Ladies...PCOS experience?

[badonkadonk]

Hi guys,

 

Those of you who read my post in reply to Sojourned earlier post will know that I'm currently seeking treatment from a gynocologist, for those who don't, here's a quick update. I've had irregular periods all my life but things are slowly getting worse. In the past two years the time between each period is increasing all the time, I'm now up to 66 days without a period. I also suffer from depression because of my AS partly and partly because of what I go through each month, the depression worsens in the week before my period. If for any reason I don't start my period when I'm supposed to then the depression gets worse and worse until I do start my period. I have terrible fatigue and bad skin even though I drink at least 1 litre of water a day, mostly 2 litres. I also have downy hair across the whole of my stomach and chest and under my chin and my hair growth is rapid to say the least. My hair length in January was just below my ears, my hair length now is just above my bust and I have 2 inches cut off a month. I want long hair though so it's ok it just grows quick! I also seem unable to loose weight and have watched my weight balloon nearly 4 stone in the last 2 years. I don't eat mega healthy admittadly, it's hard to when you suffer with depression and intense sugar cravings, but I only eat the same as the rest of my family and yet they don't put on weight.

 

Anyway I have been going to the doctor for years telling him about my depression before the periods and how my periods are irregular and how I think there is something wrong. I have been referred on the NHS a couple of times but each time they have sent me to a psychologist and told me to keep a diary. I hate psychs so I didn't go because they never help me. I only see the one I see now so I can get my sick note. My depression has also been wrongly attributed to most things all my life, firstly it was just growing up and then it was bullying and then I just needed different anti-depressants and since I was diagnosed with Aspergers in December it's been largely attributed to that even though I have protested and said it's definately linked to my periods. So after months of fighting and finally getting off my anti-depressants I demanded a referral to a private gynocologist. The appointment was intially for a few weeks time but I was becomming increasingly alarmed by the no show in my period and also had the sensation of feeling like something was falling down inside me or that there was something there that shouldn't be. All sorts of horrible things went through my head and I decided to see if I could find out and did an internal exam by myself. I found a lump. This was Tuesday. I went into panic mode and stupidly looked it up on the internet and managed to convince myself I had Vaginal Cancer or something. Anyway we phoned the emergency phone number we have as part of the private insurance we have and they got in touch with the hospital and brought my appointment forward to today.

 

I went today with my mom and told him everything. First of all the staff were brilliant in regards to my AS, I usually have to tell people what it is but they had already read the records and treated me accordingly. I know it sounds simple but when you have to remind your GP everytime you go and see him what AS is it can be disheartening. He performed an IE and said that the lump I thought I had felt was just the opening to my womb. Thank god!!! But he did say that it's a possibility that I could have Polycystic Ovaries or Polycystic Ovarion Syndrome or something to that effect. I've got to have a scan on Tuesday to see what they can find. I've also been given some tablets, half of the medicine that makes up a contraceptive pill apparently, that once I take for five days should make me have a period. I've then got to take this tablets, twice a day for five days at the same time every month, for six months, so that I have regular periods for a while. Once I'm around 3 days into my first period I have to go to the doctors and have my blood tested for hormone levels and to check that my kidneys are functioning ok. The reason for the kidney check is that I have unexplained constant itchy skin and need the toilet like 15 times a day. I've tried everything to stop my skin itching but I do have sensitive skin so it might just be something I can't control and the toilet thing might be because I drink a lot of fluids. Fingers crossed anyway. (Just to note, I can't take the whole "pill" because of my weight, the risk of blood clots is quite high).

