PCOS, 20 - never had a period : Hello... - PCOS UK (Verity)

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PCOS, 20 - never had a period

NC01 profile image
NC01
17 Replies

Hello,

Wondering if anyone out there is in the same boat as me. I'm 20 y/o and i got diagnosed with PCOS around 15 years old, this got discovered as i had not yet started my periods. I got put on birth control by my GP and was advised this should start my periods.. however this never happened.

I started to develop a lot of facial and body hair which i couldn't control. I was transferred to a Endocrinologist and got ultrasounds and trans vaginal ultrasounds on my ovaries which showed cysts on both my ovaries. Since i had never started my periods ever i got put of a course of 10mg of provera for a week and was told i would get a bleed within 2 weeks, this didn't happen i then went back and was given a 2 week course of 20mg og provera, again waited 2 weeks with no bleed. At my next appointment i was given an injection of provera in the top of my bottom area was told i would get a bleed within 2 weeks and still this never happened. At my next follow up appointment i just feel as if the Endocrinologist wasn't taking me seriously as he was just like, if you have problems trying to conceive when the time comes then make an appointment to come back?? I feel like there could be more done as i am now 20 and have never had a menstrual bleed before in my life.

It is really getting me down now, I've never came across anyone at my age who has never had a period before so i feel as if i'm on my own here.

Any advice would be great.

Thanks x

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17 Replies
Gr8Nica profile image
Gr8Nica

Have you had insulin resistance and your hormones tested? High levels of androgens, low progesterone and insulin resistance can prevent from having your periods.

Also which birth control did your GP prescribe to you?

NC01 profile image
NC01 in reply to Gr8Nica

Thank you for your reply.

Yes, I was on Metformin 500mg three times daily which I have been taking for 2 years. I used to take microgynon pill, which I had to come off due blot clot history in immediate family, I was then put on to cerezette. I have never once had a period on any of them.

I was overweight around 2 and a half years ago however I lost 3 stone and I am now a healthy weight so I would have hoped that my hormones would have somewhat get a little bit into balance.

I have had my hormones tested and my testosterone was on the high side hence the hirsutism.

Just looking to hear if anyone’s has had a similar situation at all

Gr8Nica profile image
Gr8Nica in reply to NC01

I don't think any of the birth control you mentioned is suitable for us. It's more so Dianette and Yasmin. I never really had huge problems with excessive hair, mostly bad acne but both helped me a lot.

In my case, from what I remember, my gyno gave me 50mg of Provera, each taken for 5 or 10 days (can't remember now) days and then if I didn't get the bleeding within 5-7 days go back and get an injection on the 7th day. That protocol usually worked for me. And once you start bleeding then you start taking the pill.

We do need to have at least 4 periods per year to keep our uterus healthy so I'd push your doctor to help you with that.

Try asking him/her to induce it with 50mg of Provera a day. And if that helps, if you want to, try using either Dianette or Yasmin to control hirsutism.

Doctors always say loosing weight will help your symptoms, regulate your hormones, etc. but that's not always the case. When I was diagnosed I was very slim and stayed that way for years. Now I'm actually 2.5 stones heavier than back then but my hormones are witin a healthy norm now. With diet and herbs I'm managing my acne and that little fluff I had under my nose.

Hols969 profile image
Hols969

I think you need to be investigated further as its really important to have 4 periods a year to keep your uterus healthy so I would go back to your GP and see what they can do, there are other alternatives to provera - the other alternative is to have the coil as this keeps your womb lining thin which is really important (not uncommon not to have a bleed with it). I have heard of other ladies not having a bleed ever before so you certainly are not strange or anything!!!

Well done for losing the weight. Are you sticking to a low GI type diet as diet may be playing a role in not having periods. I like 'the answer to pcos' diet (on amazon for £10 at the mo) as it has helped loads of ladies who had period issues or struggling to conceive.

in reply to Hols969

I've been curious- what do you base the 4 periods a year on? Looking at research materials involving lack of menstruation, I haven't found anything that supports it except one suspect study done in the 1950s on a limited number of subjects. Previous to agriculture, menstruation was actually more scarce with the average level of activity women had. Wouldn't menopause also be considered unhealthy? I've literally never heard this before in America, it's only something I've heard since moving to Britain.

