HRT-2

I have been very public about my journey with menopause and HRT. I wanted the conversation opened up for other women like me in their 40’s who had for years been suffering with symptoms but had been continually dismissed by our doctors as being far too young to be in the menopause. Looking back now I can see that I have had menopausal symptoms since my mid thirties, which is shocking really. I had no clue what those symptoms were or that they could be remotely related to the menopause. After all as I far as I was concerned I was still fertile, I was having regular periods. When tested my hormone levels always came back at normal levels until a test in 2015 showed that I had abnormally low LH – Luetenizing Hormone, the hormone needed for releasing eggs from the ovaries. For more information use this link. It makes sense that my LH was out of whack as this was the year my pituitary gland was messed up, I started lactating and was the very start of my CSF Leak. It could be that I was in a temporary state of ovarian failure or it could have been a sign that my ovaries had stopped working for quite some time. I was 42 years old when the results of this test came back and despite all the symptoms I was reporting menopause was laughed at every time I mentioned it. There is a very real need to get this into the conversation so women don’t have to go through what I have been through.

Although I have been vocal about the fact I was in menopause / peri menopausal – I’m not officially in the menopause until I have been without a period for a year which will be December 7th 2020, yay!

I never expected to be criticised or given incorrect information by another female for choosing to alleviate my horrendous menopause symptoms by using HRT. I know I am incredibly lucky that I have the choice of HRT, I know my mum hasn’t had that choice being put into a surgically induced menopause in 2018 when her doctors discovered she had ovarian cancer, another 2 acquaintances have breast cancers so can’t have HRT as the hormones would fuel the tumour growths both have been placed into the menopause due to this. I also know HRT is a personal choice and I am certainly not advocating that everyone should be taking it. What I am advocating is that women we at least talk about it and arm ourselves with up to date information and not repeat absolute rubbish that was disproved years ago but led to thousands of women being unable to access HRT, with some committing suicide the fall out from their symptoms were so great. Also as women it is extremely important that we understand that no two women’s menopause are the same. We need to stop behaving like menopause is an identical experience for all women,  as for those of us who are having a pretty shitty time to be told in effect to get on with it, HRT free when the other person has barely noticed their symptoms, is a massive slap in the face and negates our experience and quietens our voices. Well except mine as usual.

We have the same issues with menstruation, those of you lucky enough never to have passed out / vomited due to period pain have no place telling women who have to just suck it up, take some paracetamol and get on with it. Every month my insides would feel like like they were on fire, sometimes this would happen for up to 7 days before hand. I was never a heavy bleeder, but the cramps were horrendous. The pain would be so bad that for the first two days of my period I would feel so sick I could only drink sugary tea or coffee. That would be my food source, because if I ate that meant I would throw up and I couldn’t work and throw up. I would have a band of pain that ran from my sternum ( breast bone) all the way around my back down to my mid thighs. My buttocks would ache and I would feel like someone was stabbing me in the vagina with a knife. The only time I have had a pain free period was my very first period at age 11 and when I was on a PCA ( patient controlled anaesthesia) morphine pump after major abdominal surgery. For some reason surgery would always make me have a period even if I had only just finished one and due to having heparin injections it would end up a blood bath. Hospitals are really shit ( or they used to be) at providing sanitary towels, which is fine if you have family nearby who can go buy you some but when you are an hour away from home and you have to beg the staff for sanitary protection it is a bit fucking much. Anyway I digress.

I always thought the menopause for me would be something to rejoice in, it would mean no more periods, no more feeling awful for up to two weeks a month. No more pain levels off the chart and no more uncontrollable rage. I also used to suffer with horrendous pre – menstrual rage. I actually went to the doctors about it once, I explained to the doctor that I had in one of my rages gone to stab my husband with a kitchen knife. Managing to stop myself before I plunged the knife in his back. I have no idea what his crime was but the rage was overwhelming and it scared me. I was met with laughter…..I had just confessed to almost plunging a knife into my husbands back and it was greeted with laughter. I was told to take some evening primrose oil patted on the head and sent on my way. To be fair all my appointments regarding menstruation have ended badly. As a teenager I was repeatedly told that when I had a baby my period pains would get better. When I would pipe up that I didn’t want children I would be patted on the head and told I would change my mind. Despite missing school for at least a day most months I couldn’t get anyone to take my pain levels seriously. With the doctor laughing at me when I was terrified at what I may do next, I just never really bothered to speak to them again about my issues what was the point? Time after time I had been dismissed and made to feel like I was wasting their time.

