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Author Topic: Please please help me! Updated  (Read 9685 times)

CLKD

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Re: Please please help me! Updated
« Reply #30 on: October 03, 2016, 01:48:03 PM »

Have a look-see at the Daisy web-site, there's a Link on here.  Take a list of symptoms with you to the appt., can someone go with you to push the point? 

Do a search on here for 'Mirena coil' to see how other ladies have got on with it.  I'm sure someone will be along with advice!
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Mary G

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Re: Please please help me! Updated
« Reply #31 on: October 03, 2016, 02:00:49 PM »

Sorry to hear that you are not feeling any better.  From what you have said, it would seem that you do indeed need a serious hit of oestrogen.  From my experience (and yes, I know other women will have had very different experiences so I am only speaking for myself here) that level of oestrogen would be completely useless and in my opinion, it is far too low for a woman of your age.  My blood levels were also very low while using a 50mcg patch and only improved once I switched to Oestrogel. 

I don't know how well you would do with a Mirena coil, it all depends on how well you tolerate synthetic progesterone.

Have a look at Professor Studd's website, he talks about progesterone intolerance and the 7 day 100mg Utrogestan/Oestrogel regime and this might be something you could run past the gynaecologist.

Hope that helps.





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Pageup

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Re: Please please help me! Updated
« Reply #32 on: October 06, 2016, 11:28:24 AM »

Hi Flufferama, I'm very sorry to hear that you are not feeling so well. 

As I'm sure you know, all our hormones work together and affect each other.  You might consider tests for thyroid and adrenal function.  A racing heart at 5 am might be because your adrenals are struggling.  Hair loss, anxiety, exhaustion may be a symptom of a thyroid problem.  There is help online if you find you have a thyroid issue.

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flufferama

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Re: Please please help me! Updated
« Reply #33 on: October 07, 2016, 08:19:18 AM »

Thank you for the replies. Pageup I had my thyroid checked in August and it's OK.

I got absolutely nowhere with the gynae yesterday. My oestradiol is up to 700 (day 21) bloods and he says that's great. He told me he doesn't know why I'm waking with hot flushes and adrenaline at 5am every morning. He was completely uninterested in my progesterone, which is low.

He told me to get a second opinion, and has referred me to another gynae. I told him I was concerned about using unopposed oestrogen (Evorel 50) at the moment and he said it was OK.
Basically, I've got nowhere with him.

Is it because I'm still having regular periods that it's the fluctuations and not a lack of oestrogen now causing these issues? My oestrogen is not low any more. Maybe this will improve over time? I asked about the BCP to prevent ovulation completely and level things out and he refused point blank to prescribe it because I'm 40.

I really don't know what to do now. I woke this morning at 4.15am and had four huge sweats/flushes one after the other, I've been wide awake since then. Felt so dreadful I couldn't take my son to school and had to get DH to do it. I'm on Day 11 now and usually ovulate around now so maybe that's relevant.

I will go to see this other gynae anyway and see what she says.

I'm trying SO hard to stay positive and carry on but I can't see any light at the end of this tunnel at the moment and it's devastating.
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MIS71MUM

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Re: Please please help me! Updated
« Reply #34 on: October 08, 2016, 11:59:45 AM »

Hi
If your oestrogen levels are now quite good and you still have regular periods, and you are approaching mid cycle, maybe you oestrogen levels are temporarily too high. In addition, if your progesterone levels are also low right now when they should be high, this could be causing the feelings you are having.

I'd definitely get a 2nd opinion? I know how you are feeling as I have been there myself. Sometimes too much oestrogen is as bad as not enough, different feelings but both unpleasant.

I too, have suggested the pill qlaria and zoely, but was flatly refused - I'm 45! My next step is the mirena with a patch.

There's a lot mentioned about needing oestrogen but I really believe it's about a balance of all oestrogen, progesterone and testosterone. Good luck xx
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flufferama

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Re: Please please help me! Updated
« Reply #35 on: October 08, 2016, 12:03:10 PM »

Thank you so much Mis71mum. I wrote another post before I saw your reply! I hope you're doing OK yourself?
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GypsyRoseLee

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Re: Please please help me! Updated
« Reply #36 on: October 08, 2016, 06:23:02 PM »

Hello

I had to post because you sound exactly how I was a while ago.