Hols969 profile image
Hols969 in reply to

It is what the endocrinologists that support Verity have advised, the womb lining should not get over thick otherwise it can cause issues and having 4 a year keeps it thin. Google issues with womb lining getting too thick !

Your hormones are different with menopause as you are past child bearing age and hormones change considerably so I think that is why it is not an issue, maybe your lining stays thinner because of the change.

in reply to Hols969

That... makes no sense because recent research doesn't support thick linings being a problem. Endometrial hyperplasia is rare to begin with, the complications being more so.

Hols969 profile image
Hols969 in reply to

It is well research that lack of periods can cause issues

acog.org/Patients/FAQs/Endo...

I had one lady contact me about 5 years ago who had this and was quite cross that her GP had never told her the importance of have periods as they just fobbed her off and said she was lucky not to have them.

in reply to Hols969

Cancer was part of the things I looked into as to why menstruation is needed. Actually, the research I saw supported the idea endometrial cancer only hits maybe one out of several thousand of those who actually develop complications from hyperplasia. Nothing I've seen supports it being that great of a concern aside from the one suspect study from the 50s that had 16 subjects. The chance is pretty low. I'd be more worried getting bowel cancer from the meat centered aspect of ketogenic diets. Aside from that, some research centers have been investigating metformin as an anti cancer drug as it seems to prevent cells from mutating.

Foreverfriends profile image
Foreverfriends

Hi I was diagnosed with PCOS at the age of 26 slightly older than you, didn’t have a period for just over a year I cut down fizzy drinks totally, biscuits 🍪, sugar and crisps.

It’s a gradual change and as you get use to is you’ll know what triggers your insulin level. This should definitely help and then your also trying to loose weight so by cutting down your sugar intake you’ll definitely see a difference at least 10% of your current body weight should put you in the safe zone and avert from any more health risks from being overweight!

Macca10 profile image
Macca10

I have tired a dissovlable liquid calls infolic it’s good at kicking starting! Two sachets daily and you’ll feel the difference, this is what my consultant advised I take!

NC01 profile image
NC01 in reply to Macca10

Hi, thank you for advising! Can you let me know where is best to get them?

Macca10 profile image
Macca10 in reply to NC01

Just online, just type it in to the search engine, it’s two sachets daily :)

NC01 profile image
NC01

Did toy get good results with taking this? If so how long?

salek profile image
salek

Hi, I’ve heard really good reviews about inofolic it help regular periods and ovulation, just ordered some for myself hopefully it works.

NC01 profile image
NC01 in reply to salek

Hi, I am currently taking My Ova Tablets - Myo-Inositol Plus which also has Folate and chromium, I take 4 tablets a day which gives you 4g of Myo-inositol 200ug of folate and 100ug of chromium! They are around £32 for a months supply. I Will keep this page updated with how it goes!

Smilithing profile image
Smilithing

Hi Nco1

Sorry to hear about your lack of periods.

Only wondering, don't know if it will help.

Do you get alot of exercise?

It seems when I do something more strenuous for a while or change something sorry its a bit vague, but it appears to start a bleed, might take a few weeks or months.

My pcos symptoms don't seem to be too bad, I wonder if it's cos I have always been active.

Not on purpose (don't like gyms or sport) just a bit like couldn't drive for years so push biked every where, all jobs have been fairly physical always standing, walk my dog & gardening, even pulled up some hedging! Totally impractical! But I don't have many periods. I am on cerazette nurse said I shouldn't have periods on that, I did the other week, the best I've had in years, but I changed jobs,

Was laid off and decided to go it alone & do decorating and what not for people, c if that works out, have been really miserable working for agencies, doing something different & happy at mo, and I had a period, first one in probably over a year.

Seems to happen alot.

Not sure if there's something coming again, but my tummy feels odd, have been pulling up old tiles for my uncle, he's trusting me to lay new ones!

Fingers crossed I don't fluff it up for him. Wonder if the excursion is bringing on periods, have to see.

I am not very girly.

Not sure if this will help. Hope you get a period soon xx

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