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  • Does this sound like Pcos to you??

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    Old 07-18-2008, 10:48 AM   #1
    nessanjeff
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    Does this sound like Pcos to you??

    Hi everyone! Lets see where to begin. At my very first menstrual cycle at age 11, I had surgery to remove a ovarian cyst on my right side, which they said twisted around my fallopian tube and killed it. So they put me on birth control pills. I was on them from age 11 until approximatley age 21. I got pregnant after stopping the pills, with one fallopian tube. I have always had slightly darker hair on my upper lip. Well now at age 32, still got the lip hair and now acne. Last yr had to have another surgery for an ovarian cyst which was the size of a pineapple and they took out the other fallopian tube and an ovary. Since my pregnancy 10 yrs ago, I have this huge stomach. Everything else seems to be proportioned right except the fat stomach. So again I have had ovarian cysts since puberty, hairy lip and the past ten yrs acne. Oh and had some blood work done for thyroid and have high dheas. Normal is 40-325 and I am at 476. So just trying to see if there is any relation to all this. Thanks for reading.

    Nessa

     
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    Old 07-18-2008, 02:27 PM   #2
    estria
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    Re: Does this sound like Pcos to you??

    Hello NessanJeff,

    I too have been hirsute since puberty and shortly after my first period my parents took me to see an endocrinologist to see if there was any problems with my hormones. I have also always had a bad acne problem and still do (I am now almost 42). At that time they found my testosterone level to be just slightly higher than normal but not by a lot. My mother took me to have electrolysis and this removed my facial hair (upper lip, between the eyebrows, and around the chin area). When I turned 20 I went on the birth control pill and stayed on it until age 41. At 41 I started to have problems on the pill so I stopped it and this is when they discovered an 8 cm cyst on my left ovary. They did more hormone tests and now my testosterone levels were completely normal, probably because the birth control pill is known to bind testosterone and this does not reverse even after the pill is stopped. My cyst is still there though and I am keeping an eye on it. My thyroid is verging on the high end of normal but no action is yet warranted (no symptoms).

    You and I therefore have a lot in common and all of these things could very well be connected since the ovaries control hormonal levels. Facial hair and acne are supposed to be caused by elevated levels of testosterone and ovarian cysts .. well no one really knows what causes unusually large and persisent cysts or complex cysts. Women do grow simple functional cysts on their ovaries every month as part of their normal ovulation but sometimes our systems produce very large and persistent simple cysts or complex cysts and this seems to be quite common.

    I personally think it may be related to hormones but doctors don't seem to check this when a woman is discovered to have an abnormal cyst on her ovaries. Not sure why this is so.

    I am not sure I have been of much help but just to let you know that you are not alone.

    Take care.

     
    Old 07-20-2008, 10:34 PM   #3
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    Re: Does this sound like Pcos to you??

    Quote:
    Originally Posted by nessanjeff View Post
    Hi everyone! Lets see where to begin. At my very first menstrual cycle at age 11, I had surgery to remove a ovarian cyst on my right side, which they said twisted around my fallopian tube and killed it. So they put me on birth control pills. I was on them from age 11 until approximatley age 21. I got pregnant after stopping the pills, with one fallopian tube. I have always had slightly darker hair on my upper lip. Well now at age 32, still got the lip hair and now acne. Last yr had to have another surgery for an ovarian cyst which was the size of a pineapple and they took out the other fallopian tube and an ovary. Since my pregnancy 10 yrs ago, I have this huge stomach. Everything else seems to be proportioned right except the fat stomach. So again I have had ovarian cysts since puberty, hairy lip and the past ten yrs acne. Oh and had some blood work done for thyroid and have high dheas. Normal is 40-325 and I am at 476. So just trying to see if there is any relation to all this. Thanks for reading.

    Nessa
    when i went to my doctor she explained to me that she would have to check the DHEAS levels because sometimes,when they are high,they tend to convert to testosterone which could be causing the facial hair i am experiencing.

    I am yet to do some reading to get a clear understanding of what she said but perhaps this would give you a lead since your DHEAS levels seem to be high.

     
    Old 07-22-2008, 08:23 AM   #4
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    Re: Does this sound like Pcos to you??

    Hey thanks for replying. Sorry about the delay in my repsonse had a semi busy weeekend. Anyways Estria it does sound like we have things in common. My thyroid is also on the high end of normal. I had the raiu done and it came back at 32% upake. So again nothing major. I just want to know what is happening with my hormones and can't seem to get a straight answer. I had my yearly pap done yesterday and I asked the doc about the pcos. She pretty much blew me off and asked if i had hair everywhere? I said no and that was it. She did take alot of blood, so no telling what the tests were, since they dont tell us much. I will keep posting after I get my labs back. Take Care.