 

So now I've got through all that I was just wondering if any of you had experience with Polycystic Ovaries? Does it sound like this is what I could have and what are your experiences, how have you coped or know someone has coped? At first I felt happy that it wasn't something more sinister, if it is in fact anything at all, and in some ways I hope it is PO because then at least I will have a reason. But the depression has hit hard tonight because I've sat and realised that yet again I might have something of which there isn't a cure for. Having Aspergers is bad enough sometimes but having this as well, it's not the worse thing in the world but I just feel like, why can't I have something curable??? It doesn't help that my dad's attitude to the whole thing isn't exactly rosy. I was musing in the garden tonight, not being bigheaded or anything, that it is a wonder I'm still sane after seemingly living all my life undiagnosed with 2 things. The depression and confusion and anxiety and general not knowing has taken its toll over the years and I was just feeling like blimey, can't believe I'm still functioning. His response was to say "oh for gods sake there are people who have had things much worse" and "you can start getting better now". I was really upset by this because firstly, I wasn't saying there aren't more people who have had it worse, of course not, but there are an awful lot of people who have had things much easier and I think I've done alright so far. Secondly, can I not just be ill for two seconds without the pressure to be ok again! He was like this with my Aspergers as well, "well, now you know you can manage it" and I'm like...IT'S NEVER GOING TO GET BETTER!!!!! Just let me accept and come to terms with the damn things before putting pressure on me again. It's unbelieveable. I'm sure if I ever get pregnant the day after the birth he'll be like, when are you going back to work!! (if I ever do work lol).

 

I dunno, I'm sorry I don't usually rant I usually just enjoy helping others on here, maybe I'm just being a bit dramatic cos I'm tired. But I just feel like I can never do enough to convince him that I'm not "healthy" and that it's not going to go away in a weeks time. The key apparently to PO is to lose weight and take these drugs to regulate your period, but part of the symptom of PO is that you gain weight and it's hard to get it off again. Hopefully my gyno will refer me to a nutrionist see what they can do and hopefully if my periods are regular the depression won't take hold for as long and I'll be able to go to the gym more each month. I just wish he could give me a break and accept that I haven't had an easy life so far and that Aspergers isn't easy to live with and that depression, chronic depression is actually quite hard to manage. I would like to see him in my shoes for a change and see if he would get out of bed in a morning and put himself in places like supermarkets.

 

Anyway, this has helped slightly and seriously if any of you do have experience of PO please if you have any advice whatsoever I'm all ears. I'm gonna go kick poop out of a pillow and find something funny to watch to take my mind off things.

 

Thanks for listening

 

Badonkadonk

xxx

[Emum]

I have PCOS. The symptoms do include weight gain, excess hair, poor skin and irregular, or in my case none at all, periods. All of these things can be dealt with however. To lose weight if this is difficult, you need to follow one of these trendy new GI diets (google if you haven't heard of these) because the reason why you are more prone to gain weight with PCOS is because your body doesn't deal with insulin very well. Excess hair on the body can be waxed or treated by electrolysis, or there are drug treatments as well for this (but I prefer to avoid these). Spots can be treated with over the counter stuff. Irregular periods can be dealt with by either the contraceptive pill if you don't want to get pregnant or by certain fertility drugs eg clomid if you do, though it has to be said that even with these drugs you may find it more difficult to conceive. It's not impossible though and I have two to my name now both post diagnosis.

 

Undiagnosed and untreated, PCOS is a pain, but my experience is that once you know what you are dealing with it is easily manageable. Hope your experience will be the same.

[minerva]

Badonkadonk <'> <'> <'>

 

Sorry you are going through this, i'm afraid I know nothing abut PCOS so cant help you but Emum's advice seems great

 

I hope you feel better soon & get to the bottom of your troubles

 

Nicke <'>

[badonkadonk]

Thanks Emum for your advice, I will look into the whole GI thing, I'm sure I have a book somewhere along with all the other diet books lol but I'll have a proper look this time :-) I think I will have to take the philosophies of the diet and adapt them to my AS ways though cos I kinda get obsessed with certain foods for a while and then move onto something else, at the minute it's mango, tropicana orange juice and pork chops. Not all at once though!

 

Thanks Nicke for the hugs, my mum is out at the minute and my boyfriend is still stuck on the M1 somewhere, who knows where, so any hugs, even virtual ones are much appreciated. In fact I prefer virtual hugs cos I don't like people touching me lol.

 

I hear what you're saying about the whole hair and skin issue Emum and like you I prefer to avoid medicine or more drugs at all costs. In fact the skin thing I don't even bother with, I've kinda just come to accept it because I've found that even if I do use products they usually make my skin worse because my skin is not only very sensitive but also has the ability to take lotions in, trap them in there and not let them back out causing the pores to block and hey presto more spots. I find that, even if my skin isn't as smooth as when I use creams and face washes, the acne is far better if I just use water.

