# Completely new to this -PCOS, no periods!



## holidays (Apr 19, 2013)

Hi all,

Well after months of deliberating whether to join a forum, I have finally done it! Feeling extremely fragile and very scared of what I might read and so please only offer positive advise. (No anagrams as I don't understand)

I am now at a point I would never thought I would be and feel I need to seek support. I am 27, normal weight and came off the contraceptive pill two years ago to try for  baby and since then I have not had a period (no spotting or anything) and am not pregnant. I have had an ultra sound which shows small follicles so they have diagnosed me with PCOS on the basis I have no periods and small follicles on my ovaries. Blood tests indicate hormones are normal but just stagnant. I have had a histosalpinogram which has shown that everything is normal. My husband has had a sperm test and that is ok. So I started provera to induce a period which did not work. I then tried another drug beginning with an N I think and that didn't work. So then my consultant said to try the Clomid anyway - 50mg for 5 days, on day 21 I had a blood test - I did not have a period and the blood test indicated that I hadn't ovulated. So now I have doubled the clomid 100mg for 5 days and have my blood test on Wednesday to see if it has worked. My consultant has said that if it has not worked then I need to look into specialist fertility clinics, possibly IVF is the next thing. Originally I was lead to believe a 'sniff' of hormone would kick start me but it has not and I feel so disappointed and like a failure. Is it normal to feel like this, every day I have to fight to stop the tears Somedays I can be strong but others I cant stop crying...and I hate living life as a 'struggle'.  It seems my hormones are just at a plateau and I don't know why I consider myself healthy, 5ft1 9 stone and just don't know why this is happening!! I have just had the call from my GP and the 100mg of Clomid did not work - low progesterone , I have not ovulated, my hormones just aren't changing at all.

Before going to a specialist clinic is there anything else my consultant could do, try?? What about the procedure of burning the cysts??

Due to my husbands work we live in Yorkshire, which is not funding any fertility treatment. We are originally from Norwich, all our family are there. Is there anyway round getting treatment funded? Can we say we live in Norwich and get treatment there if they were to provide support with funding??

If we do have to self-fund how do we find the very best clinic in the UK?  There goes all our savings for a house 

I want to stay positive but am finding it hard. All my friends have children or are pregnant and I feel so alone. The only people I have talked to about this is my mum and husband. The clomid may have worked this time on the increased dose but 'gut instinct' tells me it hasn't.

It would be nice to hear from anyone with very similar story and anyone that can offer advice as to what I should do next??

Thanks, x x


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## tazza_uk (Apr 23, 2012)

hi holidays

 joining a forum was the best thing I did! It shows that you are not alone and we actually understand what you are going through.

I too have PCOS.  That's fantastic news that the histosalpingram showed everything is normal.  Im presuming the other drug you mentioned was maybe Norethisterone?! 

There are quite a few people who can agree with you about the 'mood swings'.  Some days nothing will be able to touch you, the next is a hide and cry day.  Some people have put it down to the effects of the drugs.  Sending    as I know how hard some days are.

Unfortunately I am not in your area, but hopefully someone may be able to share some local knowledge help.  Maybe try looking for a thread in the regional section about Yorkshire/Norwich?!

There are a few pretty good websites which ill send you, when I find them, which show the unbiased info for clinics. 

Sorry I cant be of more help.

xxx


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## holidays (Apr 19, 2013)

Thanks tazza, your response had already made me feel better and really useful so once again thank you.
Yes it was noresthisterone! Thank you for the website, I will have a browse when up and running. X


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## liquorice comfits (Jan 3, 2013)

Hi holidays,

I have been where you are now. I too have PCO and do not have a natural cycle. We sound very similar and I can relate to your situation completely. I am sorry that you are feeling so down. I've been there and it sucks.

Great news that your husband's sperm count is good and that everything else with you is fine, apart from the fact that you do not cycle. This is a good thing.

