Confused and upset at multiple negative results

[Snowdrop]

Hi all, I'm new here, though have been reading posts on and off for a few years but this is my first post as I'd put off actually joining until I'd hit all the brick walls...

I'm 26, a healthy weight and BMI but have been suffering with irregular periods, heavy periods when I get them, excess hair, thinning hair on scalp, oily skin and acne since about 18 (all was perfectly normal prior to then).

I saw two GPs about this (a couple of years apart, in my late teens/early twenties) which is when PCOS was first mentioned and I of course read up on it and it made perfect sense to me (I read the connection to insulin - my Mum, Grandmother and Great Aunt are diabetic).

The first GP ran bloods which came back normal, the second GP ran bloods and an ultrasound, again all normal. One GP basically told me I was being oversensitive about my image and I couldn't have PCOS after all because I'm not overweight. She was actually very patronising suggesting I should try shaving or bleaching as if I was talking about peach fuzz, (like I hadn't already tried that!). I was prescribed antibiotics for the acne which did help but thick dark male-like hair continued to spread over my breasts, face and abdomen and my periods never returned regularly.

Then last year I changed GP surgery and brought this up again with my new GP who was extremely helpful and willing to investigate further (a little embarrassing but she was the first to actually ask to see the hair problem, she compared it with my arms which are fine and light, and agreed there was definitely an issue to be investigated - thank goodness). She ran more detailed bloods and an ultrasound. But again every result came back 'perfect' including the scan. She said she was puzzled but was sure there must be a hormone issue somewhere so referred me to an endocrinologist (at last!) who I saw in April this year. They took my history and ran even more detailed bloods (I don't fully understand them but included prolactin, TSH, SHBG, haemoglobin, kidney and liver function, corrected calcium, glucose, FSH, LH, testosterone, adrenal androgens, 17 OHP). I got the results recently and the letter says yet again levels are in normal range and I'm discharged back to my GP. They said if the results were normal, the only other explanation could be mediterranean heritage (but how does that explain irregular periods and thinning hair, not to mention I'm extremely pale and burn easily?!). Besides I know I have no mediterranean or asian heritage.

Now I'm just left feeling like a freak, confused and distressed all over again! I was so sure it was PCOS. Am I wrong to feel they're missing something? Surely all these physical symptoms are enough to warrant a diagnosis? Prior to the referral my new GP did discuss hair removal with me and I understand my best options are laser or electrolysis which is something I ultimately want to pursue but will have to save up for (I think I'm lucky in that I have hair only on the chin area of my face which I have to pluck twice a day and cover with concealer so at least I hope no one can see it but the most distressing for me is the chest hair which I now leave as plucking and shaving just makes my skin sore and spotty).

I've never been on contraceptives, the endocrinologist said they could cause more problems than they're worth and to be honest it's not something I'm comfortable with either. As for fertility (which is something that's crossed my mind in all this) I've never been in a relationship so have no idea if that will be a problem for me as well. I've read the helpful books by Colette Harris and Marilyn Glenville and I'm gradually switching to low sugar/low carb and higher protein/fibre, etc and noticed a particular difference in my skin when I decreased my dairy intake.

I'm not sure what other advice I'm asking for really, but is there any reason to go back to my GP about this, now I've had these final results? Is there anything else I should do after all this? Would I be wrong to go on self-treating this as if it is PCOS anyway? And how do you cope with stripping off for a laser/electrolysis therapist with such a humiliating problem (no one has seen me without clothes since I was about 11, so this in particular feels like an enormous leap of courage/confidence for a very shy person like me).

Thank you for reading! (Sorry it's quite long)

[Hols969]

Wow that's the first endo that has suggested the contraceptive would make it worse. I personally would try a combined pill (I like Yasmin) for a year and see if any of your symptoms reduce. Ive been on and off it for 30 years and it keeps my pcos symptoms at bay. Cysts on the ovaries are only a symptom so frequently not there and blood tests can come back normal so they should take your symptoms into consideration too. Did the do a fasting blood test (test then sugary drink then 2nd blood test, especially as you have a family history. Where are you based ?

