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Author Topic: Don't know what to do....  (Read 6757 times)

Waterdaggers

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Don't know what to do....
« on: February 08, 2017, 03:31:28 PM »

I'm currently on a 50mg Evorel patch and should be having utrogestan 200mg for 12 days each month. I'm really struggling with the utro. The first month I only managed 8 days of 100mg taken vaginally. I skipped it entirely the next month. This month I'm 4 days in (100mg vaginally) and feel like crap. As well as work (I'm a personal trainer and have to motivate people) I'm in my last year of an open university degree and I just cannot focus at all whilst I'm taking this stuff. I feel like I have no energy with a banging wooly head. Also lots of nightmares and weird dreams and sleep is really restless. I've tried a synthetic progesterone patch and that just made me feel totally depressed, covered in acne and kept me up all night itching. I would rather have what I have now than that again.

So I am seriously considering whether to opt for a hysterectomy. I had surgery about 4 years ago to remove a borderline tumour along with an ovary (probably why I am going through early meno - I'm 42). I have regular scans to make sure nothing has come back but my consultant would like me to have a hysterectomy and to remove the other ovary. He's very flippant and doesn't see it as a big thing but I'm a little fearful of the finality of doing this. However the idea of having to go through feeling like this on utrogestan for a third of the month is really getting me down. Could a hysterectomy be the answer or will it make my problems even worse? Seeing consultant friday and he wants to know my decision. Any advice appreciated. Thank you
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Menomale

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Re: Don't know what to do....
« Reply #1 on: February 08, 2017, 03:43:46 PM »

Oh Waterdaggers, I'm sorry you're feeling like this. I'm not hrt expert, other ladies will help you soon. I just want to say I had exactly the same reaction to utrog and had to stop it. I'm very scared of surgical procedures in general because of the anaesthaetics but if I knew before what was going to happen to me now at 50, I would have accepted the hysterectomy when I was younger. It all depends on costs/benefits and if you are physically and mentally apt for surgery. In my humble opininon, age is an additional risk, so the sooner you decide the better.

XXX
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Kkay

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Re: Don't know what to do....
« Reply #2 on: February 08, 2017, 04:01:08 PM »

I'm not an expert either but went into Premature ovarian failure at 42 and am now 55 - how dreadful that you're having such a reaction to it.

Having a hysterectomy seems a bit drastic; my vote would be to try a different provesterone. I do very well on Duphaston -10 mg orally for 12 days every 3 months. I  hardly feel it -  I understand it's not available in the UK, but easily available in France for example, and probably online. That would be my vote rather than an elective major surgery.

Best of luck with whatever you decide
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catlover

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Re: Don't know what to do....
« Reply #3 on: February 08, 2017, 04:28:34 PM »

I do feel sorry for you, but I can only speak for myself in that if I had the worry of having to have regular scans then Id follow your consultants advice.

Tne recovery is long, and of course it has its own downsides and possible complications, but you would presumably cope better on just oestrogen?

I recently had fibroid surgery and wasnt offered a hysterectomy I would have snapped it up if I could!
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Night_Owl

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Re: Don't know what to do....
« Reply #4 on: February 08, 2017, 04:33:33 PM »

Waterdaggers, can relate to what you are saying as you're describing 'progesterone intolerance'.  You may have seen other threads discussing this.  As you may or may not know, it's the main reason women give up HRT.  Of the women who take HRT, roughly 20% are 'progesterone intolerant' and within that group, 10% are 'severely progesterone intolerant', which also means being 'allergic' to one's own progesterone too.  I  am in the latter group, I know this as I also had hideous PMT, probably Premenstrual Dysphoric Disorder.

I agree with your fear of the finality of hysterectomy (I was offered this too and still pondering, years later) however that can bring with it other problems, eg bladder issues.  Also the body can still produce small amounts of progesterone in the adrenals so although you wouldn't be taking additional progesterone, there is the possibility of still feeling some prog effects from your own production. 

It sounds as if you need a lot more time to mull this over.

The  Utrogestan 200mg is very heavy duty.  Do you take it v-route?

In the meantime:

* wondering if it would be possible for you to take a long cycle regime, it still means taking Utro but less often, ie. every 6/7 weeks.  I'm sure Hurdity will be along at some stage to explain further, as this is her regime.

* I believe there are members who take Utro for just 7 days per month with regular scans.  As you know, it's all a balancing act and depends where you are in meno, it's still early days for you.

