Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: racjen on October 02, 2018, 06:00:53 PM
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Had my coil fitted this morning - weird experience to start with as I'm an NHS patient in a private hospital, presumably Torbay buying in extra services at ridiculous cost. But the whole thing brought back horrible memories of cancer treatment, biopsy for breast cancer and previous traumatic biopsy for LS. Can't fault the staff though - they were lovely and the actual procedure was OK, bit painful and now mild period pains but nothing like as bad as I feared.
Then on to the Community Mental Health Team for a very badly timed assessment appointment - I've had to call the Crisis Team so many times now I clearly do need ongoing help and support with managing this, but I've also had plenty of acknowledgment from various medical professionals that this is a hormonal problem. And yet I still find myself having to explain it all to a psychiatrist who, surprise surprise, has no knowledge or experience of menopausal anxiety and depression. What is going on here? - I'm starting to suspect some kind of massive conspiracy to keep us uppity women in our place, ie Bedlam. They didn't dismiss it, but I left feeling totally bereft of any hope, in a horrible panic that suicide is my only way out. Thank god my poor 18 year old daughter was at home, got into bed with me and put on mindless TV programmes to distract us while I sobbed and eventually calmed down. Worst day for a long time...
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Good evening
Pleased to hear the coil fitting went ok but sorry to hear it brought back painful memories.
Sorry to hear the appointment with the Community Mental Health Team did not give you the support you were hoping for.I'm sorry I don't have any suggestions you can try but there must be someone who can help but it's so frustrating trying to find the one when you are feeling desperate I just want to give you a :bighug: and let you know I'm thinking of you.
Your daughter sounds lovely and these are for her 💐
Take care
Lanzalover x
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Hello Racjen. I am very disappointed to hear that you've LEFT a mental health assessment feeling bereft of hope and suicidal. That's absolutely terrible. I'm not criticising any of the medical profession nor the health service, but that means your appointment completely failed you. I'm amazed that the psychiatrist hasn't heard of menopausal anxiety or depression. It kind of beggars belief. In all professions we have to undergo ongoing professional development and learning and should be aware of most/all areas of the field, even if we are not experts in them. As a lawyer, I might not be a patent law expert but I would know how/where to direct someone. Even by just reading the newspaper, your psychiatrist would have picked up something about menopausal depression. Then your psychiatrist should have at least been able to say the right thing and direct you somewhere. Please don't feel bereft of hope. Lots of people on here would be worried about you. I am. I think you have to go back there and ask for yet another appointment with someone else, if that's possible. I'm glad the coil fitting went okay. And what a lovely daughter you have. Presumably she must have learned those caring skills from you, so you must and should look on her as a great achievement. Can you check in with us tomorrow, please? X
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I can't face it, I just can't face any more having to justify myself, somehow prove that I'm not just losing the plot because I've had a few hard knocks in life. I want to say to them all 'go and look on this forum and you'll see with your own eyes just how many women are suffering from this horrible horrible thing as a result of menopause' but I know they won't, because they only want to believe what their training has led them to believe. To have somebody say to you 'how do you feel about what we've just discussed? ie CBT and management strategies for anxiety' and my reply was 'I feel like I want to go home and take an overdose', and there was no response to that other than 'somebody will be in touch in 2 -3 weeks' - what do I do? Right now I do't want to wake up tomorrow morning, but the thought of my daughters finding me dead in bed is more than I can cope with.
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Racjen,
I hope you are doing better than the last post when you read this.
If all you have to hold onto right now is your daughter not finding you, please hold on to that. I know it's not much but it is something. I've been in that thought process before and that's all I had as well but it helped me get through.
Really hope you can find the right help soon.
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Racjen
I am so sorry you are feeling like this. It is a truly horrible experience & no words can explain it. I too have felt like that & have thought of my 10 year old son. I really don't know what you have tried. Menopause can definitely cause all these horrendous symptoms. When I had PND years ago I went to see a physiatrist & he dismissed it being hormonal & just gave me more & more ADs. This time around the same thing. You must remember these health professionals aren't really trained in hormonal depression at all. Look around in the internet there are loads of doctors who definitely say hormones can cause this. Just being dismissed by them can make you feel awful. Don't forget in desperation there are always the Samaratins who you can call day & night for someone to talk to. Take care. Xxx
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How are you feeling today?
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Can't fault the staff though - they were lovely and the actual procedure was OK, bit painful and now mild period pains but nothing like as bad as I feared.
So glad that went well.
...I've also had plenty of acknowledgment from various medical professionals that this is a hormonal problem. And yet I still find myself having to explain it all to a psychiatrist who, surprise surprise, has no knowledge or experience of menopausal anxiety and depression.
