Discussions By Condition: Fertility conditions

PCOS Misdiagnosis

Posted In: Fertility conditions 14 Replies
  • Posted By: Anonymous
  • November 20, 2007
  • 06:59 PM

After 1 1/2 years of trying to get pregnant and 1 1/2 years of "try harder" and "come back when you are pregnant," I finally was referred to a specialist who did an ultrasound and diagnosed me with PCOS. He explained that all of the black circles on the screen were numerous cysts on my ovaries. Alarmed, but determined, I continued to try to conceive for another 4 years with no success. We also began the process of trying to adopt through DSS because we wanted a big family. Last month I changed doctors out of frustration and my new doc sent me to another specialist who is world renowned. The new specialist did an ultrasound and found that I was perfectly fine, with no PCOS and no cyctic ovaries....in fact, the same black circles appeared on the screen, which both he and his assistant immediately determined were viable eggs within my ovaries...not cysts.
While this is wonderful news, I am so heartbroken over the years we have spent trying to conceive and the misdiagnosis. I feel like, had we known then that I was ok, we could have immediately looked into hormonal levels, sperm counts, and other issues that might have been factors. As it is, we can still try, but we have always wanted a big family, and have not yet even started at 31 yrs. old.
I am just wondering if others have had this experience...and what happened as a result. I feel like, while my misdiagnosis is not deadly, I have greatly increased the likelihood of no biological children or complications with pregnancy. Just looking for support out there. Thanks in advance!!!

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14 Replies:

  • I would say the first Dr was negligent if he diagnosed you with PCOS and then didnt run anymore tests or offer any treatments. PCOS itself is very treatable and alot of women who have it can concieve with fertility drugs. Hormone levels should always be checked with a diagnosis of PCOS anyway. You probably dont have any legal recourse, but WOW was that Dr bad.
    CassAnn 25 Replies
    • November 21, 2007
    • 11:34 PM
    • 0
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  • I have PCOS and they never bothered to send me for a scan. All they did was test my testosterone levels (which are high) and then told me I had it. I want the scan but every time I ask for one the doctor looks at me like I just copped a squat on his desk.:(
    Anonymous 42,789 Replies Flag this Response
  • I really do feel for you. How wrong was that first doctor! How on earth did he mistake the eggs as cysts! The eggs grow inside follicles which grow larger as they mature. They are very easy to see through ultrasound. I've seen my own grow whilst I underwent IVF so how a doctor mistook them for cysts is very shocking. I sympathise with you. It is very difficult to understand and to cope with when a woman yearns to have a child. Only a person in similar circumstances really understands. I suffer from endometriosis, it has affected my fertility terribly. It is much better over the last few years but I had it severe when I was younger. I'm still young enough to have a baby but IVF has been my only option. I have had success through IVF (twice), but unfortunately my first I lost very, very early on (6th week, barely when I just found out), but more traumatically when I was nearly 12 weeks. I knew something was wrong with me when I was very young, I had terrible period, with intolerable pain due to my endometriosis. I waited a long time to get anything done (perhaps because I was married and wasn't looking to get pregnant maybe I didn't push enough), but when I got married I wanted to try straight away but it was a good few years before I was sent for a laparoscopy to find out what was really going on. You just know when something's not right. I got married at 24 and didn't get a laparoscopy until I was 27! It's frustrating being told to go away and keep trying. I do understand your plight. You could perhaps ask to have your ovulation levels checked, this could give you a good idea how well you are ovulating. Each month, you ovulate from alternate ovaries, so one month you may ovulate from the left ovary, next month it would be the right. I didn't know any of this until I starting researching my condition. I wish you well in your quest for motherhood. :) 2 Have Hope.
    2 Have Hope 22 Replies Flag this Response
  • Mom in Waiting, 2 Have Hope and others suffering from infertility: Please try acupuncture! I cannot recommend this highly enough to help get you back in balance. Acupuncture has a very good track record in treating infertility and is excellent for endometriosis as well. Wester fertility treatments are incredibly invasive, and often counterproductive to conception (clomid actually causes your cervix to be inhospitable to a fetus and causes increased miscarriages not to mention weight gain). Visit www.acufinder.com for info. Try to find a practitioner who is also a certified Chinese Herbalist, as this is the most beneficial IME. 31 is still VERY young, and don't let the docs say you are "over the hill" to have children. Try acupuncture and see what happens. It works! Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • Thanks for the response, I'm sure your information will help others. Education is the best place to start so thanks for the link. The fact I have become pregnant, whether it be through IVF, does leaves me hope for the future. I'll look into the link you provided and can I thank you once again for your help. I've been seriously ill for some time and I'm afraid my yearning for a family has had to take a back seat. Once I get my health back getting pregnant will firmly be at the top of my agenda. :) Thank you. 2 Have Hope.
    2 Have Hope 22 Replies Flag this Response
  • I think even a 3rd opinion would be in line. I suffered from polycystic ovaries for 20 years and underwent no less than 20 ultrasounds through those years and seven surgeries to relieve the pain they caused. I personally highly question the second doctor's diagnosis. MOST eggs within the ovaries are NOT visible by ultrasound until just prior to ovulation, in which case there should normally only be one or two maturing for release. If there are a more than one or two "black spots" visible by ultrasound for any length of time my bet would be that they are cysts. I had seven or eight on each ovary many times and every time I had a laparoscopy it was confirmed that they were cysts. One BIG clarification needs to be made: The cysts on the ovaries may very well be mature eggs: but the thing with polycystic ovaries is that those eggs many times mature, but are never released, they remain on the ovary month after month while new eggs also mature and don't release, thus the ovary becomes very enlarged and "polycystic". There are many things that can happen from there, the cysts can rupture and bleed (painful), or the ovary becomes so enlarged it becomes very painful, or the ovary may just shut down. In any case, there must be treatment, which can range from laparoscopy, to an open abdominal surgery, simply giving the ovaries a rest by suppressing ovulation with birth control, or the fertility drug clomid to aid in the FULL maturing and RELEASE of the mature egg. Better yet, research has shown that Polycystic Ovarian Syndrome (PCO) is linked to unsulin irregularities and a simple pill (usually metformin) taken once or twice a day can miraculously get those stubborn ovaries to release those eggs and stop forming cysts. Please don't give up, I tried all of the above. The surgeries alleviated a great deal of pain and it was actually the insulin medication Metformin that got me ovulating normally and I was able to concieve.
    shelljax 2 Replies Flag this Response
