Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Tc on April 26, 2019, 10:31:40 AM
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I have to stop the utrogestan I simply cant take anymore.
I'm bone tired. Yesterday I went out and I had to come home and go to bed. I could barely stand up and nearly fell asleep at the wheel again during a 15 minute journey. I cant drive like this it's dangerous.. I had to hold onto the stair rail and literally drag myself up the 3 flights of stairs to my flat, I seriously could've just laid down on the stairs.
I slept from 5.00 pm yesterday til now. Even when I woke up once in the early hours I couldn't rouse myself fully enough to even move a muscle.
It feels exactly like when I had ME after glandular fever in my 20s. The same sort of dog tiredness and muscle weakness which doesnt improve with sleep. It's awful. It started a few weeks ago and has got worse and worse.(I've been on continous utro for 5 months now.)
I still dont fully understand how continous progesterone works to be honest. I know that in sequi it stimulates the womb to shed lining which keeps lining thin. But in continous how does it keep the lining thin without shedding. If it is simply opposing the effects of eastrogen in the womb then isnt it opposing the effects of eastrogen throughout the whole body?
I started testogel 3 days ago and I know this may help but it's going to take a while and I cant carry on like this.
I'm on 175 mcg estradot.
The worry is that I might be on too high an eastrogen dose to reduce P. My gynae has scared the daylights out of me about this. I dont want to end up with problems with womb which I might need a hysterectomy for. Right now I wish they'd just removed my womb at the same time as ovaries. I dont know what the reason was for leaving it.
So ladies, How should I proceed. I didnt take it last night as I fell asleep before I had the chance so I am thinking just stop it now for 14 days and then decide what to do from there. Will 14 days of no P be o.k on such high eastrogen?
If I cant sort out the progesterone I'm going to have to stop hrt altogether and i dont want to not have eastrogen as I'm still only 54.
Thank you in anticipation for any advice/experience xxxx
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I gave up utrogestan after 8 days, it kept me awake all night so I couldn't function in the day, I didn't feel safe driving to do the school run as that was a 50 minute return run.
I changed to the Mirena and have been very happy with it.
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Tc I don't know how you've managed to take it continuously for that long, I know I couldn't. I'm currently on day 4 and feeling good, but I know from past experience I very quickly hit a wall about day 7 when my body has had enough.
Birdy re the sleeping I always find I sleep well while on Utrogestan but as soon as I stop I have a few bad nights until my body readjusts. Sometimes I take something else just for a couple of nights to help. Hope you get a good nights sleep soon x
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Hi TC,
Ive just put up a post about moving from oestrogel & 7 days a month of 200mg Utrogestan to a combi routine where i continue to apply oestrogel every day but also use 100mg Utrogestan every day.
The reason I have posted is because I am concerned about what effets it will have on me. Things aren't great at the moment (too ill to work this week) so I have to try something.....
Can I ask why you are on the combi routine? The reason it's been suggested I try it is because I feel terrible on days 5-15 of my menstrual cycle.
I hope you feel better soon, I'm also worried about feeling drugged up to the eyeballs & unable to stay awake! Xx
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Do you keep a diary Tc?
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Thank you ladies. Clkd. I did keep one for about a month when I first started the estradot. I noticed that on the middle day of the 3 day patch I felt slightly better.
This drugged up tired feeling has only realy started recently and just getting worse.
I think birdy might be right about the E to P ratio as the utrogestan has built up in my system over the last 5 months but I'm on 175 patch.though which is pretty high so maybe not absorbing much of it. Causing the Progesterone to be dominant. I dont know whether to try yet a different patch, maybe sequi. The meno nurse said if I continue to poorly absorb transdermally I might have to resort to the HRT pill.
Hi blue kingfisher I'm on continous as it's considered standard post meno and I'm in surgical menopause maybe ias birdy says f your eastrogen levels are high enough it will counteract the effects of continous progesterone. Also if you are not post meno your own hormones will still be coming into play.
I guess I can only try a 14 day experiment of no utrogestan and see how it goes. It's just that my gynae scared me so much saying "we must protect your womb at all costs". I guess if I switch to 14 days at 200mg I will be getting the same amount in a month as 100 continous. But I am on a higher dose E than most ladies so I dont know if that increases risk to uterus.
Xx
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? listen to your body ? :bighug:
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Hi TC, it's so frightening when you have to make all these decisions & when you have to make them when you feel so ill is inherently wrong! You just want someone to tell you what to take your symptoms away & give you a guarantee that you won't feel worse on a new régieme or just worse at different times! It's so frustrating and debilitating!
I totally sympathise with you & have everything crossed that your experiment brings relief xxx
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Thanks CLKD and thanks blue. I hope you find your new regime works better for you and balances you out.
I just seem to realy struggle with eastrogen and that's realy at the heart of the problem. I'm beginning to think my receptors have shut down!!
I didnt absorb the gel. The estradot patches have left a rash all over my tummy. I'm struggeling to find a clear bit of skin to put them and it seems I'm still absorbing poorly.
I realy would love to try the femseven sequi again TBH. I was only on 50 so it obviously wasnt a high enough dose but I didnt get a rash from it and didnt seem as bad on the progesterone phase as I am on utrogestan. I didnt get a chance to try an increase on it as it went out of manufacture and its not clear when or if it will be back.
We do seem to be left to our own devices to figure this all out. Thank goodness for this forum
Xxx
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You poor thing, Tc. :( FemSeven 50 is still available as an oestrogen only patch. It's the combined Conti patch which we can no longer get much to my anger and disappointment. Any way I am still using FemSeven 50 and am about to have a Mirena Coil fitted next week as I don't feel well on Utrogestan Conti. Is this an option for you? 💐
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Hiya roseand thorn. Thank you for your reply.
I need a higher dose than 50. I wonder if it's available in higher dose? Do you know?
My doc seems very surprised at my utrogestan issue as she said it's the most body identical and she seems to think that if I don't get on with that I wont get on with any other progesterone
But that might not be true. I seemed to get on better with the progesterone in the femseven. Its "leveno" something or other,cant quite remember but I do remember it's in the contraceptive pill and I took that in my younger days with no problems.