A lot of them are woefully clueless. The overwhelming majority of women with hormonal depression are given treatment designed for men and based on male presentation.
What is going on here? - I'm starting to suspect some kind of massive conspiracy to keep us uppity women in our place, ie Bedlam.
Good old-fashioned sexism is alive and well in medicine. I've suffered severe endometriosis that took decades to diagnose purely because menstrual pain is easy to dismiss by many medical professionals. If men suffered a condition where their balls felt like someone took a hammer to them every month, you can guarantee there will be heaps of funding poured into research for it. If men suffered a hormonal condition that debilitated them at the PEAK of their careers like menopause, you can bet anything it would be taken more seriously. But I am so PROUD and grateful for you speaking up about it so boldly and so frankly - the more of us speak up, the less we all have to struggle in silence.
They didn't dismiss it, but I left feeling totally bereft of any hope, in a horrible panic that suicide is my only way out. Thank god my poor 18 year old daughter was at home, got into bed with me and put on mindless TV programmes to distract us while I sobbed and eventually calmed down. Worst day for a long time...
I've developed a true and sincere appreciation for mindless TV programs - they really do have their place in this world. Please hang in there...it will all come to pass.
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Oh Racjen
I've been thinking of you, having the procedure. I'm glad it went better than expected xx
And I'm sorry you are suffering so emotionally. I've been there too - it is a living hell. I would drive around, shouting to myself ‘you will NOT do that to your kids'....it was horrible, all hormonal, and ads made me feel worse, if that was possible. Please don't do it, we think you're important enough to stay xx the world still needs you in it xx
Are you using patches or gel? And how strong is your oestrogen dose? Hang in there if you can, I'm really hoping that everything will settle for you this time xx
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Hi Racjen,
Good to hear the procedure itself went well and the staff were supportive, but so sorry to hear it brought back horrible memories.
Hopefully now the Mirena is in, it will help.
Unbelievable you're sent to someone who doesn't know about menopause and its symptoms, having read a lot on here and speaking to a few of my friends, and strangers in Boots actually, women experience Menopause so differently. They do say it's a very personal experience you will go through for when it's your time, but GPs and psychiatrists etc, who just say it's your hormones is so upsetting.
I'm realising how my 'hormonal' ups and down and problem periods have just been dismissed as all regular, irregular periods, and will stop when it's your time!!
I hope you're feeling a little better today. Is there another doctor at your surgery you can talk to?
Wishing you all the best xx
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Just emerged from another sudden attack of what I can only describe as horror - like the blackest despair ever but combined with overwhelming fear about the despair itself. I literally could not string two words together for a couple of hours but just lay in bed with no stimulation whatsoever, again my poor daughters have to sit with me and make sure I'm OK. Now I look in the Mirena info leaflet and it says common side effects are depression and nervousness, and with my history of reactions to anti-depressants and pretty much every other drug going I'd say this is looking horribly familiar. HAs anyone else had this? I don;t get panic attacks as such, but I'd say this is probably as close to one as I've ever been.
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Try and clear your mind. Tell the anxiety that you need to take just a couple of hours off and you'll deal with it again tomorrow. Make yourself put the television on and make yourself sit in front of something easy. Try and concentrate on anything other than the horror and anxiety. I know it's hard. I have been there. Indeed I was very recently and I did not know what to do with myself. It's your hormones. It really is. You are still there under that. Wish I lived near and could drive round with a big dollop of empathy and my (big fat - thanks for that too hormones!) shoulder to cry on. I'm concerned about you, as are many others on here, but there doesn't seem to be any magic wand to sort this. Hang on in there, it will pass, but it's going to take time xxx
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racjen
This is for you :foryou:
Hang in there - we all care about you, as do your lovely daughters.
Hope you are feeling a bit better now - and keep posting on here - there will always be someone to talk to.
Hurdity x :bighug:
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Yes keep posting no matter how you feel. Hopefully you will soon feel a little better. Xxxx
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Hugs Racjen I'm thinking of you :tulips2:
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Good morning racjen
Hope today is a better day for you.
Please keep posting on here regardless of how you are feeling there's always someone here.
Lanzalover x
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This morning I came the closest I've come yet to taking an overdose; usually I make myself get up by 8am and dressed by 9 just to keep some routine going, but this morning I simply could not get out of bed I felt so depressed. Realised I was just waiting for my daughters to go out so I could take the stash of pills I can't bring myself to get rid of. But then thank god a tiny sane corner of my brain said 'you promised you'd phone the Crisis Team if you felt like this'. That and another corner of my brain that knows that I only ever get into this state when something's being put into my system that shouldn't be ie antidepressants, sleeping tablets, beta blockers or in this case, the Mirena.
