Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: PompeyLou on May 02, 2016, 04:18:34 PM
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I am in urgent need of some advice... I was diagnosed with PMDD 2 years ago after nearly succeeding In taking my own life after years of hell... I quickly worked out that I couldn't cope with progesterone so I went to see a gynecologist. After having a scan they thought I had a very large fast growing polyp so called myself and my husband in to take a biopsy of it, they did this in front of my husband and we were told that they think they had removed most of the polyp... 3 days later I had a phone call to urgently go back in as they had found something... my husband was away so went alone only to be told that what they had removed wasn't a polyp but a baby!!
I was told that it was probably already dead and if not because of my age (44) it also probably wouldn't have survived... I had an operation In the May to remove any dead baby tissue... in the July I went In to have my overies removed as this would help with my moods if I wasnt ovulating and wasn't producing progesterone. My husband wasn't happy with this but knew it was my decision. I was obviously thrown straight Into menopause but was given Livial.
I felt absolutely brilliant on this and thought what I had been through was now worth while as I hadn't felt this good in a long time... but!!! my gynecologist went on maternity leave in the October which is fine but I was told I had to stop taking livial by her stand in because I still have my womb! I was put on something different which contained progesteron and I was like a raging bull as my husband put it! .. I came off it in January and haven't been on anything since and feel totally drained and like shit! I'm 45 and my 2nd marriage of just over 2 years is in pieces.. I keep emailing my original gynie but she won't reply.. I have been left to rot and nobody will help or listen to me! I am thinking of buying livial on line because I am now really desperate. .. has anyone else ever done this????? :'( :'( :'( :'(
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Hi there, I'm sorry but I have no knowledge of HRT, I just didn't want to read and run.
I read your post and my heart goes out to you. What an awful time you're going through.
Someone with knowledge will be along soon I'm sure. Sending you best wishes and love. You'll find comfort and support here I'm sure.
Take care xxx
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Thank you so much.. and I hope I do soon because I'm certainly not getting any support or help from anywhere else xx
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Thank you :) xx
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Pompeylou, I am so sorry to hear about the terrible time you been having.
So just to clarify, you have had both ovaries removed, still have a womb and got on extremely well with Livial.
There is no reason why you should not have carried on taking Livial because it is a continuous combined regime specifically for women who have a womb. My doctor offered Livial to me and I have a womb and ovaries. This doesn't make any sense at all and I am at a loss to know what this gynaecologist is talking about.
Therefore, I would say yes, buy it online and get your life back, you have nothing to lose. Alternatively, you could try getting it from your GP but if you are desperate and don't want to wait for an appointment before starting it then at least get the first lot online (it is usually next day delivery) and then see your doctor about getting it on prescription thereafter.
I think you have been treated very badly indeed and I am appalled.
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After all that Dr Kath did in the 1980s to determine post natal depression etc. and the link between hormone upheaval, rages, murderous intent …… and ladies are still not listened to nor given a proper diagnosis :-[
I too am appalled that your Gynea didn't make it clear enough in your notes covered by a letter to your family doctor that you can continue with Livial. It is unlikely that you will receive a reply as the e-mail is probably only accessible via her Hospital. (in the U.K.?) I am appalled that the Locum isn't clued up enough to keep you on the Livial until she/he has made enquiries. The Hospital Pharamcy would have been the place to start :bang: :bang: :bang:
Welcome. Browse round. Make Notes! Vent. I would be sending a letter to the Locum explaining exactly what has happened in recent months! When did you last see your GP? That is the place to begin, or as Mary G suggests, buy on-line.
How sad that the scan wasn't clear enough to determine a foetus :'(. A shock for all concerned?
:bighug:
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Hi Mary.. yes I had both overies removed and went head first into menopause... my doctors won't let me have it either..apparently if Im on Livial and I still have a womb I will get a build up as I won't be shedding any of the womb wall lining and I could get cancer of the womb? But I'm obviously not doing that now either as I'm not having a period! My first gynecologist gave it to me for a reason and thought it was right so I can't understand why nobody else will listen to me... but thank you so much for taking the time to reply xx
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R U in the UK? I can't understand whether your GP is involved at all?
