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[PansyPot]

Hi all,

This is my first post so apologies if it's in the wrong area. 

I was diagnosed with POF at age 15 following chemotherapy. I was initially given a low dose contraceptive pill, which was later changed to Evorel Sequi Combi patches.

The patches are fine - no spotting etc, but on week 3 and 4 I have a pretty much constant headache. No painkillers seem to touch it, but as soon I start the oestrogen only patches again it goes, so I am guessing it's the progesterone that's the cause.

I have spoken to my GP about this, but they don't seem to know much about POF, and so are reluctant to alter the patches if they're working (no irregular bleeding, and no menopausal symptoms). I am just really struggling with the idea that I have to accept that two weeks out of every four it's OK for me to be loaded up with painkillers and unable to function properly.

I am going to make another appointment with the GP, and I would really like to go armed with information - hence my post. If any one has any advice about different types of HRT, or even the ones which have longer gaps between the progesterone, I would really appreciate it.

Thank you! 

[Dancinggirl]

Hi and welcome Pansypot.
You've had a tough time but you're in the right place for support.
It is very common to be progesterone intolerant which clearly you are.
There are other options.  Utrogestan is a bio-identical progesterone and many women find this far kinder on the system or you could have a Mirena fitted which means far less progesterone is absorbed into your system. If you use these progesterone options your can then have oestrogen in either patch or gel form.
Hopefully others will be along soon with help and advice.
Do read up all the info under the headings to the left of this screen and come back to us with questions.
You may need a referral to a meno clinic or a gynae for a proper assessment of your needs(GPs are generally not very clued up about these things) as this is long term treatment for you and you need to get it right.
Keep posting Dg x

[CLKD]

You are very welcome! even if we don't want to have the issues that brings us here  ………. have a browse round 

[PansyPot]

Thank you so much for replying, Dancinggirl. Thank you CLKD, too!

I didn't know it was possible to be progesterone intolerant, but having googled it and read the list of symptoms it's described the situation to a T! I was taken off the pill and given the Evorel patches because of crippling headaches but the doctors said that they were because of the pill and quite common, but that the patches wouldn't give me headaches - which is quite clearly nonsense.

The Utrogestan rings a bell - I think I took this as part of an egg donor IVF cycle. I don't seem to remember it causing a problem (although obviously at the time I was up to the eyeballs in various hormones!). That with oestrogen in a gel or patch sounds like an option.

The Mirena coil would be an option, but I saw that it's also a contraceptive, and whilst there is virtually zero chance at all that I will ever get pregnant, I don't want to rule out the chance of a miracle happening. Having said that though, I was toying with the idea of demanding a hysterectomy the other week just to stop all the faffing about, so should the other options not work, I would have to seriously think about it.

Thank you so much - it's so nice just to have someone understand what I am saying and offer advice rather than try to brush me off.

[CLKD]

We know our bodies  …………

We have a humorous 'room' too 

[Linsey44]

Hi Pansypot. Welcome to MM, have a good look around for all the info you need and feel free to ask any questions you have.  I very quickly learned that whatever is asked, someone will have experience of it, which is reassuring.

Take care and let us know how you get on.
X

[Dancinggirl]

Hi Pansypot
I'd give the Utrogestan regime a go before doing anything drastic.
Do you still have natural periods if not on hormones ? I assume you under 50 so if you are in menopause it is very important you have some oestrogen to protect your bones and heart.
It must be very tough to come to terms with not having a baby - neither of my sisters were able to conceive and have adopted.
Do read up all the info on this site so you are really clued up - keep asking us questions - we are here to help.  Dg x

[PansyPot]

Hi DG,

I have no natural periods at all - my FSH results were over a hundred (last tested several years ago), I had a DEXA scan a few years ago and it showed that I had lower bone density than I should have so I take supplements to prevent any further loss. I am well under 50 (not 30 yet!) so I have a long time to go before I can stop the oestrogen!

My dalliance with thinking about a hysterectomy was in the midst of a nightmare headache and I was just fed up of it all - the endless patches, headaches, feeling rubbish etc and for what? My uterus etc isn't exactly much use to me, so why keep it? I'm in week one now though so less 'extreme' in my thinking! If I could get into a cycle where I am less affected by the progesterone then I'll be quite happy.

I struggled with the fertility side of things for a long time, but I'm out the other side now (we're in the process of adopting!).

I have made an appointment to see the GP and I've printed out loads of information from this site to take along with me. Thank you all so much - finding this site has been brilliant!

[CLKD]

You have a long medical history!  Is there a support group for Polycystic Ovary Syndrome?  Girls who will know what you might expect?  Let us know how you get on with your next GP visit!

As for the adoption!  Good Luck!  One moment you are a couple, the next