[Snowdrop]

Thanks for your reply and advice! It's not something I know much about really but I'll look into the pill again.
And no, no one's done a fasting test. (And I'm in the Nottingham area).

[Hols969]

Insulin resistance is a symptom of pcos and if you have a history of diabetes I am surprised they havent checked to be honest. If it is PCOS then a combined pill should help (look in the medication forum for suggests of pills for which symptom as that may help you narrow down the one that would suit you best), if it does make a difference then it does suggest it is hormonal (pcos is a hormone imbalance really and not ovary related so it is a very misleading name and their is consideration going on regarding changing the name as not really accurate any more as they thought the cysts caused it but further research shows they are just a symptom and not all ladies have it)

[Snowdrop]

The pill is something I will have to look into a lot more, I'm a little reluctant only because I'm long-term disabled and my illness tends to respond negatively to medication but the anti-androgen effects of Yasmin are very tempting. So I should definitely go back to my GP… Any advice for how to approach her about the fasting test without sounding like I'm telling her how to do her job? I read the NICE diagnostic criteria a while ago and thought about mentioning it to her (about how I meet two out of the three criteria) and how I didn't understand why I'm not getting a diagnosis. Can I ask are there actually any benefits to getting a diagnosis? Thank you again.

[Hols969]

LOL sometimes you do have to tell them !! mmm benefits of being diagnosed - the main benefit really is from a fertility point of view as often this can help when TTC - the rest of the symptoms you are sort of left on your own to manage. I was diagnosed about 25 years ago (privately) and have never seen anyone about it and have really managed it myself through diet and being on the combined contraceptive (which is why I joined Verity as they knew about PCOS when no-one else seemed that aware and the internet wasn't really around like it is today where you can google anything).

Sadly I think pcos is thought of as a fertility issue only but there are long term consequences that should be addressed really by your GP but frequently are not. The main think is keep out as much sugar as poss from your diet including white carbs as they play havoc with pcos symptoms. I would think of yourself as having pcos whether you are diagnosed or not!

[Snowdrop]

Thank you again for your help, you've been great! That's kind of what of thought it would be about fertility. The first unhelpful GP just told me to go back and see her when I have trouble having kids actually, which I've read a lot of on here too.
LOL, yes I'm familiar with 'having to tell them' re my other condition actually, though at least my new GP admits it, the one's that still think they know better based on long out of date information are the real pains. I had a good cry about all of this yesterday and concluded the same thing about self-managing, to me it's obviously PCOS even if they won't diagnose it so that's how I'm going to approach it. I had a similar conclusion last year as well but a new GP and an endo referral got my hopes up of some official recognition. I shall dig out Colette Harris's book again and the low GL book I had, at least being pro-active helps me feel more in control of it. Which leaves me with my family to contend with. LOL. When I started adapting what I ate before, they thought I was developing some kind of eating disorder, telling me to stop reading quack books as doctors know best and kept shoving cake at me(!)

[phoenix15]

Hi snowdrop,

I have been diagnosed with pcos for 30 yes now and every time I had my blood tests done my hormone levels were always normal. I've never really been overweight, but have suffered from terribly painful, heavy and frequent periods all my life, along with severe pmt and PMS and bloody non stop hot sweats ( does anyone else get those?), but all doctors would say is my hormones are normal. I even thought i was going through an early menopause and tried hrt at one point, my endocrinolgist was shocked my gp would do this, I suffer severe hirsutism but normal testosterone so now drs just look at me with a shrug of their shoulders and say I don't know why your like this. Great huh. Unfortunately I too am massively intolerant to drugs due to other health conditions so that didn't help either. Like others have said Colette Harris is a good book to read, and its mostly trial and error with other things you could try.

I struggle massively with cravings for carbs and sugar so its a damn shame that those are the things that make it worse. Why are the nicest things always bad for you lol.

Anyway I hope you manage to find some relief from it all.

[Snowdrop]

Thank you for your reply phoenix! I'm sorry you've had such a hard time with pcos and getting test results as well! I get hot sweats too occasionally, normally in the week or two before I get a period. Though sometimes I've found I get all the signs of a period including actual period pain but then don't bleed. Does that happen for anyone else?

