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[Tempest]

Dear Dazned! Your story is an inspiration to us all that things can be better - thank you and WELL DONE YOU for doing all of those things and having the tenacity to get through. xxxxxx

Lizab, you're very welcome to be here! The histamine/mast cell connection with estrogen is interesting, isn't it? I'm contacting my Anaphylaxis Consultant first thing on Monday. They don't know I've been trialling ERT, but I was assured by two menopause consultants that it would 'be fine' despite disclosing my full history of life threatening allergies starting in perimenopause. Interestingly, this is characterised by a drop in progesterone and large surges in estrogen. I may have been missing something very obvious for me all this time! xxxxx

[edelweiss]

Yes Dazned you are amazing and I'm in awe of you too. There's certainly something I should take from your experience - acceptance of what's happened and then try and deal with the result. I guess I'm following you down that road, I'm just a bit further behind! But you are as Tempest says truly an inspiration and I am so so pleased that it worked for you - and whoever the woman who helped you is, well she deserves a standing ovation too. Thank you mystery lady!

Welcome Lizab, and I am so pleased to hear your story too. You seem to have found a way to feeling better and I am happy for you.

Love to all this thread tonight. xxx

[dazned]

I am far from amazing believe me !
The hardest lesson I had to learn was accepting,which seems to be a bit of a dirty word nowadays 
I found out that not analysing everything to the nth degree as usual was the most positive,uplifting experience ,much to my great surprise !

[Tempest]

Dazned, you don't give yourself enough credit. Hugs! xxxxx

Please excuse me ladies, but messaging has been impossible for me since my DS purloined my I Pad a couple of days ago ( he does this all the time, despite having his own. Hubby steals it too. Is nothing sacred)?

I just wanted to quickly reach out to Lizab and say that  the description of the flushes you've had - the intense ones you mention last in this thread - are what I am getting now several times a day:

https://www.menopausematters.co.uk/forum/index.php'topic=31081.0

Thank you for sharing this, as I've never come across anyone else describe the type I have so accurately. Have they decreased now? And at times, did they make you want to vomit?

Sorry to go a little off topic, ladies (just hoping these along with everything else decrease one day if I can't use Estrogen)!

Thank you in advance for indulging me. xxxxx

[Lizab]

Back then, pre-hrt they didn't make me want to vomit, but I did want to lie down on the ground for the cool, like when you've had too much to drink and want to feel the cold floor, mostly right before you vomit 

Lately my flushes aren't as intense (fingers crossed) but I am getting nausea with them. Also, I've mentioned on another thread that if I have a headache, a flush eases my the pressure for a few minutes.

[Tempest]

Yes, me too with the headache Liza!

Actually, I've been reading back through your posts and you and I seem to be having EXACTLY the same menopause - no kidding! And what's weird is that we felt so unwell on HRT too. That 'allergic' feeling......wow! xxxxx

[Lizab]

While I hate that anyone is going through it like this, I'm going to take comfort in knowing you're having the same. The next time I feel like the doctors are missing something and I'm certainly dying, I'll remind myself that there is at least one other out there like me so it must be the menopause. I bet there are more like us out there too!

[Annie0710]

I was diagnosed with severe latex allergy when I was 21 and suffered my first ever allergy and anaphylaxis

1999 age 32.  Hysterectomy for total prolapse (this occurred age 23 from a difficult/mishandled birth)
2000 (6 months later) severe night sweats, itchy crawly skin, vaginal dryness, lots of symptoms but NO depression/anxiety/hot flushes - dr tested oestrogen and it was low and she diagnosed premature ovarian failure.  Given 1mg elleste solo, within 4 days symptoms gone.  2 weeks later symptoms creeping back in so without hesitation she prescribed 2mg elleste solo.  This was my miracle tablet and I was totally, completely back to my old self

2010 - I met my partner and was having trouble catching my breath at night.  Drs diagnosed allergy-induced asthma and referred me to allergy clinic (lol just previewed this and it sounds like partner took my breath away !)