Being a bit further down the fertilty journey line, I would wholeheartedly recommend two things:

1) that you see a fertility specialist - worth the money to get some answers. Some clinics offer a Fertility MOT, where they will assess both you and your husband, and then advise you what to do next. If you are not entitled to treatment on the NHS, have you thought about egg sharing? (you donate half of the eggs you produce in an IVF cycle, and in return get reduced cost, or even free, treatment)?

2) that you try reflexology. It is very relaxing, and has helped to make me feel much more positive. It helps to restore the natural balance in your body and can help absent periods to return. Amazingly, I had a natural period in March, when I usually don't cycle by myself at all. I put this down to the reflexology. Unfortunately, as I was about to start an IVF cycle, I then had to stop the period with norethisterone tablets! Another therapy that works in a similar way is acupuncture.

I have just started my first IVF cycle and I am egg sharing. If you want to know anything, get in touch.

Just remember that you are not alone and there are lots of people out there who can help you.

X



Provera and Norethisterone did bring on a period with me. I was wondering what dose you were on and for how long you took them?


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## holidays (Apr 19, 2013)

Thanks liquorice comfits!!

Although I wouldn't wish this on anyone, it is so nice to hear that I am not alone.

It is good news that everything with me is fine other than the fact I don't have any periods. I am worried why the tablets did not work though? And it all remains very unexplained right now. I can't remember my dosage of provera and Norethisterone , but I tried provera 3 times and Norethisterone once. My consultant said there is no point keep trying if it is not working due to the side effects of the drugs. How long have you not had a natural period for and then finally had one?

How much is a fertility MOT? I guess this sounds like a good idea if I can't have anymore support on the NHS and there is nothing else to try.

I did try reflexology! I did find it relaxing but I am somewhat of a sceptic and I was thinking of the pennies if we are now needing to pay for treatment. Ideally I should have probably given it more of a chance and continued the reflexology - I think I need to relax but easier said then done!!

Thanks for the info about egg sharing - never even knew it was an option! I am worried if I even have eggs but I guess my blood test would have shown that!??

Anyway thanks again,

x


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## hiltra (Aug 16, 2011)

Hi Holidays

Your story sounds similar to a friend of mine. She had PCOS but everything else was fine (on her and her partners side).
She ended up going down the IVF route as recommended by Consultants and now has two gorgeous twin boys.

With regards to funding, i'm not too sure. I thought all NHS services offered at least one round of fertility treatment. You may want to look into this further and seek some assistance. You should be entitled to something - the privelige should be offered to all women in your situation regardless of where they live!

I took Fostimon to increase the amount of eggs I produced before egg collection but the 'sniff' was to help me down regulate (make everything go quiet) before my body started to produce lots of eggs.

We had our first round of ICSI treatment (injecting the sperm straight into the egg) back in November. It was private and i'm not going to lie, it did cost quite a bit (£12,000). However, the cost was higher due to the fact that we wanted results and chose the best clinic (statistically) in London - ARGC.
Other clinics may not charge as much.

Before we started treatment, my partner proposed but we decided to delay getting married because we wanted children more. 
Your savings should be spent accordingly - you are at a great age so time is on your side. If you wanted to buy a house first, your eggs will still be lovely and healthy even in a few years time.

I hope everything works out well for you
Wishing you the best of luck
xxxx


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## yogabunny (Sep 12, 2012)

Hi holidays, 
welcome to FertiltyFriends, I am in a different situation and have blocked tubes, i have regular periods and ovulate, but through ultrasounds for ivf have found out also that also my ovaries are polycystic.

I have been doing some research to see if I might have PCOS and if there is anything i can do naturally with what i eat to balance my hormones that might give my next IVF best chances. There are lots of books on natural approaches to minimising even curing the effect of PCOS with diet etc. 
I'm reading this one at the moment: http://www.marilynglenville.com/books/natural-solutions-to-pcos-book/ 
A friend on here also recommended: The ultimate PCOS handbook

As for the postcode lottery well....that is a nightmare !  We get good funding in Brighton, none if we move back to friends and family, so have been putting that on hold..... but found out recently get even better funding in the East of England which we could fall into if we moved a few miles from my Mum!!! We will consider moving if no success this year as I need the support network...

