It’s now two years since I first went to my GP with menopause symptoms and started HRT, over a year since I met Haitham Hamoda, now the chairman of the British Menopause Society, and six months since I found a doctor who I felt was on the same page as me.
And yet I’m still standing in the shower in tears most days, turning to face the wall in case Mr 50Sense comes in because I can’t face another kind, understanding conversation.
I’m fed up of them just as I’m fed up of feeling this way. I’m fed up of asking people to be understanding. I’m fed up of putting on a brave face. And yes, some days I’m fed up of fighting to try and change this.
It’s selfish, I know, but I feel it’s time I had a break from feeling this way. However, I’m now starting to think that may never happen on the route I’ve been taking.
Covid hits my HRT plan
Of course, the pandemic is having an impact on this. Like everyone, I’ve been hit by Covid-19. After finally getting a GP to listen to me about my reaction to progesterone, my appointment to have a Mirena coil fitted was cancelled because of lockdown.
Here’s why that matters. If you’re on HRT and still have a womb, you need to take progesterone to cut the risk of endometrial cancer. But some women, like me, are sensitive to progesterone and so need to find the gentlest form of taking it, which is usually a Mirena coil that directs the progesterone exactly where it’s needed. (It’s a condition known as PMDD, here’s how it affects me.)
Without a coil, I have to take progesterone in a way that floods my entire body if I wish to take HRT and that isn’t good news. Earlier this year, letting progesterone run loose led to me breaking down and feeling that I wanted to jump in front of my train home. (A huge thank you to the wonderful women who helped me through this. You are true kindness and humanity.)
Consequently, when I heard my coil fitting was cancelled, I was straight on the phone to the GP asking for an alternative HRT.
And anti-depressants.
Mixed messages about HRT
As I said the words, I felt I was letting the side down. I’d spent two years reading about how HRT is THE ANSWER and how it transformed women’s lives within seconds. How doctors should stop prescribing anti-depressants for menopause. And yet here I was, willingly asking for “the enemy”.
But the truth is: there is no one answer to menopause symptoms. Since talking about my progesterone sensitivity, I’ve had messages from other women who found HRT left them feeling worse, too. I’ve also had messages saying I just haven’t found the right HRT yet and to keep trying. And you can add to that the messages of the anti-HRT group, who seem to think I could be the poster girl for them.
It’s a mess, to be honest. So many messages at a time when women need clarity and good, solid advice from impartial sources.
Down comes the mist
It’s been a little more than two months since I started taking the new combination (Evorel Conti patches and 50mg Sertraline) and once again the clouds are gathering. This could be a variety of things – changes in my worklife, ongoing trouble with the neighbours, worries about my mam’s health, the pandemic – but the timing has me thinking it’s progesterone again.
I’ve been waking at night worrying about mistakes at work, the vast majority of them imaginary, running over hurtful comments made to me and worrying if they’re justified, worrying if my husband still loves me, worrying if I still love him, wanting to flee from it all… In addition, I’m bleeding and spotting while my body gets used to the HRT (please note: this happens).
And then, walking to the shops past my favourite spot on the river, I quickly caught myself thinking the old: “What if you jumped in?”
This time, however, mindfulness and an understanding of what my mind can go through with menopause made me note the thought and file it away as one to be aware of and watch to stop it growing.
I call that a major win.
So what now?
Usually by this point in an article, my brain has unscrambled itself and I have a plan. Right now, I’m frowning like crazy.
I’m not giving up on HRT just yet – but it’s there in my options. I have no doubt HRT does wonders for the vast majority of women and it has many, many health benefits. But it’s not the cure-all it’s made out to be and women need to be aware of this, too.
So while I’m contacting the GP to try and arrange a new coil fitting, I see this as the last throw of the dice. Which means I have to start looking forward and getting serious about alternatives.
And then, there’s the question about anti-depressants. Once the thought of being on anti-depressants long-term was scary. But after talking to people (thank you, Menopause Café) and listening to mental health advocates such as Alastair Campbell, I’m rethinking that. Together with practising my CBT behaviours, they may have a role to play for me a little longer.
So, yeah, my plan is as clear as mud!
Wait, there is a positive!
