Hi, I am totally over this crap and I just want to cry. I've still NOT been diagnosed, and this is going on for 8 years.
I've recently (as in last week) had high FSH / LH levels returned. I've been asked to have 2 ultrasounds in past 4 weeks, first showed an ovarian cyst, second showed cyst is gone. I've had period like pains for a week, and yet no bleeding. I'm over due for my period, and no I'm not pregnant.
The doctor sent me for a colonoscopy, I had that done yesterday. They removed a "bump" not a polyp, and sent that to pathology. The colonoscopist clearly said there is nothing else wrong with my colon. Urgh.
I suffer headaches at least twice a week, go to bed with them and wake up with them. I have had consistent pelvic pain for the past 7 days, no diagnosis. I have always been regular (with timing) of periods, but find the flow changes. I originally went to the doctor 4 weeks ago because I had unusal mid cycle spotting. That's why I was ordered the ultrasound. All my other blood tests are fine.
I have been down this path so many times, and no-one has diagnosed me with anything. I feel as though the doctors think that I'm an idiot. But I'm not. I had an implanon rod put in my arm about 8 years ago, and stacked on 20kg in 3 months. I then demanded that the stupid rod come out - it came out, but I still am 20kg heavier than I ever was.
About 2 years ago, I went and had blood tests done because everything just didn't seem right. I was referred to an endo, as my bloods returned high testosterone levels. The endo did more tests, and referred me to a dietician. I have tried my hardest to exercise and lose weight, but it just won't budge. So, I gave up on seeing the dietician. 2 years ago, they tested me for IR - results said I did not have IR. Urgh. The second blood test ran two years ago showed testosterone had returned to normal.
I've told the latest doctor all of the above, but still no diagnosis. He is running more hormone tests and I get the results Tuesday. I am now at the point where I am going to request a hysterectomy, as I just can not do this for another 30 years.
One month agony - next month like nothing is there. Miss my period for 2 months, and then it comes back with avegence. I have had enough. I have not told hubby of my decision yet.
I just needed to get this out because I want to cry. I just don't know what to do if these latest tests come back normal, because I just don't feel "right".
Thanks for listening to my rant.
It's a shame hubby and I haven't had kids yet, but I just CAN NOT continue like this.
I was in similar shoes when I got dx'd. It took me actually taking PCOS printouts (some from this site) to my Dr for her to diagnose me. What a pain! I hope you can find some competent doctors soon, or at least I hope your current doctors do something to HELP you. I don't understand the medical field sometimes- they do things so backa--wards!
good luck to you and welcome to SC!
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-Mandy-
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Weight Loss Progress 282/206/140 start/current/goal
It took them 20 years to dx me. I would take the printouts to your dr like Mandy suggested. Sometimes they don't know enough about somthing that you have to educate them before they can dx you. I know that sound stupid but it's true. Hope you get the dx soon and can start to feel normal again.
__________________ Waiting on approval for WLS.
Failed back syndrome (from surgery), siatica, Fibromyalgia, diabetes, joint pain
I am sorry to hear you are having such a rough time with getting a DX.. As the other girls said I too had to bring info to my doctor to get Dx.. It couldnt hurt, I hope you get help soon and get the answers you deserve!!
Rachel
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Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
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Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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Ok just wanted to say Im sorry you havent been dx, it takes so many tests and so much for them to put 2 plus 2 together. It took awhile for me to get a dx aswell as everyone else it seems. And honestly its been over 5 years and I am not sure I am any better off just from having the dx. I wish I would have read up on it then, so I could have really watched my weight and my diet cause I cant lose this weight Ive gained. Its horrible. Ididnt weigh this much when I was pregnant with my first child and I gained 42lbs with her. Its crazy. But anyhow- I had the ablation after I couldnt handle the bleeding, Id bleed more then I didnt, and was anemic from where I lost so much. About the time Id stop bleeding Id try tohave sex and boom I would be right back bleeding. It was terrible. So I had the ablation which helped with the bleeding problem but that is about it. Still had my pains and my terrible BLOATING!!! Anyhow, enough was enough and I had the hysterectomy July 08 and my weight is up even more. I try working out , though I have NO energy. ANd my pulse gets too high so its hard to work out. Also, I have terrible migraines that I dont remember having before. When I was younger some of the pills I tried made me have them but these are worse than I remember. I get dizzy and see spots, I cant sleep but am exhausted tried sleeping pills. Great help getting to sleep but guess what I waske up and feel worse. I have seen neurologist about my headaches they have me on Topamax, tha pain pills for migraines are useless so I dont even bother with them, but as if the metaformin and spiron didnt upset my stomach enough. Also they suggest I take depakote but Im exhausted how it is. I tried it for a few weeks and it made me tired. So, anyhow none of these issues were here or atleast not as bad before my hyster. Im not saying that it caused it but your ob/gyn should tell you that having a hyst will not cure pcos. So if bleeding is your issue I would say try the ablation, they can do it a couple of different ways now. Its outpatient and not terrible. I just think there is some depression that comes with the hyst atleast for me. So think twice or more! Good luck honey.
