Other conditions caused by Pocs - PCOS UK (Verity)

PCOS UK (Verity)
6,208 members1,791 posts

Other conditions caused by Pocs

Abby14
Abby14

Hi I am Abby, I have Pocs & it has caused me loads of other health problems! I am diabetic & have chronic liver diease & tumors all over my liver! They are not cancerous but can turn that way! They where caused by taking the Pill Dianette to help my Pocs! Has this happened to anyone else?

25 Replies
oldestnewest

Not heard of this happening before, every medication has risks and genetics do take a large part in this as well.

I have been on the combined pill for 25+ years and for me it controls my pcos symptoms really well so I am fortunate.

What can they do to assist you now ?

Abby14
Abby14 in reply to Hols969

Just keep an eye on things , regular checks. I am on meds for diabties & that is under fairly good control

Hols969
Hols969 in reply to Abby14

We have an increased risk of diabetes and heart disease due to pcos. Good the diabetes is under control

Abby14
Abby14 in reply to Hols969

I did know that :) My mum & auntie (sisters) also have diabetes. I am just about to book my yearly check, even though I have my HABC1 done every 3 months with my regular bloods I still make sure I have a proper check :) my chosertol is not to bad 5.5, but my good is to low & bad to high! I do try to keep it down! I can"t have stains coz of my liver my GP told me this. I was told by Liver drs that the diease & tumors where caused by POCS, this is widely known in America. The tumors where caused by the pill! I wished I looked after myself better, I really do. Anyone newly diagosed should be make aware of all the other isuess that go with POCS, I wasn"t I had to learn the hard way! still it is what it is :) I just now try & keep as healthy as I can. Thanks for your support :)

Hols969
Hols969 in reply to Abby14

I will mention that to the trustees as I have not heard that link (we like to do our own research in the UK I think).

I think everyone with pcos has to learn the hard way to be honest, sadly they still just think it is a fertility issue with no long term health consequences but it is so much bigger than just fertility!! I had a lady contact me with uterine cancer due to the fact she had had no periods and she was never told how important it was to have a period 4 times a year as her GP had just dismissed it. You have a good specialist which helps.

Good luck, hope things go well for you.

Hi Abby14 !

I feel so sorry for you - this just shows how awful this condition can be. I also had problems with the 2 different pills I was on - 1 was an oestrogen only pill , this used to make my periods regular but wow they were painful and very heavy ! When I was on my period on this pill I would pass large blood clots and feel dizzy when doing so. I came off the oestrogen only pill and went onto the combined pill - this again sorted my periods out i.e. made them regular, but this one affected my mental health , it made me hallucinate and triggered the start of my OCD , I now suffer mentally every day because of my OCD. I'm not sure what you can do in regards to easing your symptoms etc. but why don't you speak to a different GP who might be of more use to you ? I was diagnosed with PCOS when I was 13 years old , the first GP I saw just shrugged it off and said these things happen , so my mam changed my GP and he put me through multiple tests to help ease the symptoms , that same GP sent me for a scan and confirmed I have a lot of cysts on both ovaries which were causing my periods to be irregular and the normal 'high levels of testosterone' in my blood stream.

I honestly do feel for you and I wish I could help you myself. Big hugs x

Abby14
Abby14 in reply to sarah97

Thanks :) My Gp is very good, He has been better than alot of my consulants. very supportive. I make sure I have all my checks. My periods are all over the place! Really heavy some months then hardly any the next! My iron levels are low all the time :( I really wish I had looked after myself better when I was diangosed with POCS. I never knew at the time how important it was to take care of yourself! when I came off dianette my mirgaines came back with a vengance! They where so bad at one point I thought i was having a stroke! Gp said it was hormones! So sorry you are having mental health problems :( Thank goodness my mirgaines are now under control!

sarah97
sarah97 in reply to Abby14

So glad your migraines are under control, they're not nice at all! x

Abby14
Abby14 in reply to sarah97

Thanks :)

Vonnah
Vonnah in reply to sarah97

My endo doctor didn't tell me how my ultrasound looked like. It was only done on the outside since I'm a virgin but she didn't say how many cysts or anything. Now I'm confused. Aren't the doctors supposed to show you pictures of the ultrasound and explain? I am upset this didn't happen with me.

Hols969
Hols969 in reply to Vonnah

Cysts are only a symptom and not the cause so you may not have had any cysts, they are discussing changing the name as it is too misleading (and men can have the condition too, my hubbie and son do)

Vonnah
Vonnah in reply to Hols969

Who is discussing changing the name exactly? And how can i keep up with up-to-date scientific research into PCOS? I would love to know!

