Discussions By Condition: I cannot get a diagnosis.

Please Help....I need a new doctor

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Anonymous
  • June 30, 2008
  • 07:50 PM

I am SO tired of the labels that have been put on me.

I got my period at the age of 9.
At the age of 10 I started to get cramps that were not normal.
I am now 32 years old.


My first ob-gyn was a very caring, older gentleman who took me seriously. He told me that cramps (dysmenorrhea) should NOT cause pain that stopped me from standing up, walking and going to school. I should not be having pain radiating to my knees and upper back. I should NOT be throwing up because the pain was so bad. So, he prescribed me pain meds and muscle relaxers to try to calm the cramps.

While the med regimen worked, I couldn't live like that. SO, he put me on birth control pills. However, I only go off of them (get my period by taking inactive pills) 4 times a year. This way, I was only on the narcotics for 16 days of the year instead of 3 or 4 days a month. I was doing well with the treatment. We also scheduled an exploratory surgery to rule out any serious disorders.

While waiting for the surgery, my doctor passed away.

Since my doc was part of a practice, they scheduled me to meet with one of his partners. He said the surgery would go as scheduled and we would take it from there.

When the surgery was over, they found NOTHING. Nothing abnormal at all - I've seen the pics and they are all shiny...no lumps, scars, etc.

So, the new doctor (and everyone else at this practice) is now assuming that I am making up this pain. They refuse to give me any prescriptions except for birth control and Ibuprophen (which is seriously like eating candy - it doesn't even TOUCH this pain). I'm sorry, but just because you can't see anything, does NOT MEAN I AM NOT IN PAIN.

Now, they want to do another surgery - the EXACT SAME ONE as before. What is the point?? Its not like something would show up there now. I've had this pain 20 years and if nothing was there 7 years ago, I highly doubt it will be there now.


Has anyone else experienced what I am going through?? Is there ANY hope left?? My other issues may not be related, but here they are:

Weight Loss and Weight Gain (for 2 yrs., I may be heavy and then thin for 2 years - no diets, I just lose and gain the weight on my own which fluctuates 50 lbs.)

Acne - I've had it since I was 12 and nothing makes it go away (Murad, Rx's, ProActive, etc.)

Constipation (SEVERE and Chronic)

Back Pain doing simple chores like sweeping the floor

my mustache is getting darker (but I AM Italian) :o)

Breast sensitivity MOST of the time

Hair thinning - large amounts of hair fall out in the shower and when I brush it.


Thanks for taking the time to read this. I am open to any suggestions as to what is going on. I am also trying to find an endocrinologist that specializes in Gyno. in the Southern NJ or Philly area if anyone knows of one.

Thanks!

