PCOS and what its meant for me

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.

Hi Seren,

I am also an undiagnosed PCOS sufferer. My symptoms are as follows
-facial hair
-excessive body hair
-unable to menstrate
-unexplained weight gain at a rapid rate despite exercising as i always have
-thinning head hair

Yet, nothing is wrong with me. I am completly “normal”. Funny, I don’t feel normal. I feel like an ugly freak. How many brides have to shave their face before the wedding…apparantly it is “normal”.

I agree with you and applaud your take-charge attitude. It is great to hear from a fellow PCOS woman on this board.

HI <img src="/ubbthreads/images/graemlins/smile.gif" alt="" />
thats the one.

im currently trying to contend with gaining 2 dress sizes in 6 weeks with no reasoning behind it at all.

no food intae changes, no excercise changes etc.

i had the appointment with the doctor again today.

wemnt through it again.put across the indication that its hormonal pure and simple.stressed when i have been pregnant things have stopped almost.

these things are really noticeable when youre plucking or shaving etc and used to doing so on a daily basis.

and when it stops and all of a sudden its a fortnightly or monthly thing instead and nowhere near as much growth then to me that shows where the treatment should be.

when i began approaching doctors over this some years back i was mortified at what i found happening to myself.

it was primarily the hirsuitism issue which caused the most stress and axiety.

the feeling was very much like Jekyl and Hyde.where i would masqurade as one person ( someone normal ) during the time i was in public, but out of sight or up close the disguise fell apart.

i used to have 3 complete wardobes of clothing.3 sizes basically to accomodate weight gain and the loss again.

it wasnt until i had access to the internet i was able to discover i was not on my own and the information i found reassured me that i was right in my own conclusion that somethign was not right, needed investigating and also that i was far from on my own in the experience too.

the doctor requested the same old same old battery of tests again ( testosterone,thyroid ,oestrogen etc) with a few others thrown in extra.something related to pre diabetic metabolic conditions.

ive done most of these before.half a dozen times or more now.

had the scrutiny when i mentioned hirsuitism.im sure everyone gets that.the moment you mention it whoever you are talking too intently begins to examine your face for trace of 5 o’clock shadown or some other give away sign of beard growth or similar.

so i do more tests.maybe this pre diabetic thing will highlight something but i stressed 3 times that symptoms were dramatically reduced when i was pregnant and that would suggest that if my own hormonal levels can be maintained and mimik the levels they would reach at pregnancy- thats to way to go.

i got the impression it went right over his head.

but who knows.

in the mean time ive pretty much withdrawn from life.
this is something i understand from reading in the forum here, that lots of other people do too.

try to make an effort and push myself to get out and about, but its not a common thing for me.its more a conscious effort to try to be in public spaces rather than avpid people at al costs completely.

its frustrating to find the condition of PCOS or the sypmtoms which can come along as a part of it nt taken seriously in the main.

if any kind of medical condition impacts on you basic quality of life to a significant degree it should be taken very seriously,whether its visible/immediately obvious or well disguised.

did find out the original endocrinologist id seen has now retired so maybe it would be worth pushing for another consultation with one of the current endocrinologists.

but i do find it all an indignity.

im not a pubescent girl and im not in menopause when hormonal issues are very common and so the symptoms are more accepted.

facing one or several complete strangers, primarily men,who wouldnt have the first clue of what a bad period feels like , then having to discuss the subject of my body,what its doing where and in indepth detail ( and possibly they may want to see this exposed for them to look at and examine ).

its not ideal.