[By way of information, in my case and with years of trips to the meno clinic and discussion about my severe prog intolerance, the best (but not ideal regime) is low dose estrogen Estraderm 25 and 100mg Utrogestan x 12 every 6/7 weeks.  Which means I have 6 or 7 weeks of 'estrogen holiday'.  I dread taking the Utro with every fibre of my being but I know it's an evil necessity!  I am further along the meno journey - my periods stopped at 44 and it's now 9 years on.  In the early days I could never take high doses of estrogen as I couldn't take the necessary level of progesterone.  I tried them all eg. Crinone, Cyclogest and wouldn't consider the Mirena - all the progesterones made me feel beyond hideous.]

* Just a suggestion - Maybe a 37.5 Estradot estrogen patch and lower dose 100mg Utrogestan, v-route x 12 nights, every 6 weeks - with 6 monthly endo scans.

* No HRT at all - up your supplements, eg. Magnesium, Vit D, Calcium Carbonate.

Unfortunately there is no escaping the dreaded progesterone. 

I hope you find a way forward.
« Last Edit: February 08, 2017, 04:48:55 PM by Night_Owl »
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Lizab

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Re: Don't know what to do....
« Reply #5 on: February 08, 2017, 04:40:28 PM »

I completely understand your indecision. I'm 40, know I should be on estrogen, but the progesterone is killing me. Is a 3 month cycle an option for you? I have decided to try and stop hormones completely, and if that fails, start fresh with a 3 month cycle. I haven't yet been offered hysterectomy, and normally would think it's absurd to go for surgery so I could take a med, but having experienced this, now I would probably take the surgery.
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Maryjane

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Re: Don't know what to do....
« Reply #6 on: February 08, 2017, 04:44:28 PM »

What about a mirena ?
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Night_Owl

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Re: Don't know what to do....
« Reply #7 on: February 08, 2017, 04:46:13 PM »

I do very well on Duphaston -10 mg orally for 12 days every 3 months. I  hardly feel it -  I understand it's not available in the UK, but easily available in France for example, and probably online. That would be my vote rather than an elective major surgery.

Kkay, I've heard of Dydrogesterone, taking it every 3 months sounds good - a longer 'reprieve'.  Do you mind me asking: what is your dose of estrogen? Are you progesterone intolerant?  Guess as it's not available in the UK it's a no-go but I'm going to look into this again.  Do you have it prescribed?  Sorry, questions, questions!
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Hurdity

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Re: Don't know what to do....
« Reply #8 on: February 08, 2017, 05:58:22 PM »

Sorry to hear this Waterdaggers - great post by Night_Owl who really knows about all of this (sadly eh?).

I would definitely explore the possibility of changing the dosage of utrogestan with your doctor or your cycle. I presume you are still peri-menopausal?

Research has shown that when taken vaginally less progesterone is needed - but you are finding difficulty even with 100 mg vaginally - and I presume this is mixing with your own progesterone from your natural cycle? You are only on a medium dose of oestrogen so you may well not get much additional endometrial growth ( womb lining) but this would need to be checked. I know that some women on here who are still peri-menopausal and having fairly regular periods are allowed to miss the odd cycle under supervision of their gynaes and to check the lining is not overthickening. Maybe you could explore this option with your consultant - it would in effect be a longer cycle (of HRT) but your own cycle would be carrying on?

I think a hysterectomy is very drastic and would seriously consider this carefully. I would definitely opt to keep the other ovary - some of the women who have had womb and ovaries removed subsequently have a difficult time getting the right dose of oestrogen (and testosterone) after this drastic operation.

Yes dydrogesterone does sound an attractive potential alternative because it can be taken in much lower doses and is almost identical to progesterone - I might have been tempted to try it myself had it still been available. Maybe meno consultants can get hold of it. It used to be licensed for HRT and I think, withdrawn for commercial reasons though why I can't imagine, since it is still being manufactured.

Hurdity x
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coldethyl

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Re: Don't know what to do....
« Reply #9 on: February 08, 2017, 08:27:07 PM »

I can't advise you on HRT etc but I'm currently receiving chemo for ovarian cancer and I'd say if you've already had one borderline tumour removed and your consultant wants to do a hysterectomy and ovary removal, I'd take them up on the offer. Through researching my own issue, I've learnt that primary tumours can already have metastased  even if no "primary " detectable on a scan so I'd hate to be reliant on yearly scans to keep me safe. Far easier to avoid getting it in first place than treating it with no guarantees of success - I had to have a radical hysterectomy because of tumour but you'd be looking at a less invasive operation and I can't say I feel too bad 4,months later even having had chemo as an additional stressor.
I have the odd hot flush but no more than prior to operation and my moods have been more stable without my ovaries. I haven't been offered any HRT as I am over 50 and cancer scared them off from prescribing but I'd imagine at your age you'd be offered it again - maybe sonething like Tiblone which several post hysterectomy women on here are using.
X
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Tempest

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Re: Don't know what to do....
« Reply #10 on: February 08, 2017, 08:44:02 PM »

I'm with Coldethyl on this one, most definitely! It took me some time to come to terms with my surgery and the aftermath, but considering my history I am now settling with the idea that it WAS for the best as my risk of cancer was rising. The last cyst was large, complex  and had a solid portion - I've had many, many over the years on both ovaries and my Consultant doesn't like to see these continuing into and beyond menopause as the risk of the cysts being cancerous rises.

