mimic eachother,dont settle for a diagnosis of endometriosis until you have a laparscopy.I was told 6 months before laparscopy it was endometriosis,put on birth control,if any chance it is ovarian cancer..it just made it spread faster,and my pain and symptoms got worse after I stopped the birth control.Dont hestitate to get a second opinion.Keep in touch (I also have post's on ovarian cancer patient forum)good luck to you
                          Stephanie

[mikysmum]

If you've not had a lap yet hun then I don't see how the Docs can have ruled out endo as a possible cause of your problems.Have you had any abdominal surgery before hun as there's a possibility it could be adhesions otherwise.I get the same sort of pain,bloating you describe as I've got adhesions from where I had an emergency c section 2 years ago (although I do have endo in there aswell).
I hope that your able to get some answers when you have the lap done cos being in pain all the time is no fun I know.