Two years ago, I felt the world was falling in and it was all my fault and I didn’t know what to do. When I felt the same way this March, I was able to talk about it and not be ashamed of feeling so bad. When the thought passed my mind this month, I was able to dismiss it.
That’s the power of education and knowledge. Of knowing I’m not the only woman who feels this way in menopause.
I was discussing how scary it is putting your work out there when it’s so personal and intimate just this week. But it is by others doing this that I can cope better now. And I hope it helps you, too.
How has your HRT journey been? Please let me know in the comments below. They help a lot of women.
Well done for battling on. Endocrinology and hormones is such a confusing field. I did some reading and started to get fed up when I found that the symptoms of oestrogen deficiency are the same or similar as oestrogen excess. I thought maybe I had a progesterone deficiency, but no one would give me any without a lot of expensive tests, and cream is available but most of it seems to be made from mares’ urine … So I don’t take anything. Feel a bit meh most of the time, but not sure if HRT would help. Do you think it’s worth trying? sorry to hear about your problems with getting your coil. Damn virus.
Hi Carrie (I wanted to be called that when I was little!!) It sounds like you’re having the runaround too. Why isn’t there any help for us? Well, it’s because women’s health isn’t considered important enough… But enough of my rant!!! There is HRT that doesn’t use horse’s urine and is body-identical. I think that’s what’s usually used now. I would always say give HRT a shot. It has worked so well for so many women that it has to be worth trying. I know many of my friends swear by it. Good luck and let me know how you get on x
Hi
I’ve just found ur blog and it’s just soo similar to what I’m going through with HRT and found I’m intolerant to progesterone which brings on a load of symptoms great eh this is a recent discovery so felt ill for soo long currently waiting for mirena coil fitting next week nurse said that I can stay on oestrogen and testosterone until then..but I’ve got no progesterone and worried about just taking oestrogen my question is I’ve been off progesterone what will be 2 weeks meaning oestrogen on it’s own? Should I stop the oestrogen? Thanks for any info
You are working so hard to help yourself. I just sit and feel bad but don’t take anything. My hot flushes are diminishing but my anxiety which seems to be a menopausal symptom for me, is off the scale and Covid 19 is pushing all the wrong buttons for ne. By sharing your story it helps me feel I’m not totally going mad
I’m so glad it is helping you, Elaine. You’re not going mad. Have you talked about your anxiety with your GP? Please do xxx
Hi Carrie
This just reasonates so much with me. I have explored every option of hrt to find a progesterone I can tolerate. For me, the ‘holy grail’ utrogestan that everyone raves about was the worst. Sent me into utter despair. Have just come off Evorel sequi after 3 months – the progesterone is insidious – at first absolutely fine but after a couple of months I could feel the negative thoughts swirling around my head as it built up. A week without any hrt now and I feel I have myself back. The last option for me now is the mirena – but I have to wait until covid has gone so I can have it put in under general. Best of luck with it all, Claire
Evorel Sequi was the devil for me. It made me so bad with my intolerance. I’m on utrogestan and so far, it’s okay. Not fabulous and I have some dodgy days (post coming up soon!), but I feel livable and after so many years of feeling crap, I’m going with that for now!
Hi Claire and others ,
I’m only seeing this blog and these posts for the first time and the older replies . So, I realise I am a bit late to this chat as it’s a very long time since you all wrote yours. However , I felt that wanted to respond and write as it’s painful and lonely keeping my thoughts and feelings to myself .
So much of what has been written here about Progesterone intolerance and nightmare experiences with HRT resonates with me . It’s good not to feel alone in this but still worrying that there doesn’t seem to be a solution.
I have history of severe PMT , a nightmare pregnancy where I felt suicidal and physically collapsed within the first few weeks which I now understand or believe must have been due to the very rapid increase in my own progesterone at that time. I’m 51 now and post menopausal . Perimenopause started I think in my very early thirties and it has been hell. I’ve been seen for various suspected mental health conditions over the last 30 years and am still under the “care” of a psychiatrist whilst I continue to wait after 3yrs on an never-ending waiting list for dialectical behavioural therapy , for what is believed to be “emotionally unstable personality disorder” . I’ve always thought that this diagnosis was a bit “off” and that it would not matter how much therapy I get as I don’t have any confidence in DBT being of any more use to even out my moods or help me live a happier life , than anything previously – I am now certain that it’s my blooming progesterone intolerance issues that I need to try and overcome somehow and that they have been making me mentally and physically ill, all my adult life .As I was seemingly intolerant to my own progesterone since puberty , it now doesn’t surprise me that I too cannot tolerate Utrogestan body identical micronised progesterone that is seen to be the “be all and end all” of women’s combined HRT needs. I am fairly sick of hearing how wonderful it is supposed to be !!