So when I started raising the issue of menopause with my doctors and started being being dismissed again due to my age – I was in my early 40’s obviously due to EDS I looked a lot younger, well at least 10 years. Medical professionals were still asking me at this point if I had plans for starting a family and would be quite taken aback when I said how old I was. I stopped trying to bring it up after 2 years of constant dismissals, what was the point, the message I was receiving was loud and clear, as a woman I was just expected to get on with it. I started taking herbal supplements red clover, sage, black cohosh, menopause supplements. Nothing really helped. In fact when I stopped my contraceptive pill last December I fully expected to have a period with in 4 weeks and was in shock when it didnt happen. I had always come on within 7 days of stopping the pill before but nothing at all happened this time. Looking back now I couldn’t have chosen a worse time to stop it as without the progesterone the relatively mild menopause symptoms ( other than the crippling anxiety ) hit me full force. I spent most of Christmas getting changed as I had soaked through my clothes with my hot flushes. When I say hot flushes it wasn’t like 4 a day, 4 a day I could live with. This was one hot flush would start to settle and another would start. My face would be beetroot and running with sweat, my hair was constantly plastered to my scalp, my glasses would steam up on my face and my clothes could be wrung out down to my knickers due to the sweating. Hot flush didn’t even remotely describe what I was going through had it been just a little hot flush, as some one tried to tell me a few days ago I would have loved it. 

I was permanently terrified that either a) I would stink of body odour or b) people would be able to see the sweat marks on my clothing. I had the constant feeling of never being clean, as soon as I exited the shower a hot flush would start and that would last several hours. It wasn’t one hot flush but a series of hot flushes that would make it pretty much impossible for me to get dressed as my skin would be damp from sweat. I certainly couldn’t wear make up or put on facial moisturiser as it would just run off my face with the beads of sweat. After having years of barely sweating I was now, well and truly a sweaty Betty. It didn’t matter what I cut from my diet, alcohol, dairy, caffeine the hot flushes didn’t stop. I know that alcohol and dairy can make mine worse but cutting them out doesn’t stop them. More times than I can count I have had to leave a conversation with a friend and go and stand outside in the freezing cold just to stop the flushes. You can’t really do that naked after a shower!

My moods were all over the place, I could never actually feel happy anymore. I had tried an increase in my antidepressants but that just made me constipated. I had this ball of anxiety in my chest that suddenly arrived at the end of March 2018. I had a bad fall in the snow in my back garden and had put my anxiety down to that and the fact I had suffered a number of bereavements one after another. If someone asked me what I was anxious about I couldn’t tell them, it wasn’t that I didn’t know but how do you explain to someone that you are terrified of everything, I mean everything for no apparent reason. My fear / anxiety wasn’t rational. I tried hard using CBT, the doctors offered me apps for my phone and told me to contact Cruse the bereavement charity but I knew the anxiety wasn’t just to do with the losses. How does someone suddenly become terrified of their own shadow. I was hyper-vigilant in the extreme, I demanded that Jay lock the front door every time he left the house when I was alone. I was terrified of being alone but I was also terrified of being in the outside world.