Maybe go visit a Pharmacist this week as most here have private rooms now. Make a list of what you need to know. GPs have been sent new Guidelines regarding HRT as Research is now thought to be outdated ::)
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Hi yes I'm In the UK...I've been to my GP many times and they all say the same... when I was on it it was a struggle every month when I went to get my prescription
.. I've had my whole life completely turned upside down and left to rot by the people I thought were there to help me xx
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Didn't your GPs give advice if they weren't happy with the suggestion from the Gynae.? You're not alone now >wave< …..
You could start another thread if you feel necessary about the baby that was taken away, there is a private area on the forum. You could also see if the facility to send Dr Currie a private e-mail for advice, the fee will be there too: at the top of the page I think.
Keep posting!
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I just want to feel normal and like a woman again ... Im only 45 and my marriage is bein held together by a thread as my husband doesn't understand at all
:'( xx
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Tell him to get a grip? There is a page for 'husbands' here somewhere, of course, meno-brain here can't remember where. Ladies have found it useful to print it off and hand over for their men to read ;-).
They really don't get it. The woman they thought they knew suddenly changes, of course we do, it's hormonal ::). People when scared get angry or close off so keeping communication open is important.
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"Advice for Husbands" in the 'All Things Menopause' room ;) - I've bumped it.
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Sorry to hear what has happened to you but I wonder if your Gynae is not replying as they have now realised they made a mistake in prescribing it for you if it can possibly lead to cancer? Dr's do make mistakes.
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PompeyLou, I have just checked again and Livial (Tibolone) is a bleed free continuous combined HRT regime that contains a type of progesterone so you will not get lining build up. It specifically says that A SEPARATE PROGESTERONE SHOULD NOT BE ADDED TO LIVIAL. Surely your GP(s) should know that and I really don't know what they are talking about. You can check it out on here and you will see it is at the bottom of the continuous combined HRT list and does not need any extra progesterone.
I really do despair and my advice is to just go ahead and buy it online. Your GP obviously knows nothing about HRT so they can't give you any advice anyway.
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Mary G - I am in tears. This girl appears to have been treated without any consideration - doesn't a Consultant's advice count for anything? Particularly when a treatment is 'working' for a patient, surely it is better all round that the regime continues?
I would think that the Gynae who suggested the Livial is on maternity leave and has other things on her mind ;-). However, the Locum should have known better :bang:
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Thank you both so much for listening... and Mary I've read all that and thought that was the case but the gynecologist I've seen in my original ones place is aparently one of the best and won't let me have it.... I really am feeling so low and don't know what to do
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Type Livial in the search engine on here and you will find some threads about it. One member was taken off it as she had a thickening of the womb plus her Dr told her it has one of the highest rates of uterine cancer. I know it's very frustrating for you that they have taken you off it but it's obviously to guard you against cancer. There must be another alternative form of HRT you can take?
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Not if it contains progesterone there isn't.
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Send an e-mail to Dr Currie ?
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From your user name I'm guessing you're in Portsmouth. How about ringing these people for advice http://www.menopausematters.co.uk/clinicdetails.php?id=71
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I know many on here will disagree with me but under the extreme circumstances and if you are not prepared to just go ahead and buy the Livial online, I suggest you seek the advice of a real hormone expert like Professor Studd. I think he will disagree with this gynaecologist and will probably have some better suggestions.
Considering your are very severely intolerant to progesterone and cannot possible take it, why didn't they give you a full hysterectomy? Wouldn't that have been a better option for you? I can't see how that could possibly have put in you a worse place than the one you you in are now.
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Mary I was told it would cost more to do a full hysterectomy and because of the reason I was having it done it would have probably been turned down by them above. Xx
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And yes Lisa I'm from Portsmouth :)
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Mary I was told it would cost more to do a full hysterectomy and because of the reason I was having it done it would have probably been turned down by them above. Xx
Disgraceful. Another 'postcode lottery' I presume? I feel very sorry for you that you are in this situation.