Was then made to promise that I wouldn't stay in the house on my own, so went to a friend and lay on her sofa for a couple of hours. Saw my GP this afternoon - she seems to understand but also seems a bit clueless about what to do about it. The gynaecological referral resulted in this totally inappropriate treatment (I've since discovered that a history of depression is a BIG contraindication for a Mirena, and that depression and nervousness are high up on the list of common side effects), and I feel that after a year of this kind of extreme reaction I should be being referred to a genuine specialist in sudden and acute menopause symptoms. I did try and make this case and she's going to try and find out what to do next, but surely it's not that hard?
Has anyone exercised their right under the Patient's Charter to ask to see a particular specialist anywhere in the country? And if I managed to do that, who should I be asking to see? Please don't say Prof Studd because it sounds like all he does is prescribe the same high estrogen low prog regime to everyone and I'm already doing that. Nick Panay seems to come up on here a lot - anybody recommend him?
Getting the Mirena removed tomorrow btw as I feel thoroughly freaked by my reaction - have spent the whole day either crying or lying on the sofa staring into space.
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Hello racjen.
I'm so sorry that you are feeling this way, my heart goes out to you.
I've been following your story and although your symptoms are extreme they are all recognisably menopausal and will resonate with many ladies here. I certainly know how you feel.
I wish I had the answers for you but a solution must be out there, you surely can't be the first woman to have this distressing experience and I guarantee that you won't be the last.
Hopefully some knowledgeable ladies will be along to advise you but in the meantime sending hugs and best wishes.
Take care and thinking of you.
K.
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I'm beginning to get the feeling that even the knowledgable ladies are pretty much in the dark here; this has been going on for a year and so far things are getting worse. There seem to be lots of women on here who've had hysterectomy with or without ovary removal, and have a lot of knowledge and experience to share. But chemotherapy menopause seems to be invisible - I can't recall anyone else coming on here to share this experience in the year I've been on this forum. And as far as the medical profession is concerned it just doesn't seem to exist, even though effectively it does exactly the same thing.
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So sorry you are feeling like this. I know what you mean. I have had a full hysterectomy but not for cancer so hence no chemo. There must be someone somewhere who has had a similar experience to you. Don't give up. Answers can sometimes come out of nowhere & even in your darkest hour there can be a change. I am sure there is an answer out there for you. Only last week I couldn't stop crying & felt so down but this week is a different story. Before my hysterectomy progesterone made me totally crazy. Thinking of you. Xxxx
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Hi Racjen, I found this on one of Dr Nick Panay's info sites.
“Severe menopausal depression may also follow a history of premenstrual syndrome (PMS) and postnatal depression; this triad may be referred to as hormone dependant depression. In these instances the patient's clinical history adds strength to and confidence in the prescribing decision.
Misunderstanding of the distress experienced by women at this time could be a result of fears around HRT risks.â€
https://www.guidelinesinpractice.co.uk/womens-health/top-tips-hormone-replacement-therapy/352771.article
This is the link. It doesn't go into detail about your issues but he may be a good specialist to start with.
I remember reading an article around severe PMDD and how hormone replacement therapy stopped the young woman from harming herself.
She also had a hysterectomy and was prescribed oestrogen only Hugh dose which helped her lead a normal life again. Extreme but necessary in her case. Sorry I can't find the article to show you.
This is a recognised severe symptomatic hormonal depression that doesn't stop at menopause for some women.
I hope you feel better after having your coil removed and I hope you find some peace with your symptoms being controlled with the right help.
Keep reaching out in your darkest moments xx
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Racjen
:bighug:
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Racjen, so sorry to read that you are still suffering. I just want to say that my experience of the Mirena was not good! After about 2 to 4 weeks on it, I had to insist it be removed as I was feeling so depressed like a dark hole and this was even whilst using estrogen! Lady Doctor said there was such a tiny amount of progestogen in Mirena that I should be ok and she was reluctant to remove it after such a short time but I knew it had to come out
If you know that you are getting worse since having Mirena fitted please speak to your GP asap!!
God bless xx
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I had it removed after 3 days - it was that bad. These doctors need to read the leaflets that come with these things, it clearly states that a side effect can be depression and nervousness.
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Sorry to hear you were feeling so bad after the Mirena insertion racjen.
