I am cured or didn't have it in the first place!!!?

Tigger1965 · 01-04-2009, 05:09 PM

OK..... I was told in about 2004 that I had multiple cycts on both ovaries and had PSCO. I then fought to be put on Metformin and has to go to the RI in Edinburgh to see a specialist before my doctor would prescribe them. I was told I could not have Birth Control Pills because of my weight (which is part of the problem!!). In November 08 I saw a new female doctor at my surgery who noticed that the hospital should have seen me 6 months after my first visit and hadn't. She thought it a good idea that I go and see them again as she thought my symptoms were all still to do with the PCOS and I had come off the metformin but she thought I should go back on it.

Anyway, I went to the hospital a few weeks ago where the male doctor didn't give me any eye contact and when I tried to go through my symptoms the one he latched on to was that my periods are very heavy. They did an internal ultra sound and apparently my multiple cysts have disappeared and I only have about 6 on one ovary which is not enough to be diagnosed with PCOS!!

When I asked him what was causing all my other symptoms he brushed me off with "perhaps you are just sensative to hormone changes" and told me I needed to lose weight and would I like to see their dietician!! I told him that I knew exactly what I should be eating and that of course I knew I needed to lose weight but that this was part of my problem. He just ignored me and told me another 3 times that I need to lose weight!

I came out of there in tears and just don't know what to do now. Is it all in my mind? Do I hve a hormone problem that they haven't checked? He says that I am not pre or peri hormonal but that was from tests taken over 4 years ago.

I am still really angry and upset and feel like just giving up trying to find out what is wrong with me.

hotlips48801 · 01-04-2009, 05:51 PM

Tigger, as many specialist as I have seen and talked to and books I have read I have never been told you need a certain number of cysts to have PCOS. I am sorry you had such a upsetting visit. I would seek another Drs opinion. Good luck

Stacie M · 01-04-2009, 07:03 PM

Your doc sounds like an idiot. You don't need cysts on your ovaries to have PCOS. Cysts are just another symptoms, like excess hair or hair loss. Some women have them, some don't. That's why it is a syndrome. We don't need all of the symptoms, just a few.

For what it's worth, I was diagnosed with PCOS in 2001 and had at least one u/s a year and never showed ANY cysts until 2005 or so.

Also, PCOS is a hormonal condition, not a condition of your ovaries. So, yes they should be doing hormonal work ups on you.

fairy2323 · 01-04-2009, 07:49 PM

As the PP's mentioned- you do not need cysts to have PCOS. I think Kat or someone may have even posted an article about this somewhere on here. My last ultrasound showed no cysts at all. The thing about cysts is that during different times throughout the month or throughout your cycle they can come and go. This month you could have none and next month you could have 20- it just depends on when the ultrasound is taken. It's a shame that there are still so many doctors that have no idea what they are talking about when it comes to this awful condition. I'm sorry that you had to deal with one of them. If you could, I would try to visit a new doctor. Maybe check the refferal area on this site and see if any good drs are mention that are in your area. Good luck to you and try not to be discouraged.

cemomster · 01-04-2009, 08:57 PM

The cysts are not a confirmed diagnosis. I can have an U/S one month and not have cysts, go in 6 months later have them and go in even later and not have them. (it happens to me constantly!)

mallyns · 01-12-2009, 04:46 AM

Blood panel is the #1 way to doctors see if you have PCOS or not. All the US and other tests are a way to narrow it down and see why problems you might have and what symptoms you have. Remember this: Doctors are humans and they make mistakes. They do not have all the answers, which is why you have to be in charge of your health care. After all it is called a practice for a reason.

noonoomum · 01-12-2009, 10:42 AM

hi hun,

i was diagnosed in 2006 with no cysts visable but various other symptoms and my right ovary was half the size of my right them when i went again they couldnt find it so the time after it was there clear as day with 3 small cysts so as the ladies say there isnt a number limit to be in the ''club'' lol i would ask for a second opinion!!

love raych xx

mrsheino · 01-12-2009, 03:33 PM

I was dxed last year and I have no cysts on either ovary. The doc did say something about testosterone sensitivity but he also said PCOS because of the multiple symptoms and my blood work being in the normal high range.

brookieb03 · 01-13-2009, 10:35 PM

I too seem to have a conflict as to a diagnosis. All of my bloodwork seemed to come back normal. On US I was told my ovaries were quite polycystic, but looking at the whole picture my doc says no PCOS. I have a facial hair problem, but no hairloss, and I do have a weight problem that seems to be getting worse despite exercise and diet. Is it still possible that I have this even though my doc says no? Does your bloodwork have to be abnormal to be considered to have PCOS? I just feel like I have this and and screaming inside for help.

mallyns · 01-14-2009, 11:31 AM

Quote:

Originally Posted by brookieb03

I too seem to have a conflict as to a diagnosis. All of my bloodwork seemed to come back normal. On US I was told my ovaries were quite polycystic, but looking at the whole picture my doc says no PCOS. I have a facial hair problem, but no hairloss, and I do have a weight problem that seems to be getting worse despite exercise and diet. Is it still possible that I have this even though my doc says no? Does your bloodwork have to be abnormal to be considered to have PCOS? I just feel like I have this and and screaming inside for help.

How is PCOS diagnosed?

PCOS is most appropriately diagnosed by both blood tests and/or ultrasound. An ultrasound test can be used to assess whether polycystic ovaries are present. However, a diagnosis of PCOS should not be based on ultrasound alone because multiple cysts in the ovaries are not present in all women, and cysts can be present in normal ovaries.
Blood tests can provide a more definitive diagnosis of PCOS. Elevated levels of androgens, elevated fasting insulin and/or glucose levels, elevated levels of LH, and an elevation in the ratio of LH to FSH are all biochemical findings consistent with PCOS.