Mirena might be an option. But my sister had issues with it. We both have a "retroverted" uterus. And they said that was the reason they perforated mine during my ovary removal, so that's put me off a bit but my fears may be unfounded. I know ladies on here have found it to be the answer. I hope it works well for you. Please let us know how you get on with it.
Xxx
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I believe FemSeven is available in higher doses, yes. 75 and 100. I also did ok on the pill with levornogestrel...it was Microgynon which I took for years when I needed contraception. By the way my Meno specialist who is absolutely great, has said that even though the pill isn't licensed for HRT it is occasionally prescribed when nothing else has worked. I'm not keen as the doses of hormone are so high but it's interesting that she mentioned it.
I think you're right ....my meno specialist has also said that lots of women don't do well on utrogestan even though it's body identical. Other women do really well with it. There's no one size fits all. I am nervous about the coil but I'm going for it with hope in my heart.
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Yes roseandthorn. You should have hope. Lots of ladies seem to get the mirena and never look back. I hope I havent made you worry about it, it's just me being extra anxious.the doc probably shouldnt have said what she did about my uterus if she hadn't I wouldnt have any hesitation about it and I have no real basis for my reluctance so I shouldnt have repeated it.
Interesting about the pill. I wonder if they use it post meno tho.
Levengesterol that's it!! I seemed to get on o.k with it too although lots dont.
The meno nurse said I dont "fit into the box". But who does? I wish they were more interested in finding solutions for those of us who dont fall into their preconceived "norms". It sounds like you've got a good one though.
Xxxx
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I use utro 12 days per cycle and I'm also wiped out for those days, I can't imagine how you cope being on it continuously. Have you considered a long cycle? At least that way you might feel OK most of the time. The other option is a different prog. I started on everel patches and didn't get fatigue on the prog ones (had to change due to rash) so it's possible you would feel better on a different one.
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Thank you sheila. I havent tried everol. The estradot are giving me a rash tho.
Is the everol patch 2 weeks E patch and 2 weeks combined E and P?
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I tried twice to get used to Utrogestan 100mgs continuously and I just felt horrendous. My oestrogen level is still low so I think the build up of Progesterone in combination with low oestrogen was just making things worse. I took the decision myself to try the off license dose of 100mg every other day vaginally and things are definitely better. Best of luck with whatever you decide.
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Thank you sheila. I havent tried everol. The estradot are giving me a rash tho.
Is the everol patch 2 weeks E patch and 2 weeks combined E and P?
Yes. That's the sequi that I used. I was peri, if your meno you can use the combined patch all the time. Might be useful to start on sequi so can tell if you're OK on the prog.
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Good idea sheila. Well I feel like I've got a few options now. I felt so stuck before. So thanks so much ladies.
I'm going to leave the utro for 14 days although I'm worried about doing it. But it might get me nearer to an answer. I've got to wait for blood test in a month before changing the eastrogen. But I feel like I might be able to present the gynae with a few ideas now. Shes pretty clueless herself!! I'm seeing gp next week and I'm going to ask referral to C & W.
I'm so glad I posted this. I feel less anxious now about being thinking I might be a " hopeless case".
Much love to you all.xxx
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Hi Tc, sorry to hear you're still suffering.....
With stopping the Utrogestan, remember you might feel even more lousy as the prog leaves your system (lasted with me about 4-5 days) and you might also get quite a heavy bleed xx
I'm using the mirena with a patch, so far so good, although I have dropped the patch back to 75mcg and T back to .3mg as I had a feeling it was a bit much. Again so far, so good.
Good luck with it all xx
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Hi TC- can I ask why you're on such a high dose of oestrogen? X
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Northann thanks for the heads up!! It realy helps to know that ahead of time as I wont panic if I get either effects now. I am so pleased for you that you seem to have found the right balance. long may it continue. Xxx
Michele. I havent absorbed the eastrogen I've had at all so far which was borne out in a blood test. I must admit I increased it myself a couple of weeks ago as I was so desperate. I'm supposed to be on 100 patch.
Are you experiencing similar problems?
.
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As you know, TC, I think you're right to stop the continuous progesterone. I can't imagine functioning at all if I took it every day and I don't have anywhere near the side effects that you have. A few weeks without it is not going to cause any lasting issues even if you were absorbing the oestrogen properly.
I also got on really well with the Levornogestrel in Microgynon when I was younger but wanted to try the Utro as a first choice for HRT as I was suffering quite a bit of hair loss in early peri (levo is testosterone derived). Ironic really as I'm now on testosterone! Definitely worth thinking about the Mirena or maybe the Jaydess which is lower dose and some specialists seem to be offering it for progesterone intolerant women. My concern with it is the lack of control - I would need to get it out NOW if it didn't agree with me plus I have the incredible disappearing cervix (smear tests are always fun ;D.)
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Hi Tc sorry to hear of your ongoing problems. Just wanted to make a few comments.
Re the gynae being surprised at your reaction because utro is body-identical: the reason some women feel bad on it is because it has to be taken in high doses because it breaks down quickly in the body so the amount needs to be sufficient to protect the uterus. Therefore as I understand it the systemic amount is higher than we would experience naturally during our menstrual cycle ( though not in pregnancy which is a special case of v high prog and v high oestrogen), even when used vaginally - although more gets to the uterus when used this way. Also there are more metabolites (from breakdown through the liver) when taken orally - and these can lead to more sdie effects - but I think you've been taking it vaginally which minimises these.
I'm glad you are trying it cyclically as a starter to see how you feel - as we have been suggesting this for some time. The gyane is right - I think there is a higher RELATIVE risk of endometrial cancer using HRT cyclically than continuously but the ABSOLUTE risk is very small. If it was large (the risk of endo cancer) then HRT would not be used without strong caveats! Endometrial cancer is a long way down the line following from a thickened endometrium, which can become endmetiral hyperplasia with cellular changes. Only a small proportion of these become cancerous and there are usually other signs before you reach this stage ie bleeding, or thickened endomtrium on scanning etc.
