PCOS: Get a Diagnosis - Page 6

Jayelle · 02-07-2008, 11:54 PM

I'm so confused. I have been undergoing several tests over the last few weeks after my doctor did an ultrasound and found that I have polycystic ovaries. I went off of birthcontrol in May of 2007 and have had one period since then (in October). I don't have all of the typical symptoms of PCOS--no abnormal hair growth, and although I've gained some weight, it's only about 15 -20 pounds. My glucose tests came back okay, but my testosterone and ldl cholesterol were high. Last week I was told that they were going to treat me for PCOS and start me on Metformin this week, but when I had my appointment with a new doctor just this Wednesday, he said that he doesn't want to treat me for PCOS and would rather put me on Clomid since my husband and I want to have a child. I had come to grips with the fact that I had PCOS but now I feel so unsettled not having a diagnosis. I felt almost insignificant, like my doctor didn't think that any of this was a big deal. Has anyone else had issues like mine? Am I crazy for wanting a diagnosis?

Elli · 02-25-2008, 10:35 PM

Should I demand blood tests or sonogram? I met with a specialist in PCOS and based upon hair in wrong places,acne, and anovulation, he has decided I have PCOS. He put me on Metformin (which he just changed to Actos today because of the Met side effects) and Flutamide. He is willing to give me a sonogram to look for cysts but doesn't feel it is necessary because he is confident in the diagnosis and apparently the presence cysts will not be indicative of the severity of my condition. I have been taking the medicine for a month and my skin has improved. At the same time, this the longest I have ever gone without a period. (Whatever that means.) Anyway, he hasn't even given me an exam. Should I demand the sonogram? What about bloodwork? It's not like I would know what to tell him to look for.

n2jesus · 02-27-2008, 11:48 PM

Hi, I am new to this whole thing I am 17 years old and Have noticed increasing (coarse) hairs on my neck and chin area like that of man.
Its not just few scraggly hairs its those mixed with many short hairs, like that of a boy developing a beard.

I already have hair on my arms, fingers, hands, {(coarse dark) hair on my inner thighs , back of my thighs, buttocks,excess pub's continuing to Cover my stomach,< all accompanied with Very bad acne and scars from ingrown hairs and shaving and nair} hair covering my chest and breast area but is increasingly becomeing coarse and dark, and of course my legs.

I am an African American with very long hair ( on my head) so my mother just ignors my cries to visit a dermatoligist becasue she feels like I am just a "hairy" person. But ive been researching and I do not feel that hair on the head and body are really connected. I was over weight at the most 210lbs, at the age of 16 I went on a low carb diet and shed 40lbs. I also have dark neck area ( very dark) considering my skin color is like a (Pancake color(a cooked one)..LOL)that is the only way to describe it. I have dark , patchy areas under the arms and breast and inner thigh partly I believe is due to being overwieght.

My period is not really irregular even though I have recently noticed it has been off track( being 10 days early, 12 days late etc)

I just am trying to figure out if I have PCOS or if Im just "Hairy"????

alwayshopefull · 02-28-2008, 04:30 PM

Well, I finally got my official dx today by my endocrinologist. I have been dealing with this for over 5 years with no dx. Now I can finally get some help.

Jayelle · 02-28-2008, 08:05 PM

Quote:

Originally Posted by Elli

Should I demand blood tests or sonogram? I met with a specialist in PCOS and based upon hair in wrong places,acne, and anovulation, he has decided I have PCOS. He put me on Metformin (which he just changed to Actos today because of the Met side effects) and Flutamide. He is willing to give me a sonogram to look for cysts but doesn't feel it is necessary because he is confident in the diagnosis and apparently the presence cysts will not be indicative of the severity of my condition. I have been taking the medicine for a month and my skin has improved. At the same time, this the longest I have ever gone without a period. (Whatever that means.) Anyway, he hasn't even given me an exam. Should I demand the sonogram? What about bloodwork? It's not like I would know what to tell him to look for.

Elli,
Since my first post, I've finally gotten my diagnosis. They started me on Met this week--it's such a relief to have an answer!