Lots of women have facial hair, it could be genetic. The weight problem can be something else. Are you taking meds? That could cause weight gain. Are you sure your diet is correct? Some diets are very bad for you and if you are not careful some foods contain hidden things which will cause you to gain weight. Are you seeing someone for your diet?

PCOS is a hormone problem. Blood work is they to test that. Talk to your doctor about other causes for your weight gain. I hope you find out what is wrong with you.

Stacie M · 01-14-2009, 04:04 PM

Quote:

Originally Posted by mallyns

How is PCOS diagnosed?

PCOS is most appropriately diagnosed by both blood tests and/or ultrasound. An ultrasound test can be used to assess whether polycystic ovaries are present. However, a diagnosis of PCOS should not be based on ultrasound alone because multiple cysts in the ovaries are not present in all women, and cysts can be present in normal ovaries.
Blood tests can provide a more definitive diagnosis of PCOS. Elevated levels of androgens, elevated fasting insulin and/or glucose levels, elevated levels of LH, and an elevation in the ratio of LH to FSH are all biochemical findings consistent with PCOS.

Lots of women have facial hair, it could be genetic. The weight problem can be something else. Are you taking meds? That could cause weight gain. Are you sure your diet is correct? Some diets are very bad for you and if you are not careful some foods contain hidden things which will cause you to gain weight. Are you seeing someone for your diet?

PCOS is a hormone problem. Blood work is they to test that. Talk to your doctor about other causes for your weight gain. I hope you find out what is wrong with you.

Actually, many women with PCOS have blood levels that all fall within the normal range. I have never had a test come back high. I have had many in the high end of normal, but never out of the normal range. I believe there is an article here on SC about that...

ETA: Also, most docs don't look at LH:FSH ratio. The look that both #s are in the normal range and leave it at that, even though they obviously should take into consideration the ratio.

mallyns · 01-14-2009, 06:10 PM

Quote:

Originally Posted by Stacie M

Actually, many women with PCOS have blood levels that all fall within the normal range. I have never had a test come back high. I have had many in the high end of normal, but never out of the normal range. I believe there is an article here on SC about that...

ETA: Also, most docs don't look at LH:FSH ratio. The look that both #s are in the normal range and leave it at that, even though they obviously should take into consideration the ratio.

I can only talk about what my doctor does, I realize not everyone is as lucky as me to have such a great PCP.

In my experiences both with my doctor and the blood work I had done at my school last year, I have always been told if something falls on the high or low level of normal.

The person I responded to didn't say if they were in the high/low level of anything. Now, it could be her doctor doesn't do what my doctor does when giving the test results or that my school did.

I'm not a doctor. There are other things that it could be causing her problems. Which is why I said she should have them checked out and talk to her doctor. But I have seen many people watch/read/hear about some odd illness and swear that they have it and go to their doctor and when they are told they are fine, keep looking for a doctor until they get told they have something. I'm not saying that is the case, but rule out everything first.

Raskle · 01-18-2009, 12:56 AM

Quote:

Originally Posted by Tigger1965

They did an internal ultra sound and apparently my multiple cysts have disappeared and I only have about 6 on one ovary which is not enough to be diagnosed with PCOS!!....

I am still really angry and upset and feel like just giving up trying to find out what is wrong with me.

My Dr mentioned that she usually doesn't even do an ultrasound unless the blood tests infer a look is needed. She let me know that the cysts can come and go and that the "old way" to dx PCOS was by ultrasound alone... Just some food for thought (and its no sugar/low carb...lol@myself...)

GothicRavenGoddess · 01-19-2009, 03:49 AM

yeah, I have to educate my Dr. Its sad, really. I think that I'm going to look through their Dr's and see if there's someone else I can talk to. Mine still thinks that my left ovary hurting every month is because I pulled a muscle. I mean, really? I pull the same muscle every month, right when I'm suppose to have a period? and if I don't have a period, it hurts until I do? ugh... Dr's are a pain in the ass to deal with. If I get a male Dr, he better be an expert in the field... I think that if any of us has had a decent Dr experience, they are lucky. for something that is so prevalent, no one knows a lot about it. and that sucks. Keep searching for someone who will listen, and not just the "i'm hearing what you say, but I'm the Dr, so its going in one ear and out the other" I just want to shout to these idiots

" YOU MAY BE A DR, BUT I'VE HAD TO LIVE WITH ME FOR THE PAST 23 YEARS, I THINK I KNOW MY OWN BODY!!!"

oh yeah, i didn't have ANY cysts, when I was diagnosed. but I didn't have a chance to go through my normal shaving ritual, so the Dr's could see that I was covered in excess body hair (I originally went to the hospitol because i just wouldn't stop bleeding... that was incredibly scary-- the the official diagnosis on the paper doesn't even say PCOS, but that's what the Dr kept telling me I had... "Dysfunctional Uterine Bleeding" Thanks for that, i could have come to THAT conclusion. )
Good luck, hun.

Raskle · 01-19-2009, 08:27 PM

Quote:

Originally Posted by GothicRavenGoddess

Mine still thinks that my left ovary hurting every month is because I pulled a muscle. I mean, really? I pull the same muscle every month, right when I'm suppose to have a period? and if I don't have a period, it hurts until I do?
Good luck, hun.

Groan! I hate it when people dont believe you about things! I had drastic knee surgery last year (fell on the ice and literally broke off part of my kneecap...yeah not fun!) and was told by the physical therapist that I was walking wrong...I pointed out that I had done it this way my whole life, and her response was: "Well, your young. You can be taught"