diaryofthemenopause

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Overdoing it after 6 weeks

After a hysterectomy you have to rely on a lot of people to do the most basic of things for you to begin with. Then there is no heavy work, so your husband/partner takes over as you get used to sitting there watching them wracked with guilt. I was also off work for 6 shift cycles, which meant others had to give up their free time to cover my shifts.

At the 6 week check up you are told that you can go back to work, drive, swim and generally get your life back. You still have to watch the heavy work, but life is yours, go grab it.

Please don’t! Take your life back slowly. There is nothing miraculous that makes you suddenly better at 6 weeks and 3 days. You are still the same as you were at 5 weeks and 6 days. I went back to work. I did a 12 hour day shift followed by 12 hour night shifts. I started cooking and washing up at home, I went shopping and running around various places for things we needed and getting meals sorted for us and the kids. After 4 days of this I’m back in agony. I ache all over and I just cannot get myself together. I’m so exhausted. More than I was during the recovery period. I just suddenly thought that I can stop everyone having to cover for me or do stuff for me, so I went back to my life. I thought I was being a bit more careful than usual, but my job involves sitting for long periods of time in front of a computer. The pressure this put on the healing area was probably made worse because I’m over weight and have a large lump of fat that pushes down when I sit up.

Pete has been doing everything at home, so when I had a hospital appointment and he said “while you are out, can you….”, I said yes to make up for everything that’s been done for me.

I’ve heard the phrase “so you can finish milking it now” at the end of the 6 weeks. Milking it! I wish. Major surgery that wipes you out completely and can only be understood by someone that has been through this. Sadly that isn’t the people at work covering you or your husband/partner and any kids.

On my last night shift the Head of Operations phoned up to speak to me. Normally that means something has been escalated through the roof. This time it was to tell me I was daft for going back to work. His wife has the same operation and 3 months later only just started getting her life back. She was exhausted and struggled. He had thought I’d be back in September and wanted me to take it easy. He asked why the Doctor signed me off as fit to work. The truth is I asked the Doctor to. You are told 6 weeks and it’s almost expected that at that time all the help, support and sympathy you’ve had has now been used up and you are on your own again.

I’m on my 3rd scheduled day off as I work a shift pattern. I am so grateful to have the house to myself. I’ve been trying to put on a smile and force myself to do things to help out again. Today I fell out of bed and on to the sofa. I haven’t even made it to the shower yet. Walking hurts, moving hurts, staying awake is hard. I am just so tired.

The lesson I hope someone else can learn from me is that there is no miraculous event that suddenly happens in your healing at 6 weeks and 1 day. Go back to your life slowly and don’t rush into work, start part time and see how you feel. The same at home. Just do small jobs and see what your body will let you do. Being curled up back on the sofa in pain really isn’t much fun.

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What a difference 6 weeks makes

6 weeks ago I was lying in a hospital bed, tubes draining me and a catheter. I couldn’t get comfortable and trying to move up or down the bed was a major challenge. To sit up to try and eat or lie down to sleep, required muscles I no longer had working. I used my arms to pull myself up the bed. Even when I came home getting up or down was a challenge. I couldn’t even walk up stairs. Trying to get to the toilet was difficult and the pain every time I moved was intense.

Over the last 6 weeks things have been getting easier on a day by day basis. Moving around easily for me has been the longest recovery. I still have problems now. I couldn’t go jogging, partly because I’m seriously fat and unfit, but apart from that I have problems and bruising in my lower abdomen. I did have 2 operations so that will take longer to recover fully.

The biggest change in the last 6 weeks is my attitude to switching off and relaxing. Initially I struggled letting go and having others do things. I was constantly up and down as I felt I needed to be seen doing something. I made myself worse. I did eventually stop and when I did things got better quicker. Also when I did stop I found I switched off. I’m a working Mum. I work a shift pattern night and day. I have a messed up sleeping pattern. On my days off I do constant housework and cook for all of us every day. Everything is around making sure everything is ok for everyone else. In between I’m working out what we need next week and what I will cook next week.

