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[SueLW]

Hello Ladies

As the title says.  I've been on 2 pumps of gel and 100 Utrogestan every other night vaginally for 6 weeks now.  On the whole there have been improvements in that time.  The progesterone doesn't seem to be a problem.  At first the gel made me feel so much better in so many ways but that feeling didn't last long.  It soon dropped to a sort of OKish, but not happy, very flat and colourless kind of feeling.  But I was thinking more clearly.

However my ability to motivate myself and actually work is minimal.  I waste so long just sat down as I'm still exhausted when trying to move around (could be my underachieve thyroid getting involved too).  But on the whole I could feel improvement.  Until earlier this week.  I had a day where I suddenly realised I was walking really well again.  Striding out with power and strength.  That made me feel great.  I got loads done in the day too.  And then it went downhill fast.  Very low mood, miserable and gloomy.  So weary.  No focus or concentration.  Can't walk far or well, feeling upset and then the other night I had a restless night with very bad feelings/dreams? when I was very distressed, feeling trapped etc.  Yesterday I did nothing of use.  I was OK until I ate my breakfast, then I could barely move without getting out of breath and exhausted feeling.  As evening came I got a bout of atrial fibrillation which I seem prone too now and then and loath.  It is so horrible.  It didn't last long but I am still stressed by it because I have been getting one of these episodes every 10 months or so for several years.  Last night was only 3 weeks from the last one.  Today I am still miserable and useless.

Does this sound like my hormones are crashing around somehow?  Despite the gel and vaginal pill?  Does it mean I need more of something?

Anyone else felt the same on this kind of timeframe?

[racjen]

Hi SueLW, I don't think it's unusual for problems with progesterone to surface after you've been on it for a while - as far as I understand it, it builds up in your system and can start to cause problems after weeks or even months of it being OK. That's certainly what happened to me - I was OK on continuous utrogestan for a month or so, then I got more and more depressed and lethargic, and also suffered stomach problems, all of which disappeared once I had a break from it. Unfortunately since then I've not been able to find a regime that works without causing massive anxiety, so I can't claim that I've got it all sussed, but I do think you might be suffering from an overdose of progesterone.

[Tempest]

Racjen - I've just had a thought. Have you ever considered trying Tibolone for your HRT? You are postmenopausal due to your chemo. It might be worth a shot! I found it calming, but it made me pretty dizzy so had to quit. If it wasn't for that, in hindsight now it was one of the better ones I've tried. Ive had appalling luck with HRT's, so that's saying something! xxxx

[puddlesmum]

This is what is happening to me. I'm ok for 20 days of the month, then 10 days I'm in hell. See if it matches up with when your cycle happens. We've pinpointed mine to my ovulation. I'm taking 3 pumps of estrogel and it still happens to me. I mean I don't mind if it's a little dip but it's just like you described. I'll notice how well I am then the bad dreams about being trapped and suffocated start. Then the crash. Plot it hun, see if it's connected. I'm still trying to get full relief, so hang in there.

[racjen]

Tempest, thanks for this - yes I had wondered about Tibolone as I know I need testosterone but can't tolerate it in its pure form. The only thing that puts me off is that I think it's a pretty low dose of estrogen, and at present I seem to need at least Evorel 100 patches to keep my level looking respectable. Will mention it to the consultant gynae I'm seeing on tues though (finally, after only a year of complete misery...)

[SueLW]

This is what is happening to me. I'm ok for 20 days of the month, then 10 days I'm in hell. See if it matches up with when your cycle happens. We've pinpointed mine to my ovulation. I'm taking 3 pumps of estrogel and it still happens to me. I mean I don't mind if it's a little dip but it's just like you described. I'll notice how well I am then the bad dreams about being trapped and suffocated start. Then the crash. Plot it hun, see if it's connected. I'm still trying to get full relief, so hang in there.

Wow, that's interesting Puddlesmum.  So you get the feeling well day followed by the going down fast days and the weird overnight issues? 

I don't have a cycle that I know of anymore.  I have a Mirena for peri and think I'm way past periods, but still getting hormonal upheaval.  I take the Utro. every other night so I thought I was OK.  I do keep a diary, but I find them confusing when I look back! 

I describe (to myself) my night episodes as almost psychotic!  The worst made me get up and put all the lights on in the house because I was so afraid of the dark.  This was long before Utrogestan though.  And even with all the lights on I was terrified the darkness would never end.  I was on the doorstep in PJ's watching the dawn come up that night, I was so desperate for the light.  I felt a bit like that last night at times, but I was able to fight it and go back to sleep.  I will keep my eye on this for sure.

I don't need to do anything to encourage more AF episodes that for sure. 

[puddlesmum]

Yes exactly the same. And when I do manage to fall asleep, I wake really early and my body shakes, literally shakes me awake. It's horrendous. I can feel the little twinges in my legs during the day but at night when I'm going through it. Hell. I feel so wired when it happens. It was pretty much all the time until I got put on BHRT and now it's every 3 months, like WTAF.

It's like clockwork. 20 days of me acting the fool, my old self, bubbly, bouncy (that type of person that would really pee you off they are so happy) then it's like someone turns a switch in my brain. I can physically feel it happen and boom, shakes, tears, negative thoughts, complete opposite. Then day 10 it's like the switch gets turned halfway which allows me to get my confidence back again and be all happy.

I just wish the bloody thing would stop now. It's been this bad for about 4 years, with the last 2 being on treatment. Hating every second.

[Kathleen]

Hello ladies.

Like you all I am beyond Fed up with all this!

I also get mood changes that worry me but mine generally fluctuate through the day. For example I felt okay this morning but mid afternoon my quivers started and my mood plummeted and I see from my diaries that this happens often. Occasionally I'll get a run of good days but they are always followed by a crash. In the main I feel better in the late evening. I mentioned all this to my consultant recently and she said it  indicated continuing ovarian activity even at my grand old age of nearly 62! Clearly my treatment so far of 3 pumps of gel and Utrogestan vaginally every night is still insufficient to iron out any fluctuations.

SueLW  - I truly feel for you. It's so demoralising to sense  you're making progress only to have it ripped away. I think our logical brains expect us to experience gradual improvement after feeling unwell but of course that is not the hormonal way!

I'm sorry I can't offer any practical help but you are not alone in your suffering or your frustration.

Wishing you well.

K.

[SueLW]

Thank you ladies.

I think it's all to do with my own hormone production still going on in the background, completely out of control.

Today I woke up tired and felt anxious for a while after putting the gel on.  But then I perked up and have been the direct opposite of yesterday.  I've (slowly, because being under medicated on thyroid meds is exhausting) done some jobs, been out to the supermarket and even rummaged about in my barn and scraped some paint and putty out of a window frame.  I'm tired now, and I fear that will I ever be able to replace the putty and repair the paintwork?!  I have no idea why I was so bad the last 2 days and so much better today.  I took Utrogestan vaginally last night.

My hormone doctor told me at the very beginning, 3 years ago, that with her treatment I could expect to have good and bad days.  She didn't say there would be 30 bad days to 3 good ones!  It has to be possible to feel better more regularly.