Menopause Matters Forum

Menopause Discussion => All things menopause => Topic started by: GuernseyGirl on August 21, 2016, 08:31:59 PM

Title: Ehlers Danlos Syndrome type3
Post by: GuernseyGirl on August 21, 2016, 08:31:59 PM
Can't cope with severe menopausal symptoms any longer. Been offered Sandrena gel (estradiol) & Utrogestan100 (progesterone) I reacted badly to Mirena Coil, made my joint pain much worse. Does anyone have any experience of utrogestan, please?
Title: Re: Ehlers Danlos Syndrome type3
Post by: Taz2 on August 21, 2016, 11:11:58 PM
Hi GuernseyGirl - just wanted to welcome you to the forum.

I think that a lot of women on here have great success with utrogestan and I'm sure they will be along soon. Sorry to hear that you have Ehlers Danlos Syndrome. Is the Type 3 the Hypermobility one?

You will find lots of support and advice plus friendship on here.

Taz x  :welcomemm:
Title: Re: Ehlers Danlos Syndrome type3
Post by: RedFraggle on August 22, 2016, 11:59:18 AM
Another EDS type 3 person here (yep Taz that's the hypermobility one).

I'm on Femoston 2/10 and it has made my cramping worse (particularly in my feet when I'm on the progesterone) and I had a few issues with my joints settling when I first started it but other than that it's been ok.

Title: Re: Ehlers Danlos Syndrome type3
Post by: CLKD on August 22, 2016, 12:00:59 PM
 :welcomemm:

What's Ehlers Danlos Syndrome? 
Title: Re: Ehlers Danlos Syndrome type3
Post by: Taz2 on August 22, 2016, 02:44:03 PM
Have a look here http://www.nhs.uk/conditions/ehlers-danlos-syndrome/Pages/Introduction.aspx

Taz x
Title: Re: Ehlers Danlos Syndrome type3
Post by: CLKD on August 22, 2016, 02:48:25 PM
 :thankyou:

Crikey, that probably takes some time to get a diagnosis then? 'cos it covers a multitude of symptoms 'common' in other conditions. 

Let us know how you get on!
Title: Re: Ehlers Danlos Syndrome type3
Post by: RedFraggle on August 23, 2016, 05:56:16 AM
Some people are really debilitated by EDS. I'm lucky, I've never fully dislocated anything but I have to be careful.

I have realised now that when I first started being peri my joints got an awful lot worse. The flare up I had when I started HRT was very similar to those episodes but it has settled.
Title: Re: Ehlers Danlos Syndrome type3
Post by: babyjane on August 23, 2016, 08:40:44 AM
For those who watch Corrie, the character Izzy has EDS as does the actress in real life.

I had never heard of it and looked it up.
Title: Re: Ehlers Danlos Syndrome type3
Post by: GuernseyGirl on August 23, 2016, 01:06:25 PM
Thank you for the welcome Taz2.

I didn't get diagnosed until I was 32 when my 12 year old daughter started dislocating joints too, and suddenly my symptoms were taken notice of. Sadly I passed it on to both of my children.

I have struggled so much with menopause symptoms for 3 1/2 years and had finally decided I could not go on and have to take HRT .  I'm seeing my gynaecologist today after waiting three months for an appointment, and the news today is of the increased risk of breast cancer. I have fibromyalgia too, as well as hemiplegic migraine .Just don't know if I can risk getting another serious illness  :-\  ...wish I knew what to do ...
Title: Re: Ehlers Danlos Syndrome type3
Post by: CLKD on August 23, 2016, 06:11:09 PM
Ignore today's Press Release for starters  ::). Quality of Life is important.  Hopefully you took a list to the appt., talked long and hard so that you came out of the appt. with information to digest?
Title: Re: Ehlers Danlos Syndrome type3
Post by: GuernseyGirl on August 23, 2016, 09:43:04 PM
My specialist was foreign, very nice chap, but kept going off on rambling anecdotes which were irrelevant and he was quite hard to understand. He said his wife was taking it because 'he doesn't like a grumpy wife!'
He is very pro HRT.
Was going to start my regime tonight, but just read the info leaflets in the drug packets and quite frankly scared the life out of me- how does anyone go ahead and take it with all those terrifying warnings- I thought Breast cancer was the only risk... :'(. Reassurance if possible please.
Title: Re: Ehlers Danlos Syndrome type3
Post by: CLKD on August 23, 2016, 10:15:31 PM
Having read the leaflet, what's the worst that could happen?

With litigation the way it is World wide then those leaflets have to be printed and included  ::).  Did you feel listened to during the appt.?  I am sure that medics wouldn't prescribe 'dangerous' drugs but it is well that we are aware of possible problems.  For me it's about Quality of Life ;-).

Breast cancer is not the 'big baddie' it was once thought to be ;-).