I have to admit though that the first month being on it plus Lenzetto oestrogen spray was amazing and my menopause symptoms disappeared (apart from the memory and brain fog stuff which I now understand is likely to be a testosterone issue!). I’ve a very very long history of PTSD and associated Fibromyalgia but I can now see how the progesterone intolerance could have have a major role in exacerbating these problems also . It’s only since having increasing symptoms over the months of taking Utrogestan , that this is really hitting home . I’d been taking Utrogestan for 16months during which my mental and physical health continued to deteriorate . I have had more frequency of worsening flare ups of the Fibromyalgia and one very recently, during which I not only had increased arthritis pain in all my joints , my back was in spasm and twisted for weeks and my muscular pain was horrendous but I also had new bladder and bowel issues that came along for the ride too as well as the crushing fatigue. I couldn’t walk without crutches and still was in spasm all through my body so any movement became almost unbearable. Last straw was when my bowels were cramping so severely that I almost passed out and I just couldn’t empty them – everything was totally in spasm and nothing from my rectum down was “opening” to let anything out !!! I struggled like this for over an hour and was afraid of damage to my bowels so I had to force my lower parts open with my own hands to remove my waste and gain some relief. Absolutely horrendous . This was coincidentally about six hours following taking the last Utrogestan I have ever taken ! I was a shivering sobbing wreck after that episode and I swore I would never take another one of those capsules again. The Vaginal Utrogestan route option , I had been prescribed off license and tried , way back at the start of my HRT “journey” but I was so sensitive to the capsule in my vagina that the severe irritation caused a very nasty and painful infection which required a long course of antibtiocs to clear it .
Within 24hrs after my nightmarish Utrogestan-induced bowel-seizing episode and subsequently not having the oral Utrogestan in my system anymore ; the muscle spasms all cleared, my joint pains eased and my back became mobile again. My tight bladder pain also eased , I was able to pass urine and faeces again normally , I was no longer feeling suicidal, the fatigue cleared completely and I actually felt like a person I recognised although it had been over a year since I had felt anything like myself at all. I had been under a lot of stress so I had put worsening fatigue and fibromyalgia largely down to that because how could I be doing badly on the “gold standard of HRT” and my hot flushes had gone and I was finally sleeping after years of insomnia? I had however got to the point where I was practically narcoleptic due to the exacerbated fatigue and I only wanted to sleep and sleep and sleep. The wonderful relief and escape from all the severe symptoms after stopping the Utrogestan , only last a few days of course, when my body then clearly started to notice the lack of oestrogen again and my previous menopause symptoms became more noticeable but at least I wasn’t having my recent severe issues anymore .
Funnily enough, I have not been able to keep a job as that has been an impossibility .
I had been full time carer for my elderly mum however but she’s had to go and live in a care home because I became totally incapable of looking after her properly when menopause and more exactly , HRT progesterone started to hit me so hard .
So, perhaps my last hope , after also unsuccessfully being able to tolerate Evorel conti patches , is to now ask about trying the Mirena coil, at an NHS menopause clinic appointment which I have begged for . I never thought I would say “please give me a hysterectomy ! “ but I am at that point now although I’ve been told there’s a 5yr NHS wait where I live or a £10,000 private fee for the procedure (payment plan available which then works out at the “bargain” price of £13,500 after 5yrs of monthly payments !!). To say I’m angry about this is quite an understatement.
So, I’ll reluctantly ask to try the Mirena coil but I am very very nervous about it. I understand from Newson Health docs on the Balance+ app recent video about progesterone intolerance , that the first 6weeks of the Mirena can be very difficult as the levels of progesterone are at their highest for this time period after insertion. I’m terrified of a mental health crisis occurring as I can’t just rip the coil out of myself , the way I have been able to rip off the Evorel conti patches which have given me either manic feelings along with severe agitation and dissociative symptoms or severe fatigue and desperately low moods.