    Nessa

    Last edited by nessanjeff; 07-22-2008 at 08:24 AM.

     
    Old 07-22-2008, 12:31 PM   #5
    estria
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    Re: Does this sound like Pcos to you??

    Hi Nessa,

    I have also asked about PCOS but my doctors say that I don't have this, despite the hirsutism, acne and ovarian cyst. I think that PCOS may also involve irregular periods, weight gain (although I have always had a problem with my weight but this is common for women) and cholesterol problems (I do have high cholesterol but due to my HDL and not LDL .. ie. my "good" cholesterol is higher than normal). When I mentioned my lifelong problem with hirsutism, my doctor did check my pituitary gland to ensure that this is normal. This came out OK.

    Sometimes I wonder if we are perhaps borderline cases which show test results as on the high side of normal but are not high enough to warrant an "official" diagnosis. Keep in mind that just because your tests are in the so called "normal" range this does not mean that this is normal for you. These normal ranges are based on the general population. For example, endocrinologists are currently revising what is considered a normal TSH level. They believe that instead of the previously accepted range of .5 to 5.0 the range should now be .3 to 3.0 or perhaps even 2.5. This is because it is thought that in the original group of people who were tested in order to come up with the normal levels, there was a significant number who had minor hypothyroidism and therefore skewed the normal ranges. According to these new ranges, I am now supposed to be considered hypothyroid (my level is at 3.80).

    Let us know how your tests come out.

    All the best.

    Estria

     
    Old 07-31-2008, 10:06 AM   #6
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    Re: Does this sound like Pcos to you??

    Well had lots of blood tests done and my testosterone was normal. So my doc is sending me to an endocrenologist for the Hashimotos Thyroiditis and My high levels of Dheas. So after this i will let you know. I did find out last week, I have another ovarian cyst on my right side, i only have one ovary left. So I went to the gyno this week to find out what I should do about this. He says since i had the basketball sized cyst last yr and it was borderline cancer cells. That he is recommending a hysterectomy. So I am having it done the 13th of august. He is taking out the ovary and the uterus. Im scared becasue I will go into menopause at the age of 32. I will keep you guys posted. Thanks

    Nessa

     
    Old 07-31-2008, 10:33 AM   #7
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    Re: Does this sound like Pcos to you??

    Hello Nessa,

    I am bit confused. Did you not say that when you were 11 you had an ovarian cyst that twisted your ovary and killed it ? Then in another post you said that last year they removed a large ovarian cyst with another fallopian tube and ovary. Did they perhaps only remove your fallopian tube when you were 11 and leave the ovary in tact and last year they removed this unattached ovary and your other fallopian tube ? Meaning that you would have one ovary left and no fallopian tubes .. correct ?

    You did not mention in your previous posts that the cyst they removed last year contained borderline cancer cells. In this case, why on earth did they not take everything out then and there ? At any rate, I think that under these circumstances this is a prudent decision to take. Don't worry so much about going into surgical menopause but rather be thankful that if there are any more borderline cancer cells on the remaining ovary they will be removed. Surgical menopause is normally treated with hormone replacement therapy but discuss this with your doctor as hormonal therapy is usually not recommended for women with a history of breast or ovarian cancer. Thank goodness, they removed the borderline cancer cells before they became cancer.

    All the best and I wish you the speediest recovery from your surgery.

     
    Old 07-31-2008, 01:28 PM   #8
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    Re: Does this sound like Pcos to you??

    So sorry about the confusion. Yes when I was 11 I had an ovarian cyst removed along with the left tube. At this point I had both ovaries. Last year I had a basketball sized cyst which contained borderline cancer cells. They removed the cyst, my other tube, and my left ovary. So now I have one remaining ovary and no tubes. I was told after the surgery last year to just have regular paps done. So this is what I did and again they found another cyst. I also forgot to say that after the surgery last year, when i was having my 4 week checkup they found something else growing on the same side. So I had to have another laparoatomy to get the blood clot that they found. So last year I had two laporatomy's. I guess they didnt want me going through menopause so soon is why they didnt do the hysterectomy last year. But I am not going through surgery year after year. Would you do the same thing Estria? Thanks
    ]Nessa

     
    Old 07-31-2008, 06:06 PM   #9
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    Re: Does this sound like Pcos to you??

