Re: To Kate re:Please, can anyone help me?
From: anonymous (anonymous@obgyn.net)
Mon, 12 Feb 2001 05:33:37 -0600 (CST)
Dear Kate,
i would make another visit with your GP and get him/her to pursue your
situation and hopefully he/she will liase with the hospital for an
urgent referral to get the scan brought forward AND since you are in a
great degree of discomfort.
Its appalling that your Specialist treated you with utter disrespect and
accusations. Sometimes this is pure ignorance and arrogance. I am sure
this has left you with those emotional scars which has undermined your
confidence!
Put that experience behind you now and hopefully your gynae will be more
sympathetic and have better interpersonal skills.
The fact that you are experiencing pain means that all is not right with
your body systems. Pain is a natural reponse for a 'warning sign' or
indications of something going on.
Your abdominal pain could be muscular, it may not. You may want to
consult your doctor about strengthing your back and abdominal muscles
through exercise since muscle fatique and weaknesses could cause some
discomfort. However the pain could be due to ovarian cysts that were
not early detected.
The most important thing is how to manage your pain control maybe during
the time you have to wait for that scan.
Sometimes we patients have no options but to persevere to get anywhere.
Maybe i am slightly lucky since i am a Registered Nurse but even though
pcos is new to me, i suppose it helps to have underpinning knowledge of
medical terminology, formalities etc and so i hopefully know what
questions to ask!
But like you, i initially felt at a loss. I was told by a doctor who
called me back re blood results that all were normal. Imagine my
suprise when i actually had an appointment with my GP to be told that
with my first blood results i had a raised prolactin and low
progesterone and my second repeat bloods showed the prolactin was still
high and progesterone was low. It was not until my first appointment
with my gynae that i found that my second blood results were normal
apart from progesterone being still low. The next thing was that i was
told both my LH and FSH was normal but then was told to have reapeat
since the samples were not taken during the right time of my cycle. Then
my husbands semen analysis, he was told everything was okay apart from a
FEW slow motility ones. Again it was not until we had our Gynae visit
to be told not only did i possibly have PCOS from scan findings but my
husbands semen infact showed only 13% good molity sperm when they like
to see 40%..........so like you i or we feel so misinformed since we are
having conflicting results given to us!!!
Regarding your abdominal distention, avoid too much high fibre diets if
you can as that can cause some bloatedness. It may help. Its the pain
thar really has to be controlles probably why you feel so depressed.
Have you tried any complementary therapies? I am a strong believer in
holistic alternatives and i am having reflexology at the moment which
has helped immensley. Through my own stressful time with PCOS and ttc,
whereby my periods used to be so heavy and irregular. they are now
shorter in length and lighter and i only have small cramping feelings
during menses. Also it has helped try and uplift my spirits more than
anything. I know some people may not be able to afford it or its not
their preference but sometimes for others it does help even alittle.
You are NOT greedy or NOT being greedy making you fat. If you were you
would not of gone to see your doctor with your weight problem and other
ailments in the first place, would you? Those unkind comments, you have
to think yes okay it was cruel but equally it was untrue. And anyway
you had the last laugh because you knew you were right and they had to
eventually admit their wrong doings!!!
I am suprised that asked you to come back two weeks after the scan with
the results. If they are doing the same scan as i had, they could tell
striaght away.
Think that this time your new endo clinic will be better than your
last!!!!
Write back anytime if you want to chat more, i'll listen.
Take care
At Mon, 12 Feb 2001, Kate wrote:
>
>Hello, thanks for your reply - I'll try to clarify:
>
>I have been on Thyroxine for two years now and my dose is optimised at
>200mcg - my GP has agreed to look into the remote possibility that I may
>need T3 supplementation but that is unlikely. So the thyroid position
>is definitely covered and monitored on a 3 monthly basis.