I expect your womb was retained because it provides a valuable structural function in the body ie once removed everything can slip down (internal organs)??
You asked how continuous prog keeps the womb thin - this is a different mechanism from taking it cyclically which changes the structure of the lining and allows it to shed once you stop the prog. The precise mechanism escapes me ( have looked it up but can't retain it!) but basically the presence of the progesterone interferes with the ability of the oestrogen to cause the lining to thicken. All to do with the receptors and a particular biochemical pathway as well as the structural cells of the endometrium....
Good luck with your appt and great if you can be referred to the C and W which sounds like a great menopause clinic!
Hurdity x
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Hi there. Thought I'd chip in with my experience. I went to the Newson Clinic ( Louise Newson's practise) yesterday and though incredibly expensive just had got to a point where I needed to hear advice from someone I could trust. My GP has no idea and I wat at the end of my tether. I clearly have some level of Progesterone intolerance and have had migraines for coming up to five years now ( I'm 54 currently)which have steadily gotten worse. I didn't make the connection at first and thought they were sun related, alcohol related, sugar related, dairy. You name it, I suspected it. I've kept food diaries, drink diaries, period diaries. About four year ago other peri symptoms started and I went on Femoston. All symptoms stopped but the ever increasing migraines. They changed my HRT to Elleste Duet and still felt great but no change to migraines. I've had beta blockers, and amitriptyline and topiramate variously to try and stop the migraines before they start. I have seen physios, chiropractors, hypnotherapists and acupuncturists all to no avail. 8 months ago, doctor said I'd probably gone through the menopause now ( :-\ :-\ :-\) and to come off HRT. Wow! Welcome to hell. I lasted 7 months without being on HRT. I never knew it could be that bad. Full on meno symptoms. Thanks to this incredible board and all the info from Louise newson's website ( hence in the end why I went to her clinic) I managed to get my GP to prescribe oestrogel and Progesterone. It was a locum who knew nothing about it all so she accidentally prescribed me Destrogestrel as the Progesterone part.
So part 1: within THREE days of two pumps per day, every symptom had gone INCLUDING migraines. I had been at the point of 4/7 days migraine afflicted. On this combi I have not had a migraine since. It has changed my life.
Part 2: I'm not on a licenced Progesterone. So back I go to the gp with the advice from this website and get the Utrogestan prescribed. Orally. Due to my age and no bleeds I am to take it continuously. I take it first night, feel a bit groggy, every night onward I am wiped out and next day literally cannot move due to worst migraines I have ever experienced. I then stop taking it and go back to Desogestrel.
I feel amazing again.
But there's a big fat elephant 🐘 in the room. I'm not taking the Ustrogesten and have a womb.
So yesterday I make the three hour drive to discuss all this
Here was the advice. As I know I've taken the combined contraceptive pill for most of my adult life migraine free, it doesn't mean that every Progesterone will cause same problems. Plus, I'm advised that the desogestrel, whilst unlicensed does provide Progesterone so this again indicates similar.
They advise me to try one tablet if Utrogestan every other day vaginally to see how that affects me. If still bad, then she advises the Mirena coil. If that bad, there are other Progesterones that I can try. She did say that the Desogestrel “May†work but it's not licenced so she can't advise me re this.
So I'm going to do this. I'm hanging on for a couple of weeks simply because I have a holiday and can't face anything going t*ts up ;D
The session was fantastic and for the first time in five years I felt heard by a gp and also validated that yep, my migraines ARE to do with my bloody hormones and not with chocolate, wine, dairy or any other number of things.
Happy for anyone to PM me for more info on the clinic.
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Back to the chocolate etc. then ;D and :thankyou: 4 chipping in! Do you have to return to the Clinic or get medication via your GP? Do you keep a note of symptoms? Enjoy your holiday! Let us know how you get on.
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Tc - any improvement?
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Hi TC- hope you get things sorted. Re the absorption of the oestrogen, has this been borne out by various blood tests at different times? Remember that it'll only be a snapshot at a given point in time. Forgive me, for I've only recently rejoined the forum, so not sure if you've tried Oestrogel. It didn't work for me, neither did continuous Utrogestan ( I felt like a complete and utter nut job on it ). Tried taking it on alternate days. That didn't work either so have used the patches ( Estraderm ) and 200 mcg of vaginal Utrogestan for 10 days each month. It's so so and although womb lining is ok ( borne out by recent scan), something is no longer working ( including me, I had to retire early a few years ago). I'm thinking of trying to stop HRT for the second time, I'm so fed up with it all.
Re your own situation, that is a high dose of oestrogen so maybe you can think of lowering it and switching to cyclical progesterone. Give it a few months to see if any improvement. Longer term maybe a Mirena would suit. Not sure if you'd be a candidate for a Jaydess coil. Contains lower amounts of progesterone. Certainly sounds as if you have a bit of a progesterone intolerance going on. If this is the case, I'd be wary about taking a progesterone based on testosterone . Femeston tablets can be a bit gentler and you can take either continuously or on a cyclical basis.
Unfortunately it's all trial and error but hopefully you'll get a regime that suits you. Good luck and let us know how you get on x
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Back to the chocolate etc. then ;D and :thankyou: 4 chipping in! Do you have to return to the Clinic or get medication via your GP? Do you keep a note of symptoms? Enjoy your holiday! Let us know how you get on.
I've made an appointment for three months just in case the first or then second option doesn't work. They are more than happy for you to get the medication from your own gp but offer private scripts if you suspect you may come up against a doctor who is unwilling to prescribe or who won't fit the coil etc.
I don't think I'll need to keep a note because I'll either feel completely “normal†-present state or crap -let's hope not future state! I do have my doubts about the vaginal route for Utrogestan but if I don't try it, I'll never know! Feel free to ask any more questions
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Jasmine, when you take the 100mg Utrogestan every other day......does this not feel like it's confusing your body? I've just started taking Utrogestan 100mg & I'm only on the second day of dosing & feel shocking & in a coma. I absorb oestrogen poorly through oestrogel. I know I'm hitting the panicked button very quickly but I'm worried about getting worse as the days go on!