    Hello Nessa,

    You should know that pap smears will not uncover a problem with the ovaries. Paps are only for cervical cancer and I have recently found out that there is a glandular type of cervical cancer that the pap cannot test for. Women over the age of 30 should also have an HPV test to see if they have any of the high risk strains of the HPV virus in their system. If not, then cervical cancer is unlikely and they should simply be retested every 3 years (according to the new norms of American gynecologists .. we Canadians are still behind on this and I will be asking my doctor about the HPV test at my next appointment). Women under the age of 30 are more likely to fight off the HPV virus and should simply have a pap every year (according to these new norms).

    Also, having a hysterectomy will not put you into surgical menopause, removing that last ovary will. The ovaries are the things that regulate your hormones and even with your uterus in tact, no ovaries means no hormones which in turn means you would have to take hormone replacement therapy or face early menopause.

    After the removal of the cyst which contained borderline cancerous cells, what did your doctors tell you ? Were they confident that all of the cancerous cells were taken out with that ovary ? And why exactly did they take the tube out but not the remaining ovary ? Was there a problem with the tube perhaps ? I assume that you are seeing a gynecological oncologist for this ? If not, I would definitely consult one just to be sure that you are being proactive and preventing any possible problems. Do they do a CA-125 blood test every year for you ? I know that there are many forms of ovarian cancer, some of which are much slower than the most commonly known form that comes from the epithelial lining of the ovaries (or the abdomen).

    When it comes to cancer, especially ovarian cancer, you need to be extremely cautious and be sure that everything is covered. I do not believe in the unnecessary removal of gynecological organs but where cancer is concerned I think that we are fortunate that those organs are not required for our survival. Follow your doctors' instructions and don't ever miss a check up. I have several friends who became complacent after beating back cancer only to have it come back because they either forgot to have an important test done or because they delayed their yearly checkup. Fortunately they are still alive but only after painful chemotherapy which may have been avoided had they kept up with their protocol.

    You are fortunate to have had that cyst removed when the cells were still at the borderline stage. Thank goodness for this.

    Take care and all the best.

     
    Old 08-04-2008, 02:54 PM   #10
    nessanjeff
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    Re: Does this sound like Pcos to you??

    Quote:
    Originally Posted by estria View Post
    Hello Nessa,

    You should know that pap smears will not uncover a problem with the ovaries. Paps are only for cervical cancer and I have recently found out that there is a glandular type of cervical cancer that the pap cannot test for. Women over the age of 30 should also have an HPV test to see if they have any of the high risk strains of the HPV virus in their system. If not, then cervical cancer is unlikely and they should simply be retested every 3 years (according to the new norms of American gynecologists .. we Canadians are still behind on this and I will be asking my doctor about the HPV test at my next appointment). Women under the age of 30 are more likely to fight off the HPV virus and should simply have a pap every year (according to these new norms).

    Also, having a hysterectomy will not put you into surgical menopause, removing that last ovary will. The ovaries are the things that regulate your hormones and even with your uterus in tact, no ovaries means no hormones which in turn means you would have to take hormone replacement therapy or face early menopause.

    After the removal of the cyst which contained borderline cancerous cells, what did your doctors tell you ? Were they confident that all of the cancerous cells were taken out with that ovary ? And why exactly did they take the tube out but not the remaining ovary ? Was there a problem with the tube perhaps ? I assume that you are seeing a gynecological oncologist for this ? If not, I would definitely consult one just to be sure that you are being proactive and preventing any possible problems. Do they do a CA-125 blood test every year for you ? I know that there are many forms of ovarian cancer, some of which are much slower than the most commonly known form that comes from the epithelial lining of the ovaries (or the abdomen).

    When it comes to cancer, especially ovarian cancer, you need to be extremely cautious and be sure that everything is covered. I do not believe in the unnecessary removal of gynecological organs but where cancer is concerned I think that we are fortunate that those organs are not required for our survival. Follow your doctors' instructions and don't ever miss a check up. I have several friends who became complacent after beating back cancer only to have it come back because they either forgot to have an important test done or because they delayed their yearly checkup. Fortunately they are still alive but only after painful chemotherapy which may have been avoided had they kept up with their protocol.

    You are fortunate to have had that cyst removed when the cells were still at the borderline stage. Thank goodness for this.

    Take care and all the best.
    Hey Esteria,
    My doc told me after removing the borderline cancerous cyst, to just have regular paps every year. I am now seeing a different gyn as the surgeon last yr was an oncologist. I have had a hpv and a ca125 test done. They both came back normal. Yes I agree about keeping all of your organs except when it comes to cancer. They are removing this cyst also because it is complex. I guess just having a hysterectomy sounds scary. Thanks for making me feel better. Take Care
    Nessa

     
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