I don't have an issue with hair, and am relatively thin, but the thing that jump-started all of this was that I had an ultrasound that revealed multiple cysts on my ovaries. That alone led my doc. to think that I had PCOS. She sent me to a specialty clinic to have blood tests done. They look for several things: Insulin Resistance, high testosterone, cholesterol etc. The reason my doc didn't want to diagnose me right away was because I don't fit the typical picture of what PCOS looks like, but the reason I eventually was diagnosed with it is b/c of the cysts and my lab results. I wasn't IR, but my hormones were enough "out of whack" that they felt I would benefit from Met.

My whole point is, they need to monitor your glucose and hormones if they are going to treat you properly. To diagnose you strictly on your appearance seems to me to be a pretty gutsy move. You want to receive the best care possible and if they haven't done those blood tests, how are they going to know that your symptoms are improving? The cysts are probably the least of your worries--I would ask about the blood tests if I were you. Here is a link that talks about some of the tests they do and what they are looking for.

http://www.labtestsonline.org/unders...ns/pcos-3.html

I hope I could be of help! I'm pretty new to this as well but if there's one thing I've learned from this site, I've learned that we cysters need to stick together and help each other out as much as we can!

Jayelle · 02-28-2008, 08:10 PM

Quote:

Originally Posted by n2jesus

Hi, I am new to this whole thing I am 17 years old and Have noticed increasing (coarse) hairs on my neck and chin area like that of man.
Its not just few scraggly hairs its those mixed with many short hairs, like that of a boy developing a beard.

I already have hair on my arms, fingers, hands, {(coarse dark) hair on my inner thighs , back of my thighs, buttocks,excess pub's continuing to Cover my stomach,< all accompanied with Very bad acne and scars from ingrown hairs and shaving and nair} hair covering my chest and breast area but is increasingly becomeing coarse and dark, and of course my legs.

I am an African American with very long hair ( on my head) so my mother just ignors my cries to visit a dermatoligist becasue she feels like I am just a "hairy" person. But ive been researching and I do not feel that hair on the head and body are really connected. I was over weight at the most 210lbs, at the age of 16 I went on a low carb diet and shed 40lbs. I also have dark neck area ( very dark) considering my skin color is like a (Pancake color(a cooked one)..LOL)that is the only way to describe it. I have dark , patchy areas under the arms and breast and inner thigh partly I believe is due to being overwieght.

My period is not really irregular even though I have recently noticed it has been off track( being 10 days early, 12 days late etc)

I just am trying to figure out if I have PCOS or if Im just "Hairy"????

It's such a tricky thing to know! If you really have some concerns, talk to your doctor. PCOS has so much potential for future problems that it's worth it to know. I commend you and being so proactive and doing your research! I wish I would've known about PCOS when I was your age--but I'm glad that I know now! Keep on researching!

joyblack · 02-29-2008, 06:58 PM

Quote:

Originally Posted by n2jesus

Hi, I am new to this whole thing I am 17 years old and Have noticed increasing (coarse) hairs on my neck and chin area like that of man.
Its not just few scraggly hairs its those mixed with many short hairs, like that of a boy developing a beard.

I already have hair on my arms, fingers, hands, {(coarse dark) hair on my inner thighs , back of my thighs, buttocks,excess pub's continuing to Cover my stomach,< all accompanied with Very bad acne and scars from ingrown hairs and shaving and nair} hair covering my chest and breast area but is increasingly becomeing coarse and dark, and of course my legs.

I am an African American with very long hair ( on my head) so my mother just ignors my cries to visit a dermatoligist becasue she feels like I am just a "hairy" person. But ive been researching and I do not feel that hair on the head and body are really connected. I was over weight at the most 210lbs, at the age of 16 I went on a low carb diet and shed 40lbs. I also have dark neck area ( very dark) considering my skin color is like a (Pancake color(a cooked one)..LOL)that is the only way to describe it. I have dark , patchy areas under the arms and breast and inner thigh partly I believe is due to being overwieght.

My period is not really irregular even though I have recently noticed it has been off track( being 10 days early, 12 days late etc)

I just am trying to figure out if I have PCOS or if Im just "Hairy"????

Well, who knows, if you don't get the relevant checks made? It does sound very much as if your body hair is male type and that you're developing a male-type beard. It will help your doctor if you are able to say to him or her how frequently you have to shave it to keep the growth down -- once a week, once every two days, every day etc.