I had to fight to have an elective c-section with my third child (my second child was born by emergency c-section). Because I had given birth to my first child 'naturally' as they called it, they were reluctant to give me an elective section but I stood my ground and was given one but I suppose it depends on the health authority?
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So it was all about cost and they were not thinking ahead. By the way, I meant to ask, why are you particularly at risk from Livial? Did they explain in detail their reasoning behind the decision to take you off it and what exactly are their plans for you now? Presumably they are not just going to leave you like this.
Livial is a well used product which many women take happily for many years so why all the scaremongering about lining build up? If it is supposedly that dangerous, why is it even on the market?
In your situation there are very few HRT options left because you cannot take progesterone at all so how about taking Livial and having a uterine scan every year to check the lining? If this lot won't sanction it you would have to pay for it yourself but under these extreme circumstances, it has to be worth it.
For God's sake don't just carry on feeling the way you do now, there has to be another option.
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Go along to your GP and ask to see a copy of the letter sent to the Surgery from the Gynae who recommended Livial? Make a doulbe appt. and ask why they feel that even though you have good results with it, they no longer agree with the Gynae.?
Then change your GP!
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I would change GP. Find a smaller practice with less Dr's (that's what I did and they are much better, the Dr's are also young). I would then ask for a full hysterectomy now they won't allow you Livial.
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Also look for GPs with particular interest in womens' problems, they have done extra qualifications. You could also ask your local Pharmacist/s which Surgeries support menopause ………..
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Most GP practices have a website or even if you google them in your area, it comes up on the NHS Choices website and gives reviews from patients and details of what the GP's specialise in. The small practice I changed to has two female GP's one of whom specialises in womens health.
I would google GP Practices in your surrounding area and have a look at the info on the GP's.
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They are terrible at my surgery .. I've seen a few and not one of them understand my situation... but if I was to try and end it again I'd soon have all the mental health doctors running around wanting to see me!!!
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That's terrible. So what are you immediate plans now? Are you going ahead with the online order?
By the way, I have to ask, are you a Portsmouth fan? I am a football fanatic in my other life!
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I haven't got a clue what I'm going to do Mary... my life just seems like one big black whole at the moment :-\
and yes I am a MASSIVE Pompey fan ::)
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Yippee!!! I'm a West Ham fan. Just in the middle of watch Chelsea v. Spurs and hoping Chelsea win so Leicester win the title!
Back to the boring menopause, why not just order the stuff online and be done with it. You can then go to your doctor and tell them that you got desperate and couldn't go on and were forced to take action. See if that gets them moving.
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Thank you Mary...I hope Leicester win the title too... we are in the play offs so im hoping we can make it back into league 1 :o
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They've done it, just been watching Leicester celebrate! Good luck in the play offs (will be watching) and with the Livial!
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What about asking your doctor to refer you to a menopause clinic in fact don't ask insist that they do and see if they're any better as its what they specialise in...and in the meantime get it offline...no way would I suffer and I would probably report this locum and your gps for leaving you in the wilderness. Good luck xx
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Hi
Just to add, many women who have had TH are given Livial to improve libido. Go on hystersisters wed site.
If I was you I would buy it on line too.
Wxx
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Thank you Warwick... it improved dramatically when I was on Livial but it's non existent now :-\
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I dont get this isn't Tibilone offered as a hrt like all the others what's wrong with it I tried it it gave me shocking headaches. Why would someone say you can't have it? Works on receptors doesnt it?
Got some in the cupboard if you want it!
Have you googled why it couldn't be given to a woman without ovaries?
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Hi Kate
my gynecologist who removed my overies said I was fine to be on Livial but when she went on maternity leave and i had my check up another gynee (a male ) said I shouldn't be on it because I still have a womb and need progesterone even tho I can't tolarate it and that was the whole reason I had my overies out in the first place.
