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Author Topic: feel like I’ll never be well again  (Read 26919 times)

EnglishRose

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feel like I’ll never be well again
« on: November 12, 2018, 09:23:28 PM »

I'm so low again

I haven't left my bed during the day for a month and on “good” days I will go down for dinner and watch tv with me partner whose been on holiday for 2 weeks.
Last week I walked the dogs twice and started to get back into work a little bit,

6 weeks ago I started with unusual and concerning muscle twitches to my nether regions.
I immediately jumped onto google and for the life of me couldn't escape the diagnosis of a rare nerve disorder which involved the pundendal nerve which controls the vagina clitoris anus pelvis.
My anxiety sky rocketed and my mental and physical health deteriorated to where I am now. I've opted out of life. My puppy bounces upstairs to see me and I shut the door bc I can't show affection I'm so low.

My current symptoms are restless legs and pelvis/lower back. So it comes on and I'm kicking the bedsheets and writhing around in discomfort then it goes as quick as it came and I get hyper sensitive skin to my spine lower back and legs...it doesn't burn or tingle I just shiver and shudder if clothes brush against those areas
My lower back hurts probably bc I've been lead on it in bed all day.
I get stabbing pains inside and outside of my vagina nothing mega or terrible but I'm aware of it.
The arousal sensations for now seems to have taken a back seat, I don't know if I'm creating my own symptoms but they feel real. And I massive increase in appetite despite my anxiety depression. My head is not interested in food but my stomach demands to be fed.

I've head hunted a women's Physio Therapist who worked with the pundendal nerve and she performed a pelvic exam and reported that I had no nerve issues nor did I have any pelvic floor issues nor did I hsve vaginal atrophy based on her visual examination.
However I received a letter from her and she's suggesting I had an MRI to check for something rare called Tarlov cycsts as a cause to my symptoms which she agreed seemed physical in nature due to neurological linked symptoms such as sciatica type paresthesia down my leg. This has replaced my relief with more anxiety.
 (I was getting physical and mentally better after the exam)

It doesn't hurt when I have sex during or after. but I have noticed discharge has become watery years ago and little air bubbles escaping during the day.
My cervix started to hurt and bleed upon examination a few years ago.

I've been reducing my Progesterone cyclogest after years of using it without oestrogen and I started oestrogel 5 days ago,
I made a further 100mg reduction 4 days ago to my Progesterone and my symptoms kicked in both physically and emotionally last night.  I feel disconnected to life. I feel so sick and depressed

My head hurts I have palpitations, sleep is my onky escape and that's hit and miss..I can either sleep 14 hours or 4. I can sleep 12 hours and still fall asleep on the sofa at 8pm. Then when hormones change I'm awake early and can't get back to sleep and no napping either.

I feel like my life stopped 6 weeks ago.
yet I know i made love 2 nights ago and was watching tv and laughing...
then last night my physical symptoms flared and my mood dropped at the same time  and have cried hysterically all day. My boobs are huge and I feel like I'm due my period but I also reduced Progesterone 100mg Which always causes terrible pms.

Are my physical symptoms linked to hormonal fluctuations. .?
Can pain to the vag be caused by lack of oestrogen ?
I'm so exhausted searching for reasons bc I need to know this will pass one day,,,I feel trapped inside my own miserable head and body,
I know logically it's hormones but my emotions and anxiety tell me other worst case scenario stories

I've increased my Oestrogen today from 1 pump to 2 pumps. Feel like absolutel death warmed up


« Last Edit: November 12, 2018, 11:20:52 PM by Roseenglish »
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jaypo

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Re: feel like I’ll never be well again
« Reply #1 on: November 13, 2018, 08:28:10 AM »

You poor girl, I kind of know how you're feeling,every little twitch your body makes,every ache & pain is something horrendous,yet years ago we all would have just shrugged it off & ignored it, I wish I could heed my own advice as I know from all the lovely ladies on here that 9 times out of 10 it's our brain playing an nasty trick on us.unfortunately lying in bed with our brain idle is not good,too much time to think of negative thoughts but believe me, I know how hard it is to swing your feet onto the floor & get going.
You're right,your back ache IS probably due to lying in bed,your muscles not being used,your back has so many nerves running from it & can cause aches pains & twitches in the most random places.
Lately I've been trying to find things in my area to do but as yet not found much,I've really no friends here & literally have nobody to talk to, I moved to Wiltshire from Aberdeen a few years ago & because we're so rural & we run a business from home I've never met anyone & we all need interaction,think it's my main problem.
You really should try & see someone,lady go?or a specialist in all things menopause?
I hope you feel better soon & know that you're not alone
Hugs xx
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EnglishRose