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Hi BK,
For me no I don't feel like it's confusing my body. It's been a positive change for me definitely. I still struggle with it but not nearly as much. That's just my experience so far!
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That's interesting to hear Jasmine, can I ask how long you have been dosing with pg every other day?
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I've only been doing it about two-three weeks so far. Do let me know how you get on if you decide to go down that route. I hope you find something that suits you better.
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Thanks hurdity for the very helpful info. I'm wondering if the effect of ccontinous P on the E receptors in the womb has the same effect on E receptors in other tissues in other parts of the body.which might explain the lack of positive effects of my high dose E.
What you say about retaining the uterus is probably true. I hadnt realy thought of it like that. I was thinking it's just this pretty useless organ now just sitting there causing me problems. But it does have a role to play in the pelvic structure.
Thanks for all your replies ladies. Not much to report yet. But it's only been 3 days.
Xxx
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Haha birdy. Thanks so much. I guess my meltdown earlier could well be prog withdrawal.
Thanks for the reassurance xxx
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Day 5 off the utro. I feel pretty awful. Anxiety is bad. Today I've got period type pain but no bleed yet.
I'm a bit less tired but swinging between bursting into tears at everything to being highly anxious.. I've had a sudden reaction to the estradot patches too. It started with rash a couple weeks ago and now the skin on my tummy where the recent different sites are is peeling.
I thought I might finally start to feel the effects of the E but I havent.
I'm seeing gp Wednesday for blood results. Not hormones just blood count and magnesium
Xxx
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Tc, the skin peeling thing is ok, don't worry about it. When I had my surgery they put normal dressings over my wounds and then, because I wanted a bath, I put waterproof dressings over the top. I got a reaction to those dressings. The skin went pink, it looked a little blistered as well. Then about a week after the dressings came off, the skin went dry and peeled off.
Don't scratch at it, or try and peel the dry skin off. Just moisturise the areas. Use something like savlon.
And eat something. Try some protein and slow release carbs. Avoid coffee. Try not to smoke too much (easier said than done ... I'm in the same boat). xx
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Thank you pants. Xxx
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Tc, how are you now ?
Have you eaten some proper food today ? xx
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Oh TC it never stops does it :(. Can you show the GP the rash and get them to prescribe some alternative patches as I guess the allergy might hinder absorption even more?
Hope you're OK. xx
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Thanks saffy. I will.
Pants. I didnt eat.You know me too well!! When I'm realy anxious I feel too sick to eat. But I smoke out of "nerves" and that doesnt help.I have had lunch today tho.
I've got backache and tummy pain. Feels like I'm due on. No bleed yet tho. I guess my eastrogen isnt high enough.
I havent noticed any effects of the testogel. Although it's only been a week. The thing is I didnt absorb the eastrogel so not sure it wont be the same story with the testogel.
Not quite as tired though and not as "weak". Still feel like a zombie though.
Xx
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No-one has mentioned Provera, which is also available for HRT as an alternative to Utrogestan. I've just started on it cyclically as I didn't get on with Utrogestan - insomnia, depression etc., never made it past 8 days before giving up, or with the Mirena, which made me feel panicky. The gynae I saw today said Provera is the kindest of the synthetic progestins and the one she'd suggest if you're having trouble with Utrogestan. It's only available orally though; I am getting a bit of stomach ache but it hasn't disturbed my sleep which is great. Only on Day 3 though....
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I also use Provera long cycle as I'm in my 60's and although not perfect for me it suits me better than Utrogestan used either orally or vaginally unfortunately progesterone is downside for many us on HRT.
Lanzalover x
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Update. Its a bit long ladies.
Saw GP today.
1. She said "who told you to take utrogestan without a 3 day break" (it was the gynae).
I told her I stopped it a week ago and she said "well that's up to you, but you've been taking it wrong".
2.she refused point blank to refer me to meno clinic. She said we referred you to a gynae. They have to refer you back to us before I will even consider it.
3 She wrote a scrip for generic "100 estradiol" patch. I explained that the pharmasist said it needs to specifically say "estradot". She said ",they are all the same, why have you got a thing about estradot". God help us!!!
I argued all of the above points to no effect.except she dramatically ripped up the scrip and gave me a months worth of estradot.
She rolled her eyes and sighed when I asked for more vagifem and estriol. She said "all these hormones!!!" in such an exasperated tone.
I told her I need vagifem more than twice a week. I also asked for ovestin instead of estriol which she refused. She practically threw the prescriptions at me and said "all these prescriptions I'm having to write, questions will be asked"!!!
OMG. What a cow!!
The upshot was she said 100 patch is as high as I can go and my eastrogen level is fine post meno (129pmol) if you are not on hrt. Aaaarggggh!! But I AM on HRT. I argued that my symptoms are not controlled so it obviously isnt enough for me and I said that the level might be o.k post meno in her opinion but it doesnt address bone health or VA at that level (i have read that it needs to be >300. I Said Its all irrelevant anyway if I'm not absorbing it as it hasnt moved an inch on HRT which realy needs looking into and that is why I want a referral to specialist meno clinic.
She gave me a blood test just for eastrogen only. I said what's the point of not doing all the hormones. She grudgingly added testosterone and then I brought up the question of SHBG. She was visibly angry with me by this point and snatched the blood test form back and wrote it on.
Why do they make life so difficult these docs. She acted as if she thinks I'm some sort of hormone junkie!!!
The final straw was the result of recent blood count iron, b12 and folate are as low as could be without falling below normal. She showed me. There was a fraction of a point in it on each. There is a huge chasm between my level and the highest normal and so she said I need to supplement. But...she said "you will have to buy some supplements yourself.. I cant prescribe until they fall a fraction more. Considering I presented today with extreme fatigue and weakness you would think she might have made a connection somewhere and just given me the damn things.
I left so angry, frustrated and tearful.