2 weeks ago my skin went haywire too.

for some unknown reason i dont now just have poor skin on my face, its spreading down the neck and chest,upper back.

lots and lots of lumps under the skin.nothing to do with razor bumps because i dont use razors on my face or neck and have never touched my chest or neck or back ever in my life with a razor.

cant explain that either.nothing has changed ,no food,no cosmetics,no bathing products.nothing at all.

just things progressing and getting worse.

cant comfortably wear cami tops.unless its reasonbly high and close to the collar bone im not comfortable and the lumps and bumps are exposed.

can feel claustrophobic at times.id always believed and been told things would settle down.was just stress,a phaze,try different over the counter this that and the other for sorting out skin issues.

then graduated on to medicated gunk which is so harsh it bleaches the colour out of fabrics and clothing.

it never has settled down and 10 years and more down the line i do to a small degree feel like ive been cheated and mislead.

cheated out of having a reasonable quality of life because of hormones which b y rights id say could ,would and should be treated with relative ease and sort a lot of it out quickly.

mislead because i was never given the benefit of the doubt when i raised the possibilities of actual medical conditions being responsible rather than stress,wrong cleaners,etc.

any excuse from the bizarre to the ridiculous seems to have been suggested to explain symtoms etc.anything but the actual one id put forward to begin with and despite feeling inside i was correct in my own findings, there was always the doubt because i wasnt a qualified doctor,surely if someone whose got medical training behind them will be someone worth taking seriously enough to look at what theyve put forward and try out their theories.

which i did and discounted them all.but it wasted so much time.and this is time in my life.not something to be taken lightly.

yo only get one life.and by rights you should have the option to live it to the best and fulest you want to.and i cant help but look back on the years past and feel a little annoyed at a decade of wasted messing about.

i sometimes do get the hair loss too.only rarely.but had one accute incident which was scarey.

people say you cant love anyone or be loved by anyone until you love yourself first.

well- how can you love yourself when yourself seems to do things out of the ordinary,at radom and without you being responsible for it?

is like 2 actual people not 1. the body- and the person who is stuck in it trying to manage with the way that body is screwing up at any given time.

I totally understand what you’re going through. I really do feel like two different people. I try to act like everything is wonderful, but deep down I am really sad and depressed and feel like I just can’t take it anymore.

I am a young 23 year old woman and feel like i should be in the prime of my life. Instead it takes me an hour to get ready to even go out of the house. Try to make sure every hair is shaved, plucked or bleached. Try to dress cute, but it is hard when you look and the mirror and see a bigger than average woman staring back at you. When just 2 years ago you were half the size.

I also find myself looking at the ground most of the time; afraid to look at someone right in the eye for fear that they will see what a freak I am.

I see no end in sight and it is getting progressivly worse everyday. I am so jealous of those woman who can just jump out of bed and throw there hair in a pony tail and go. Can you imagine how great that would be!!!

If you need anyone to talk to; please feel free to private message me. Keep us posted on how your visits and tests go with the doctor. Good Luck.

Do any of you know about PCOSA? This organization provides lots of information and has a strong affiliation with
professionals who are very focused on our PCOS problems.
They are holding their next conference in Sept. in Colorado.

navigate their website.


Thank you for giving us that info. Anything we can learn about it is great. I just wish that more people were aware of PCOS.

hi nope not heard of them before.

will look that up though.

still waiting for my new blood tests to happen.

apparently with these , this time im supposed to starve myself.nothing but water after 12 midnight until after tests.

no idea why.wast explained or i wasnt let in on what that was all about.

might try again with waxing.maybe paying someone might bring better results.but then again, re growth in what 4 days i read elsewhere in the forum seems its not worth the effort.

2 weeks free of it and id be inclined to think the pain and cost would be worth it.4 days not good enough for me.

did wonder about DIY electrolysis though.

i did pick up a one touch a long time ago but never used it.

my initial consult for the electrolysis didnt impress me and i did not go back for an actual appointment.

they hadnt heard of vanique, didnt know anything at all about conditions,side effects,medical issues etc.

if id felt i was paying a professional , i would have invested and given them a chance. what i came across was more superficial and out of date/not informed employee.

but i did have a test run of sorts.she zapped two hairs on my arm so i knew what it felt like.

was the most usefull part of the consult.i do understand about what people mean when they say they experience different sensations.one definate one for when the needle is correctly inserted and another one different for when/if the needle is inserted at the wrong angle etc.

