this is a simple, factual to the point round up of the implications of PCOS and my experiences thus far with te condition.
ego doesnt come into this post, its here to basically describe how it is for me.i know from personal exerience in other matters how beneficial it can be for people to find someone/several people who have the same issues as themselves.
sometimes simply having someone else who you identify with can be just as important as embarking upon a treatment to tackle things.
PCOS wasnt diagnosed for years with me.i had known / or suspected i had this fr years.repeated blood tests for horonal levels etc had - so i was told- come back within the normal paramenters.
so when symptoms started manifesting themselves later down the line and others simple got progressively worse with no let up and no stabilising, i was feeling extremely anxious.
for some years i simply felt like i was a freak.in the closet so to speak.and all of these symptoms which i had, i manipulated and adjusted my life in order to hide and ensure my “secret” wasnt exposed.
during this time i made repeated trips to my doctor.when i had the courage and the nerve i suppose to face what felt like an indignity only to be patted on the head or given a shrug of the shoulders and sent packing.
eventualy after repeated ( years and years) of nagging there was a break through.one doctor decided to send me for a scan.the idea behind this was to unequivocally show to me that i was wrong and put and end to it al.
much to the suprise of the doctor, the scan highlighted accute cases of ovarian cysts on both ovaries.
i insisted on taking the results to my doctor so i could meet with him face to face and show him these results.
the sypmptoms id had prior to the diagnosis were :
unreliable menstruation.heavy/uncomfortable,unpredictable.painfull ovulation at times ( although i didnt know it was ovulation at the time),bad skin,mood swings,depression,bizarre weight fluxtuations,and the presentation of hair which started as the odd one and progressively expanded and gew into more and never actually has stopped spreading.
in some ways it was like going through puberty, again.
the only time the symptoms ( most notably the hair growth) ceased was when i was pregnant.
im told PCOS generally has an impact on your fertility.however im an exception to that rule.getting pregnant has never been a problem,and in fact i do at time ovulate in multiples.something the scanograper was suprised to find after she saw the extent of the cyst growth on both ovaries.
when i have been pregnant the frequency of removal has dropped considerably to almost nil/infrequent and new growth and expansion of the hair lines has stopped all together.
when ive been pregnant symptoms ceased.
no conincidence that being pregnant means no more ovulation,no more menstruation.
so it seems reasonable to assume that if these things were not happening in my life,and hormone levels in my body were maintained at the level they are at pregnancy- id be fine.
ive been to see an endocrinologist.wasnt impressed.got nowhere.no course of treatment suggested.the man basically saidthat until hair growth presented itself in extreme circumstances ( as in was blatantly obvious to all who saw me) then he wasnt entertaining me at all.
i got a recommendation for Vaniqa.thats all.
in other words- nothing came form it.
i said during my consuktation that for most of my life this hair growth had been progressing.my worry was that it was simply going to never stop spreading.
was told that was ridiculous.of course it would stop.
i was ignored.nobody paid attention to the facts,and brushed it all off completely.
why would nearly 30 years worth of progressive hair growth simply cease ?no sesne to that at all.since no course of treatment or action had been given or suggested to me,none of the conditions in which the hair growth was happening were being changed.so whay then- would this simply stop randomly out of the blue?
of course it has done nothing of the sort.
all symptoms have increased in severity and there is no sign of it halting in any way at all.
acne is worse and has spread from the face,to occassional bouts around the neck,down to the collar bone shoulder,back of neck and most notably the chest.
this is very much like returning to puberty but 3 times as bad as i had it originally.
basic over the counter remedies dont work.ive done all i can in terms of being clean,anti bacterial,body scrubs,facial scrubs and so on.
im not a 13 year old girl and im not a 55 year old woman going through the menopause either.
these symptoms are what would be strongly related to serious hormonal upheaval which - if it were puberty or manopause- would stop once id either gone through puberty or gone through the menopause.
and yet ive got the lot and have done for years,getting worse and im not pubescent and im not menopausal either.
in terms of weight- my motabloism has a mind of its own.at times i can eat and eat and eat with no affect on my weight,other times the same consumption results in weight gain and going up two or three dress sizes in a very short space of time.
menstruation can happen any time.its totally random.no pattern what so ever.
i can manstruate anytime from 3 weeks to 7 weeks between each time.