I have always suffered with PMS, and had awful PND after my first baby was born. Just felt totally hopeless and despairing, and terribly anxious all the time. Luckily, SSRIs did help me, though. Eventually I made a full recovery and was fine for years.

Then about 4 years ago, I started to feel odd. Mid cycle I would feel totally stoned and dreamy. But then my PMS would kick in, much earlier now, immediately after ovulation and I would feel very flat and hopeless right through until my period finished. I was only getting about 10 normal days a month.

Then suddenly my periods started getting closer together (went from 28 day, to 24/25) and they were so much lighter, and a bit stop/start. Just like your's I think?

And that was when the awful low moods started coupled with intense anxiety. Just the same as you, it was just the same as how PND had made me feel, but this was more intense. I also started having insomnia (first time in my life) and waking too early at about 4am, filled with dread.

I thought I was losing my mind, it was so frightening. But then suddenly the awfulness would lift, and I would feel almost normal for a few days. But it was a constant rolletcoaster and I never knew how I was going to feel, from one day to the next.

All my bloods came back 'within normal range' for a woman in her early 40s. But like you, other women in my family had gone through the Menopause in their late 30s.

My GP agreed to start me on HRT, a 50mg patch with separate Utrogestan. But to be honest it didn't make much difference. Still getting normal days/weeks but then the awful lows and anxiety too. So I tried the BCP to try and shut down my cycle totally, but I reacted badly to the synthetic progesterone in it and it made me feel suicidal.

So I went back to HRT. Then suddenly at the start of this year, my symptoms got much worse. I thought I was going mad. The depression was so bad, and I just felt filled with despair. The anxiety was so extreme that I became terrified to be on my own. I ended up being signed off work, I thought I was having a breakdown.

Then I went to see Prof Studd. Initially he started me on 3 pumps of oestrogel with separate Utro. It helped a bit, but not enough. So he increased me to 4 pumps (he said that 3-4 pumps is necessary to combat hormonal depression and anxiety) plus testim gel, and within 24 hours I felt a difference. For 10 days I felt like the old me again. Calm, optimistic and outgoing. Then my period arrived and it all came crashing down again.

In desperation I saw my GP who suggested I added a mild SSRI to my regime. So I started on Sertraline, and within a day started to feel a difference.

That was 4 months ago, and I am in such a better place than I was at the start of the year when suddenly everything crashed down (like you this last month?). I still have a few bad days, but I cope better with them because for the rest of the time I feel so much better. I do notice that I feel more anxious mid cycle for 2-3 days, and again just before my period.

Last month I had a a nasty patch when I tried to syncronise taking the Utrogestan at the same time my own progesterone was rising in the week prior to my period. I felt dreadful again, I came home early from work and just sobbed hysterically. I panicked and saw a GP (a different one) who thankfully had an interest in perimenopause and she assured me that I was just reacting to too much progesterone (my own + Utro).

She advised me to try taking the Utro only every 3 months, and that because I still have regular periods (even though they're so light now) I am still producing enough of my own progesterone to protect my womb lining.

So, sorry for the essay but I wanted you to know that you are not alone, and I recognise everything you describe. But also wanted to reassure you that you WILL get over this. I strongly suspect that you just need much higher doses of oestrogen (a 50mg did nothing for me either). Prof Studd did my bloods and my oestrogen level was 703 (about 5 days before my period was due) and that was with using 4 pumps. So, it wasn't 'high' at all, he told me so. He said he has women with levels well over 1000! He also said that some women just need much more oestrogen than is considered 'average' and that I was one of them.

Now, I don't know if it was upping to 4 pumps which 'cured' me? Or whether it was starting Sertraline? Because I started both within 2 weeks of each other, I can't tell. But my new knowledgeable GP thinks it's a combination of the two.