>
>The endos here humiliated me by telling me that I was fat and ill
>becuase I was greedy and lazy. They lost my blood test results, misread
>another set of results and then finally had to admit that, yes, I was
>hypo - oops , sorry! They were ghastly to me, reduced me to tears every
>time and ignored my pleas for further investigations. Luckily, there is
>an alternative endo clinic headed by a much nicer consultant who dealt
>with my gestational diabetes and I will be going back to them, I think.
>
>My scan is to be repeated by my gynae but this will mean a wait of at
>least six weeks, maybe 12. In the meantime, I am not having any
>treatment and my life is hell. As I write I am experiencing abdominal
>distension and pain with a sick dragging feeling that is almost
>unbearable - like my insides are about to collapse out. I can't wear
>normal clothes comfortably. My blood tests have already been done but
>only for the usual hormones, I don't think he asked for any lipid tests
>and I haven't had a GTT.
>
>I can't see the consultant again until my scan is done - I have to make
>an appointment for two weeks after the scan so as to allow for the
>results to come through.
>
>In the meantime I have to live like this and I can't bear it anymore.
>
>I think I am asking for moral support and self help tips, but I have to
>admit to being pretty distraught - this has been going on for two and
>half YEARS!!
>
>Thanks again for your advice.
>
>At Sun, 11 Feb 2001, anonymous wrote:
>>
>>Dear Kate,
>>
>>like you, i have pcos and i am from the UK. You are quite right that
>>you have all the symptoms of PCOS and its so frustrating when you feel
>>that you are at a loss. You mention that you have been diagnosed with
>>hypothyroidism and now having treatment, for how long? An Underactive
>>thyroid clinical symptoms can sometimes present itself similiar to pcos.
>>
>>For example, the metabolic rate with underactive thryroids are slower so
>>weight gain despite whats eaten can occur. The hair can become dry,
>>brittle and thin. Menstrual irregularly is common too. Oedema in
>>severe cases can also occur. You mention that you are overweight, is
>>this with 'fat' or oedema? Along with apathy, fatique, depression can
>>also be common indicators of both pcos and low thyroxine levels. If you
>>have not taken the thyroxine for that long, it may take a while for it
>>to be effective. Also it could mean that you may need the dosage
>>increased.
>>
>>My advice would be
>>
>>1) revisit your doctor and request a repeat thyroid function test and
>>thyroid blood test. At least whatever the outcome, your medication can
>>be adjusted accordingly.
>>2) I would gather that you already have had fasting blood sugars since
>>your doctor is considering putting you on metformin. It might also be
>>worth considering to be referred to a dietician or diabetic nurse
>>specialist who can advise you on your dietrary requirements and
>>management. Request this from your GP.
>>3) The fact that your hormone levels were normal 9 months ago, does not
>>necessarily mean that they are okay now. Your GP or Specialist could do
>>a repeat FSH, LH, Testosterone,oestrogen, prolactin and progesterone.
>>4)To treat your acne, apart from a good low carb and well balanced diet,
>>has your doctor suggested any topical or medication to treat this?
>>5) The fact that you have irregular periods would indicate that you do
>>not ovulate regularly if not at all. Maybe your GP could arrange a 7dpo
>>progesterone test after when you think you have ovulated. The BCP can
>>sometimes be used for those women that do not want to get pregnant but
>>to manage and control the cycles somewhat. However the bcp are not
>>suitable for all and it tends to mask the symptoms rather than treat
>>them.
>>6) Heavy periods combined with thryroid disorders can cause possible
>>aneamia, so your GP could check your blood count levels too. Folic acid
>>or iron tablets supplements may need to be considered.
>>7) Altered metabolic rates can effect the absorption of nutrients, so
>>sometimes it is necessary to take supplements. Maybe Multi-vitamins may
>>help you.
>>8) Evening Primrose oil capsules are good for the balances of hormones
>>in women. Maybe these may help?
>>9) Reduce your salt and sugar in your diet. Too much sodium can cause
>>that water retention and bloatedness. Drink 8 glasses of water a day.
>>This will not only prevent fluid retention but help with the condition
>>of your skin.