When we got Dembe I started having the front door locked all the time. Now where I live is very quiet, most people don’t have the door locked if they are in the house. Crime does happen but the levels are very low. However I convinced myself that someone was going to break in and steal Dembe from me. Now some may say this was due to losing Frankie and Mollie within 7 days of each other and I am sure some of it was. But I had never had any fears about them being stolen and we had lost Travis our first Weimaraner in tragic circumstances. I spent the nights lying awake listening in case someone was trying to get into out back garden to break in and steal Dembe overnight. This is the first time I have ever admitted one of the irrational things I was terrified of, every aspect of every day was ruled by fear. It wasn’t just a case of being a little bit anxious this was all consuming. I spent the first 6 months terrified that I would kill Dembe somehow, not deliberately but I would step on him, sit on him, I would drop one of my tablets and he would find it and eat it basically he would get hurt in my care. Everything felt out of my control and I didn’t feel like me anymore. I didn’t even know who I was because there was nothing at all left of me other than anger and anxiety. I was left feeling like an impostor trying to fake my way through every day.

So you can imagine my anger when someone tried to tell me that I shouldn’t use HRT because it causes cancer and I should just put up with the hot flushes and mood swings. I had tried at this point for three years using a variety of expensive (and cheap) herbs / supplements, dietary changes, light exercise, weight loss to improve my symptoms. Nothing was working and now I was having three migraines a week.

I started getting monthly migraines probably around 5 years ago, as at that point I was on a contraceptive pill that stopped my periods completely or was it the fact that my ovaries were no longer working as 5 years ago would have been 2015, I had no clue that they maybe following a monthly cycle. I tracked them on and off and knew not to book anything social or appointment wise ( if at all possible ) in the window of 18th of the month through to the 22nd of the month as I would wake up with a migraine of varying severity. When I stopped my contraceptive pill in December 2019 the first thing that happened was that my migraines grew in severity, in March I ended up with my memory being wiped for 48 hours following a migraine attack and that wasn’t the only time that happened. I saw a doctor at my gp practice who said she would check with the local hospital and see about putting me on sumatriptan and if they wanted to see me as my migraines were now mimicking the symptoms of a TIA ( mini stroke).

Then Covid hit full force and the lock-down started. So I never heard anything back. My migraines continued then in May they started happening weekly, then twice a week and then three times a week. The longer I went without the progesterone the contraceptive pill had given me the worse they were getting. I was eventually given sumatriptan which was a miracle drug in the fact that it halted the migraines in their tracks but they left me drowsy and the migraines still had a two day recovery time. I was now feeling like I was just existing, I wasn’t living. I couldn’t make any plans because I didnt know when a migraine would strike. The only saving grace was lock- down as we couldn’t go anywhere or do anything anyway.

We had been supposed to go away for three days at the end of July and in June hubby turned to me and said well there is no way that we could have gone away with you the way you are. He didn’t mean it nastily he was 100% accurate. There was no point travelling 4 hours for me to experience a migraine in a different city. What would be the point in that? It still took me a further 6 weeks to build up the courage to ask my gp to be put on HRT.

My mood had plummeted I was actually contemplating suicide on the worst days because I couldn’t see the point if this was now going to be my life until the end of my days. I couldn’t do the things that brought me joy because I was either having a migraine or recovering from one. When I did manage to do some sewing or embroidery I felt nothing, where as previously I had always really loved the challenge. Even embroidery or sewing would have me in a panic attack something I have always loved. I was terrified I would get it wrong, I would break the machine, I would fail. The worse things got the lower my mood sank. 

By the time we had the car accident I had put the letter in to my gp. Whilst getting over the initial shock of the accident I did a bit of research about HRT and migraines and found that with some people HRT stops migraines in others it reduces their frequency and in a very small percentage it makes it worse. By this time I didn’t feel like I had anything to lose. I had joined The menopause support network on Facebook a small private group and although I wasn’t incredibly active on it I read a lot of the posts, comments and made my way through the files section. There I found two papers produced by menopause experts about migraines and the menopause as I knew that some doctors may believe that it was contraindicated as I get migraines with auras. I printed those off and then sent them onto my gp, who had contacted me to say she had booked me in for a telephone appointment for about two weeks time.