Reply Flag this Discussion

12 Replies:

  • I forgot to mention two symptoms that may or may not be related:Pelvic pain which I would describe as uncomfortable more than painful. It occurs frequently and not during the time I have cramps. Stabbing headaches. I get them a couple of times a month but always when I am off the pill. The only way I can describe them is that if feels like a cold ice pick is being stabbed in my head. They are always localized and the doctor has called them cluster headaches which, through research, is predominantly present in males.
    Tired in NJ 6 Replies Flag this Response
  • Have you tried holistic healing? Acupuncture or naturopathy? Any doc diagnose you? HAve they ruled out endo, PCOS, fibroids, etc? Have you had ultrasounds? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • I too get period pain which flares into my back and goes down to my knees (esp down the front of my thighs). The pain can make my legs shake at times. Ive had so much pain on occassion due to it, that i nearly actually passed out from it. One thing which helps my pain a little (other than pain killers) is movement.. esp crawling can help just a little if done enough. (it seems that sitting makes my period pain even worst so i try avoid doing that). i also find that wearing tampons.. makes the cramps even worst, so i now try to avoid wearing those. During my periods.. i often have to spend much time with hot water bottles..one on my front area.. and one on the back (but at a heat that it reddens, and almost burns my skin, otherwise i dont get any relief from those either). Unlike you.. my doctors wont do any exploratory surgery to see if there is another reason for my pain (i wonder if i have endometriosis due to the amount of pain i get). i thou do have PCOS (polycystic ovulation syndrome) and my doctors just put down my pain due to that.. apparently people with PCOS get more period pain than what "normal" people do. If you have PCOS .. you will have an extended menstrational cycle along with other issues (so if you dont have an extrended menstrational cycle.. you can cross PCOS off the list of possibilities).
    taniaaust1 2267 Replies Flag this Response
  • I have a "normal" menstrual cycle but have PCOS, taniaaust1. I think PCOS is a possibility due to the mention of a moustache and weight gain. I would ask to see an endocrinologist and get an ultrasound of your ovaries.
    aquila 1263 Replies Flag this Response
  • Thank you, everyone for taking the time to read and post a reply. I am sorry you all have painful periods, as well, but its nice to know I am not alone. I have never been diagnosed with anything besides painful periods. I was thinking it might be PCOS BUT my period is regulated by the birth control pills. I've been taking them so long I have no idea what a natural period for me is. I have had vaginal ultrasounds as well as a regular ultrasound and NOTHING showed up. However, I have heard that birth control pills can shrink or decrease ovarian cysts which could explain why they never find anything. I am So tempted to go off of them a few months to see what happens, but I know I will lose my job from missing too many days. I work in a school for mentally and physically disabled children. You only get 6 days out before you are fired and I would need at least 3 days a month if I were to go off of them. Maybe after I qualify for FMLA but not right now. As for exercise, OUT OF THE QUESTION. I have to stay in a ball and rock a bit. ANY other movement makes me nauseous and the pain gets 3- 10x's worse. I always laughed when a doctor told me this. Don't get me wrong, I gave it a shot, but I just couldn't take it.The surgery I had ruled out fibroids and endometriosis. They DID say I had Cystic Ovulation....but, LOOK IT UP. IT DOESN'T EXIST!!! They made this up to shut me up I am sure! When I was 19 my boyfriend took me to the hospital because he INSISTED my cramps were not normal. They took me back and gave me Demerol. 45 min. later they gave me Morphine because the demerol did NOTHING. Is this REALLY normal for some people or should I keep looking?? Yes, I want to see an Endocrinologist, but I can't find one the specializes in Gyno. I feel like I should just give up but I am SOO sick of this pain. My husband is now pushing to have kids, but that would require going off the pill. Again, will I lose my job, will I get sicker, I am so scared.
    Tired in NJ 6 Replies Flag this Response
  • Where do you live? Do you live near a major city? DOM
    acuann 3080 Replies Flag this Response
  • Sorry for asking an intimate question, but do you have pain after sex? I'm thinking of pelvic congestion syndrome (PCS)
    Felsen 510 Replies Flag this Response
  • Yes, I live near Philadelphia (5 minutes awaY)I don't know about pelvic congestion syndrome because it keeps mentioning pregnancy and Ive never been pregnant. Its ok, yes, not ALL the time, only when I am close to my period or a day or two after it ends. It causes the cramps to mildly start or start back up.
    Tired in NJ 6 Replies Flag this Response