I have sat down and watched films. I’ve let others do stuff for me. Despite recovering from major surgery, I feel more relaxed than I ever have. I’ve seen colours in the sky at different times of the day. At night time when it goes that dark blue, if there are clouds there as well then you get a beautiful striped sky. I’ve watched butterflies in my garden, bees collecting nectar, and listened to the girls and the children talk. I’ve had time. Not trying to do 6 things at the same time. I’ve loved it.

I’m back at work this weekend. I need to find a balance that works for me. It will mean not doing as much as I was or letting things go undone. I need to work to live. One of the reasons I still do a job that shortens your life span (shift work), is because of the time I have at home in return. That’s my favourite part!

Until that lottery win comes through, it’s back to work so that we can feed the kids and have the holidays where we get time together. It’s time to change how things are done and have more time to spend with the family.

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Reacting to a smell

In all hospitals in the UK there are hand sanitisers all over the place. St Peter’s was no different to any other, by the time you get to the wards then they are everywhere as they try to beat MRSA. I’m a clean freak and I hate hospitals, far too many sick people around. This should appeal to me and at first it did.

I don’t really remember much of my first 3 days there before the emergency surgery, as I drifted in and out of consciousness too much. By the time I was settled in my ward, in the boiling heat, the smell started to get to me. It wasn’t just the hand sanitisers, they had wipes that had that smell. By day 4 I was allowed upright to wash. I had taken in a lot of miniature bottles with me of Dove something I use now and again anyway. As soon as I opened it, it was that same smell. I was tied to my bed by drains and I couldn’t get away from it.

Over the next few days my reaction to this smell got worse. I no longer disliked it, I hated it. More and more products were smelling of it. When the catheter was removed and I could go to the bathroom, drains in tow, the soap had the smell. I stopped washing my hands because if the smell was there, I felt sick and couldn’t get away from the smell on my hands. My friend bought me wipes and my own sanitiser, and they had the same smell. By my last night the smell made me physically sick. Some wipes were lying on the window sill next to my bed and the smell got stronger and stronger. I woke up to move them and ended up being sick. This went on all night. Going into the toilet didn’t help as the soap in there has the same smell. I had been told if all was OK I could go home the next day. I started going into a massive panic as I couldn’t stop being sick. I did explain what was causing it and luckily I had no other symptoms.

I’ve been home 5 weeks today and it’s amazing how that smell still affects me. We have Imperial Leather hand wash. It has that smell. It still turns my stomach, I can’t use it to wash my hands and if I feel just slightly dodgy then you can guarantee I’m in for a bad day. I’m going to give it away and just replace it all. I have to get that smell out of my life.

I’ve never had such a bad reaction to a smell before. I get migraines from strong perfume, but that’s different. How can a smell make me physically sick and why? Hopefully as I start getting my life back to normal again, the little annoyances like this one will go. I just hope this smell isn’t anywhere else. I’ve not been out much over the last 6 weeks.

Surely this has to be the strangest of all my menopausal issues so far.

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Now I understand HRT

The menopause is different for everyone. Even sisters will experience massive differences in how it affects them. The two main issues reported by around 80% of women are hot flushes and night sweats.

I figured if I can cope or reduce these, then I can go HRT free. The menopause is a natural thing after all.

From the second my ovaries were removed, I have been unable to control my temperature in a normal way. Initially I was in hospital during a heat wave. No air conditioning and being sat right next to giant windows, which faced the sun most of the day, I was stuck in bed in a pool of sweat all day long, as I had the tubes keeping me in place. I was recorded as having a temperature and on antibiotics and paracetamol to reduce it, so I didn’t really know what was causing this issue.

We have had another heat wave, well a couple, and I get soaking wet doing nothing. I just cannot cool down. Walking up and down stairs is enough for me to feel like I have been thrown in a pool fully dressed. I am lucky in the fact that I haven’t slept through the night for as long as I can remember, so disrupted sleep is normal for me. I can easily be up 4-5 times a night. Last night we had a thunderstorm again so Pete closed the window, and because he can’t stand any noise, he turned off the fan too. I went into a massive panic! In the end he slept downstairs with no playful kitten or fan noise to annoy him, but even with the fan I was constantly covered in sweat.