Aphrodite82 · 04-13-2008, 08:54 AM

I went to my doctor last year complaining of sharp pains in my ovaries and a sudden on set of a stabbing pain, he referred me to the Gynae who did a intervaginal scan which showed I had multiple cysts all over my ovaries, he concluded that one of the cysts was quite large and that he wanted to do surgery so I went back to my doctor who disagreed with the surgery and told me it was a very drastic and severe approach so the surgery never happened.

2 weeks later while travelling across town I crippled over in pain and could hardly walk (rang my bf) and got to my doctor straight away who sent me to hospital where they confirmed that I was internally bleeding from the cyst rupturing. So I had an emergency Lapioscopy to remove all the cysts and the burst one.

I then went back again 6 months later for a check up after having the same pains again to be told that I had multiple cysts all over my ovaries again (by this time my old gynae had left and I now had a new female gynae) she checked my bloods and my hormone level and insulin + tyroid tests came back fine except my prolactin which in the last 6 months has elevated to 41.3. The gynae said I didnt have PCOS just by the fact that my blood tests all came back fine.

Now a year later Im getting the stabbing pain again, get crippled over and feel like theres a pulling in my ovary area every now and again.

The Symptoms I have are:

Numerous Cysts on my ovaries
Enlarged Ovaries
Ive suffered from bad skin for over 12yrs
Im excessively Hairy (back, stomach, chin, upper-lip, jaw line, & toes)
Regular periods although very heavy and very painful (every 21-24days)
Pelvic Pain
Excess weight around the abdomin
Oily Skin
Hair Loss (Falls Out while washing it in the shower)
High Prolactin Levels (41.3mg)
Past Ruptured Ovarian Cyst (was the size of a 50p coin before rupture)
Cysts Removed Feb06, new multiple cysts found Aug06
I have a Family history of gynae problems on my mothers side raging from suspected un-diagnosed PCOS (had all the symptoms I have) which led to a full hysterectomy at the age of 29 (that was my mother) and my grandmother who had a full hysterectomy (my mothers mother) both also had suspected uterine cancer.

Does it sound like I have PCOS, my gynaecologist is s**t and because I live in a middle eastern country there not exactly forth coming about any of this and just keep fobbing me off!!! Im 26 this year have been in a relationship for 5yrs and would someday like to have kids!!! But my gynae leaving all of this undiagnosed and just saying I have cysts is leaving me highly worried! Because my blood tests came back normal my gynae says I dont have it but my gp doctor and a family friend who is a womans clinic nurse reckons I have? I have another appointment with the gynae on tuesday to find out what the hells going off, but what should I say to her? Shes just over all useless about all of this!!!!

HELP HELP HELP!!

KathyG62 · 04-25-2008, 08:26 PM

I have been diagnosed with PCOS after only describing my symptoms to an endocrinologist and having my testosterone level checked. I was told that my T level was in normal range but it did not mean that I do not have a high T level because they are very inaccurate tests. I was placed on aldactone 200mg daily for the hair loss and acne. I have been on it for 3 years now and have not seen an improvement in hair loss.... if anything it may be worse. The acne has improved. But since beginning the drug my periods have pretty much ceased. I have been told by a dermatologist that the aldactone can cause me not to have periods and can even cause hair loss to be worse. I am 45 yrs old. I cannot seem to lose weight no matter what I try. Also, had to be on clomid for infertility. Had 2 stillborn and 5 miscarriages due to what was later determined to be factor V lieden deficiency ( a condition I discovered myself thru research and asked the geneticists to test me for) . Hope to learn here how to help me deal with the concerns I am dealing with now.
When I was younger I would have sharp stabbing pains in my abd that I was told was stress related. No testing done for anything. In my late 20's I was rushed to ER for what I was told was appendicitis, in surgery they realized it was a ruptured ovarian cyst instead.