I'm going to trial a low GI/GL diet and see what happens, I'm not expecting miracles but I hope I could maybe make a dent in it or lessen my chances of getting diabetes anyway. Though of course I don't imagine the hair will ever magically fall out but I've now put aside a piggy bank to save for electrolysis, so it at least gives me that to aim for.

Haha, yes it does always seem to be nice things that are bad for us, I do have a weakness for baking cake and cookies.

I hope you (and all ladies with pcos) can manage to find some relief from this rotten condition too! (And that the med profession will take more notice).

[phoenix15]

Hi snowdrop

Yes, I get lots of period like stomache several wks of the month and feel like I am coming on but then nothing happens. Good luck with the gl diet though as its worth a try. Unfortunately I'm a bit stuck in that area cos of crohns colitis and IBS and multiple allergies so a lot of food makes me I'll.

Have you tried the herbal route as well, things like agnus castus, and spearmint for the hirsutism, as many have given them a go. I'm stuck with the hair growth as well and currently trying laser again and will have to have electrolysis as well (woohoo, not). I'm basically falling apart lol.

Let us know you get on.

[Snowdrop]

Oh gosh I'm sorry diet is so difficult for you, I have a friend with severe crohns and my mum with ibs so I understand how much harder that must makes things for you!
I read about supplements etc in Marilyn Glenville's book (which I'm currently reading again), when I read it the first time I started taking a multivitamin and Omega 3, and drink spearmint tea everyday now (I've never drunk tea/coffee anyway). I'm not sure if they're helping but I'm going to look again at the levels and what else I could take, and at a spearmint supplement, my only problem is cost because I'm not in a position to spend very much. One GP did discover I was severely anaemic and I now take iron tablets too. In fact when I first started taking the iron I hadn't had a period for months but a week after starting the tablets I had a period which lasted 3 weeks which was very strange and can only assume the sudden increase in iron caused it.
Lol, yes I sometimes feel like I'm falling apart too. I've suffered with varying degrees of severe ME since I was a child (missed a lot of school, no qualifications, etc, etc) and currently 80% housebound. I fell into a very dark place at about 19 when all this PCOS stuff had set in and the DWP called me a liar re my ME. I was tired of fighting people and authorities all my life, was sick of being ill and didn't see the point to existing anymore and completely withdrew into myself. I did after a few months find the energy to fight again and won against the DWP, and first mentioned my PCOS symptoms to a doctor (unsuccessful as that was). I still struggle with feeling very trapped (physically in the house as well as in a body that refuses to work) sometimes but keep going.

[phoenix15]

Hi snowdrop,

I have a multitude of other chronic health problems as well, such as severe m.e. and fibromyalgia, severe allergies, migraines and so on which left me housebound for past 10 yrs, so I really do understand how difficult it can be to be stuck in a body that does not bloody work and how absolutely depressing it is to cope with. Have you thought of seeing someone to talk about it all. I'm glad you managed to the energy to fight the DWP cos they certainly don't make it easy for people but you have to keep hanging in there OK with everything. I do some breathing exercises and hypnotherapy/relaxation to help cope with the stress.

Finding things to help with pcos etc is hard as everyone is so individual with what works for them, so you kind of just have to give things a go. I know it can be quite expensive though and there's many things I would have like to try but couldn't because of the cost. I was always the opposite with periods (I.e. bleed too much and too often which is strange for pcos as they seem to go the other way). I also have to take iron and vit d as well as they are permanently low but I don't think I absorb things well cos of my bowel problems. Like others have said, keep an eye on your carbs and sugars as they do have an effect on you but are bloody hard to reduce when I crave them so much, ha.

Have a look on YouTube as some people post videos of things they have tried and something might help and chat to others on here as they will have tried lots of things too.

Hope you find something that helps you and keep hanging in there OK.

[Snowdrop]

Hi phoenix, sorry to read you're in a similar situation!