  • Yes, I live near Philadelphia (5 minutes awaY) I don't know about pelvic congestion syndrome because it keeps mentioning pregnancy and Ive never been pregnant. Its ok, yes, not ALL the time, only when I am close to my period or a day or two after it ends. It causes the cramps to mildly start or start back up. Here is a link to acupuncturists in Philly area:http://www.acufinder.com/acupuncturists_search.php?show_all=false&zip=&distance=&country=62&state=PA&province=&city=Philadelphia&firstname=&lastname=&style=&technique=&expertise=&language=&listtype=&association=&searchtype=&srt=rnd&page=1 It's a long link but you can do a search on www.acufinder.com for someone close to you. Make sureto find a practitioner who is NCCAOM (nationally) certified in Chinese Herbology, as Chinese herbs are very effective for menstrual pain. Acupuncture and Chinese herbal medicine is brilliant for all kinds of women's disorders, including PCOS, endo, and others. I highly recommend this form of medicine to treat your pain. I have treated several women with severe endometriosis pain and they have all benefited from this form of medicine. Please consider this! In the meantime I agree that an endocrinologist would be helpful. What about Penn? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • There are cases of PCS in women who havn't had children, but I agree that it's rare. Pain after sex is a classical symptom. It's often associated with polycystic ovaries. A phlebography of the ovarian veins is required for the diagnosis. I would definitely try acupuncture.
    Felsen 510 Replies Flag this Response
  • my niece had similar pains they had to keep her on birth controll to help regulate it even though she was not sexually active they said it was becuase she was highly anemic. dont know if this would help.
    jhopkins 24 Replies Flag this Response
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  • :pI am SO tired of the labels that have been put on me. I got my period at the age of 9.At the age of 10 I started to get cramps that were not normal.I am now 32 years old. My first ob-gyn was a very caring, older gentleman who took me seriously. He told me that cramps (dysmenorrhea) should NOT cause pain that stopped me from standing up, walking and going to school. I should not be having pain radiating to my knees and upper back. I should NOT be throwing up because the pain was so bad. So, he prescribed me pain meds and muscle relaxers to try to calm the cramps. While the med regimen worked, I couldn't live like that. SO, he put me on birth control pills. However, I only go off of them (get my period by taking inactive pills) 4 times a year. This way, I was only on the narcotics for 16 days of the year instead of 3 or 4 days a month. I was doing well with the treatment. We also scheduled an exploratory surgery to rule out any serious disorders. While waiting for the surgery, my doctor passed away. Since my doc was part of a practice, they scheduled me to meet with one of his partners. He said the surgery would go as scheduled and we would take it from there. When the surgery was over, they found NOTHING. Nothing abnormal at all - I've seen the pics and they are all shiny...no lumps, scars, etc. So, the new doctor (and everyone else at this practice) is now assuming that I am making up this pain. They refuse to give me any prescriptions except for birth control and Ibuprophen (which is seriously like eating candy - it doesn't even TOUCH this pain). I'm sorry, but just because you can't see anything, does NOT MEAN I AM NOT IN PAIN. Now, they want to do another surgery - the EXACT SAME ONE as before. What is the point?? Its not like something would show up there now. I've had this pain 20 years and if nothing was there 7 years ago, I highly doubt it will be there now. Has anyone else experienced what I am going through?? Is there ANY hope left?? My other issues may not be related, but here they are: Weight Loss and Weight Gain (for 2 yrs., I may be heavy and then thin for 2 years - no diets, I just lose and gain the weight on my own which fluctuates 50 lbs.) Acne - I've had it since I was 12 and nothing makes it go away (Murad, Rx's, ProActive, etc.) Constipation (SEVERE and Chronic) Back Pain doing simple chores like sweeping the floor my mustache is getting darker (but I AM Italian) :o) Breast sensitivity MOST of the time Hair thinning - large amounts of hair fall out in the shower and when I brush it. Thanks for taking the time to read this. I am open to any suggestions as to what is going on. I am also trying to find an endocrinologist that specializes in Gyno. in the Southern NJ or Philly area if anyone knows of one. Thanks! Hey tired- my period started later than yours- at 13- but I too have had these issues. At first I had extreme pain and vomiting- now at the age you are I have flu like symptoms. My doctors also found nothing on surgery with me either. You do have symptoms however that I have never had. It would seem to me that you have something hormonal going on. Cramps are normally caused by hormones. You also could have fibroid like cysts which I think was suggested to you and that can cause the other symptoms. I've seen people on Pharmacy treated with simple things like diabetes medication in that case. I am sure it is very fustrating. I would ask around and see if anyone has any suggestions on a good ob/gyn. Please don't give up.
    deedee35 38 Replies Flag this Response
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