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Re: feel like I’ll never be well again
« Reply #2 on: November 13, 2018, 10:38:04 AM »

You poor girl, I kind of know how you're feeling,every little twitch your body makes,every ache & pain is something horrendous,yet years ago we all would have just shrugged it off & ignored it, I wish I could heed my own advice as I know from all the lovely ladies on here that 9 times out of 10 it's our brain playing an nasty trick on us.unfortunately lying in bed with our brain idle is not good,too much time to think of negative thoughts but believe me, I know how hard it is to swing your feet onto the floor & get going.
You're right,your back ache IS probably due to lying in bed,your muscles not being used,your back has so many nerves running from it & can cause aches pains & twitches in the most random places.
Lately I've been trying to find things in my area to do but as yet not found much,I've really no friends here & literally have nobody to talk to, I moved to Wiltshire from Aberdeen a few years ago & because we're so rural & we run a business from home I've never met anyone & we all need interaction,think it's my main problem.
You really should try & see someone,lady go?or a specialist in all things menopause?
I hope you feel better soon & know that you're not alone
Hugs xx

Hi 👋

I'm not as bad today as I was yesterday. My hormones are all over the place due to starting HRT my period (still waiting) and reducing a different HRT.
I knew when I woke up early and had a scene from a horror movie I'd watched the night before playing over and over in my head, that I wasn't right.

I'm lonely 😔

I never leave the house even before this menopause nightmare kicked in . I work from home have done for almost two decades.
It works for me as long as I'm busy as I love my job. But if I get sick I tend to internalise everything, once you start looking inwards it's a slippery slope.
I do have something going on with my back but I'm living in fear of particular symptoms that's why I don't leave the bed. I've decided if I don't move I am less likely to feel the symptoms.
I'm in a dark place and I've got it into my head unless the symptoms go away I can't go back to living and working.

I know what I need to do. It's doing it... I'm in a bubble of my own making

I've found a therapist who can visit me in my home and waiting for her to get bs k to me,

Thank you for replying ❤️

« Last Edit: November 13, 2018, 10:41:26 AM by Roseenglish »
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Dancing Queen

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Re: feel like I’ll never be well again
« Reply #3 on: November 13, 2018, 11:08:02 AM »

Hi Rosenglish and Jaypo,
I can empathise with the loneliness.  I have worked from home for 18 years and absolutely loved it at first, no commuting hassle, no office bitchiness just me getting on with my job. But from the beginning of this year when peri started kicking me in the teeth I have felt so isolated and feel I need to be with other people during the day and get out of the house. So much so that I am going to resign from the job I have had for 20 years after Christmas for a new start doing who knows what. I just know I will go crazy if I don`t change that part of my life. Crazy to do it, but crazy if I don`t!  :o
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SueLW

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Re: feel like I’ll never be well again
« Reply #4 on: November 13, 2018, 12:25:05 PM »

Of course this is hormones.  The very fact that the first twitches sends you rushing for Dr Google is a screaming sign.  If your hormones were balanced you would just think "ouch" and move on.  You don't have some terrible nerve issue or rare cysts.  You have hormone imbalance.  In large part because your progesterone levels had got so high with nothing to balance them out and now you are bringing those down and yet only using a very tiny amount of oestrogen.  Just introducing oestrogen will wake up receptor cells and often cause you to feel worse before you feel better if you have been starved of that hormone for a long time, as you have because you have been so progesterone loaded.

I'm afraid this is hard, but it will get better.  Once you are on a decent amount of oestrogen gel and your progesterone has fallen back into line you will start to recover.  For now, cells are missing the progesterone overload and also receiving some stimulation from the oestrogen.  A perfect storm for PMS and the crying and misery and solitude seeking you are experiencing.

What did your doctor tell you to do re the gel?  How much are you working up towards? Do you have another blood test booked to monitor your changing levels?  If not, I'd get one booked for 2 months after you started this.  It should be 3 months really, but you are having a hard time and it might help to get some visual confirmation of what's happening sooner.

The first few weeks take strength of mind and body to get through.  You must stop staying in bed though.  That is the number one thing you need to do for yourself now.  Get up every morning at the same time.  Use the alarm if necessary.  Wash, apply your gel, dress and then go downstairs.  Don't go down in your dressing gown or PJ's. I speak from experience here.  If you do that you never feel right for the day and can still be in them at 2pm and you feel a failure.  Getting up, washed and dressed and then down to put the kettle on is an important routine.