there have been some doctors who have tried to suggest that menstruating 21 days after the last ( and in one or two cases it has been less than this,19 days), is not possible and im mistakig this for simply random bleeding between periods.
as much as id like to accept this- its actually not true.i know better than anybody what mentruation feels like when it happens to me.
for the past 3 months - ish iev been in a perpetual state of ovulation.menstruation.
as soon as one ends,ovulation after3-4 days starts up again in earnest.
i can track its progress and i can tell which ovary or in some cases when both have been responsible for releasing eggs.
at times i do feel hostage to my biology.and that my body is wanting one thing- to be pregnant, whilst im having to tollerate the results and symptoms i get from not being perpetuall pregnant.
its infuriating at times, disheartening at others,and at best something which i try to manage daily.
simply put it dictates the life i lead.
as im classed as a young woman, and not suffering from menopause or things like puberty it is unacceptable for this to be the case.
i have been told in some ways i have symptoms of a significantly older woman, whose body has seen more life and been through a lot more than mine actually has.
there are issues surrounding thyroid for example which have come up.which,i understand can be connected to PCOS in occasional cases and lead to hyper thyroidism.
this is something i do believe now features in my case.however, the doctors are not acknowledging this,much as they didnt acknowledge the actual PCOS itself for several years.
what seems to be the attitude presented is that if a doctor themselves doesnt accept or consider the possibility of a condition featuring in their patient- then it doesnt exist.unless a doctor believes it might be possible, apparently you dont have it.you have no symtoms to speak of and its all in youre imagination.
when,and only when, a doctor acknowledges it could be possible or is indeed established fact , then the symptoms youve likely been contending with for years of youre life, are accepted as being real.
until then- apparently its all attention seeking,bothersome behaviour which takes up valueable tme and is a distraction and nuisance.
i have repeatedly suggested i have womb and ovaries removed.i dont need them,in many respects im a prisoner of their existance.
im not going to have more children.i never will have more children.and i wont change my mind about having more children in the future.
so i dont need them.and given the distructive influence they have on my body on a day to day basis- id say the end justifies the means.
once removed the issues of menstruation dont exists.neither does the ovulation aspect either.
which simply kleaves the issue of hormonal imbalance * the very same one which im told is within normal parameters*.
this may be within normal parameters,but its not in MY normal parameters.whatever is normal for the average person, affects me accutely in terms of hormones.there really is no getting out of that as being true.
how else can it be explained?i have constant hair growth,which is progressive,showing no signs of let up and has been a feature of my life especially during the onset of puberty ond from there on in.
i dont come from a family of bearded ladies as such.but i don have a family history of accute problems with menstruation and the womb.all of it solely attributable to the monthly-ish appearance of the period.
my proposal has always been that to examine anyone based on the standard- is wrong when you are dealing with issues which are out of the ordinary to begin with.
so as someone who will not have the same physiological symtoms to something which is supposed to be a natural thing for awoman ( menstruating), then you should not then have the average womans A typical levels and experiences used as a bench mark for you.
if youre out of the ordinary , using the ordinary to rate you is incorrect.
thus any woman who has any condition which results or clearly sets her apart from the norm, is not necessarily going to react/tollerate or experience anything ever, as an average Atypical woman would do.
so youre standard hormonal leverls ( as arrived at by looking at a rabge of stabdard women) mean absolutely nothing to someone who may have accute sensitivity to one or several aspects of hormones/hormonal activity.
and this is my and has been my bone of contention.
i am not a standard A typical women.in terms of menstruation- i have nothing in common with a standard A typical woman.and in many respects- i dont fit the basic profile for a PCOS woman either (fertility isnt an issue at all.in fact in spite of the degree of the cyst growth on both ovaries i can become pregnant in singles and in multiples without any difficulty at al).
i have unabbated hair growth unless i am pregnant.this is not A typical of the standard woman on the street.
in fact there isnt on aspect with regards to the hormonal issues i have and PCOS,specifically, that is average.
therefore average goes right out the window in determining how what why and how to proceed.
this is again,going to be my stance,when i once again visit the doctor and once again set all of the information out before him and once again ask for assistance in pushing for this to be tackled in a timely and thorough fashion.
have done this dozen of times.the reason i do persist and do go back again and again is that i know that it can be a case of dogged determination to be heard and taken seriously.
and with this in mind,i plan to do just that ( again) in the coming week.