If I try the coil, I’ll have to ensure there is somewhere I can go asap, to get the thing taken back out of if it all goes horribly wrong for me.
Life without oestrogen is seemingly going to be very difficult , so I’d love to be able to have it but the thought of struggling on for 5years without any, until I could perhaps have some version of hysterectomy is not something I would look forward to or perhaps even survive the depression and suicidal feelings. Hysterectomy of course could leave me with some awful physical problems with bowel and bladder too . Why are we women designed so badly that we can be either suffering from our own progesterone from puberty onwards or we just get left on the scrap heap at menopause time with no hope of symptoms abating in sight when we can’t tolerate treatment and there are only worse health issues potentially looming on the horizon? I would love to be hopeful and optimistic but life for me seems very gloomy and just a pile of poop quite frankly !
I really hope that there will be further research and new tolerable HRT options for us all in the very near future.
Best wishes to everyone suffering through all of this .
Hilary
By
I am 54 nearly 55 and I am on Evorel sequi now for 8 months …it’s not made me feel great at all ..like they say it makes you feel fabulous …not me ..I’m so lethargic all the time and I work I’m my business standing most days..so I’m not lazy….it’s great for the hot flushes…but that’s all…this is the 4th HRT I have been on as all the rest made me have awful breast tenderness…..but these patches don’t..I have started a supplement called ESTROLUX…so I’m hoping combining this with the HRT will help …but I really need a solution if to come of the HRT and see how I feel….i have had enough i feel its really aged my skin to…sick of course black hairs to they really have gotten worse….please help and give me some advice and has anyone been on the tablet CLORIDINE for hot flushes …and tell me how they felt.
Evorel Sequi is not for me, neither. It made me feel terrible. I’ve never heard of Estrolux – let me know how it goes x
I have been takeing evorel sequi for 6 months now I feel better than I did the odd day feel low also I have a bleed every month sometime breakthrough bleed hope this helps x
hi there, im so confused and frustrated, I was put on hrt by my gp 4 months ago due to early menopause, I luckily didn’t really suffer with symptoms or not that I can remember , but after 8 years of hitting and missing periods and male gps telling me I was too young I finally had the blood test to confirm it. my gp has put me on femoston 1/10 as a treatment for bones, heart, womb etc , the past 3 years i have only had a couple of monthlys and shortly before visiting my gp had just gone a full year without a period, the hrt she prescribed does give a withdrawal bleed and that I can cope with but…..I have gained weight at a rate I cannot cope with and look like I am 9 months pregnant, I have taken this hrt for 4 months and feel at the minute that I was better off with out it, I am a young 44yr women that has a very busy social life and for me I feel I dont want the anxiety that the weight gain is causing me …. I think I was better off just plodding along wuthout hrt…..probably slight symptoms but able to control my weight ….I am not going yo take hrt anymore ….I may consider it later down the line , but at the minute feel hrt has name me feel worse not better ….any advise on the above would be welcomed…thanks lind😄
Hi Lindy. I was put on Femostan for my first HRT and I piled the weight on so quickly. Plus it did absolutely nothing for me so I came off it and went on anti-depressants at my GP’s advice. But they did bugger all too! In the end, I went on patches and now a gel and progesterone tablets and I’ve got my head back together, which is helping me focus on the weight I’ve put on. At your age, you will be gaining a lot of benefit from the oestrogen in your HRT, so perhaps try another form for a few months before you call it a day? Let me know how you do x
I was on that hrt combi tablets and had a monthly period I hated being on them made me feel so low moody breast tenderness no life with my partner so stoped when on patches feel better than I did the odd day bit off but haveing breakthrough bleeding think this is normal till ure body gets used to it x
Hi Elizabeth, what a moving account of your current situation. Well you know part of my story and I too was sensitive to progesterone and I have chosen to manage without it (yeah that one size does not fit all) but that is because I had an endometrial ablation and Prof Studd’s clinic have agreed to give me 6 monthly scans (so far absolutely no thickening at all) but OMG I remember those months/year of taking the progesterone, it was hell! So I get it and I sympathise! I really hope that the coil helps you and you can move forward. I have decided (for now) to stay on the AD as well as Oestrogen and Testosterone. I might come off them eventually. Chat more soon, Michelle (www.fiftyandfab.co.uk) xx
Prof Studd is a star!!!! So glad you’re managing to get the help and most importantly, the attention you need xxx
Hi, I am 52 and have just come across your blog accidentally whilst searching HRT and anxiety – thank you for writing this. I started HRT last year, 2020, during the pandemic when I finally realised that all my ailments (severe cramping, joint pain, itching and the obvious hot flushes) were related to the menopause. I have never really suffered from anxiety, I can be a little sensitive or worry a little but nothing serious. However, since being on Evorel Sequi 50 I have moments where anxiety, I think, goes through me to the point that my arms tingle and I feel shaky or sick, sometimes little things too?! I thought it was caused by the pandemic but I am normally quite resilient and happy go lucky and I have a very stable home life and supportive husband. I do all the right things, exercise, toga, breathing etc. I am now starting to wonder if it’s the HRT but I am loathed to change as all my other ailments have disappeared and will anything else be any different? I am also not sure if this is the culprit but I am not sure I can cope with these waves of anxiousness!