because im certain i got one of each.

one felt fine, the other felt more like my skin was being pierced like you would feel if someone stabbed you at random with a sewing needle.

other than that,no red rashes or burning sensation afterwards.

having said that they were both taken from the forearm which isnt half as sensitive than other areas of the skin.

encouraging nonetheless.

since home waxing has been a disaster im still trying to rectify with ingrowns and the like, perhaps teaching myself electrolysis using myself as guinnea pig is the next thing to try.

at the moment i suppose it seems to have benefits in comparrison to other tried and unsuccessfull methods.

9- 18 months of accurate repeated treatment for successfull removal permanently seems well worth considering, especially if it can be done in your home, at your conveniance and ultimately where you will feel the most relaxed and comfortable.

yes the more i think about it, the more i warm to the idea of home electrolysis.

the idea that this time next year i might be in a position to actually wear a bikini is motivating.

whats the worst that could hapen?at present a bikini is utterly out of the question anyway.

trying seems more acceptable than sitting about and not trying.

Well, I have been officialy diagnosed with PCOS. Even though I knew that i had it, it still broke my heart to hear the official news. DR. has me starting out on Metformin next week. Hopefull this will help regulate things. I’m still experiencing severe effects from the PCOS. My DR. hasn’t given me a whole lot of hope on this, but at least i found a DR. that diagnosed me and is going to have me start a treatment.
I don’t know if anyone ever reads this thread, but i just thought that i would give an update.

Of course people read your thread.

Most just don’t speak up and say anything unless they think they have something to offer. <img src="/ubbthreads/images/graemlins/cool.gif" alt="" />

James, i just want to thank you for all the help that you have personally given me. I hope you had a wonderful holiday and have a great New Year!!
Andrea, if it wasn’t for this site, i wouldn’t have known about PCOS. Thank you.

Awww, shucks, now you are making us blush. <img src="/ubbthreads/images/graemlins/blush.gif" alt="" />

You are welcome.

Okay girls I have a success story for you for a change.
I got into the field of electrolysis ultimately because I have PCOS…that’s the short story now here’s the long story:

Way back in 1999 I had an ultrasound for pain in my abdomen and my family doctor just sort of casually said I had multiple cysts on my ovaries, but never mentioned pcos or told me anything to do or what it meant. I pushed him for info and he finally sent me to a OBGYN who explained to me that the only way for my cysts to go away was to lose weight and that it was impossible to lose weight because of the cysts…she then handed me some brochure about losing weight and sent me on my way.

Needless to say I was pissed right off because she had nothing to contribute. So I went back to the family doctor and insisted he send me somewhere else so he sent me to a doctor of Internal Medicine, which I’m still not sure I understand.

This guy was equally as annoying as the previous one and told me I didn’t have enough facial hair to warrant anything to be done about it in spite of the fact that I had a man beard.
He did do tons of tests after which he told me to pack my bags and get out, he had nothing for me.

Again I was pissed and decided to take care of my own facial hair by buying a professional electrolysis machine from ebay and starting my own treatment. By the way I don’t really recommend this because as your treatment goes on and the hairs get thinner you can no longer see them properly and still end up needing professional help.

Meanwhile the periods and ovulation times were so bad that I wanted to just kill myself or my family, not sure which would have happened had I not gotten some help.
I went back to the Obgyn with a letter that basically told her that if she didn’t do a hysterectomy I would do it myself and that my death would be on her hands and she agreed to do it for me. I specifically asked that she take the ovaries and she didn’t…I was not happy about that at the time but now I am…will be explained soon.

The hysterectomy (uterus and cervix only) was the first best thing I ever did…no longer did I have those painful periods and heck it’s great not having to wonder when you’re going to start bleeding when you least expect it.
Shortly after that I was talking to a client about what had gone on and she told me she had gone to see this holistic type GYN doctor in Toronto and he had put her on natural progesterone cream and she had immediately lost some weight and felt great. I thought there is no way that it could make such a difference but she offered to give up her next appointment so that I could go see him because he wasn’t taking new patients. So I called him up and managed to get in to see him the next month.