 

Hopefully I will be able to take the pill in the future if I manage to get my weight down a bit, but like I said I can't take it at the moment because my BMI is too high. Hopefully this other medicine will help regulate my periods a little bit though so I can lose some weight. I did read also about the fertility aspect of PCOS. At 23 and recently diagnosed AS I'm still undecided about kids. I struggle at times to look after myself just now so god knows what I would do with a child lol. I don't know why though but I've always had this feeling in my heart that I would find it difficult to have children, even way before any of this information about Aspergers and PCOS came onto my radar. Who knows what the future holds, though it's nice to know you have two kiddies and that it is possible! I will remember that if I get to the point where I decide to have children!

 

Thanks again for your responses,

 

Badonkadonk

 

p.s. I'm feeling much better now, I went and had a tantrum and cried a bit and now I'm ready to take it all on again. I guess I'm just feeling a bit like I wish I could just get rid of it once and for all, even though the symptoms should become more manageable in future, because I'm a bit low at the minute. But you know, I'm a tough cookie, I've quit smoking, diet coke, chewing gum, got my diagnosis for AS, sort of got my diagnosis for PCOS, I'm still relatively sane, I've bagged a brilliant boyfriend and dealt with an awful lot of other things on top of AS and PCOS. I'm proud of myself and I'm going to big myself up, I've decided, even if my dad doesn't think I've achieved much because I have to have something to feel good about!! Knowledge is power, I shall use this information to change my life for the better :-)

[bid]

I have PCOS, too.

 

Unlike you, I had the opposite problem with periods...mine were terribly heavy and would literally last for weeks (worst case was 6 months ). The only things that really helped with that was a surgical procedure called ovarian drilling (where they sort of cauterise the cysts on the ovaries)...the benefits lasted for about 5 years, but then the horrendously heavy periods came back with a vengeance. In the end, because I had completed my family I had a non-surgical hysterectomy, where the lining of the uterus is permenently removed...I have the lightest, regular periods ever now (2 days!!) and it's brilliant, but does mean I can't have any more children.

 

Before all this I also had infertility problems because of the PCOS. I found homeopathy helped to regulate my periods, and I also given the fertility drug Clomid. After the ovarian drilling treatment I had two 'surprise' pregnancies (I lost one baby )! The gynaes always laughed because I was the most fertile 'infertile' patient they knew (I have 4!! )

 

Hair...I think I am part-Hobbit!! I have found the herbal supplement Angus Castus has really helped with this problem, and also with acne too I also take a multi-supplement for women which seems to help, and try to stick to a healthy diet. I have never had weight problems, so can't advise on that.

 

I do know how debilitating PCOS can be...most of my adult life was a misery because of it, but now things are so much better I also had endometriosis, which complicated things

 

Good luck <'> <'>

 

Bid <'>

Edited September 28, 2006 by bid

[Bagpuss]

Oh Bid, your post reminds me of my time at the fertility clinic.....I was referred whilst unknowingly pregnant .....and bizarrely it took a long while for anyone to click and do a pregnancy test

 

Badonkadonk, I've no experience of PCOS, but have always had very irregular periods..hence the referral to the fertility clinic...sometimes going up to 6 months without one. I found the Pill worked well for me for many years. You do right focusing on the many, many positives things you have achieved <'> <'>

[niki]

I sympathise with all fellow sufferers of pcos. I have a beard that at a push father christmas would br proud of! a hairy naval period probs acne and all the rest of the delights thta come with it! i havent found all the things that work for me yet, so if anyone has any tips on how to deal with the facial hair that inexpensive and other than waxing (i suffer from psoriasis) i would be only to glad to try it.

[badonkadonk]

Hey everyone,

 

I just realised that I updated my blog about the scan I had on Tuesday and forgot to update this post. In fact, I didn't know anyone had replied to it after my 2nd post because I didn't get an email telling me so, so sorry about that because I really do value the advice and I will most definately look into Angus Castus!