This morning I got dressed and cleaned out the kittens bowls, this resulted in my skirt, bra and top soaked through. I ended up stripped down and stood in front of the fan for about 30 minutes until it stopped. For me this is a pain in the neck, but if you read symptoms of the menopause, then some women suffer this 4-5 times an hour. Some are lucky to only get this a couple of times a day, but even then sweating through your clothes a couple of times a day is horrendous. I want to shower around 3 times a day now, and mine aren’t hot flushes.

This is more than a slight inconvenience, it affects the whole of your life. It is making me grumpy and irritable, not to mention embarrassed to go out. Sweat patches everywhere are not pretty. I am talking pools of water patches too, there is no way I can hide them. I know that it could be around another 2 months before I know what my menopause will consist of, but I have to hope I’m one of the very few lucky enough to avoid these. Being like this on a hot day is bad enough, but air con and the British weather mean that I can’t get breaks.

I spoke to a friend that couldn’t take HRT due to cancer. She said she didn’t suffer badly from the flushes, but after 5 years they hadn’t even slowed down and they really got to her. She was cleared enough from the cancer to be put on HRT and she just wanted them to stop. She had enough.

The menopause is inevitable. Our average life span now means it’s something we are all going to have to face. For whatever reason, people
in the west have a bad time of it and it severely impacts your life. I still have to work for a living and I work in a male dominated environment. “Women’s problems” are not understood at all. I am a manager and will be stood there with boob sweat stains, and a bright red face dripping with sweat. That should be interesting.

When I started this diary I never fully understood why some women chose to risk their lives with HRT when they have additional complications already. Now I understand. For a natural process, this can be hell on earth and if you are still working and trying to get on with your life then this really doesn’t help and society as a whole is really not helping.

For me, walking down the stairs on a hot day requires a shower and a change of clothes. To have to feel this way a couple of times an hour and all night long is not what I want from a natural process.

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Allow 6 months for recovery

From the beginning of this, I’ve been given very little relevant information on what to expect.  In fact, I’ve been lead to believe that you can recover from a full abdominal hysterectomy quite quickly if you are good.  Sure – you can be up and normal between 4 and 8 weeks.  Generally I do recover quickly from things, but this has completely wiped me out.  I have the additional complication of second major surgery within 2 days of the operation, but even taking that out, every professional I’ve seen since my operation and initial Consultation has told me not to expect too much before 6 months.

When the lumps appeared on my side from the drainage tubes, the nursing staff there told me to allow 6 months to 1 year for everything to settle down.  Yesterday I had a check up appointment, and the Doctor there told me that they allow 6-8 weeks for recovery, but recovery is actually around 6 months due to the severity of the operation and all the internal healing that has to take place.  I was told not to expect to be able to stand up, sit down, move about without being reminded every time I move that I’ve had major surgery.  The second operation has caused trauma sites, which is to be expected as you’ve been opened up and things moved around internally twice.  This could add to my healing time.

The hystersisters site is very good, as the women on there have all experienced whichever operation you have.   The site is split into areas for Total Hysterectomy, Da Vinci Robot Hysterectomy, Partial, Keyhole, etc.  You can ask question from people that have been through what you are going through.  The common one that comes up for Total Abdominal Hysterectomy with Bilateral Salpingo Oophorectomy (TAH and BSO), is “Why am I still feeling pain around 6 months”.  The site has video diaries throughout the first 6 weeks, and although the 6-8 week seems to be universal, they do stipulate on there over and over again that it can take up to a year to fully recover.

I expected too much from myself because I was lead to believe that after 6-8 weeks that’s it – you are normal again.  I think that a lot of the depression that women feel during this time (alongside major operation and severe hormone changes of course), is due to the fact that they aren’t recovering as well as they thought they would.  If I had been told that by the end of 6-8 weeks we expect you to be able to walk around, go swimming, have a bath, drive a car, start being able to exercise again, but for all pain, pulling, internal healing, your insides settling back down and complete recovery, it could take over 6 months, then I wouldn’t have expected so much during the first few weeks.  In the UK we don’t have any follow up appointments either.  From the day we leave the hospital, that’s it – we have no more contact or visits with our Consultant, any questions are directly to whichever GP has an appointment for you to see (with around 2 weeks waiting time for that appointment).