~jenn~ · 04-28-2008, 02:00 PM

wow theres a lot of information just in this thread! thanx

02-07-2008, 11:54 PM	#76 (permalink)
Jayelle Registered User Join Date: Feb 2008 Posts: 20 My Mood: Points: 1,005.11 Bank: 0.00 Total Points: 1,005.11 Donate	confused I'm so confused. I have been undergoing several tests over the last few weeks after my doctor did an ultrasound and found that I have polycystic ovaries. I went off of birthcontrol in May of 2007 and have had one period since then (in October). I don't have all of the typical symptoms of PCOS--no abnormal hair growth, and although I've gained some weight, it's only about 15 -20 pounds. My glucose tests came back okay, but my testosterone and ldl cholesterol were high. Last week I was told that they were going to treat me for PCOS and start me on Metformin this week, but when I had my appointment with a new doctor just this Wednesday, he said that he doesn't want to treat me for PCOS and would rather put me on Clomid since my husband and I want to have a child. I had come to grips with the fact that I had PCOS but now I feel so unsettled not having a diagnosis. I felt almost insignificant, like my doctor didn't think that any of this was a big deal. Has anyone else had issues like mine? Am I crazy for wanting a diagnosis?

02-25-2008, 10:35 PM	#77 (permalink)
Elli 6 months until I try.... Join Date: Feb 2008 Location: Texas Posts: 19 My Mood: Points: 967.28 Bank: 0.00 Total Points: 967.28 Donate	Should I demand blood tests or sonogram? I met with a specialist in PCOS and based upon hair in wrong places,acne, and anovulation, he has decided I have PCOS. He put me on Metformin (which he just changed to Actos today because of the Met side effects) and Flutamide. He is willing to give me a sonogram to look for cysts but doesn't feel it is necessary because he is confident in the diagnosis and apparently the presence cysts will not be indicative of the severity of my condition. I have been taking the medicine for a month and my skin has improved. At the same time, this the longest I have ever gone without a period. (Whatever that means.) Anyway, he hasn't even given me an exam. Should I demand the sonogram? What about bloodwork? It's not like I would know what to tell him to look for. __________________ Feeling hopeful... To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

02-27-2008, 11:48 PM	#78 (permalink)
n2jesus Registered User Join Date: Feb 2008 Posts: 2 Points: 339.77 Bank: 0.00 Total Points: 339.77 Donate	Diagnosis....pls Read! Hi, I am new to this whole thing I am 17 years old and Have noticed increasing (coarse) hairs on my neck and chin area like that of man. Its not just few scraggly hairs its those mixed with many short hairs, like that of a boy developing a beard. I already have hair on my arms, fingers, hands, {(coarse dark) hair on my inner thighs , back of my thighs, buttocks,excess pub's continuing to Cover my stomach,< all accompanied with Very bad acne and scars from ingrown hairs and shaving and nair} hair covering my chest and breast area but is increasingly becomeing coarse and dark, and of course my legs. I am an African American with very long hair ( on my head) so my mother just ignors my cries to visit a dermatoligist becasue she feels like I am just a "hairy" person. But ive been researching and I do not feel that hair on the head and body are really connected. I was over weight at the most 210lbs, at the age of 16 I went on a low carb diet and shed 40lbs. I also have dark neck area ( very dark) considering my skin color is like a (Pancake color(a cooked one)..LOL)that is the only way to describe it. I have dark , patchy areas under the arms and breast and inner thigh partly I believe is due to being overwieght. My period is not really irregular even though I have recently noticed it has been off track( being 10 days early, 12 days late etc) I just am trying to figure out if I have PCOS or if Im just "Hairy"????

02-28-2008, 04:30 PM	#79 (permalink)
alwayshopefull Registered User Join Date: Feb 2008 Location: NC Posts: 22 My Mood: Points: 364.44 Bank: 0.00 Total Points: 364.44 Donate	Well, I finally got my official dx today by my endocrinologist. I have been dealing with this for over 5 years with no dx. Now I can finally get some help. __________________ To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts. Me 20, DH 30 To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts. TTC for 2 yrs To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts. currently on Met. 500 mg Levoxyl 150 mcg Aygestin 5 mg Suspected PCOS since 2003 Dx Feb. 2008 To view links or images in signatures your post count must be 10 or greater. You currently have 0 posts.