The only thing that cheered me up was realising the pharmasist has accidentally given me ovestin instead of the estriol she wrote up!! I felt like I'd scored a point!!! But it shouldnt be like that. It shouldnt feel like going into battle every time.
Xx
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TC, my goodness that's absolutely awful. I'm so sorry she was so difficult about everything.
There is absolutely no need for that attitude. Maybe it's worth thinking about seeing a different Gp? You don't need that on top of everything else.
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Oh Tc....what can I say...I feel a major complaint coming on. GP's cannot treat their patients that way and get away with it! You need to get a new doctor or practice even and a complaint needs to go to the practice manager and then to the health trust!
Yep she is a cow and we will all be praying collectively that her menopause is the most awful ever on the planet and she is surrounded by idiots like her when she wants it dealt with! ;D
At least after the battle you did get estrodot, testosterone and your ovestin (even if it was by accident) I am just praying that it starts to work for you..
What really got up her nose was that you knew more than she did but well done for fighting your corner so hard but you're right none of us should have to. You haven't been taking it wrong, there a people far more experienced than her posting here on the forum and from my own experience as you know, I feel safer with them than any flaming health professional! even a meno consultant. Don't let her undermine what you think you should try...trust your own judgement you will get there, I'm absolutely positive..it's just a long old haul. :foryou: xx
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Thanks ladies.. It was unbelievable. I tried not to get too angry and stuck to my guns.so I could at least get my scripts and a blood test out of her.. but as far as I'm concerned her word is far from final.I've already booked to see a different one and I will complain. . The one I've been seeing who is lovely has gone on indefinite leave. Probably fed up with working with A holes like the one I saw today.
If it looks like she isnt coming back I will definitely change GP surgery.
I seriously feel like going onto my balcony and screaming. Mind you I'd rather feel angry than hopeless tears. At least anger motivates me!!
Ladybt. I think You are right about them not liking us making ourselves knowledgeable about these things. But if they were able to give us trustworthy and consistent advice then we wouldnt need to. Thanks for the encouragement. I will trust my own judgement and yes. There is far more reliable experience I trust on here.
Thank you ladies.xxx
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Oh my god TC that's just dreadful treatment! Good for you for standing firm in the face of all that. Definitely complain and switch GPs, easier said than done I know but these GPs can't be allowed to get away with treating their patients like this. Grrr, fuming on your behalf :angryfire:. xx
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Thanks saffy and birdy. You are right. We shouldnt have to feel like we need to put up with it in order to get the treatment we are entitled to. Sadly it doesnt seem just me its happening to. It's disgusting that women who are suffering are having to "beg" for vagifem and the like.
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TC- you can self refer to some of the meno clinics. Would it be an option to pay for a private consultation elsewhere ? At least you've got a chance of maybe being referred to a meno clinic that way if your GP continues to be an idiot. I wouldn't get too hung up on the patches though. My consultant recommended estradot. This was on the prescription from my GP but I've always been given Estraderm patches and I've been ok on them.
Get yourself to Holland & Barrett and speak to them about suitable supplements. They've quite often got offers on. Hopefully you'll find in a few months that you start to feel better.
And you can take the Utrogestan every day, you don't need a break even although the leaflet says so.
X
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Thanks Michele. Sadly I cant stretch to going private. I will look into referring myself I realy want to go to the panay clinic at C&W.
Birdy. I think that gp is more familiar with the "nasty guidelines". :)
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Im sitting here having been too tired to do anything since my appt except keep falling asleep and thinking that considering my first post on this thread a week ago I talked about crawling up the stairs and how exhausted and weak I am surely it cant be a coincidence that my iron, b12 and folic acid are so low.
She seemed completely disinterested in it even though I was presenting her with those symptoms before she even looked at the results.
Thanks to the other doc I saw months ago about my digestive issues I have colonoscopy and endoscopy in 2 weeks time. I wonder if one or the other might shed some light on it .
Any thoughts ladies?
Xx
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What a bl**dy disgrace Tc. So sorry you had to suffer such an awful experience with someone that should be offering you advice and help in a sympathetic manner. Hats off to you for staying strong and fighting for what you need and deserve, even though this is not how it should be. I agree with what the other ladies have said that you need to find yourself another GP and to complain about the terrible treatment you have received.
Wishing you well.
Rosie63 xx
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Thanks Rosie. I certainly wont be seeing her again but I will complain. I hate to think of her treating others this way.
Thanks for your kind words. Xxx
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It pains me to hear so many GPs are so awful. Mine is too and I'm getting ready to go into battle in the next fortnight.
Holland and Barrett do a B12 spray by a brand called Better You. When I had chronic fatigue I used that with a D3 spray and their magnesium spray and that with more fats and fermented stuff in my diet helped me drag myself out of it.
The magnesium stings if you put it in any areas of dry skin so spray it on your tummy or wherever is more oily
I gave up on utrogestan and have been fine with Jaydess thank goodness. I though I was going to lose my mind and give up on life.
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Thanks orangefoot. Sorry to hear you've also been through such a rough time but glad to hear you've seen improvements. Funnily enough I mentioned in my earlier post that the last time I felt this way was when I had ME after glandular fever in my 20's.
Thanks for the very helpful tips and for sharing your experience with me.
Xx
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Hiya ladies. Sorry for the long post but I realy desperately need some more advice now. I've got myself In a position where my doc doesnt know how .much I've veered away from what she thinks I'm on. I've got gynae appt at end of month and in getting so stressed about it as she is so anti HRT.
The situation is now that ive been off utrogestan for 14 days and have seen no improvement.so I need to make a decision. Has it had time to clear from my system? Or do I Leave it a bit longer off it or restart it tonight. If I restart it I dont know whether to restart for 12 days or restart to 25 out of 28 days.. I've had no bleed since stopping utro.but with the high eastrogen patch maybe in storing up trouble trying to take less utro.
Easteogen. I've had to lower to 150 patch (every 3 days) as gp making life difficult she said 100 is the highest I should go and because she doesnt know I've been going higher she is suspicious of what I've been "doing with them" in her words so would only give me 8 patches to last the next 4 weeks.