 

Anyway, here's the part of my blog update that deals with the scan, sorry if it doesn't make total sense but I kinda got it all out my system once this week and I can't face drudging up the anger I felt about it again. It's late on a Friday night and I've just gotten back from seeing McFly so I don't wanna ruin my happy mood. (For anyone interested, McFly went ok, the screams were really hard to deal with and at first, sat in the normal seating, I couldn't cope because some woman was screaming down my ear. We went and asked if there were any disabled seats left and they were aces with us so that was better because no one was sat behind me screaming, but it was still really, really loud. The band were good though and I'm glad I made the effort to go!)

 

 

"So yesterday I went for the scan. They had already told me about the scans and the fact that there are actually 2 types of scans. A normal ultrasound like the one they do when you're pregnant and an internal scan which involves a probe and your private parts and a whole load of not niceness. Anyway I accepted this and was like, ok, if it will help the diagnosis it has to be done. Plus they said it was likely because of my weight that they might not be able to get a clear picture with the first scan. Fine, I got over that as well and prepared myself for the appointment. So this dithering woman comes to collect me from the waiting area and tells me what robes to put on and what not. I got on the bed and she started the normal ultrasound and said I would have to wait for the next appointment with the consultant to find out the results because that's the way things are done (WHY WHY WHY! The appointment isn't until November 9th, I will be on tenterhooks until then). Then she started going on about the internal exam saying things like "how do you feel about it?" "the scan is't for everyone and maybe it isn't for you if you are uncomfortable" "you don't have to have the scan but it might give a clearer image" and all these contradicting things. I asked if I needed to have the scan, if she couldn't see what she needed to on the normal scan, but she wouldn't give a straight answer and just kept saying "it's up to you, you don't have to have the scan but it could be beneficial it might not be". I got so frustrated and upset with the stupid woman that I shut down and that was the end of it, I was out of there, I just wanted to get away from her questioning ###### and wanted silence.

 

I'm still angry about this today and if the consultant even suggests that I still need the internal exam I'm going to go mental. I was full prepared to have the exam but I just wanted a straight answer whether I needed it or not. It is an invasive procedure and quite personal and not something anyone would choose to have done. But at the same time if it needed to be done I would have shut up and put up. However, like I said, I wasn't going to put myself through having it done if I didn't really need to have it done. I wish she would have just said "we can't get a clear picture, we need to do the 2nd scan" or "we got a good enough picture, there is no need". I can't believe that she thought it was ok for me to choose whether or not I had the procedure when she wouldn't explain either way if I needed it. A patient with a heart condition doesn't get asked if he would rather not have the operation if it would inconvinience him! At the end of the day if I needed to have the scan she should have said so, if I didn't she should have said so. Now I am left in limbo not knowing if I needed the scan or not and thoroughly frustrated about the whole thing! Roll on 6 weeks I say. "

 

Anyway, that's the story up to date. I shall keep you informed as to what's going on though I don't think I'll find anything out now about the scan or my blood tests until November 9th.

 

Badonkadonk

xxx

[bramblebrae]

Dear Badonkadonk

I had the internal scan - it really wasn't pleasant - I was pretty shakey afterwards -not because it hurt or anything just was kinda emotional about it somehow? it was weird anyway adn I wished I'd had someone with me. I would suggest if you do need to have one you take someone with you. I didn't have PCOS so it was waste of time I still have only yearly period but each year it gets heavier. I think stress and being totally unfit stops my periods but then again they have always been intermmitent except when on the pill and this includes a time in my life where I was relatively stress free I thought at least. No doctor has ever been able to give me a straight answer so i just stopped asking basically. I suppose i relaxed much more once i had my son and I don't want more children I only ever wanted one for personal reasons that few people know and each of them seemed to think it was strange so I'll forget that lol! Anyway I really don't care now I like not having a period as never ever got comfortable with any of that palavah.

Apart from wanting to be fitter as though I've been overweight for a long time since early 20's probably I've never felt so unfit and old and knackered as I do now - prolly cause I am getting older just not sliding into it gracefully

As for fathers mine has always been on my case about wieght etc but now he's nearly an OAP he's not so fit himself it's payback time.

