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Author Topic: Update from me & question.  (Read 5452 times)

GypsyRoseLee

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Update from me & question.
« on: December 06, 2017, 08:43:43 PM »

Hello All

I haven't been around again for a couple of months, so thought I'd check in.

The good news is Prof Studd's regime is still working very well and I would say I am 95% cured of the dreadful anxiety and low moods that have been so crippling since I hit the peri menopause.

I've noticed that I seem to have 7 great weeks, followed by 5-6 days of feeling inexplicably flat and on edge but it quickly goes. It's odd that it only happens every other month?

I'm on 4 pumps + testim + 100gm of Utrogestan from the 1st - 7th of each month. I don't have any problems taking Utrogestan except for a few headaches and a bit constipated. And I just get a very light withdrawal bleed on around the 12th each month.

A few months ago Prof Studd advised that my bleeds were so light because the Utrogestan was doing its job, despite my high oestrogen intake.

My GP has just voiced a bit of concern over how much Oestrogel I get through so I emailed Prof Studd to ask if I should decrease to 3 pumps now. But he said to stay on 4 and to increase to 10 days of Utrogestan. I don't mind doing this as it doesn't seem to affect me very much, just wondered why he now suggests I increase, and only because I emailed him.

As any of his ladies will know he is extremely brief in his emails and he doesn't seem inclined to elaborate. I have booked for an endometrial scan at the end of the month just to check what is going on in there, but if my lining is fine I'm not sure whether to bother increasing Utrogestan?

Just pondering really, but would welcome your very knowledgeable thoughts.
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Hurdity

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Re: Update from me & question.
« Reply #1 on: December 06, 2017, 09:00:21 PM »

Hi GypsyRoseLee - great to hear from you and so pleased you are still doing well for most of the time:)

As for your question - well it's a tricky one really. The usual advice from what I understand, is that if your lining starts to overthicken you would get unscheduled bleeding randomly at odd times - and especially it could happen almost as soon as you start the Utrogestan. In the absence of bleeding then it usually considered there is less likely to be a problem. However by the time you start bleeding it could be too late.

Great that you are having a scan because more than anything that will tell you what your uterus lining is doing and I presume you will try to arranage this to take place just after you've finished your bleed because this is when the endometrium should be at its thinnest in your cycle?

The other thing is despite using 4 pumps of estrogel have you ever had blood tests to determine your actual oestrogen levels? I know these are pretty unreliable but if you've had several over the months/years you might get an idea. What I am trying to say is it sounds like a lot but if you absorb it a bit less than some women then maybe it isn't as much as it sounds - and you just need that amount to get to whatever level suits you!

I am interested in what you say about Prof Studd. As you probably know the 7 day x 100 mg regime is much less than licensed ( which is 200 mg x 12 days every 4 weeks) so not guaranteed to keep all women's endometria thin, especially if taken orally - but for women who are progesterone intolerant and who have regular scans - this can be monitored to anticipate any potential problems as you are doing. However there is a woman on here who started HRT at a much older age - with a private specialist - she did not say who - but it was a 7 day regime as you are doing. I think she was on 75 mcg patches and in late 60's (might have been 50's I can't remember!). She hadn't been on HRT before I don't think but her lining did grow and was very early stage cancerous so it may be that Prof Studd is wanting to be more cautious?

I think the scan is the most important thing - and let's hope everything is OK. If it turns out to be thin then perhpas you can ask him again, if you prefer not to take more progesterone - provided you keep monitoring regularly?

Sorry this is probably not telling you anything you don't already know but just my first thoughts!

Let us know anyway what the outcome is and I am sure all is well!

Hurdity x
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GypsyRoseLee

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Re: Update from me & question.
« Reply #2 on: December 06, 2017, 10:27:29 PM »

Hi Hurdity, lovely to hear from you x

Unfortunately my scan is booked about 2 weeks after my withdrawal bleed will have finished, but it can't be helped. I have never had any intermittent bleeding whilst on this regime, no cramps, nothing. My bleed is light with 50/50 fresh red and oldish brown flow.