Hi Rachy and welcome! Thank you for stopping by and sharing your story. Please, go and see your GP and explain how you’re feeling. There are many different types of HRT (I’m on my fifth sort!) and there may be one that does everything for you. Also, not everything in our lives is menopause related – it’s been a tough year, even if we haven’t really felt it, so the pandemic may be having an impact. But my first port of call would be the GP to ask about a change of HRT. Good luck and let me know how you go x
I am so happy to know that what I am thinking and feeling doesn’t deem me “crazy”. I went into early menopause when I was 42, I am 46 now. I am in the states and first tried Prempro, which is mare urine. I was on Prempro for almost 3 years. I felt the best when I was off of it for 3 weeks. I then started bio-identical just last month and feel HORRIBLE!!! I am having such dark horrible thoughts. I believe I am progesterone sensitive. I have another appt with my dr on the 9th of August but feel like that might not be for me and am concerned if I go off them I will be a victim to cancers, heart attacks, and osteoporosis. In addition, I have zero sex drive and am young still. This is all too much! I am frustrated and wish I wouldn’t wake up some days. Not to mention the weight gain and feeling inadequate, fat, ugly, and saying to myself that no one would want me or that I can’t keep a man. Why would he stay with me….fat and crazy. I know this is all the hormones talking but it still affects me. It’s nice to know I am not alone. Thanks for sharing ladies.
Hi Dee. Boy, do I understand your fears – I’ve had them all. But then I started thinking about the older women I know, several in their 90s and living full and active lives, and they haven’t had HRT, they’ve just looked after themselves. And if you go back through the centuries, you realise the tales that women either died shortly after menopause or were ill and bedridden are just tales. Many lived to be in their 80s and 90s too without cancers or heart attacks or osteoporosis. Lifestyle has a mahoosive part to play in having a fit and health second half of our life. Good luck with your doctor on 9 August and let us know how you get on x
Hello
I’m a single 52 yr old without children and little family or friends. I’ve had a rough few years mainly emotionally but a couple of years ago my periods became very heavy and unmanageable due to flooding. I now have severe anemia and take ferrous fumarate. I have been taking tranexamic acid (that I had to ask the GP to prescribe) for four months and the first month it worked but now doesn’t seem to be.
I have overwhelming feelings of loneliness and have not been able to go work due to my flooding, tiredness, mood swings, irritability. I live very modestly on my savings after I downsized my home so I didn’t have to face going to work.
After being single for seven years I’m really struggling at times to imagine ever finding a man who will want to cope with me. I used to be considered attractive and outgoing but now I spend 95% of my time at home alone. Meditation and a teacher called Mooji is all that has gotten me through and also knowing my 76 year old mum would be destroyed if I’m no longer here.
Covid, a noisy neighbour, lack of support from village neighbours, a brother stuck in Cambodia with my only nephew whom I’m yet to meet and the world’s problems all become too much especially when what I crave is a hug.