I had a whole host of other menopause symptoms going on as well, which I could go on and on about but wont. One of the worst was the dry nether regions that led to the skin cracking and bleeding. It was embarrassing and incredibly painful and obviously not something I wanted to shout from the roof tops. I tried all sorts of lotions and potions to stop the dryness but nothing worked. I would have a few good days followed by a week or more of awful days where sitting would just burn, so sitting at the sewing machine / embroidery machine was incredibly painful. What I have written about is literally the tip of the iceberg so you can see how appealing a few little mood swings and hot flushes would have been to me compared to what I have gone through the last three years.

I started HRT 16 days ago, I haven’t had a migraine since the second dose of HRT. I have started losing weight instead of constantly gaining from the hypoglycemia caused by the migraines making me demolish mountains of sugary food and what remaining hormones I had left causing me to store everything as fat. The acne that I suddenly started getting over the last few years is subsiding – after not having acne through puberty to suddenly be dealing with bad skin in my 40’s has been a tremendous knock to my self confidence. I was always known as having beautiful skin, my chin was just covered in spots and painful cystic acne. I feel calmer, I finally am starting to feel happy again. The anxiety that was strangling the life out of me has lifted. I feel like I can breathe again.

The fact that I am no longer constantly waiting for the next migraine to hit is huge. Jay said on day 3 of HRT he could see what a difference it was already making to me. He said it was like having the old me back. I could already feel the constant anxiety lifting from my chest.

I haven’t written this to appease the person that tried to tell me that HRT  is carcinogenic (which made me laugh considering they eat red meat and have smoked for years) , they probably won’t even read this. I know that I have a slightly increased risk of breast cancer due to starting HRT. I will be checking my breasts on a regular basis and speaking to my gp if I notice any changes. I wasn’t writing this as an apology to the same person that told me as soon as I stop taking HRT all my symptoms will come back which is actually incorrect, studies have shown if you gradually stop HRT symptoms won’t return or are less likely to. They are more likely to return if you stop HRT and go cold turkey. 

I am writing this for me, HRT is MY CHOICE no one else’s. I certainly don’t think it is right for everyone but I can’t sit by and let women be scared off from it by someone who hasn’t done the amount of research I have looking at the pros and cons and how they effect me. Our family doesn’t have the BRCA gene, I don’t know anyone in the family who has had or died from breast cancer, my mum is in remission from a rare non hereditary ovarian cancer. All this was discussed in great depth with my gp, who told me had I not provided her with the fact sheets on Migraines and HRT she would never have prescribed it for me. HRT is not handed out like sweeties it is harder to get than an antidepressant. I am also writing this to ask others not to spread disinformation, not to negate someone else’s experience of menopause or menstruation because yours wasn’t like that.

Everyone must make their own decisions based on the best information available. I can tell you for the last three years I haven’t been living, I have barely been existing and if HRT brings me back some quality of life, a life that is already hindered by disability then so be it.

I hate 2020

I hate 2020 with a passion not just for Covid-19 and not being able to see anyone but I also hate it because it has been a year of non stop health problems. It is driving me insane and I am starting to feel that “normal people” / “well people” or even people that don’t know me that well are thinking that I am either a) exaggerating the impact on me or b) I’m attention seeking. I rarely say much on social media about my health due to this. I am probably more honest on Instagram than I am anywhere. But a few times i have mentioned health issues on my own account on Facebook and now I am left doubting myself, worrying that people will think awful things about me. Believe me if I wanted attention there are a million and one other ways I could get it, being sick wouldn’t be the one I would use!

So this year I am struggling with Migraines, Menopause ( I am just 4 months away from officially being in it although technically I could have been in it at any point in the last 5 years, with the pill stopping my period I can only properly count from last December), bowel adhesion’s, ptosis and now my absolute favourite my CSF leak is back. I’ve had two good, well reasonable years with minimal symptoms. My symptoms when they have shown up have been in the evening with a dull headache and light sensitivity. Suddenly out of the blue last Thursday, my head started hurting and when you have had a spinal fluid leak you know that headache there is no confusion, the pain is like nothing else.