So, as of now, I feel 95% back to my old self. I'm back to waking about 7am. I am back at work and enjoying it. I feel outgoing and positive again. My period is due tomorrow, and I can 'tell' because my heart rate is slightly faster, am getting a few palpitations and I feel a tiny bit on edge. But that's all, and it's nothing to how I have felt.

There have been times these last 8 months where I genuinely thought I couldn't carry on and I had some very black thoughts which terrified me.

I hope you get the help you need, and I hope my story gives you some hope, because I have been exactly where you are now.
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flufferama

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Re: Please please help me! Updated
« Reply #37 on: October 08, 2016, 06:46:30 PM »

Gypsy thank you SO much for that, I'm so sorry you went through all this too. Your experience is so like mine.  :'(

Which BCP did you try and was it back to back (no withdrawal?) Had you had issues with BCP before? It seems such a risky thing for me to try but I'm truly desperate at the moment.

I'm not in the UK so to travel to Prof Studd would cost me huge money - I'll find it if I need to, you know how desperate it feels - and also I doubt I'd get to see him this side of Christmas?

I was given Sertraline when I had PND and I lasted five days on it before becoming suicidal. I was immediately switched to Escitalopram and persisted through hell with that for six weeks until I could take no more and begged to be admitted to a psych hospital. The psych told me there I was too activated by SSRIs and while leaving me on it (because you can't just stop taking it) he had to add an antipsychotic to bring me down off the cliff. I ended up in the hospital for 6 weeks and remained on both meds for two years. Weaned off them slowly and was absolutely fine (until the severe PMS hit, which was sorted with oestrogen for 7-10 days)

So I know in my heart that if I need to go down the antidepressant route it will involve a stay in hospital and/or serious mood stabilisers which I am reluctant to take, I was like a zombie for two years. If that's what I need then I'll do it but it's the absolute last resort for me.
I so wish I could take an antid and feel better, it would solve so much of my problems.

I'm really glad you're back to yourself but I am so sorry you went through all that.

Maybe when I get to see the endocrinologist I will take a print our of Prof Studd's regime with me and see if he's open to trying it.
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GypsyRoseLee

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Re: Please please help me! Updated
« Reply #38 on: October 08, 2016, 07:20:33 PM »

I really feel for you so much. No one can understand how dreadful and desperate it can make you feel, unless you have been there. It is evil.

To answer you, I firstly tried Microgynon back to back, and had constant spotting and still getting bouts of low mood and anxiety.

So I switched to Marvelon and felt fantastic for 3 weeks, but then I inadvertently didn't take it for just 4 days (forgot to pack it for a weekend away) and my mood just plummeted. I felt so dreadful, just awful. I started taking it again but my mood didn't improve, even after being back on it for over a week. I couldn't stand it anymore, so stopped taking it.

Looking back I now know I crashed due to the sudden progesterone withdrawal. Last month I felt horrible on the Utro, then felt 10 times worse 4 days after stopping it when you're hit with the withdrawal crash, too.

For some women, progesterone can be pure poison.

I really, really hope you get some good input from your endocrinogist. I do know that in the most severe cases of PMDD you can have Zolodex injections to totally shut down your own cycle. Then, you won't have your own fluctuations disrupting your HRT.

I do know Prof Studd is an.advocate of a hysterectomy with ovary removal as the only sure fire way to 'cure' this. Seems drastic, but I would have jumped at the chance if it would have stopped the awful feelings of dread and despair.
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flufferama

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Re: Please please help me! Updated
« Reply #39 on: October 08, 2016, 07:30:31 PM »

Oh thank you GRL. I'm trying to figure out which pill to ask for, possibly something more estrogenic. I can only try it. If you have any ideas on which one to ask for PLEASE let me know.

I get a few decent weeks (by decent I mean anything better than right now) I will be able to make it to the endocrinologist appointment without having lost my marbles completely. My last visit to the gynae was one long crying spell, I don't think I said half of what I needed to say because I couldn't get the words out.

My sister had Zoladex injections in the past, she had endometriosis and cysts. She went though absolute hell, and that was without the psychological problems I have! She got all the nasty physical issues and escaped the crazy. I have zero physical issues and all the head madness.

Now if only I could find a gynae who would give me a hysterectomy.....
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