Hi Jo. Please go to your GP and explain everything you’ve said here. There is support out there, but we have to be annoying to go get it. And there will be lots of people feeling this way, so thank you for sharing. There will be more than your mum upset if you were not here, so please, go and ask your GP xxx
Thank you for explaining what you’ve gone through. Perimenopause has been aweful for me. I’m 51 and in the late perimenopause phase and it’s getting even harder for me…the mood issues have turned into a perfect storm of craziness! I have a dear friend who is a nutritional practitioner she has me on everything to support me, but I’m still not well. I’m on a bioidentical progesterone and a bioidentical estriol. I have to be really careful with estriol as it gave me nausea and indigestion. I had to scale way back on it. I’m so sensitive to everything (more than most) so what works for others just freaks my body out. I’m on an antidepressant but can’t even handle a full pill but have to divide it. This year I’ve had to increase it to help the emotional madness. Pretty much I have no social life anymore I feel too trashed! My nerves feel like they are raw and exposed my tolerance is low to any kind of stress. I’m reading other women dealing with it too but those I know personally aren’t overwhelmed with it like me. I have very few people I can talk to about it. Looks like after reading the other comments here I’m in good company!!
Yes you are in good company.Im struggling so much myself and just dont know what else to do or try hrt wise.
Adrienne x
Hello
Ive tried many types of hrt and just cannot find one to suit. Im 49 have crashing fatigue,low mood,weight gain since starting the latest hrt femoston and many other symptoms.The hot flashes are gone but weakness and dizziness are other symptoms i have.
I dont want the coil or to go without hrt due to how it can protect you
I have honestly not felt myself in so long and drag myself through everyday. The dizziness was so bad the other day I felt scared.
Is there any hrt left for me to try I wonder!
Adi
Hello there 👋
I have read all the comments with great interest as so much much of it sounds really familiar to me.
I am 48 and have been peri menopausal for about 3/4 yrs now. Starting with brain fog/aching joints/unexplained weight gain hot sweats insomnia. Tried to put up with the symptoms for as long as I could due to pandemic and not being able to get any help from GP surgery (as if it wasn’t an emergency or you weren’t a child they weren’t interested). The nurse practitioner at the surgery eventually took pity on me and after a lengthy phone conversation prescribed me Elleste Duet 1mg estradiol and norethisterone which did elevate some of the symptoms in particular the night sweats. I stayed on this for 3 mths but still suffered from joint pain/fatigue and my periods which at least were now regular were horrendously heavy! I had no follow up from the gp as expected so paid for a private appt. with a menopause expert who had an nhs clinic at liverpool women’s hospital. After a face to face consultation she suggested upping my prescription to 2 mg and taking tranexamic acid with a suggestion of a fitting a Mirena coil in the future if things didn’t improve. She sent the notes of my consultation to my gp who didn’t respond. After chasing the change of prescription this eventually happened. I’m now 3 mths on with the new meds with awful dark moods when on the norethisterone tablets. Periods still so heavy they just wipe me out for 3 days a month with the tranexamic acid making me nauseous but not making much difference to the periods.(I’m very nervous about taking this as apparently it increases the risk of DVT) I really don’t like the idea of having a coil fitted as I have tilted uterus and I don’t need it for contraception and am a little scared of how the progesterone in them will effect me. Still no review for the meds from the gp even though I have just requested a repeat prescription. Thinking of just coming off all meds to see if I’m better or worse??
Hi Nicola – have a read of this about my tilted womb and then this one about the coil fitting Might help x
I started HRT at 45, as at late 44 CRAZY menopause symptoms started and then I tested as in menopause but was still having some periods, I’m 46 now.
I think in smaller doses HRT is better than not especially in allowing me to get a little sleep as opposed to almost none. Sleep is still not fantastic, but it’s better. Getting no sleep is really bad obviously :). Insomnia is really the worst menopause symptom so far, the hot flashes I could live with. But the progesterone does seem to cause sore breasts and possibly contribute to depression, but I’m depressive anyway so who knows about that, plus menopause itself can contribute to depression. So the sore breasts are really the worst symptom that is definitely down to HRT. I’ve only ever used the bioidentical stuff, in the states, so it’s always hit and miss what medical stuff insurance will cover anyway, so might as well use what seems like the least problematic HRT and pay for it.