Lady Doctor said there was such a tiny amount of progestogen in Mirena that I should be ok and she was reluctant to remove it after such a short time but I knew it had to come out
In terms of systemic absorption - doctors are quite misleading when it comes to the Mirena and I have posted about this before. The Mirena was designed first for contraception and was promoted as giving minimal systemic absorption COMPARED TO TABLET FORMS OF CONTRACEPTION CONTAINING THE SAME PROGESTOGEN. However I did a comparison a while back and looked up the systemic levels in the body- which do vary over time with the Mirena - but on average very roughly the amount of absorption was approx equivalent to eg a Femseven patch used for HRT - at least in the same ball-park as they say. So if you are progesterone intolerant then it could easily be the case that you would react to the Mirena. I don't know why this is not pointed out more.:-\ Many women are fine with it but it is a fallacy to lead women to believe there is no or almost no systemic absorption because this is only the case by comparison. Of course it's worth trying as with other HRT types but women need to be fully informed at the outset.
Hope you are feeling better today racjen....at least the sun is shining (hopefully where you are too!).
Hurdity x
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Racjen,
All progesterone maked me feel crazy. You aren't alone.
Hope you are feeling a bit better. Xx
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Hurdity, that's really interesting and makes a lot of sense, can't believe I'd have reacted so strongly if it really was SUCH a tiny amount. The gynaecological consultant I saw said that there's such a tiny amount in it that it barely reaches the brain at all! In which case why are there side effects like depression and nervousness listed in the info leaflet?
Had it taken out Friday afternoon, spent all of yesterday with that awful familiar withdrawal feeling (in fact was on the sofa watching crap with my daughter all day, couldn't do a thing). Today I'm bleeding and starting to feel a bit better, have done a bit of gardening and going out for a walk in a while, in the sun. But it still leaves me with the ongoing problem which is making my life a complete misery and no-one seems to have any answer to (or even seems to care that much) :'(.
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Racjen,
I'm sorry you still aren't feeling well but very happy that you are better than you were!! Hopefully that sunshine gave you some happy hormones! I hope you continue to improve with the depression!
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Good morning ramen
Pleased to hear that you have managed to have the mirena removed and pleased to hear you are feeling slightly better hope this is still the case.
Have you thought about seeing Louise Newson regarding your problems she seems to be highly thought of re menopause problems and I'm sure there are some ladies on here who have seen her.
She has a couple of web sites so it might be worth having a look.
Good luck and hoping today is a better day for you.
Lanzalover x
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I hope you're having a better day today Racjen xx
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Racjen glad to read you are feeling better since removal!! and doesn't that just prove how sensitive you are to hormones! I really feel for you and hope you get help you need very very soon!! X
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I hope you are feeling better today racjen....remember the withdrawal may take a few days. The sunshine was even better today so hope you managed to bask in it for a little while :sunny:
Do let us know how you are?
Hurdity x
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Feeling somewhat confused, as Sunday I started to feel a bit better, but yesterday and today have been pretty dire again, a lot more anxious and depressed than I have been for a while (and my daughter confirmed today that i have been consistently worse since the afternoon of having the coil put in than I have been for a while). Am I right in thinking that synthetic progestins have a much longer half-life than utrogestan and that's why you need a much smaller dose? If so would that mean the withdrawal period can be a lot longer?
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I think it really just depends on your body. You are very sensitive to hormones so it probably will take awhile...my guess. I don't know for sure but I know there are some things I am sensitive to and they always take longer to get out of my system....or at least to finally get weak enough I stop noticing the side effects from it.
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Hi there racjen - I looked up the product info on Mirena, specifically the pharmacokinetics - which is how the product is metabolised in the body over time and it says this:
"The pharmacokinetics of levonorgestrel itself have been extensively investigated and reported in the literature. In postmenopausal users of Mirena who were receiving non-oral concomitant oestrogen, plasma levonorgestrel concentrations have been 276 ±119 pg/ml, 196 ± 87pg/ml and 177 ± 70 pg/ml at 56 weeks, 24 months and 48 months respectively. A half life of 20 hours is considered the best estimate although some studies have reported values as short as 9 hours and others as long as 80 hours. Another important finding, although one in agreement with experience with other synthetic steroids, has been marked differences in metabolic clearance rates among individuals, even when administration was by the intravenous route. Levonorgestrel is extensively bound to proteins (mainly sex hormone binding globulin (SHBG) and extensively metabolised to a large number of inactive metabolites."
From this you will see there is great variation in the half life due to differences in metabolic clearance so hang in there - your feelings are not unusual especially as you are very sensitive to medication as BlueButterfly says.
I hope today has been a better day ...
Hurdity x