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[Peacegirl]

Just saw trainee specialist and she said scans won't detect this so I must take the full dose of progesterone no matter what.  She said they only give an indication??? I didn't explore this in any more detail as I felt she didn't listen to me and seemed overly risk-averse.

I am switching to Provera due to Utrogestan issues but I must admit I was thinking that if the full dose makes me feel as ill as the Utro did, I might decide halve it and have scans.

Seriously I don't want to risk endometriosis obviously but is the choice really between having unmanageable meno symptoms or feeling like Ive got flu or the time due to HRT *big sigh*. It was all going so well, I can't tell you how much better my life has been the last 3 months except that hair loss has kicked in again and I don't know if I'm willing to go bald. 

[dahliagirl]

From what I understand, you need laparoscopy to be sure.

I have a friend who has had a hysterectomy and other ops to remove all of it and now has the lowest dose patch to keep symptoms at bay and in spite of having had quite extensive endometriosis has had no problems.  So it doesn't always come back 

[Peacegirl]

Hi thanks Dahila, I'm confused I though scans could measure womb thickness and that is a good indicator of risk?

[br350]

Ultrasounds of womb don't detect endometriosis.  It can only be definitely diagnosed via laparoscopy. I've had 2 laps - 1st to diagnose, the other for treatment.  Endometriosis can appear in the pelvic cavity, on the ovaries or fallopian tubes, on the bowel, behind the uterus, on the bladder, etc.  It really isn't 'in' the uterus, per se.  Mine was behind my uterus (the cul-de-sac) and some was in the pelvic cavity.  An ultrasound isn't going to help.  I went to specialist who treat endometriosis as my general practitioners were useless in this regard.  Their info was out of date and not accurate.  As dahliagirl there shouldn't be too much worry about it flaring as long as you use low-dose HRT.  My GYN said as long as dose is 0.05 patch or preferably lower it should be okay.  Of course, everyone is different, but hopefully you'll be just fine!

[Peacegirl]

Thanks tovahfell, Thanks for the info, really interesting to read your experiences and I learned a couple of things too.  I posted this because Ive been taking half my prescribed dose (100mg a day continuous) of Utrogestan because the full dose made me so ill. I also take half the estrogel I'm allowed to take (2 pumps) so I figure this is ok. I'm aware that some women take a lower dose of progesterone and because there is a risk of womb-lining thickening doing this, they have scans to measure the thickness. This is normal practice in some countries but the specialist I saw today says she won't prescribe me on this basis even if I pay for my own scans
I'm now going to try provera but if I get side effects that impact my life too much (believe me I don't expect perfect) I guess I'll have to see Professor Studd or someone who will actually listen to me the patient!

Feeling a bit frustrated today!

[br350]

peacegirl, my understanding is that if you are on low dose HRT (say a 0.05 patch or lower) you should not need any more than 100mg Utrogestan per day.  When I use the 0.0375 patch, I have to take 200mg for only 10 days a month since I am not using it daily.  I get barely any bleed...just some pink/brown for a couple days.  My GYN said this tells her my lining is very thin and is not building or being stimulated.  I think the 200mg/day continual dosage generally is reserved for those using higher estradiol levels. I could never tolerate using that high of a dose of progesterone daily and don't blame you!!   

That being said, Utrogestin is not the strongest of progestins, and from what I understand, Provera is stronger and may work better for you!  Will you be taking it just part of the month?  How high a level of estradiol is 2 pumps?  I don't know the conversion of the pump dose levels to patch levels.  I have heard the pump gels have inconsistent absorption rates compared to patches but other than that I am not familiar with how the doses compare.   In the U.S. they do not regularly schedule scans unless there are problems or the doctor feels it is really necessary.   

[Peacegirl]

Hi Tovahfell,  I really really don't want a stronger progesterone - the utrogestan at 100mg (which is what I was prescribed) a day knocked me off my feet. I don't think you can convert 2 pumps of gel but I used to use an evorel 50 patch twice a week and it was just about enough to hold my symptoms. I changed because the norethisterone in the progesterone patch made me hair fall out. In some European countries utrogestan is prescribed for use on alternate days. Some women on here use it for only 12 days alternate months.  Some specialists say this is ok but my specialist says no to this.