So im going to have to lower further although I dont want to as even 150 is not enough I'm totally stuck. And I feel realy unwell. I wish I could just go to someone I could be honest with and work out what is right for me. Start again, so to speak and write the last 8 months off. They are a write off anyway in terms of effectiveness of treatment and quality of life . I'm seriously thinking about borrowing money for a private appointment. My gp is so rigid and wont budge.and I cant get referred meno clinic til I've seen gynae and then it's going to be months waiting.
I've got a blood test b4 I go so if my level has increased shes going to think 100 is fine if I dont tell her in actually on more. She made it clear 100 patch is "highest" And I dont know how to argue this apart from the fact that even if my level has doubled which I very much doubt. It's still not giving me any benefits. my breasts are very hard and sore for weeks now so it must be doing something right? Just nothing positive. I've been on estradot for 8 weeks now.
When I removed my patches this morning I realised that for the last 3 days Ive actually been wearing 4 of the 75's which is 300!!! I dont know how it happened I'm so tired and brain foggy I dont remember what Ive done but...there has been absolutely no indication in how I feel or symptoms from been on such a high dose for days. No effect whatsoever. Which rings alarm bells re absorption.
The thought of struggeling on like this trying to work things out on my own until the end of the month is bad enough but then waiting months more before I can see someone who actually knows what they are doing is even worse.
Right at this moment I feel like I could just lay down and die. I'm a physical wreck.
My doc wouldnt prescribe supplements even tho my iron,b12 and folic are so low. Im going to get some myself but I'm wondering why they are so low when I've never had that before. Something is going on. My body is so run down. I've got thrush, cold sores on my face and a constant dull backache.
Yes. I am depressed but I think that's because I feel so ill. I just realy dont know what to do.
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Ring your pharmacist about supplements, some are better than others.
As for your HRT - do you feel worse? Maybe make notes and take to the Consultant. Also ask why she is anti-HRT, you have a right to know. Doctors are not there to critisie [sp] but to support and advise. Ask if she is worried about the discredited 'research' from the 1980s, if she is then hand her details of this forum and suggest that she speaks to Dr Currie or the British Menopause Society ;-). If she is a gynaecologist she probably won't know ought from nought >:(.
Stop panicking. It probably ins't lack of absorption. It's probably that your body needs the 'top up'. However, messing around means your body doesn't know if it's flying a bike or riding a kite ;)
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Tc sorry you're still not feeling well. Just a couple of points which spring to mind: 1) it takes me a week to get over progesterone withdrawal and I only take it for 7 days. Given that you've been taking it continuously for (5)? months it's going to take longer than this for it to leave your system. 2) I think your oestrogen is too high. Sore breasts and thrush may be an indication of this, so I think you should reduce anyway .
Could you get yourself a good vitamin/mineral supplement to give yourself a boost. This is something I do if ever I'm feeling run down?x
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Thanks CLKD. And perin
My gynae is a gynae oncologist.and you know what oncologists can be like around HRT. And gp just cops out saying they will only follow what gynae says. Hence the need to be seen by meno clinic.
My whole body feels run down. I only get this herpes on my face when my immune system is out of whack. And I do feel worse. The backache is getting me down. Hurts more when standing. Its lower back and feels like it goes round my hips into pelvis with a "dragging" feeling.
The thing with the eastrogen is I wouldve thought if it was too high I wouldve got a bleed. Maybe I need to leave the utrogestan off for another week and see what happens. At the moment I feel like I'm in no mans land.
I will ask the pharmasist about the vitamins. The low iron and b12 could well be making me feel crap but I am worrying about what's causing it as I've got these stomach and bowel issues.
Thanks for taking the time to reply and for the helpful advice as always.xxxx
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Tc the low iron/b12 could just be your gut is rubbish at absorbing things especially if you have things like ibs. I have my b12 by jabs regularly as they know I just can't seem to absorb through my ibs stomach and I use skin sprays for as much as I can because of this or under tongue vitamins/minerals that melt x
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Hi birdy and CG.
I was thinking the utro will be out of my system by now too. I dont know whether to start it again.
My b12 and folic were low a few months back and doc gave me tabs. The levels went up on them into the low side of normal but obviously I havent maintained that and now iron too. I just found some leftover cynocolbalamin so I've started them .. It may be caused by my tummy issues which .might also be causing the back and pelvic pain. I just feel something isnt right aside from hormones. I'm back in bed and I only got up at 12.30. I just cant get myself together at all.
Can I ask a personal question please? With IBS does it feel like you have pressure in back passage.and anus As though you need to open bowels although you actually dont. I'm not constipated. 3 or 4 times in the morning and it's a lot. But I "feel" constipated.
Xx
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When I say Utrogestan takes a week to come out of my system what I mean is it takes that long to mentally feel my usual self again. So although it may have technically left my system it's like receptors in my brain take a while to recover. A bit like withdrawing from anti-depressants for anyone who has ever done that journey - it takes a while for your brain to recover. It's just a theory as why you're feeling so rubbish Tc. And also incidentally the reason I've promised myself I'm not taking Utrogestan again, I just can't face it. I've had a delay re my jaydess fitting but it's now booked and I'm hopeful this will be the solution for me (I know Orangefoot is having great success with it) x
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Birdy. I'm wondering about that too. The womens physio did a vaginal exam and said no prolapse but i think she meant the bladder and I was laying down when she did it.. When I stand I think I can feel something dragging down.. Even sometimes when laying down the vagifem applicator seems to be blocked from going further than an inch or so in and then and I realy have to push past something and wriggle it about to get it in. And it hurts. It's not dryness as that's improved with vagifem and it's not tightness. A finger seems to move in o.k but the slim vagifem applicator just hits it. Maybe she wasnt looking for bowel or maybe it was O.K the day she examined me. She even said herself in the class sometimes it's more easily felt than others. She said my pelvic floor strength wasnt terribly weak. It was average.
Maybe something happened during my op, I just dont know if it is the bowel pressing into vaginal wall. If it is I guess that wouldnt help the bladder either. Maybe when I have my colonoscopy they will be able to tell.