I think what he(your dad) said sounded a bit like he maybe feels guilty perhaps or that when you talk about not being diagnosed sooner he feels you blame them. I know I got a rather strange reaction from my folks when I discussed all my aspie traits after my son was put forward by nursery for assessment and I had learnt more about it, I asked about when I was a child though I'm not going for a diagnosis casue I think they are traits and don't fully account for things that have happened in my life - I think they felt they had perhaps let me down which I didn't mean to happen but at least it did help me not feel so bad about this kind of failed person I am given the intelligence I was born with(sorry that sounds bigheaded - but according to mensa IQ152 I'm clever - lol bet that came as a shock to anyone who has ever read one of my ramling mispelt posts), education and opportunities I have not made the best of - or at least I can console myself that it may have been that as long as I ackowledge i did make some right good mistakes myself along the way but then we are all human who the heck hasn't.

 

good luck with the test result

Lorraine

[Emum]

I'm sorry you had such a frustrating time Badonkadonk.

 

I suspect that the sonographer was nervous about the Aspergers, and worried that you might get very upset by an internal scan, so didn't want to say anything which might later be construed as pressurising you into having it. That wasn't however very helpful to you at the time!

 

My understanding is that an ultrasound scan in and of itself cannot diagnose PCOS, but it can be used to confirm the diagnosis if the blood test suggest that this might be the problem. That is certainly what I was told when I went for a scan for another gynaelogical problem last week, and asked while they were doing it whether there were still signs that the PCOS was active. It may be therefore that your consultant will not need to order another scan because the blood tests, combined with the symptoms you have are enough, or that the less good scan will still give him enough information to make a diagnosis. I would hope that if the first scan was totally useless that the sonographer would have said this much at least.

 

If he does send you back for the internal scan, you are right it is more intrusive and potentially more embarrassing, but it should not be painful and will be over quickly. You could think of what would make you feel more comfortable about the whole procedure and write this down in advance and give them to the sonographer. Things to think about might be:

 

- do you want her to explain what she is doing step by step, or stay silent while she is doing it

 

- do you want to be able to see the screen

 

- do you want to be able to keep some clothes on down below (they should still be able to do the procedure if you are wearing a long loose skirt, provided you can move your legs easily

 

- if eye contact would trouble you in this situation you could consider wearing dark glasses

 

- do you want a companion in the room with you? Do you want to bring your own, or for them to provide an extra chaperone?

 

Try and have something nice lined up for immediately after the procedure so that you have something pleasant and relaxing to take your mind off things, even if it is just a cup of coffee and a bun in a nice coffee shop. Hope it goes OK.

[westie]

Sorry do not have experience of PCOS so no info to offer there, although I hope you find some answers soon.

 

Just wanted to say that one of my relations was having irregular/ no periods and she was refered for a scan/ blood tests. Scan was fine but she did find out that she has coeliac disease (gluten intolerance) apparantly if left untreated it can cause infertility. Although I think if you follow a gluten free diet it corrects itself. She only had one other "symptom" which she did not consider a real problem worth consulting doctors about, so it was a complete shock to her. Nearly every time I looked for info. on internet it mentioned that you lose lots of weight which was not the case for my relative, so I think that she would never have attributed her lack of periods to this condition. I think it is diagnosed via a special kind of blood test, although for my relative it was initially picked up by an abnormal result for a liver function blood test which led to further test including the coeliac disease blood test....

Edited October 8, 2006 by westie

[yoyo]

I had flooding periods from day one at the age of ten - not PCOS however. I have often wondered if AS messes up hormones as no cause has been sought or found for me. I realise that you are young and a non surgical hysterectomy would not be appropriate but it has worked wonders for me. I so sympathise with you regarding your scan experience; I do hope you get more satisfaction on 9th November. When I was your age I had my first child - an absolutely horrific experience that taught me to aggressively seek mega clear explanations as no one will look after you except yourself. I do hope you get your problem sorted successfully.

 

Yoyo

[DaisyProudfoot]

My sister has PCOS - she has very irregular periods, needed fertility treatment to help her have children, is very overweight which she finds hard to control and has severe excema too.