To describe a CSF leak headache is difficult, purely because there is really nothing else in the world that feels like it other than a post lumbar puncture headache or meningitis. I am extremely lucky at the moment that it is mild, strong enough to have me lying flat but not hugging the toilet bowl waiting for death. I was on my embroidery machine when I lent forward as I moved back my brain felt like it had been slammed between two bricks . Then my eyes were struggling to cope with the LED lights on the machine. I finished up as quickly as I could and then lay down on the sofa. Slowly over the space of an hour the pain eased. Although that was a good thing, it also chilled me to the bone as only a CSF leak headache eases so quickly on lying down. So my worst fears had been confirmed.

When Jay got home from work I spoke to him about it. He replied with “well don’t panic just yet you get days where it plays up more than ever”. Whilst he was right , this was different, this was stronger than it has been before. I could hardly blame him for trying to be optimistic maybe I would have been had I not already suffered two migraines that week and forgotten to write a blog post. It hadn’t been a good week and now it was getting worse. I replied that yes he was probably right and maybe a good nights sleep would help. I really hoped that it would be but I knew in my heart that it wouldn’t.

On waking up on Friday morning, I didn’t get the electric shock like feeling like I would back in 2016 when it was at it worst. I managed several hours upright before the pain started. I am afraid I pushed it and stayed up longer than I should have done. I did exactly the same on Saturday, staying upright and not resting like I should have done. I don’t know why I did it. Probably I was in denial and I was determined I wasn’t going to let a “little” thing like a leak get the better of me. There were things I wanted to do, I refused to go back to the dark place I was in, during 2016. 

However health problems don’t work that way, when things are bad you can’t pretend they aren’t happening. There is no distracting yourself from the pain when you have a CSF leak as the longer you try to ignore it the worse it gets and it wont stop until you lie down. If you push it too far eve lying down won’t stop it. From Friday I had increased my salt intake upping my salt tablets back to 10 a day, I had also increased my caffeine intake. Both caffeine and salt increase CSF production.

With the Menopause involved this time increasing caffeine has the added bonus of triggering hot flushes. The more caffeine I consume the worse the hot flushes are getting. Which is just fucking fantastic as caffeine is the only thing that helps quite quickly. So I spend the whole time stripping off due to getting overheated and then no sooner has the flush started I am then freezing cold. Hormones have a lot to answer for.

By Sunday I had completely blown it, my head felt like it was in a vice my eyeballs felt like they had been set on fire every time I looked at my phone, used my laptop or watched the TV. I ended up spending all day lying down either in bed or on the sofa. But as like in 2016 and 2018 ( my first re-occurrence of the leak), my back due to EDS wouldn’t let me do more than 12 hours flat. I felt so down about the pain being so bad and I really felt like maybe I had been an idiot fighting against it for three days . 

Thankfully 24 hours of lying flat has got it to a better place but I am still having to lie down much more than I want to. I managed 4 hours upright on Monday and 3 hours on Tuesday before lying down.  I was much more careful on Tuesday ( today) as dog training is re-starting . With it being held in the evening which is my worst time for the head pain, I am having to rest a lot to ensure that I don’t end up having to battle through the pain whilst there. 

To add a little variety into the mix at 6.50am I woke up in agony with bowel adhesion pain. I keep getting bouts of it out of no where. I ended up having to wake Jay up so he could get me a drink and a hot water bottle as I couldn’t move without making the pain worse. I took some Buscopan, Oramorph and thought there would be no way I would get back to sleep and then the next thing I knew it was 9am and Dembe was snuggled up beside me. I can’t work out what the hell is going on with this year. It is exhausting me with all the plot twists. If my life was a TV drama most people would be complaining it was unbelievable, no one is that unlucky….I’ve also lost my hospital consultant as the health authority he works for has decided that he is not allowed to see patients outside his catchment area. The hospital I used to go to before him, has no PoTs clinic at all as the consultant has retired. So basically if you are outside Plymouth you have been thrown ti the wolves.

But apparently my health needs no consultant input, as I am such an easy patient to manage! I hate 2020!