Next, you need to take your dogs out at least once a day  :scottie:.  Again, it's to force you outside into fresh air and brighter light which lifts the brain mood.  Don't let someone take that task over.  Get out with them. 

That's it for now.  If you can do those 2 major things each day whilst you go through this transition period you will have achieved good things and you will feel better about yourself.

You can do it!  I've been where you are now re the never getting dressed part.  It's horrible.  But you can force yourself out of that.

 :tulips: :love:
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Dancinggirl

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Re: feel like I’ll never be well again
« Reply #5 on: November 13, 2018, 12:35:00 PM »

Roseenglish - reading throughyour posts, I realise that you are not doing much physical activity and I'm really wondering if doing some appropriate exercise would make a big difference to your general health. I know it is tough to get exercising when you feel so tired and awful but with the right help and support I'm sure it would really help. HRT can only do so much.

If you set yourself a target of going for 2 ten minute walks each day - getting out in the fresh air and focusing on nature - this might help?  I practise a lot of Mindfulness which I find invaluable. My GP suggested a book by Mark Williams adn Dr. Danny Penman ‘Mindfulness' which I found really good.

To get life back on track, I have found if is a range of strategies that will often work - no one thing on its own will sort everything.  Writing down a plan of action could set you on at the right path but don't be ambitious - set very sensible targets.  DG x
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jaypo

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Re: feel like I’ll never be well again
« Reply #6 on: November 13, 2018, 12:43:06 PM »

Hi dancing queen, I do wish that was an option for me but it's not,my husband out seeing customers all day & I do the office stuff, I am lonely & I know that's part of the problem,just like roseenglish,no friends down here at all & the ones in Scotland obviously are getting on with their lives without me,speak occasionally on the phone but it's not the same as meeting up for a coffee etc
Good luck to you & I hope it all goes brilliantly for you after Christmas xx
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EnglishRose

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Re: feel like I’ll never be well again
« Reply #7 on: November 13, 2018, 04:22:04 PM »

Thanks for all the replies.
I'm crying as I read and write this.
I can't believe that just 6 weeks ago I was working selling antique diamond rings and walking my two sausage dogs and now I'm in bed all day crying with my iPad as my only source of reaching out to other people.

I've always been a loner but happy in being so. I enjoy my job so that allowed me the happiness to pass my days. Never been one for girly shopping trips, truth be told I've not had a female friend since I was in my early 20s
My partner was my friend and that worked for me,

My sister is busy she has a business and two grown daughters my mum is mid 70s and struggling with her own demons. Dad told me not to communicate with mum about my problems as she's struggling with her own panic attacks related to end of life fears.

Even if I had a posse of friends sat around me this is very much a solo mission. My hubby struggles and holds me when I'm in mess and will ask me “what can I do.” And I reply;
“Nothing. No one can do anything. This is my fight”

I wear the trousers in the relationship so he finds it hard to be insistent or coming into the bedroom and insisting I get out of bed and come for a drive... but that's what I'd like him to do....but he says I'm head strong... so leaves me to me.

No one can do anything. I just want the horrible physical symptoms to go away...then my confidence would return..I'm living in fear of my own body.

I know I need to get out... but it's easier to hide in bed. It's not like I'm watching tv ...doesn't hold my attention. I'm just sat up in bed on my iPad all day.

I've just had to go out to the chemist and that 40 minutes out had me talking to various people and engaging .and I found myself singing along to a song on the radio...

Got back inside and back in bed.

I'm stuck. I think “this” has been brewing for many years ...my mum and family have always said you spend too much time alone so your problems seem much bigger in your mind than they actually are
Another line from mum was
You need something real to worry about

She's right on both counts, if my partner was diagnosed with cancer or died...I think all of the crap running around my head would vanish.

As for HRT I was told 2 to 3 pumps a day. I started on one just to make sure I didn't have a reaction to it. I've increased to two now.

I agree I need to get my bloods done in 2 months. Had them done in May
Oestrogen <18
Progesterone 20
FSH 70

« Last Edit: November 13, 2018, 04:36:37 PM by Roseenglish »
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jaypo

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Re: feel like I’ll never be well again
« Reply #8 on: November 13, 2018, 04:29:41 PM »

Oh dear,not much any of us can say unfortunately,all so sad but try & take a teeny weeny bit of comfort when I tell you so many of us here have been there,we really have,no end in sight but there is help out there for you my lovely,my husband the same,he can't bear me telling him to go away, I like you tend to take it all on my own shoulders,curl up in a foetal ball & hide,please please seek help
Sending you love and hugs xx
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EnglishRose