But I remember even before starting HRT my periods had become very light and only lasting 2-3 days.

We'll see what the scan shows, and I'll probably book myself an annual one, though Prof Studd didn't think it necessary if I didn't have any troublesome bleeding.
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racjen

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Re: Update from me & question.
« Reply #3 on: December 07, 2017, 06:23:47 PM »

Hi GRL, I'm so encouraged to hear that you've found a regime that has sorted out the anxiety and depression. I'm off work at the moment with the same thing, depression had been gradually building since sudden menopause but the anxiety was brought on very suddenly by progesterone and is really really horrible, currently on a low dose of amitriptyline which is helping a bit, but not enough to be able to resume normal life. I'm not even taking progesterone now, stopped a couple of weeks ago, but the anxiety is hanging around as if the switch has been turned on and won't turn off again. Maybe I need to see PRof. Studd...
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CLKD

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Re: Update from me & question.
« Reply #4 on: December 07, 2017, 07:35:27 PM »

Get the scan done and if you are OK then stick with what you know?
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Mary G

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Re: Update from me & question.
« Reply #5 on: December 07, 2017, 10:19:12 PM »

GRL, I'm pleased your regime is continuing to go so well and agree with CLKD, if the scan shows a womb lining measurement which is in line with your cycle two weeks in then stick with you current regime.   
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GypsyRoseLee

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Re: Update from me & question.
« Reply #6 on: December 08, 2017, 11:15:06 AM »

Hi Racjen

Really sorry to hear about your hormonal anxiety and progesterone intolerance, it really is the nastiest feeling isn't it.

When I tried the BCP and Femoston a couple of years ago the synthetic progesterone made me feel suicidal and that's not something I say lightly.

You might well benefit from Prof Studd's regime as I seem to have had no issues with taking Utrogestan, at all, apart from headaches. I think because I'm on a high dose of Oestrogel it sort of overrides any progesterone intolerance?

Please have hope that there are combinations of HRT out there which will really help. It's a painfully slow process though and even when you find the right regime it can take months to fully kick in.
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GypsyRoseLee

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Re: Update from me & question.
« Reply #7 on: December 08, 2017, 11:19:07 AM »

Hi CLKD and MaryG, lovely to see you.

I completely agree, so long as my endometrium is within normal parameters then I don't think it necessary to increase Utrogestan. God knows I've been to Hell and back finding something that works so really don't want to rock the boat.

I am still so disheartened by how few clinicians understand how crippling hormonal anxiety and depression is.
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CLKD

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Re: Update from me & question.
« Reply #8 on: December 08, 2017, 01:20:59 PM »

You have had a long haul to get where you are.  Anxiety and depression are difficult enough to deal with, I know, I've been there ..........
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Cassie

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Re: Update from me & question.
« Reply #9 on: December 08, 2017, 01:56:26 PM »

If it aint broke dont fix it. Stay as you are and see what the scan says. Re the lady whose lining had grown and had become pre cancerous one cannot say for sure that it was due to the fact that she was using short term Progesterone, could have been one of those ladies who was destined for endometrial problems, nonetheless it is adviseable to have regular scans and I would guess a blood test as well considering you are taking a good helping of gel. All the best.
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racjen

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Re: Update from me & question.
« Reply #10 on: December 08, 2017, 04:46:58 PM »

Thanks so much for your reply GRL, I really was beginning to think I'm the only person in the world who suffers from this awful awful anxiety, which I know is hormone related. And as you say, it's nigh on impossible to get doctors to understand how absolutely bloody awful it is. Can you trace at what point it started to improve for you? I'm on a high dose of Evorel (currently 150) and my estrogen level is rising, but I suspect it needs to be much much higher than 245 to make any difference to mood. So I guess I just have to sit tight and wait. But I can't work at the moment and I've already been off for 8 months for cancer treatment, so I really need to see an improvement soon.
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GypsyRoseLee

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Re: Update from me & question.
« Reply #11 on: December 08, 2017, 06:32:42 PM »

Hi Racjen, you are very welcome.