I sound like I'm being a hyperchondriac but I'm not looking for things. They are all realy happening and all at the same time. I guess I must have several different things going on. I just wish some doc would take a more holistic approach to find answers. I feel like different symptoms are being put into separate boxes by different docs when they might well be linked.
I just want to unravel it all so I know what is causing what. I feel like im getting nowhere and worse than that things are actually deteriorating.
Sorry for being so self involved. I'm just at my wits end with it all.
Perin. I see what you mean. Sorry you've had a delay in the jaydess. I hope you find good results from it as orangefoot has.
Xx
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Thank you so much birdy. I've started the b12 I found. The physio did say "you dont want to let go" when I squeezed and stressed that I must allow time to relax muscles between the squeezing exercises so maybe pelvic tightness might be a factor although she didnt say that.
Do you do pelvic excersises. I remember reading they can make tightness worse.
I've had a horrid weekend birds. I tried to stay in but had to see family. Everyone noticed and was saying "what's wrong with you" but I thought "where do I start". So I just said "nothing I'm fine" but I'm far from it. Keep realising I've got tears rolling down my cheeks. I just feel horrible
I'm going to try to get emergency docs appointment tomoro. After my useless appointment last week I think I need a second opinion.
Thanks for sticking with me on this thread ladies. It means a lot to be able to say how I feel and get some much needed reassurance and advice.
Much love to you allxxxx
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Hi Tc. I'm so sorry you are suffering like this at the moment. This meno stuff really sucks doesn't it 😞 I'm not up on all this stuff really so can only try and help from my own experiences so far. I tried Estradot patches for quite a few months alongside Utrogestan and it didn't work for me. I really wanted it to because I've tried so many different regimes but I felt so ill in the end, I had to give up on it, reluctantly. I tried it cyclically to start with but as I was having quite a dip when I finished the Utrogestan, I tried it continually but didn't feel any better. I also tried different doses of Estradot but again, saw no improvement. My thoughts were that I wasn't absorbing and I'm wondering if this could be the same for you ? Sorry, I can't recall if you have tried other regimes but would this be a possibility for you ? This would be a way of getting out of having to tell your GP that you've changing doses if you said it just wasn't working for you and you wanted to try a completely different regime ? To be honest though, I would try and change your doctor if at all possible because she sounds totally unsympathetic and that's not what you need when you are desperate for help.
Regarding your post about IBS, now this is something I have a lot of experience of as have suffered for years. I have always thought mine was worse at certain times in my cycle. I remember my mum taking me to the doctors when I was in my teens because I either couldn't go to the loo or I was going too much. In those days (I'm 64 now) IBS wasn't heard of and it's only in later years, after many tests, I was diagnosed. I think the whole thing with IBS is that it can show itself in different ways in different people so, in my opinion, the discomfort you are suffering could well be down to IBS. Again though, you need help from your GP and it doesn't sound as though you are going to get it from your current doctor. I remember years ago after seeing one particular doctor about stomach issues, he said something like ‘what do you want me do, take your stomach out'. Stupid man !! Needless to say I never went to see him again 😡
It sounds from your posts Tc that you've got yourself in a bit of a pickle with it all and you need some help, support and understanding from your doctors which is what you deserve so please do try to see another doctor.
Sending you much love 💕 and keep us updated.
Rosie63 x
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A bit of a pickle indeed rosie.
A different gp had already referred me for endoscopy and colonoscopy which I'm having on 21zt. Hopefully might get some answers.
About the absorption. I was reading up C &W info and I can see why the meno nurse told me to go there. They can fit an implant for women who have tried other methods and had absorption issues. interestingly they say the target range on the implant post meno is between 300 and 600 pml which kinda kicks my docs "129 is normal even on HRT " theory to the kerb. I am seeing a different gp next week and I'm determined to get a referral there. If they still refuse I'm going to take it further.
Thanks so much for taking the time to reply to me xxx
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Hiya ladies. I've been so low the last couple of weeks I've barely given my HRT a second thought.
But I've just realised I've been off utrogestan for 3 weeks now. I've noticed no difference and in fact tiredness and depression have been at an all time worse in the last couple. so I guess my symptoms mighte been due to my other current health issues.
Still no bleed.but
I feel that I must be finally getting some eastrogen as my breasts are bigger and firmer. They are sore but I'm seeing it as a sign I'm absorbing at least something. Maybe I'm being a bit naive seeing it as a good sign when I might be storing up trouble breast wise
I'm on 150 patches.
I dont see gynae til end of month. But Im not sure if I should restart before then as I dont know if by then what will be 6 weeks unaposed eastrogen is too long.
I'm glad I stopped it as I've been able to rule it out to some extent but I dont want to keep playing around with things myself at the risk of increasing my risk of serious possible side effects. Which is in the back of my mind having gone "off piste" so to speak.
I think I should leave my eastrogen as it is til results of blood test So my dilemma is to restart or not to restart. I feel whatever I restart with I should probably stick with for a while to gain some sort of stability so I've also got to decide between cyclical and continous. Cyclical would mean 200mg which I'm fearful could ramp up my fatigue and depression. Should I expect a bleed when I restart?
The great progesterone dilemma!!
Xx
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I don't think 6 weeks will be a problem. I have a natural 6 week cycle so have continued this on HRT(still peri and it causes fewer problems this way). 150 is a high dose though so I'd be reluctant to leave it much longer without gp support. Some people in meno use a longer cycle.
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Hey TC - I run a 28 day gel and 12 day utro cycle. It has only got so in the last 2 months I can manage 12 days Utro. When I started I could only manage 7 and then it went to 10 and last month I did 12. I have left it a total of 5 weeks on the gel only once when I was going away on a trip. I am post meno and no way can I take continuous utro. I know therearae women like Sheila99 who have been doing 6 weeks on gel only but I don't think I would leave it much longer than 6 weeks on gel only.
I'm not sure about "Gp support" - my experience has been that if we tell them we are doing anything that they consider "out of the ordinary" they tend to freak.