Lots of luck, you are not alone xxx    

This post contains an unconfirmed link/information and readers are reminded that 
fertilityfriends.co.uk or its owners are not responsible for the content of external internet sites


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## Wraakgodin (Jun 17, 2006)

to FF, Holidays!! Have a good look round the site, post in whatever section you want and make yourself at home. There are so many sections here with a huge amount of information, so whatever you are going through there will be someone here to help you.

There is no need to be scared, we will be gentle with you! There will only be positive advice, but obviously you will read peoples real stories which are full of ups and downs, as you have already realised going through treatment is not plain sailing, but we are all here to support each other. There is a "What Every New Member Needs To Know (includes a list of common abbreviations)" thread which will help you navigate the site ~   CLICK HERE,

I am not sure how funding works as I live in The Netherlands, if you look at the regional secton ~ CLICK HERE you can ask the members there.

Here are a few other links that I think might help you.

PCOS ~ CLICK HERE

Coping With Infertility ~ CLICK HERE

Ovulation Induction, Clomid & Tamoxifen ~ CLICK HERE

Keep a diary of your treatment (or read the experiences of others) ~ CLICK HERE

Complementary and Holistic Approaches - CLICK HERE

Regional ~ CLICK HERE

What Every New Member Needs To Know (includes a list of common abbreviations) ~   CLICK HERE

Our live chat room has a new member chat at 8pm on Wednesday. Here is our Chat Zone section which will give you info on other chats: CLICK HERE

Please feel free to ask more questions here, or on any other part of the site, there will be wonderful helpful people there to give you lots of support, information and cyber hugs if you need it.

Good luck!            

Sue


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## holidays (Apr 19, 2013)

So tonight I had a phone call from my GP, my second go on Clomid at 100g has not worked. Previously tried provera and Norethisterone. My day 21 blood test shows low progesterone, I have not ovulated. My hormones are not changing at all. Im gutted! Has anyone else had any experience where none of the tablets have worked to induce a period? 
Its looking like I may have to go down the IVF route and seek specialist support. If none of the tablets have worked will anything else like IVF be able to start my periods? why have the tablets not worked? Do I even have eggs? Answers my consultant does not know the answers to. 

Thank you all for your support!

Thanks Wraakgodin I will post in the regional section to find out more.

Thank you yogabunny I am going to purchase the book you have recommended. The funding thing I will have to look into but I know they don't fund in Yorkshire. I hope everything goes ok with you.

hiltra - I hope my journey ends up like your friends. I wish you all the luck with your treatment.

Thanks, holidays x


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## yogabunny (Sep 12, 2012)

in the book there are some answers to your questions, and she says that high dosage of vitamin c can help women who are resistant to clomid... i am sure there are some ladies who have some more experience who can share what they have found too. good luck xxx


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## liquorice comfits (Jan 3, 2013)

Hi holidays,

Sorry to hear that your GP is not being very helpful. There must be other ways to induce a period. Or perhaps taking Provera or Norethisterone for a longer period to build up your progesterone levels would then help. Have you considered switching GPs? Otherwise you could try reflexology or acupuncture. You may need to try these for a while though to have a good idea if they are having any effect. IVF won't help to start your periods. In order to have IVF they will need to induce a bleed somehow. Going to a fertility clinic may be your best bet in getting some answers, as they are specialists. A fertility MOT costs around £600 I think for a couple. They will test you both for everything and hopefully give you some answers or at least some options. I know it's not in your area but have a look at Herts and Essex Fertility Centre online. They offer the MOT and have info about free IVF for egg sharers. The blood test you need to have done to test your egg reserve is AMH. As you don't have periods or ovulate the chances are your AMH is high, which means you have lots of eggs. It's just getting them to come out that's the problem (my problem!)

If I can help in any way just send me a message.

xxx


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