I have thought about mentioning it to my GP about having someone just to talk over everything with but I find once I've written everything down, things feels a little better and discussing it with someone else then feels a bit daft and trivial. But then the cycle happens over again so maybe I will consider it.

Thanks for the suggestions and yeah I'll keep my options open and give different things a try. You keep hanging in there too. : )

[Lianne9]

Dear Snowdrop,

If the PCOS diet helps you then I suggest that you adhere to it, regardless of the blood test results. I recently had blood test results which showed normal glucose and hormonal levels so despite a CT scan showing that I have poly-cystic ovaries, the doctor stated I do not have PCOS and in fact seemed annoyed by me asking questions. However, I have many other symptoms like bad acne (despite being 23 years-old), hair loss in my scalp, a bloated stomach and facial hair. I have also always had dark circles under my eyes, which I am not sure if it is connected to PCOS. I asked for the opinion of a second doctor, who said I probably do have PCOS and that I should adhere to a PCOS diet and carry on taking the contraceptive pill. She also prescribed me a cream for my acne.

I first noticed something was not right when I was 15 and it's only now that I am dealing with the issue so my advice would be to take control of your body and your health by doing research and finding out which food, exercise, creams and medication works for you.

I went to my gynaecologist at 15 years old because I had had 2-3 day long periods three times in one month (this was a one off event and never happened to me again). My gynaecologist requested a scan of my ovaries, which showed they were poly-cystic, as well as a blood test which showed a mild hormone imbalance. She told me that it was normal in adolescence to have hormonal imbalances and that poly-cystic ovaries were common and should improve in adulthood but that I should come back again if I had any concerns and briefly mentioned that a healthy diet would be beneficial. My periods are regular now so I did not go back to GP or gynaecologist. However, I tend to have severe mood swings during my PMS and was a little worried about my period flow (which had clots in it) so I googled herbal remedies to ease PMS (as from my experience, doctors would not do much about PMS other than to tell me to take painkillers). Whilst searching online, I came across the term PCOS for the first time. I read that it was a life-long condition which had no cure and could potentially lead to infertility. When I read the symptoms, I was almost convinced I had PCOS because I felt identified with many of them (as I described above). Moreover, I read online that a diet free from dairy and gluten would improve my overall symptoms. Funnily enough, I had adhered to this diet last summer because a friend of mine who is a bit of a health guru was telling me that she had cut off gluten and diary and was feeling much better and energetic. When I tried the diet, my colleagues and flatmates did mention that my skin looked much clearer and my face less swollen. However, due to the lack of scientific evidence, I went back to my normal eating habits after a few months because I was worried I would later resent not consuming dairy as it could lead to osteoporosis, etc.

Last month, I told my GP I was concerned I had PCOS because of the symptoms I presented and the fact I had had poly-cystic ovaries as a teenager. They requested some blood tests, which showed normal glucose and hormone levels and a CT scan. The radiographer told me than my ovaries had the normal number of follicles in them so I just left it at that. Then they rang me from my GP saying they had received the results from the CT scan and that I did have poly-cystic ovaries but that I did not have PCOS because my glucose and hormonal levels had shown normal. I felt quite anxious and pointed to the doctor my acne and my hair loss. She said that these were mild symptoms and that as long as my periods were regular (as well as having normal glucose and hormonal levels), then I did not meet the criteria for PCOS. My grandad is diabetic so I requested the doctor to test me for insulin resistance. My glucose levels could have shown normal because I am a healthy eater and I am very mindful of what I eat. She said that the GP surgeries in England do not test for insulin resistance and that she could not refer me anywhere. She also seemed quite annoyed about me asking questions. Again, I left it at that thinking that maybe I was being a bit of an hypochondriac or a drama queen.

A week later or so, the man I am currently dating mentioned that I am quite hairy and maybe I should go to the doctor's about it. He didn't say it to upset me and in fact, he is always commenting on what a nice figure I've got (I do exercise regularly). He didn't even know I had recently been to hospital to get my ovaries scanned or my worries about PCOS. My facial hair is not even as near as bad as my acne or my hair loss in the scalp. However, his comment made me realise that I should find out more about PCOS and not put my health in hands of one doctor.