2012 - extremely stressful events and 3 months later sudden onset of: light headedness, muscle weaknes, low mood, nausea, concentration problems, worsening of asthma, daily mild allergic reactions, lack of understanding simple things, crushing fatigue, there's more but I can't think right now But NONE of my original POF symptoms.  Bloods revealed B12d and levels indicating peri menopause.  Gave up full time work as I couldn't cope with hours, stress and being social

2015 - found this forum and saw all the different hrts to try so started elleste solo patch - within hours I had an horrendous 4 day migraine where I was in A&E twice.  Started estradot 75mg, this is where I think I tell myself that things are working but I never felt right, depression wasn't as bad but still there but social anxiety was increasing

2016 - scan revealed no ovaries, apparently it's quite common if blood supply has been severed as was what happened to me in 1999.  Started Testim but used very sparingly so probably didn't get the full benefits.  Xmas I felt so desperate to be normal again I started Tibolone

2017 - new to Tibolone.  It's given me some energy and can sometimes walk with a cocky little spring in my step, but other times I'm withdrawn and fear that I'll never be able to socialise again.  I get tired but I can usually fight it unlike it flooring me previously .  I still get allergies most days but one particular one has gone.  Asthma attacks (I think they are mild) are daily and not caused by the trigger originally given to me.  I still have no libido but I can usually respond well.  I laugh again and I am so enjoying my grandchildren
I still , have never had hot flushes but my night sweats have returned but on a manageable level and as far as I know, not every night

[Tempest]

I hate that you're having this too, Liza but in a way it is comforting  - at least I won't feel like I have to dash off to A & E! I never imagined that the build up to those kind of flushes could last HOURS, did you? xxxxx

Gosh, Annie! You were so young to start this menopause journey! I so hope things are coming to an end for you now. The Tibolone dose is tiny (or so they tell us) but it may be that this is just the gentle amount of HRT your body needs at this stage. xxxxx

How are you going on your half dose of Tibolone at the moment, Edelweiss? You did start it last night? xxxxx

[edelweiss]

Hello again and already I care so much about everyone on this thread. I so want us all to feel better, like Dazned.

Thanks for remembering about tibolone, Tempest. Yes I took my 2nd dose of tibolone last night. Nothing much to report so far. I could imagine some differences but there aren't any really.

And your comment about women are made to feel it's their fault is absolutely right. I've definitely had 'that look' and tone of voice. But I am perfectly sane and entirely rational. I've just been extremely unlucky, like everyone else here.

Thinking of you Annie you've dealt with so much, bravely and optimistically. I really admire you.

And Lizab I am very sorry you feel so ill. It's just beyond comprehension isn't it?xxx

[Annie0710]

Aw bless you both but it's nothing more really than anyone else has suffered plus things didn't really start (nasty symptom-wise) until 2012

Incidentally today It was confirmed I have Raynauds, she told me to look it up, if the onset is after age 30 it's highly likely it's secondary and caused by autoimmune (I've said all along I think something is occurring alongside menopause) plus Raynauds started around the time the double vision did.  Not sure what I have to do about this as so much has happened today at Drs and dentist but I think she said read up about it and if I'm doing all the precautions I'm to go back ? She was asking questions which I think was connected to rheumatoid arthritis but I don't think it's that x

[Tempest]

Very, very early days for the Tibolone, dear Edelweiss! I'm WILLING this to work for you with every fibre of my being!

Oh gosh, yes.That look.  THAT tone of voice - as if we're being ridiculous because WE don't fit the 'standard' treatment response. Demoralizing. Belittling.

They say that the internet is going to be an amazing treasure trove archive of how we live today for future generations. I can only imagine and hope that in the future, people may read back our experiences perhaps and think how primitive! How barbaric! These women were treated like this? They relied on hormone replacement made from wild yams and horse urine? Hopefully by then, there will be some wonderful scientific discovery that means that women don't have to endure many years of these horrendous symptoms. I hope. I hope.....xxxxx

[edelweiss]

Thank you so very much Tempest.

Belittling - yes. Demeaning - yes. If it was happening to their wives or daughters they'd sure take it more seriously.

Oh yes, if we could steal from the future and have everlasting ovaries, or other bionic bits to cure us - then all they need to do is sedate us until that day arrives - easy!  xxx

[Tempest]

Yup. I want to be cryogenically suspended until that glorious day arrives......xxxxx

Oh, Annie! So they've confirmed your Raynaud's? Are they doing a raft of bloods for you, sending you to a rheumatologist? They are the very guys for all things autoimmune. Insist your GP does! It's about time - you've been struggling with symptoms for so long and you've always said there was something else going on. Biggest, biggest hugs! xxxxx

[Otes73]

I've got Raynauds too! I was warned by my GP that Utrogeston can make it worse, not sure if that's the same with Tibolone but maybe worth checking? Gloves are my best friend 

I had tests done and mine wasn't secondary but didn't think so as had it for years. But definitely worth a rheumatologist referral. There is medication but I refused as it can cause headaches. What doesn't?!

Xx