I just have to make it til Tuesday. I am not sure what I am going to do if they say the only thing they can give me is the BCP as I really do not want to be on the BCP as I do feel that caused my pain in the first place.
I guess it is natural to feel this crappy day in day out huh?
I guess it is natural to feel this crappy day in day out huh?
It shouldnt but unfortenetly somtimes is does . Have you talked to your doctor about metformin?? Or will they not talk to you about meds until you are Dx??
__________________
Dx: Jan. 2009
Meds: Taken off Met!!Doc. wants to see my levels off to make sure I even need it(WooHOO).Put on Spironolactone.Taken off NuvaRing until ready to TTC.
ME(20) To view links or images in signatures your post count must be 0 or greater. You currently have 0 posts. DBF(24)
Other Dx: Hashimoto's Disease and possible IBS/IC/ENDO.
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I have asked the doctor what the treatment will be if the diagnosis is PCOS - he has basically said that is the BCP or NOTHING
The doctor did mention that he thinks that I could also have endometriosis.
I have been madly googling, much to the doctors disgust, and I am now leaning more so towards having a mix of both PCOS and Endometriosis as I started my periods at 10yo (quite young), have a history of heavy bleeding during them, presented to the doctor this time because I was spotting just 2 weeks after my period. I have also always suffered with cramping etc. Lately I feel so tired, that I am in bed by 8pm nightly.
I have taken charge on this, and have also questioned my parents in depth about their history - my mother had a partial hysterectomy due to fibroids and a gene mutation that has to do with blood clotting, father had bowel cancer, and has lupus of the skin. So my parent's gene's on both sides would also support some kind of diagnosis.
2 years ago when I had all these tests, my testosterone levels were high, and that's why I was sent to an Endocrinologist - but they did not find I had IR or anything like that. The Endocrinologist retested me and my testosterone levels had 'resumed to normal'.
The tests I had done last week showed that I have high FSH & LH levels - to the point where google tells me I am in 'ovarian failure'. The only treatment I could find for this was fertility drugs. I don't even know if we are ready for kids yet, so am not sure I would want to take them!
I do not know what the results of the tests will show on Tuesday, but I am hoping that something else is high just so that I can get diagnosed / referred or something. I am still yet to bleed (now 11 days over due)...and am still having pelvic cramps for at least 3 hours a day .
As for the Metformin, when I asked about it two years ago, the doctor would not prescribe it as they said it will cause me to become IR if I was to start taking it. Even if I was to take it just for a couple of months to see if I felt better, I think I would be happy.
Otherwise, I have been to the endometriosis website in my country, and the natural treatments recommended may be my next path (vitex :S, vitamin E & zinc / magnesium).
I know you don't ever want to hear you have anything but that's great that he's referred you to a GYN. Once you start the meds for PCOS you'll start to have periods again and things will straighten out soon.
__________________ Waiting on approval for WLS.
Failed back syndrome (from surgery), siatica, Fibromyalgia, diabetes, joint pain
I really am sorry it is taking so long for the doctor to diagnose you I feel like I am in the same shoes!
__________________ Mi 24 Taking a break getting it rite with God Metformin 1000mg 2x's per day Prenatal Vitamins, Fish Oil Pills Spiro 100mg 2x's per day 23 pds lost as of 10/6/09
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"The things impossible for people are possible for God" Luke 18:27
i feel like im right there with you. i had to go thru a few doctors to find one that seemed to have a good head on her shoulders, and i got sent to the gyn thinking this is it! finally a dx....but i was wrong, now im meeting resistance from the gyn on the subject and have been trying her "remedies" for my ailments to no avail. im really no one to question the gyn but i really think she would rather sign the prescription for all these other things then actually dx the issue. be careful of that, i had several doctors just put me on bcp and say there you go, your fine now! when clearly im still suffering from the same symptoms, its just the periods are more in control. i have spent the last 5 years trying to figure out why i feel crummy and exhausted all the time too so i really feel for you. keep your chin up, it took you this long to finally get somewhere so dont back down and dont give up. there are things that can help, and hopefully you dont meet up with any more resistance. if you need to chat, im here! again, good luck!
TOTALLY Over this crap and just want to cry..... 
. Have you talked to your doctor about metformin?? Or will they not talk to you about meds until you are Dx??