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Re: feel like I’ll never be well again
« Reply #9 on: November 13, 2018, 04:41:33 PM »

Oh dear,not much any of us can say unfortunately,all so sad but try & take a teeny weeny bit of comfort when I tell you so many of us here have been there,we really have,no end in sight but there is help out there for you my lovely,my husband the same,he can't bear me telling him to go away, I like you tend to take it all on my own shoulders,curl up in a foetal ball & hide,please please seek help
Sending you love and hugs xx

❤️
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EnglishRose

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Re: feel like I’ll never be well again
« Reply #10 on: November 13, 2018, 04:52:08 PM »

This is screaming hormones to me Roseenglish.  Trouble is it's hard to see things ourselves, we need others to point it out to us

I'm the same, if I start worrying about a symptom it's a very rapid slippery slope to the worst case scenario and I could quite easily shut myself away and not see anyone.  I have learnt through all this meno crap that it's the worst thing to do.  Who's walking your dogs?  I did find walking was my best form of therapy, that and mindfulness/calm breathing exercises, anything to try and stop the negative thoughts.  Very easy to say I know but closing yourself off from the world definitely won't help the negative thoughts, been there, done it and got countless t shirts.

Good you've got a therapist lined up, that's a good start. 

Sending you a big hug x

Thank you x
I know logically what I need to do and had a few days were the symptoms were not so obvious or I decided to push through them anyway,,, I mean it's not like I have to be in an office at a set time ... that's the problem... I'm my own boss, l read stories from ladies struggling with work and all the menopause symptoms and from my perspective I think it's a good thing.. to keep going.. to hsve those distractions... last thing you need in the middle of a menopause meltdown is the option to stay at home..
I know in my heart in a week I'll be posting jokes here and trying to help a few other ladies...
I'm using the Oestrogen now and reducing the progesterone so I'm pinning all my hopes on that.. in 3 months perhaps these symptoms will go and maybe replaced with new ones but that's ok...as long as these go so then I know without doubt they're hormonal. If that makes sense.

You seem like a lovely warm hearted lady,,, just wanted to share that with you,,, you always come over as a caring person. That's a rare trait XX
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EnglishRose

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Re: feel like I’ll never be well again
« Reply #11 on: November 13, 2018, 04:59:36 PM »

Roseenglish - reading throughyour posts, I realise that you are not doing much physical activity and I'm really wondering if doing some appropriate exercise would make a big difference to your general health. I know it is tough to get exercising when you feel so tired and awful but with the right help and support I'm sure it would really help. HRT can only do so much.

If you set yourself a target of going for 2 ten minute walks each day - getting out in the fresh air and focusing on nature - this might help?  I practise a lot of Mindfulness which I find invaluable. My GP suggested a book by Mark Williams adn Dr. Danny Penman ‘Mindfulness' which I found really good.

To get life back on track, I have found if is a range of strategies that will often work - no one thing on its own will sort everything.  Writing down a plan of action could set you on at the right path but don't be ambitious - set very sensible targets.  DG x

I was doing some,  well more than I had been. We got a puppy in June and along with my other dachshund I started long walks... sometimes I'd invite my neighbour .. (new development)
I was walking them when I noticed the symptom that lead me down this path..
I have a photo on my wall of a photo I took of my puppy that day on our walk... it's bitter sweet to look at it as that was the last day I was “me”
Sounds very melodramatic I know,, hormones!

When my partner is back at work I'm aiming to join my dog walker each day...I've paid her for a month in advance so she has a couple of weeks left
I joined her last week on one of my more determined days... xxx
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EnglishRose

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Re: feel like I’ll never be well again
« Reply #12 on: November 13, 2018, 05:23:18 PM »

Of course this is hormones.  The very fact that the first twitches sends you rushing for Dr Google is a screaming sign.  If your hormones were balanced you would just think "ouch" and move on.  You don't have some terrible nerve issue or rare cysts.  You have hormone imbalance.  In large part because your progesterone levels had got so high with nothing to balance them out and now you are bringing those down and yet only using a very tiny amount of oestrogen.  Just introducing oestrogen will wake up receptor cells and often cause you to feel worse before you feel better if you have been starved of that hormone for a long time, as you have because you have been so progesterone loaded.
I
I'm afraid this is hard, but it will get better.  Once you are on a decent amount of oestrogen gel and your progesterone has fallen back into line you will start to recover.  For now, cells are missing the progesterone overload and also receiving some stimulation from the oestrogen.  A perfect storm for PMS and the crying and misery and solitude seeking you are experiencing.