Oh my god…this man is amazing, I didn’t have to say a word, he just knew what I had been going through, almost like he could see it in me. He sent me for a blood test and an ultrasound and immediately prescribed the natural progesterone cream for me. You just rub this cream (1/4 teaspoon twice a day) into your soft skin (belly, inside arms, hips etc.) and that’s it. Within two months I had lost 15 lbs. and felt like a new person…I couldn’t believe it.
This was the second best thing I ever did…the cream.

The hysterectomy took away the period pain but not the ovary pain and the cream took away the ovary pain and the general feeling of wanting to kill everyone that I had three out of four weeks per month.

Now somewhere in there after working on my own facial hair, underarms and bikini area I decided to take the course and become certified for electrolysis…which I did and have been for over two years now.
After working on myself for a year and I finally got fed up and sought professional help and can say that my face is clear.

I attribute the clear face to the electrolysis of course and most the progesterone cream. I stopped the excessive hair growth and allowed the electrolysis to work.
I still go for electrolysis because I’m having the bikini area cleared but about once every two months she removes about 5 very fine hairs from my chin that I didn’t even know were there…sounds like success to me.

So just know there is help out there for you.
Specifically, this doctor I found uses the techniques that an American doctor (I’m in Canada) discovered and he has a website that I believe has referrals to doctors in other areas so you might be able to find someone in your area.

Go check out his sight and you may get the help you need.

I have to end with this…I feel human again, and I know that both you ladies know what I mean when I say that.

indygirl, how is it working for you??? i suppose my dr. will put me on it also, so i would like to know if there is any chance of controlling those hormones.

spiro is also a common drug for PCOS. i would suggest for all of you to check out specific forums for PCOS women. there are several that exist, you can google for them. you can get a lot more help on this specific issue there.

then, after you have your hormones under control, do come back here and check out the laser and electrolysis sessions to figure out the best way to kill the present hair.

Progesterone cream helps for facial hair? I was reading on another forum for women that it is the progesterone that increases androgen activity (so a bcp is wanted with lower progestin and higher estrogen for hirsutism) and the estrogen that helps combat hair. I’m confused!! Does anyone else use progesterone cream for facial hair? (I assume you don’t actually put it on your face, tho, since it was mentioned above that it goes in fatty areas, right?)

Not sure if anyone is still reading this thread but I will answer anyways.
Progesterone is the precursor hormone that regulates the others. PCOS is caused by estrogen dominance and the progesterone helps to regulate that.
I didn’t start using it for my beard, but it was a happy side effect that I stopped producing them and was able to finish treatment. Now I’m approaching menopause and some hairs are coming back, but nothing like I had before.
I still use the progesterone cream and after all those years I never got another cyst until now. I have one on my left ovary that they are watching, but don’t think it’s going to need removing. They think it will just go away eventually. I kind of slacked off on the cream the past few years. I’m supposed to be using it twice a day and have only used it in the mornings, so it may be my own fault for getting this cyst. I’m not having any pain with it and was surprised to hear it was there because I was having an ultrasound for something else and they found it as an incidental thing.
So that’s my story…and no I don’t put it on my face, usually my tummy or hips.

Additionally, anyone with PCOS should avoid Monosodium Glutimate and all artificial sweeteners like the plague. Most people who eliminate these find as a side effect the loss of about 20 pounds and reduced bloating.

Below is a link for a clinic that has helped many of my PCOS clients. It has helped them rid their symptoms of their PCOS. Why? Because the people at the clinic test first to find the cause and type of PCOS which will help them treat it. Unlike Drs who diagnose and then "bandaid " the problem.I know this clinic is in Australia, but their website has valuable information that you may help you.

www.sensitive-alternative.com.au Click on the link PCOS