  • Hi Shelljax (and others) Sorry, you sound as if you've been through the mill too. Infertility can be such a sad time and lonely time for a person to go through. All the tests can be frustrating too. I didn't have much tests done, it was like pulling teeth with my doctors really it was. I found it frustrating. I must correct myself in my earlier post where I say the eggs can be easily seen through ultrasound. I was talking about my experiences through IVF where the FOLLICLES (not eggs), can be seen through ultrasound. (Usually there's one egg in each follicle but it has been known that not all follicles contain an egg, although it's never happened to me through IVF). I can understand why a follicle could be mistaken for a cyst, because on one of my IVF cycles I had a large cyst growing which I suppose did look a bit like a large follicle to me. I woudn't know the difference between a cyst or a follicle but I should think or rather EXPECT a doctor to know. It's quite amazing to see your follicles grow in size, I found it all fascinating. Unfortunately my endo was so bad I was told by the doctors IVF was my only chance of ever falling pregnant (which I have done twice but unfortunately I lost both babies, (one very early on and one just about 3 months). I didn't lose my babies because of the endo, or so I was told but they blamed bad luck, or that's how they put it. It's so so hard when you lose a child but much much harder to come to terms with when it's IVF because there are many factors to take into account, and money is a big one, it's so expensive. My first ever IVF cycle, I managed to get 18 eggs. I was able to go through frozen cycles and this saves a lot of money because you don't need to go through the whole cycle of drug-taking etc. My second conception was through a frozen cycle but it didn't go beyond three months. I have friends who suffer from pcos, it sounds horrendous too. My best. 2 Have Hope.
    2 Have Hope 22 Replies Flag this Response
  • The reason acupuncture and Traditional Chinese Medicine works so well for infertility and women's disorders is because it is a whole body medicine. It is SO much less invasive than IVF and studies have shown it actually increases the success of IVF treatments... My feeling about Western fertility treatments is that they cause so much MORE stress to the couples... The fact you were pregnant is a very good sign. Again, please research acupuncture it is very much worth looking into. I have only treated two women for infertility (Hope to treat many more in the future!) and BOTH women became pregnant, and carried their babies to full term. One with twins, now 9 mos old, the other has a 2 year old girl. My first patient was getting ready to have IVF treatments, had had two miscarriages, and then just decided to stop ALL Western treatments (except metformin) and take a rest...five months later she was pregnant! There are factors that come into play that have nothing to do with Western science. Whether you believe in God or not, there are forces beyond anyone's control. I feel that Western treatments are all about controlling all of the factors needed for conception, and they miss this very important point. I hope that makes sense. Best wishesDOM
    acuann 3,080 Replies Flag this Response
  • Hi Acuann Thank you so much for your response. It's very much appreciated. A lot of what you say makes sense. You are obviously well up on this subject and understand many areas of infertility. You must feel really good about helping people become parents. You say you have treated a couple of people. You must feel really good about that. I hope you are able to help many more people out there and I'm sure you will. It must give you a great sense of fulfilment too. Thanks again for your valued opinion. 2 Have Hope :-)
    2 Have Hope 22 Replies Flag this Response
  • maybe im not sure
    Anonymous 42,789 Replies Flag this Response
  • My husband and I have been trying for about 2 years now and even though I was ovulating every month and having regular periods, a nurse practitioner diagnosed me with PCOS and put me on metformin. After taking metformin for months, I decided to go to a fertility specialist for a second opinion. He told me that I have absolutely no symptoms or signs of PCOS. My bloodwork was perfect, I am in good shape and i have no cysts on my ovaries. He has no ideas why the NP diagnosed me with PCOS. This frustrates me even more becauase I feel as though I was on medicine for months that might have interfered with conceiving.
    Anonymous 42,789 Replies Flag this Response
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  • Did you have any other PCOS symptoms???? How frustrating!!!! I have PCOS and am taking Yasmin for it (insurance company just dropped it due to ppl having strokes and blood clots). My PCOS Symptoms:Depression / Mood Swings - I'm angry and irritable all the time too.Weight gain - I'm 100 pounds overweight. I've gained 10 pounds a year for the last 10 years.Diabetes - Taking MetforminHigh Blood Pressure - Taking Blood Pressure meds (this is due to weight gain)Sleep Apnea - (do to weight gain) I have stopped breathing in my sleep before.Skin TagsDark Velvety Skin Patches under the arms, on the neck and groin area.Male-type hair growth (hirutism) on the face and body - I have to shave my arms daily and pluck my neck and face.Hyperandrogenism - Too many male sex hormones (androgens) in the system.AcneOily SkinSever DandruffLiving with PCOS symptoms has affected my sense of well-being, sexual satisfaction, and overall quality of life. This too has led to depression.I have thought about having my ovaries taken out. Will this cure it? There seems to be no cure, no causes, just the symptoms and cause of this disease. I don't want to treat each symptom and I don't want to be on birth control for the rest of my life. I'm on too many medications!Anyone else out there with this???? Can you help??? I've been told there are no treatments by my regular physician and told that I can't have a hyterectomy because of my age at the time (25) - (I'm 30 now) and because I had no biological children of my own - Even though I have adopted two children.
    crystalwoo 2 Replies
    • October 20, 2009
    • 04:42 PM
    • 0
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  • hi,i was told by my ob-gyn that i have pcos. I read up online on the symptoms and don't really know if it's a correct diagnosis. I am not overweight, no acne, no excessive hair. WHat other tests can I take? I had ultrasound scans and was told i had multiple cysts. We are trying to conceive now, and i am kind of upset about the diagnosis. thanks!
    Anonymous 42,789 Replies
    • October 23, 2009
    • 03:05 PM
    • 0
    Flag this Response
  • hi, i was told by my ob-gyn that i have pcos. I read up online on the symptoms and don't really know if it's a correct diagnosis. I am not overweight, no acne, no excessive hair. WHat other tests can I take? I had ultrasound scans and was told i had multiple cysts. We are trying to conceive now, and i am kind of upset about the diagnosis. thanks! You can get your hormone levels checked by an Endrocrinologist. If you have it, your androgen levels would be high.
    crystalwoo 2 Replies
    • October 23, 2009
    • 11:05 PM
    • 0
    Flag this Response
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