Sorry feeling sad and a bit p***ed today following my appointment. normal service may be resumed tomorrow.

Whats the weather like there? Its been scorchio in the UK for over a week! 

[dahliagirl]

From what I understand (and I am no expert on endo or anything else) if you take the progesterone every day, then the cells that the lining proliferates from will become atrophied, so that there would be no lining.  This is probably desirable if you have endometriosis.  If you are peri-meno, you might need a bit more progesterone to achieve this because your own oestrogen levels will be going up and down.

If you take it cyclically, then the lining is allowed to proliferate during the oestrogen only phase, becomes modified when you are taking progesterone, then should slough cleanly away when you stop taking it.  This is probably not what you want if you have endometriosis as it causes a lot of pain from the proliferated tissues that are outside the womb.

[br350]

dahliagirl, that could very well be the case about the daily use.  My GYN, who knows my endometriosis history, was ok with me taking it 10 days/month only, in great part because my estradiol dose is so low.  A lot is symptom-driven: if a woman is on HRT (with endo) and is having symptoms, then it's certainly time to reassess.  If one has had surgery to remove the majority of the endo, that should help as well. Endo that was never treated, may be a different situation entirely when it comes to using HRT and wanting to keep the symptoms at bay.  Endo is a very individual disease that affects each woman so differently.  Pain can be quirky and is often related to location of lesions but not necessarily to how extensive the lesions are.  I could never do the progesterone daily and so settled on a cyclical route.  It really ends up being what the woman and her doctor can agree on and what best manages her situation the whole way around.

peacegirl, by 'stronger', I meant more potent in its intended purpose (to help with the lining) but that doesn't necessarily mean you would tolerate the Provera less.  There are some women who do better with synthetics than using the natural progesterone.  All trial and error, unfortunately.  I would consider it, as well, if need be.

I'm sorry your consultation was so frustrating.  It gets wearisome that doctors seem to just prescribe 'by the book' and are generally not willing to deviate from the set script.  In the U.S. we don't have the private vs. non-private doctor issues, so it just become a matter of finding a practitioner with reasonable knowledge, an open mind and willingness to experiment with different regimens.  I would say go privately if you can afford it and if you are committed to trying a different (less frequent) regimen of the Utrogestan.  Alternately, you could take the progesterone in the way you have suggested (every other day) and then pay privately for your own scans for peace of mind?   I don't suggest going off doctor's orders, but clearly there are many practitioners who are okay with cyclic use so insisting it be an every-single-day dosage is not necessarily the 'norm' any more these days.

I hope you can find a practitioner that will listen!!  They are out there! 

[CLKD]

Peacegirl - stick with your current regime, don't keep swapping products or your body won't know if it's riding a kite or flying a bike!  Where is your GP in all this 

The point of scans is to discover how thick the lining of the womb is, B4 treatment is started and regularly whilst the lady takes HRT.  I think it's done by a probe inserted via the vagina.  Endometriosis is diagnosed as described by ladies 'who know' .

[Peacegirl]

Thanks tovahfell and CKLD x

I'm trying provera because hair loss kicked back in, 6 weeks in and become noticeable.

[CLKD]

Is that your biggest problem?  I know our hair can define us but if you are otherwise better, why rock the boat?  If really necessary then there is a hair dresser interested in wigs for ladies with problems.  (of course, meno brain here can't remember his name but I have mentioned him here).

[Jenna]

I believe you suggested Trevor Sorbie for wigs, CLKD. 

[CLKD]

Crikey you've got a good memory .......... I think that's the man who was around cutting hair when I was very young. 

[dahliagirl]

I read somewhere that nizoral shampoo for seborrhoeic dermatitis/dandruff is good for preventing hair loss. I think it is mostly for the pattern baldness kind, where the hair follicle shrinks.  Also make sure you are not anaemic.