Yes, HRT can be difficult for us but having a full open conversation with your specialist about your own personal risk is vital.  xxxxx

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Waterdaggers

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Re: Don't know what to do....
« Reply #11 on: February 08, 2017, 10:32:52 PM »

Thank you everyone for their replies. It really does help to read what other people think. My consultant is a gynaecologist oncologist so I guess he would not reccomend this if he didn't think it was necessary. Thing is he doesn't really explain much to me it's like he just wants to get me out before I can think of a question to ask. He certainly has no interest in the menopause and hormone side of things.

I haven't been to my GP to see if she will agree to me lowering my dose as I fear she will just stop the prescription. Last time I was there when I asked her for utrogestan she told me she didn't think it would agree with me and that I am probably going to be one of those people who can't take HRT (I've never been able to take the pill). There is no way she would agree for me to have less than the recommended dose.

I see the gynaecologist on Friday and I'm going to tell him yes to the hysterectomy. I'm sure there will be a long waiting list to give me plenty of time to give it more thought
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CLKD

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Re: Don't know what to do....
« Reply #12 on: February 08, 2017, 10:59:51 PM »

Why is the Consultant hurrying you into surgery?  Hysterectomy isn't to be undertaken lightly, it's a big operation.  Maybe take a list of queries with you - after all, if you go onto a Waiting List you can cancel as long as you don't wait until Op Day!  ;)

My Gynae believed that if hysterectomy was done then ovaries should be removed at the same time, so that there was no further risk as well as there being a risk with a GA. 

Do ask what post-op HRT etc. you will require! 
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Waterdaggers

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Re: Don't know what to do....
« Reply #13 on: February 09, 2017, 07:03:27 AM »

He isn't really hurrying me, he wanted me to have it done 4 years ago after my first surgery but at that time I thought I might want more children. Now I'm going through menopause and my relationship has disintegrated so more children is out the window. Last time I saw him he arranged a hysteroscopy to remove a suspected polyp + biopsy (turns out there was no polyp and I'm assuming biopsy was fine) and at that time he mentioned again why not just have a hysterectomy instead of constantly having all these scans etc.

It only really appeals to me because of my progesterone problems. Personally I feel like if I've been clear for 4 years the chance of a tumour returning are really slim. But then when I read posts from people who have had cancer then that does scare me a little. I need to get some more facts and figures from him. He wants to do it laparoscopicly (spelt that wrong I'm sure!) and of course the ovary has to go too. I'm not even sure if it would be the hospital prescribing me HRT or the GP. I would want to be prescribed testosterone and I know my GP is against that.
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coldethyl

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Re: Don't know what to do....
« Reply #14 on: February 09, 2017, 10:27:13 AM »

He isn't really hurrying me, he wanted me to have it done 4 years ago after my first surgery but at that time I thought I might want more children. Now I'm going through menopause and my relationship has disintegrated so more children is out the window. Last time I saw him he arranged a hysteroscopy to remove a suspected polyp + biopsy (turns out there was no polyp and I'm assuming biopsy was fine) and at that time he mentioned again why not just have a hysterectomy instead of constantly having all these scans etc.

It only really appeals to me because of my progesterone problems. Personally I feel like if I've been clear for 4 years the chance of a tumour returning are really slim. But then when I read posts from people who have had cancer then that does scare me a little. I need to get some more facts and figures from him. He wants to do it laparoscopicly (spelt that wrong I'm sure!) and of course the ovary has to go too. I'm not even sure if it would be the hospital prescribing me HRT or the GP. I would want to be prescribed testosterone and I know my GP is against that.

Don't want to scare you, but cancer can and does return at any time. Ovarian cancer has a habit of popping up years later again like breast cancer. In fact any cancer can just return - I've met women on unit whose breast cancer has cone back 18 and 22 yrs later and is now incurable.
I think your gynae is being proactive and sensible as the risks increase in menopausal women - although my tumour was deemed not be hormonally driven , I'm convinced all the emotional upheavals of my peri contributed to its development as stress has been shown to cause spread in breast cancer so why not other types ? It is hard to put yourself into a unknown situation but far harder to face one suddenly thrust iupon you with the risk of a far less successful outcome. Xx
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