What did your doctor tell you to do re the gel?  How much are you working up towards? Do you have another blood test booked to monitor your changing levels?  If not, I'd get one booked for 2 months after you started this.  It should be 3 months really, but you are having a hard time and it might help to get some visual confirmation of what's happening sooner.

The first few weeks take strength of mind and body to get through.  You must stop staying in bed though.  That is the number one thing you need to do for yourself now.  Get up every morning at the same time.  Use the alarm if necessary.  Wash, apply your gel, dress and then go downstairs.  Don't go down in your dressing gown or PJ's. I speak from experience here.  If you do that you never feel right for the day and can still be in them at 2pm and you feel a failure.  Getting up, washed and dressed and then down to put the kettle on is an important routine.

Next, you need to take your dogs out at least once a day  :scottie:.  Again, it's to force you outside into fresh air and brighter light which lifts the brain mood.  Don't let someone take that task over.  Get out with them. 

That's it for now.  If you can do those 2 major things each day whilst you go through this transition period you will have achieved good things and you will feel better about yourself.

You can do it!  I've been where you are now re the never getting dressed part.  It's horrible.  But you can force yourself out of that.

 :tulips: :love:

Thank you ❤️

I know during peri I would have an odd day were I was hysterical or full of absolute rage.. back then it would be about insomnia..I would convince myself I would never sleep again and be totally convinced
Then my period would come and I'd look back and think
”what the Hell was I thinking.” but it seemed so very real in the storm.
I guess that's what I'm going through now..a Permanent state of PMS... it's like pms x 10 and it doesn't go away.

I've been dealing with peri for a decade, the usual suspects, night sweats, hot flushes, insomnia, anxiety, low mood, lack of motivation, but this usually vanished once my period started.  I had no libido during peri but then that's spiked too and I'm totally confused with a mix of depression anxiety physical symptoms AND times of  increased libido despite the above, it's not like me to have any libido at all... like ever 🙄

You seem very knowledgeable re hormones. I used to believe I was Oestrogen dominant hence me using Progesterone only. I started using an otc cream called Natpro at 400mg. I use Cyclogest now.
I recall going through the loading dose and having acute insomnia rage etc and was told it was Oestrogen fighting to prevent progression from becoming the dominant hormone. So I pushed through getting reassurance from their forums that it was all normal and would calm down once Progesterone became the dominant hormone
It seemed to do the trick after 8 months I was told at that point to slowly reduce the progesterone to 200mg but if Oestrogen symptoms reappears to go back up a touch again
I just decided it was easier to stivk to 500mg and get on,,, I slept well and felt fine although certainly not symptom free. I was educated to believe Oestrogen was the enemy the stimulating hormone that caused rage, cancers anxiety, insomnia, and progesterone was “nature's valium” the calming hormone... it appealed to me..made sense..

Then it all came crashing down all because of a stupid symptom I became obsessed about... I was fine till that day,... even during the 2 weeks of acute anxiety as I researched my symptoms I was still going about my life... then I just took to my bed and haven't got pit of it since but I'm still researching symptoms looking for reasons, causes mother women who had what I have... reassurance...health anxiety Classic

Now I'm trying to reverse what I did all those years ago. And I need to put the iPad away stop googling. It's hard x

I was told try 1 pump then 2 but the label says 2 to 3 pumps.
I've to use Uestrogen micronised progesterone from day 15 (200mg):
I'm on 300mg Cyclogest currently so once down to 200mg I'll stop using it and move over to the micronised pills.
I'm sure when I stop taking the progesterone pills I'll hit an all time low as that's the first time in years I will hsve not used Progesterone at all.
Worrying about that but if the other symptoms that are causing me anxiety improve or go away it will be worth it,
« Last Edit: November 13, 2018, 06:00:42 PM by Roseenglish »
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lemondrop

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Re: feel like I’ll never be well again
« Reply #13 on: November 13, 2018, 07:07:10 PM »

From personal experience , STOP GOOGLING . When I go down the dr google rabbit hole it makes me feel SO much worse . Difficult to do as it is an addiction in itself and the next step is obsession- which will take your focus for normal every day life ( when lack of focus is already an issue ! ) . Yes you feel like shit . But it won't last .

I say all this from my own experience with severe health anxiety .

Lemondrop xxxx
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lemondrop

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Re: feel like I’ll never be well again
« Reply #14 on: November 13, 2018, 07:14:36 PM »

Oh and also ! My mother in law had the same issues with the genital sensations , I remember her telling me that her gp said it was due to menopause, it went away ! I Knowshe had it for a good few weeks  ! It's not really something most people would talk about I guess ? Xxxxxx
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