If that is your oestrogen level that is really quite low. When mine was 305pmol Prof Studd considered that low. I know he likes his ladies to have somewhere around 500-800 pmol. But remember everyone's oestrogen needs are different, and some women might feel fine with a level of 245. But I would guess that yes, you really will need a much higher level in order to combat the anxiety.

I suspect that women who are severely progesterone intolerant (like us) have produced much higher levels of oestrogen since puberty and consequently need much higher levels in menopause to feel okay. This is just a private theory of mine by the way.

I started on 3 pumps of Oestrogel but after 2.5 months there was no improvement. So Prof Studd advised I increased to 4 pumps. I'm not exaggerating when I say that within 8 hours of adding the extra pump I felt my mood and anxiety start to shift a little (prior to this I had endured the most awful deadening depression and crippling anxiety for nearly four months, resulting in me being signed off work and being visited by a CPN on a weekly basis. I was THAT bad).

What followed was several months of increasingly longer runs of 'good' days but still plenty of dark days where I really struggled. But I was able to return to work within 4 weeks of upping my dose. For the last year I have had only a total of perhaps 6 weeks which have been 'dark' but I can soldier through them because I know they won't last long. The rest of the time I feel GOOD, better than I have done in years and years. I feel much more open to new things, much more relaxed, more buoyant etc.

I honestly never thought I would ever feel like this again. It feels like a miracle.

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Salad

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Re: Update from me & question.
« Reply #12 on: December 08, 2017, 07:09:52 PM »

Hi Racjen, you are very welcome.
If that is your oestrogen level that is really quite low. When mine was 305pmol Prof Studd considered that low. I know he likes his ladies to have somewhere around 500-800 pmol. But remember everyone's oestrogen needs are different, and some women might feel fine with a level of 245. But I would guess that yes, you really will need a much higher level in order to combat the anxiety.


Great to hear you're doing well GypsyRoseLee- I agree with the advice that if the regime is working and you are feeling good then carry on as you are.

I also liked reading your statement about the preferred level 500-800 mmol as I have just managed to get my level from 195 using Estradot 100 plus 3 pumps of gel to 875 using Estradot 200 mcg plus gel. I'm finally starting to feel well  :banana:
Luckily my GP is willing to support my quest  ;D
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GypsyRoseLee

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Re: Update from me & question.
« Reply #13 on: December 08, 2017, 07:29:24 PM »

That's so good to hear Salad.

I do know that Prof Studd has patients who need levels of 1000+pmol in order to feel normal again.

I have no idea what my level is now as I haven't had any bloods done since starting on 4 pumps.
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Hurdity

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Re: Update from me & question.
« Reply #14 on: December 08, 2017, 08:25:51 PM »

It is odd how different we all are and I suspect also for those without ovaries the situation is different again and perhaps those who have suffered terribly from hormonal depression or extreme pms - maybe needing a higher dose to feel good? eg I just had normal pms in my fertile years and I know my oestrogen levels on HRT are somewhere in the low 200's (well they were last time measured although I've increased my patch a tiny bit since then) and I feel fine - so it isn't levels per se but symptoms combined with levels so if you are feeling OK then it doesn't matter what your level is beyond a minimum needed for oestoprosis prevention). If you are not feeling OK and your levels are in the lower end of the usual menstrual range - then they might be deemed low for you.

I know that for hormonal depression ( Prof Studd's speciality particularly) he suggests that very high oestrogen levels are needed to feel anywhere near normal.

By the way GypsyRoseLee - back to what you said earlier about your scan and the timing - will you be taking the progesterone then or is it just before? The thing is it is likely to be much thicker than the usualy tolerated thickness but hopefully the staff doing it (connected to the Studd practice?) will take this into account when assessing you? I don't suppose you are able to change the date? From what I recall the lining is at its thickest at the end of the secretory stage ( ie end of prog phase) - but I'm too tired to look it up now!

I think I'm rambling!

In your case - if you are feeling well then your levels are fine! :)

Hurdity x
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