Hols969
Hols969 in reply to Vonnah

If you are a member of Verity then they keep you up to date. Its being discussed with the Endocrinology society and lots of others - I think it has been agreed to change the name but I am not sure what to

Vonnah
Vonnah in reply to Hols969

Thanks for telling me!

Abby14
Abby14 in reply to Hols969

I used to belong to verity & am gonna join again :) please let me know of any name change. My membership ran out & I never got round to renewing! I will do in the next few weeks! I found it very good:)

Wow that is very scary! Do you have endometriosis? Isn't that what the tumors are from? And how often do you get check ups to examine the tumors?

Do you think women with pcos should get ultrasounds and exams every few months or years or no? I'm new to this i got diagnosed a few months ago and still trying to grapple all of this scary stuff😔 i hope you get well soon and praying for you! 😘

Abby14
Abby14 in reply to Vonnah

They should let you see your usound if you ask, your GP should have a copy as well worth asking.I haven"t been told I have Endometios. The important thing is to look after your self! I have a book about POCS, I can"t rember what it called, I will look it out & let you know so you can get a copy! It is a very good one :) Make sure you have regular checks for Diabetes as it goes with POCS. if you have any of the classic signs of Diabetes see your GP asap! Diet is very important as well! the book I have tells you all about it! you might stuggle to have kids as well, talk to your dr about this! I have blood tests every 3 months for my liver & an MRI scan every year, I also see my speciailst once a year. My Gp is very good & explains things to me if I don"t understand :) do you have a good GP? I find them easier to talk to than specialists!I will get the info on the book asap! you can get if from the libaery if you don"t want to buy it. Take carexxxx

Vonnah
Vonnah in reply to Abby14

Thank you so very much!!!!! I would love to get that book!!!! I need answers haha! I do have a good one and i will definitely ask and talk about the ultrasound. What are diabetes checks ups like? That is extremely scary to me....diabetes run in my family like mad crazy...my dad has it and my mom is a pre diabetic...plus almost all my aunts and uncles on both sides have diabetes. Sorry if i scared you or anyone else who reads this😭

Shouldn't women with pcos get their heart checked every so often as well? Maybe i should get mine checked i don't know I'm just lost.

Hols969
Hols969 in reply to Vonnah

Generally it is the weight gain that can cause the other issues so if you are extremely overweight this increases the risk of heart disease, diabetes etc - the weight around your middle is not good generally for your health anyway and it is the way pcos ladies store their fat rather than on the hips like non pcos ladies.

My biggest advise is to keep your weight within a normal BMI range (or as close to as poss), which isn't that straight forward when it comes to pcos tho!!

Abby14
Abby14 in reply to Hols969

I know it"s not :(

Abby14
Abby14 in reply to Vonnah

The checks are nothing to worry about :) it will be blood tests to start with some you have to fast, but they will tell you if you need to do that.I have my check coming up I have a urine & blood test, & then another appoitment to check my feet!. As you have to look after your feet if you are diabetic , also I have eye screening every year, that is unplesent but not that painful, they look in your eyes & put drops in to widen your puplis, Now they do sting at frist :( but it does wear off, after 10 mins they call you back in & take pictures of the back of your eyes, Wear sunglassess afterwards

Vonnah
Vonnah in reply to Abby14

Wow once again, scary! I wish you the very best! 💕my dad is actually a diabetic and he had to get part of his foot amputated all from something that was wrong with his toenail....he is better now from that he can still walk and everything but some aren't that fortunate. But i want to take better care of myself; i just don't know how to at all.

Abby14
Abby14 in reply to Vonnah

Hey, The book I have is called PCOS A Woman"s guide to dealing with Polycystic ovary syndrome & it is by Colette Harris with DR Adam Carey. Colette Harris is a fellow suffer of POCS. I used to belong to a group called verity, it is a support group. I keep meaning to join again! I must :) You have to pay but it is worth it! check out there website, just type in verity POCS & you should be able to find it :) it"s worth getting a copy of the book :) see if ebay or Amazon have it! or you should be able to get it from a libery! There are lots of Diabetic sites on here :) I am on some :) So sorry to hear about your dad :( Glad he is on the mend! When I was told I was Diabetic I was sent on a course called Derek, my mum came with me, it was very good:) gave loads of info about how to look after yourself ect! The NHS sites are good as well :) See your GP & talk about things :) they can reassure you :)

Vonnah
Vonnah in reply to Abby14

Great thanks a lot!!!!!😘💜

Abby14
Abby14 in reply to Vonnah

You are welcome :) Am here if you want to chat

You may also like...