What I would say though is, when I go for a check up I will ask for a scan but my body isn't doing anything odd, it's working to the cycle when I stop 200mg utro I bleed for 3/4days regular as clockwork. I think there are enough of us on longer cycles 6 - 8 weeks gel only for it to be safe enough. I have to agree to disagree with Birdy though ;D (no offence Birdy) I wouldn't go a whoe 3 months on gel only and then try Utro - 12 weeks seems too long to me.
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Thank you ladies. It's good to hear different opinions and experience.
On recent experience I now dont think utrogestan was the root cause, although it may have contributed.
Ithe last couple weeks have been particularly hellish. I started taking testogel 3 weeks ago every day. But I dont think this would cause worsening depression and fatigue. It's supposed to help both.
As you know I have other health issues now which are confusing the situation. So maybe I should just settle on a routine and stick with it a while.
As I've never experienced meno without hrt I actually dont know if I would be better not on it, it would seem some ladies feel they are. but then I might just fall right through the bottom of the pit which is far more scary. So I realy want to give it a fair shot.
I think possibly suddenly going onto 200 might be a bit of a shock to the system. So I guess I might have to conti 100 again.
Thanks for taking the time to reply. Always much appreciated.xxx
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Sorry to bump this thread and risk rehashing old ground lots of you ladies have kindly answered my questions re utrogestan in the past but then I wasnt sure if it was causing issues and now I am. I think I can safely say for sure now that I cant tolerate conti.
After my month long hiatus from 100 conti I said I thought it maybe wasnt the main culprit but I've changed my mind!!
3 weeks back on it and I'm back on the progesterone ride and I want to get off.
Tiredness, low grade headache, nausea, upset tummy worsening night sweats/ flushes.and worst of all low mood and depressive thoughts.
My e levels have fallen and are under 200 so the gynae said I can do 7 days. Or 12 days.
So I'd like a second opinion on my own thoughts of what to do next please.
I was o.k on the first 10 days and symptoms started to creep back over the next 2 or 3 and sudden sharp worsening after that til now (21 days). So. Going by that I'm thinking 12 days might still be too long as symptoms appeared at 10. Although not terribly bad for another couple of days. I could probably stand the slight worsening between days 10 and 12 but I'm assuming the dose will need to be 200 instead of 100 so any effect might be doubled. Does double dose mean double symptoms. If it does then even 12 days might be too much for me.
I've had 3 weeks worth of 100 in the last 2 months but eastrogen is low and no bleed so I guess it's safe. But I've increased to 2x100 e patch. The doc thinks I'm on 150 so said 7 days although "controversia in some circles" l is an option.
I know I should probably try 12 x 200 first but the symptoms are so debilitating and I had just started to feel a little better before this after having a breakdown with anxiety a few weeks ago. so depression creeping back in makes me fearful. Especially with how quickly it can get to unmanageable level.
How to make the switch? If I'm going to do 7
Should I stop taking it tonight and then reintroduce 200mg in 23 days? or increase to 200 now for 7 days. I must admit the thought of increasing right now is daunting as Im already at that point of "no more. Make it stop" which I know many of you are familiar with and I actually dread even taking another night of 100.tonight.
Any thoughts much appreciated. It's impossible to contact the gynae and I've been discharged from the clinic now anyway whilst awaiting referral to c and w and as far as my gp goes I might as well ask my cat!!
. I now realise that if anything is going to stop me taking HRT altogether it's gonna be the intolerable progesterone side effects so I realy need to find a solution as my gynae said she is "absolutely positive" I will feel better with more E in my system and Iim hoping with all my heart that shes right so I dont want to give up yet.
Any help very much appreciated ladies.
Much love to all xxx
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I'm not an expert so you may get better replies. If it was me I would stop utro now and go on a long (3 month) cycle. The lining depends on how much you absorb not the strength of the patch and as you don't absorb well I don't think you're in any more danger than the rest of us. 12 days of 200 would be ideal but not of you get suicidal. Can you tell when it's building up and stop before it gets too bad? If you're unable take it for 10 days or don't have a proper bleed I would go for a scan privately after a year if your gp won't send you for one.
I have a natural 6 week cycle and my lining was still after 40 years so I personally don't think there's a need to stick to 28 days.
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Thank you sheila. Yes I can now tell. I know I cant take it another night. I now understand when ladies have said that. I just cant risk it again.
Thank you for sharing your experience with me it's so helpful :foryou:
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Hi Tc - I was where you are last August. Exactly where you are writing a post called "screaming inside"! So I immediately stopped my continuous progesterone and went a clear 28 days (4 weeks) without any. In fact I was so bad and the ladies here said stop1 I think it was 5 weeks before I started with utro again. Then I reintroduced it and started counting. The first month I only managed 7 days. Then I built to 9 and so on. I have been running a 28 + 7/9/12 days. It has taken me since last August to get to being able to go to 12 days without falling down a hole. It seems I have had to build up to it. It is only the last 3 months I have managed 12 days. The longer cycle 28 days before starting Utro at 200mg seems to work for me.
I am 10 months in and it has taken this long to get control of everything and to work out what I can do without feeling awful.
I have never dropped to 100mg but so I can't say for certain but I wouldn't assume that twice the dose means twice the problems? Just stop and go to a cycle - I did what the ladies here said and I have been on the right track ever since.
I agree with Sheila - get scanned once a year. That is what I plan to do and as you know I have been so bad I will not let anyone tell me what "I should be doing". Start with 28 oestrogen + 7 days utro and see what happens. Keep to this for 3 months and then if you can extend past 28 days then so be it just like Sheila says. Good Luck
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Thanks lady.
Its realy helpful to hear that. building up your tolerance makes so much sense.
The gynae did say if I go to 7 days I will need to be scanned regularly.
I stopped it last night. I'm going to try what you and sheila have suggested and when I go back on it do 7 days at 200. It realy does seem it's like poison to some of us.
I remember you were suffering terribly when I first joined forum back in October I'm so glad you finally got it sorted.
Much love xxxx