If anyone finds this blog and is about to go through a hysterectomy, or had just had one – then please do not push yourself or expect too much from yourself.  You will be able to lead a normal life within 6-8 weeks (driving, getting out and about), BUT you will not fully recover from your operation in this time, you need to allow yourself up to a year to fully heal, and by around 6 months you should stop being reminded every time you move, that you have had major surgery.  I hope!!!

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Hot Flashes??

Before my operation I was having continual periods. From time to time though I would get hot from doing very little. Usually when I was cleaning up or doing housework. I didn’t really think much of it as I am over weight and very unfit.

I still get them, but now I’m in my rest phase I can’t do anything. I’m wondering if these are my hot flushes starting. My head starts to get very hot and feels like it’s burning, and then it moves down my body. I don’t sweat with it. It can also be stopped instantly by removing a cardigan or flipping back the duvet. Take off one source of warmth and it stops. I’ve spoken to a friend who has started a natural menopause. She is the same age as me. She describes it the same way, her head burns, but she sweats badly with it. She says she looks like she has run a marathon.

I am taking the sage and anti depressants still. Both are suppose to reduce the intensity of these, so I will carry on monitoring them and see if they get any worse. I hope not because all the women I know who are refusing to come off HRT, are staying on it because this and the night sweats are what they find the most unbearable about the menopause.

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How long till I stop feeling pain?

I am 4 weeks post op today.  Every movement I make my stomach pulls.  Standing up from lying down is difficult.  I have lumps on either side where the drains were inserted.  When I stand up from sleeping, it feels like a bag of pebbles drops to the bottom of my stomach.  I read an article today called “6 months and still in pain?”.  Seriously??

I struggle to sit for any length of time, yet I’m due back to work in a couple of weeks and I do 12 hour shifts.  I’m due to go on holiday next month, and I cannot lie on my stomach.  Every evening I balloon up with swelly belly.

The pain I had before the surgery was also there constantly.  It was also far worse pain that I have now.  I think I just expected not to be reminded every second of every day that I had an operation 4 weeks ago.  I had expected (very unrealistically) that I would be pretty much back to normal by around week 4.  He did say between 4 and 6 weeks things should be back to normal.

I have my check up appointment next Monday, so will start a list of questions and then see how I am getting on.  Hopefully at least the healing is going to plan and all of this is normal.  I also have to remember I had 2 operations and not one, so should expect things to take longer.

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Goodbye Anaemia!

Over the last 18 months my periods have been getting worse.  After my whole life not really having them, to suddenly start at 40 is a bit of a shock.  To then have them getting closer and closer together until eventually I was having periods more than I wasn’t, started playing havoc with my system.

I went through test after test and no-one ever found anything wrong with me.  Finally I was sent to a Gynaecologist as things were getting worse and my GP discovered I was now severely anaemic, so something had to be done.

I was put on iron tablets.  Anyone who has been on those, knows the side effects well.  I was on the maximum dosage and it kept by Hb levels up, but that seemed to be all they did.  I was constantly tired, getting out of bed was an effort, doing anything was an effort.  I seemed to just about make it through each day, and then on my days off my body just wasn’t interested in doing anything at all.  I could sleep for England!

I never once doubted that the hysterectomy was the right thing for me to do.  I just wanted rid of the whole lot and nothing was going to make me change my mind or even doubt that.  With complications during the hysterectomy I ended up with 5 units of blood being transfused.  After the second operation to stop the internal bleeding, I felt amazing.  I know that’s a really strange thing to say after a major operation, but I felt better than I had in a long time.  I am now 3 weeks post op and I no longer sleep all the time, I don’t feel exhausted from just walking up the stairs, I don’t struggle and fight to get myself out of bed.  I’m no longer taking the iron tablets, so have no more of the side effects they bring.  I feel normal.  It feels wonderful.  I just wish the bumps, lumps and pain would go so that I can get out there and do something with all this energy I can now feel inside me.

For those who have suffered with bad periods for whatever reason, the prospect of never having to go through that again is the most wonderful feeling in the world!

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