 

However, she does have four children (the last one conceived naturally).

 

It may be best to have the internal scan (unless the consultant says otherwise) if for no other reason than to put your mind at rest and help you conceive children in the future.

 

<'> <'> <'>

[kirstie]

I have PCOS. I was diagnosed after trying for a baby for well over a year. I had pains and always flooding periods although very regular. I was however extremely underweight at 7.5 stone. I am quite a hairy person though. I was going to be prescribed clomid after a scan showed i had pcos but we bought a puppy and the maternal instincts mustv done something because the next think i knew i was pregnant with Lewis! I haven't had any trouble concieving since so i'm not sure if my troubles are behind me with the pcos.

I just wanted to say the whole process is very worrying and stressful so you aren't alone! <'>

[badonkadonk]

Hi

 

Thanks again for all your replies, it's always helpful to know that there are others out there in similar situations!

 

Emum thanks for the advice RE diagnosis of PCOS. I discussed this with my mum just after the scan (she was in the room with me and was also thoroughly confused by the sonographer) and mum also said that the blood tests would probably prove the most instrumentive in getting a diagnosis, so fingers crossed.

 

I don't actually have a problem with the 2nd scan, I didn't when I went the first time. I had fully prepared myself in advance for it and read the booklet the helpful nurse gave me the first time I went. It's just that no one (or certainly not anyone I know) would actively choose to have the 2nd scan if it wasn't required and it was the lack of clarity on this subject that was the most frustrating thing. Aspergers or not, as a medical professional she should have said whether I needed the 2nd scan or not, or whether it was advisable to have the scan or not. She did neither, instead she dithered about going on about it being not for everyone and the fact that it might/might not give a clearer picture. If this "dithering" was as a result of her not wanting to upset me because of my AS, and I honestly hadn't considered this before, then this makes things even worse really. How can someone jeopordise getting to the bottom of my diagnosis just because she's worried about upsetting me because I have AS! So what I have AS, that doesn't make me an emotional wreck, nor does it make me any more or less entitled to treatment than anyone else.

 

I sometimes just wish that I could go around schools and hospitals and workplaces etc and educate people on AS for a living!!

 

I don't mean to be angsty, honestly, I'm just having a nail/hammer/head day today. What good would I be as an educator of AS to lots of people when I, seemingly, can't get it into the thickheads of my own family. My sister sold her car on Wednesday so being the kind person I am I put her on my insurance for a month so she could take my car to work unless I needed it. Usually this wouldn't create a problem for most people but it's me so go figure. I have repeatedly asked my family that in a morning when they go to work they make sure all the doors are locked, including locking the front door after them, and put the alarm on part so that downstairs is alarmed. The depression I described, the one that gets worse and worse the longer I don't have a period, also comes with a rather hefty dose of insomnia. Hence for the last 3 months I haven't really been sleeping properly at all despite my efforts to rectify this. I have suffered with the depression/insomnia for almost as long as i've had periods so I'm pretty much maxed out now in my knowledge of dealing with insomnia and somtimes things work, not this time. So because of the insomnia I usually fall asleep sometime after 4am meaning that I'm not up when they go to work. So this morning my sister takes my car to work, fine. But my idiot dad decides that not only will he not lock the front door he will also leave the back conservatory door literally wide open after his morning fag. Because my sister took my car she took my car keys which also have my house keys on them so now I can't lock the front door. So I'm sitting here scared half to death that someone will come in the house. It's an irrational fear I know but I've had it also for as long as I remember. I am trying desperately hard not to go and sit on the stairs and watch the front door so I know no-one is coming inside. I know it sounds trivial and not a big deal but it's one day of my life wasted on fear just because my dad can't think about anyone but himself.

 

Soz for the rant, I do appreciate the advice and kinds words, honestly! That lot just needed to come out so, so be it lol.

 

Badonkadonk

xxx

[DaisyProudfoot]

Does any of your family work close enough to pop back home and give you their keys?

 

Does a neighbour have a set you could borrow?

 

We have a permanent set of house keys which is kept in the house for this very eventuality. Perhaps it may be worth doing it for you too.