>>10)The fact that you are depressed could be a combination of the medical
>>ailments that you are presented with along with the low-self esteem you
>>have about yourself. Its important that you try and not feel worthless,
>>ashamed and ugly because the lower ebb you feel, the more depressed you
>>will become. I know thats easier said than done. You must be at your
>>wits end since you have been running around in circles and the doctors
>>seem at a loss, but all you want is a diagnosis. Try and think postive
>>with the notion that your doctor will probably prescribe metformin for
>>you which should help immensley.
>>PCOS is a complex syndrome which is why maybe some of your docs have not
>>come to a conclusive diagnosis for you.
>>
>>We can sometimes feel humilated when we seek consultation from the
>>specialists when we ask questions that may appear silly or request
>>further tests only to be made to feel stupid. You don't mention how
>>your specialist humilated you. Even the most experienced consultant
>>does not necessarily have all the answers sometimes and there may be
>>those very few that won't admit they don't know, primarily since there
>>is a conception from the patients point of view that they should know
>>all! Sometimes the patient may know more about their body than the doc.
>>Try and not let that occasion make you lose confidence. Maybe you could
>>request a referral if that is an option?
>>
>>\you don't have to have cysts sometimes to have PCOS since it is caused
>>by imbalances of hormones which you appear to have.
>>
>>I know i have not given you crystal clear answers but i hope this has
>>helped a wee bit and write back anytime if you need more info.
>>
>>Good luck
>>
>>At Sun, 11 Feb 2001, Kate wrote:
>>>
>>>I have all the symptoms of PCOS - hirsutism, horrific weight gain, all
>>>my weight on my abdomen (I look 8 months pregnant), insulin resistance
>>>(we know because I was a gestational diabetic), lipid problems (I had
>>>gallstones), acne, depression, irregular, heavy and painful periods and
>>>general, constant abdominal discomfort.
>>>
>>>But, I have had three children without difficulty (and realise how lucky
>>>I am) and no cysts were detected on my ovaries last time I had a scan (2
>>>years ago). Nine months ago, when my gynaecologists checked my hormone
>>>levels they were normal but he says I am verys ensitive and that
>>>'normal' for me might be very low.
>>>
>>>All my adult life I have suffered from problem periods and erratic
>>>weight gain. Although I weigh 230 lbs at 5'6" I go jogging, cycling and
>>>walking and I am generally active and a busy mum of three. The latest
>>>bout of problems started after no 3 was born and has been truly
>>>horrific. the doctors who have been treating me have witnessed the
>>>terrible speed at which I put on weight and have also seen me suddenly
>>>drop 30lbs (only to have it return and then some). They all agree that
>>>there is something wrong with me but they don't seem to know what. If I
>>>don't have cysts I don't have PCOS even though I am a textbook case in
>>>every other way.
>>>
>>>If I can't get a diagnosis, what do I do? I don't want to live the rest
>>>of my life like this; I feel so ashamed, and so ugly, and so desperate.
>>>Does anyone know of a similar case? My gynae says he will put me on
>>>Metformin but I don't know if he means only if the tests this time show
>>>PCOS.
>>>
>>>My life is in tatters - I feel terrible, have lost my job and just want
>>>to be 'me' again. If anyone has any useful advice I would be so, so
>>>grateful. I still exercise but have stopped dieting as it was hopeless
>>>and made me so unhappy. Have not really decided what to do about my
>>>eating as I don't know what is wrong with me and it amkes no difference
>>>what I eat, anyway. Or don't eat!
>>>
>>>I am posting here from the UK. I have waited two and a half years to
>>>get anywhere near a diagnosis and now I am really scared I won't get
>>>one. The endocrinologists I saw here humiliated me, then had to admit
>>>that they had made mistake - I was hypothyroid. But they didn't look
>>>for anything else and so it has been such a slow process. i take
>>>Thyroxine now so that problem is coped with.
>>>
>>>What should I do? Please help.
>>>
>>>--
>>>Katie
>>>
>--
>Katie
>
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