I have been mesed around from the start and feel nobody seems to know what they are talking about at my hospital.
xx
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I find that! They all have their own opinions put them on it and they would soon start moaning! I got 3 boxes if you want them. I have often wondered is it enough to take ovaries I thought it would be?
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If you don't think your going
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PompeyLou, this gets more frightening by the day, this bloke sounds incompetent and I think you should report him. What the hell is he talking about, it clearly states and I quote "A SEPARATE PROGESTERONE SHOULD NOT BE ADDED TO LIVIAL".
If he is going to make your life a misery by taking you off Livial then he must explain in precise detail why he thinks you are particularly at risk from this product when millions of other women are not. He knows your history and he knows what coming off Livial has done to you yet he just sits on his backside and tells you to suck it up.
I think he is dangerous and putting women at risk and yet again it's the proverbial doctor (gynaecologist this time which is even worse) not understanding HRT being the same as a referee who doesn't understand the offside rule.
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Hi Pompeylou,
I have problems with my GP's as I suffered with meno anxiety and depression (although to them is is none existent) o now I am labelled...... as having mental health issues! so they treat me like I am neurotic..... so I avoid going if poss
Wx
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Did you speak with a Pharmacist Pompeylou?
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Hi Mary...he said I shouldn't be on Livial because I still had a womb and that I needed a hrt that contained progesterone ! And thank you all for being so helpful... I should have come on here months ago.. would you mind sending some out to me please Mary xx
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No problem, you will need to PM your address to me.
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Hello PompeyLou.
I've just read this thread and I am appalled and amazed at what has happened to you. Anyone would think you are trying to score heroin rather than just take some hormones. Incidentally I also know of someone who takes this HRT and although I don't know her well I think she has been on it for years.
I truly hope you get the help you need from the medical profession but in the meantime the ladies on the forum are doing a good job of looking after you.
Wishing you well and take care.
K.
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Hi CLKD
I've been at work all day so haven't had time but I do have an appointment with the gynecologist on Friday and I'm going to bombbard him with all this Imformation you lovely ladies have given me...
and thank you Kathleen xx
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>wave< do let us know!
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I googled Livial out of curiosity. The product info from the company clearly explains that you don't need progesterone with it because it acts like estrogen where estrogen is needed and acts like progesterone in the womb where progesterone is needed. I think you should print off the info from the manufacturer and take to your gyne and tell him that there's been a misunderstanding and you can and will stay on Livial.
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Is there a Practice Nurse to approach first? or GPs in the Practice that have an interest in Womens' Health?
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Hi pompeylou. I still have a womb and my gp prescribed me livial three weeks ago. She recommended it as having the least side effects and risks! Horrifying to read what you have gone through and I'm so sorry! I hope you get someone to listen and prescribe it for you. Take care Xxx
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Thank you all so much... I will let you know how it goes on Friday :-\ :-\
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Maybe go in to the appt. with something like "I think there's been a mis-understanding and I'm now more confused than ever, could we go through how I felt on Livial and can you remind me why I can no longer be prescribed this helpful medication" ……. which allows for a back-down rather than putting the GP on the defensive. Any opposition and you are now fore-armed ;-).
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Hi... well been to see the gynecologist this afternoon and said that I want to be put back on Livial.... he said OK!!! He didn't question it or try to say it wasn't a good idea just OK.... why have I been suffering for 6/7 months if he now thinks it's not a problem me being on it! Men! !
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Great news!
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Hi PompeyLou
Haven't read all of this thread in detail - but really pleased you have got back the HRT that suited you.
However it is quite correct that one of the long term risks of using Livial is endometrial thickening - this is listed in the product info and in the product monograph ( a document dealing with all the research before the product goes onto the market) - so for peace of mind I would ask for an annual scan (on NHS) because this is listed as a common sdie effect http://www.medicines.org.uk/emc/medicine/8552 and can lead to endometrial cancer it not checked regularly.
Hurdity x
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That's good news! Maybe he read the NICE Guidelines ?