04-13-2008, 08:54 AM	#83 (permalink)
Aphrodite82 Registered User Join Date: Apr 2008 Posts: 4 My Mood: Points: 322.97 Bank: 0.00 Total Points: 322.97 Donate	Confused & Frustrated!! HELP NEEDED!! I went to my doctor last year complaining of sharp pains in my ovaries and a sudden on set of a stabbing pain, he referred me to the Gynae who did a intervaginal scan which showed I had multiple cysts all over my ovaries, he concluded that one of the cysts was quite large and that he wanted to do surgery so I went back to my doctor who disagreed with the surgery and told me it was a very drastic and severe approach so the surgery never happened. 2 weeks later while travelling across town I crippled over in pain and could hardly walk (rang my bf) and got to my doctor straight away who sent me to hospital where they confirmed that I was internally bleeding from the cyst rupturing. So I had an emergency Lapioscopy to remove all the cysts and the burst one. I then went back again 6 months later for a check up after having the same pains again to be told that I had multiple cysts all over my ovaries again (by this time my old gynae had left and I now had a new female gynae) she checked my bloods and my hormone level and insulin + tyroid tests came back fine except my prolactin which in the last 6 months has elevated to 41.3. The gynae said I didnt have PCOS just by the fact that my blood tests all came back fine. Now a year later Im getting the stabbing pain again, get crippled over and feel like theres a pulling in my ovary area every now and again. The Symptoms I have are: Numerous Cysts on my ovaries Enlarged Ovaries Ive suffered from bad skin for over 12yrs Im excessively Hairy (back, stomach, chin, upper-lip, jaw line, & toes) Regular periods although very heavy and very painful (every 21-24days) Pelvic Pain Excess weight around the abdomin Oily Skin Hair Loss (Falls Out while washing it in the shower) High Prolactin Levels (41.3mg) Past Ruptured Ovarian Cyst (was the size of a 50p coin before rupture) Cysts Removed Feb06, new multiple cysts found Aug06 I have a Family history of gynae problems on my mothers side raging from suspected un-diagnosed PCOS (had all the symptoms I have) which led to a full hysterectomy at the age of 29 (that was my mother) and my grandmother who had a full hysterectomy (my mothers mother) both also had suspected uterine cancer. Does it sound like I have PCOS, my gynaecologist is s**t and because I live in a middle eastern country there not exactly forth coming about any of this and just keep fobbing me off!!! Im 26 this year have been in a relationship for 5yrs and would someday like to have kids!!! But my gynae leaving all of this undiagnosed and just saying I have cysts is leaving me highly worried! Because my blood tests came back normal my gynae says I dont have it but my gp doctor and a family friend who is a womans clinic nurse reckons I have? I have another appointment with the gynae on tuesday to find out what the hells going off, but what should I say to her? Shes just over all useless about all of this!!!! HELP HELP HELP!!

04-25-2008, 08:26 PM	#84 (permalink)
KathyG62 KathyG62 Join Date: Apr 2008 Location: Illinois Posts: 2 Points: 122.03 Bank: 0.00 Total Points: 122.03 Donate	New to Soulcysters I have been diagnosed with PCOS after only describing my symptoms to an endocrinologist and having my testosterone level checked. I was told that my T level was in normal range but it did not mean that I do not have a high T level because they are very inaccurate tests. I was placed on aldactone 200mg daily for the hair loss and acne. I have been on it for 3 years now and have not seen an improvement in hair loss.... if anything it may be worse. The acne has improved. But since beginning the drug my periods have pretty much ceased. I have been told by a dermatologist that the aldactone can cause me not to have periods and can even cause hair loss to be worse. I am 45 yrs old. I cannot seem to lose weight no matter what I try. Also, had to be on clomid for infertility. Had 2 stillborn and 5 miscarriages due to what was later determined to be factor V lieden deficiency ( a condition I discovered myself thru research and asked the geneticists to test me for) . Hope to learn here how to help me deal with the concerns I am dealing with now. When I was younger I would have sharp stabbing pains in my abd that I was told was stress related. No testing done for anything. In my late 20's I was rushed to ER for what I was told was appendicitis, in surgery they realized it was a ruptured ovarian cyst instead. Last edited by KathyG62 : 04-25-2008 at 08:34 PM.

04-28-2008, 02:00 PM	#85 (permalink)
~jenn~ Registered User Join Date: Apr 2008 Posts: 10 My Mood: Points: 660.43 Bank: 0.00 Total Points: 660.43 Donate	wow theres a lot of information just in this thread! thanx

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