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[Mary G]

Stellajane, thank you.  Of course everyone knows I'm not promoting BHRT, I am just sharing my experience with others in the hope it can help someone in the same desperate situation as I was 18 months ago. 

How many more times, bespoke progesterone is a last resort and only for women who have exhausted all progesterone options.

Any attempt to gag me when my experience could offer a much needed life line to another woman is verging on cruel.

Still no answers to my question.  What is the NHS solution for me?   A self funded hysterectomy perhaps?  Anyone?

Careful everyone, I think this is a cynical attempt to provoke controversy and get the thread closed down.

[Ladybt28]

I'll answer you MaryG - in my opinion,to be honest having exhausted the NHS options I would agree there was not NHS alternative except for a hysterectomy or the "unregulated channels".  It was your choice, as is everyones!

In my view its simple, here cannot be one rule for posting on "regulated hormones" and another for "bespoke hormones".  none of us are doctors (well some might be and others have sciency occupations which puts themin slightly advantageous position  ) and the opening introduction to the forum and forum rules state things about that but really when any of us post here, it is based on our own experiences and information gained elsewhere.  The majority of it is "experienced based".  I can see no reason why any of this should be viewed as controversial, nor why anyone who has experience of these treatments should hide themselves away as long as it is posted in an appropriate manner and in a correct section of the forum.

Despite the differences of opinion I would stake my life on it that not one of the people with that experience is going to be suggesting to a "newbie" forum member running out of options on progesterone that their first reply or even their 5th reply would be to try "unregulated" "bespoke" treatment or what ever you want to call it. 

I really think we need to put this in perspective a little more and look at the wider picture because the whole thing seems to being discussed on a micro manage basis...(sorry peeps, I'm not sure if you know what I mean..I probably haven't worded that right. 

Information is power, others experiences help but at the end of the day what each person does with that information and experience is absolutely down to them.  I believe irresponsible posters on this forum are shut down by others anyway and I can say personally I dont think any of this discussion is "irresponsible" in any way.  There are plenty of things I wish I had known years ago that would have made my life infinitely better but I didnt have the opportunity to find out.  If I had done anything on the basis of someone elses say so without the proper research when I did find out, then well...that's down to me isn't it?

I'm in the "post away on all your experiences as long as you do it responsibly" camp including bhrt, bespoke progesterone, cbd oil, menopace, anything else you can get in H&B, yams, essential oils, black cohash yada yada yada.  When you read it, you don't have to agree with it, nor do you have to take it up immediately but if you don't know, you don't know? - what I mean is why should menopausal women only hear about what is considered NHS mainstream? 

[CLKD]

I read an article yesterday in a magazine [name escapes me] which when I have energy, I will begin another thread on ........ the whole tone annoyed me   

[dangermouse]

it's been an interesting thread and some great posts!

That was my point, that there seems to be an over reaction against compounded products on the BMS website (which then filters down) and I was trying to understand why that might be.

It gives the impression that compounded pharmacies are, at best, a shady business and, at worst, dangerous. Here is where we can redress that balance by citing our own positive experiences that prove this is simply not the case.

All private scans and blood tests are expensive, whether you have them with Prof Studd or a Gluck type clinic, but some GPs (including my own) let me have my blood tests done on the NHS.

The more I think about it, the more I'm convinced that the NHS would not consider 50mg progesterone doses due to the additional scans needed to check the womb. They simply cannot afford this.

[dazned]

I must admit " I did post late " on the thread , that doesn't mean I hadn't read it all . The reason I posted " late "was that phrase made me annoyed, imagined or otherwise.
I don't post now as I'm no longer on HRT but take an anti anxiety tablet which also doesn't generally go down well here so I keep quiet about my experience unless anyone specifically ask about ADs.

[GypsyRoseLee]

Dazned - please keep posting, you are such a wealth of information. I have always taken an AD alongside my HRT. When I saw Prof Studd he told me that sometimes women need both!

[CLKD]

dangermouse - would they even consider it? regardless of expense.  Eventually surely; once a lady gets her HRT sorted, she will not be taking up as much time in the future!

Dazned - what ever works!  Without my ADs and anti-anxiety meds I wouldn't be here!

[Mary G]

There are a lot of very interesting points to pick up on here.

Ladybt28, I think you are right.  I imagine the NHS would tell me they could not help me but I doubt they would fund a hysterectomy for HRT purposes so I would be forced to ditch it completely.  I know a lot of women travel to Spain for a hysterectomy because it is much cheaper.

dangermouse, I believe most clinics accept NHS blood test results which can save a lot of money.  In my view, the NHS overload women with progesterone as a 'catch all' and seem to work on worst case scenario and then add a bit on top for good measure.   Many women on here seem to be prescribed low doses of oestrogen with very high doses of progesterone which often results in virtually no symptom control and horrendous side effects from the progesterone component.  Even if there was a 50mg progesterone dose, chances are, they would not prescribe enough oestrogen to control symptoms.

GRL, agreed, there are many women who need ADs alongside HRT and Professor Studd touched upon that with me.   I think he usually likes to start off with HRT and then filter in ADs as necessary.   

Dazned, all experiences have equal value and you should not feel uncomfortable discussing your medication on here.   As well as making an interesting contribution to MM, you might be able to help others in a similar situation to yourself.   

Stellajane, the lack of uterine scans is so shortsighted and not just from an HRT point of view.   What about checking ovaries?   What about the many women who do not use HRT who end up with endometrial hyperplasia?

Someone I used to work with years ago had cervical cancer in her early 40s.  They operated but refused to give her a hysterectomy - she didn't have any uterine scans after surgery either.   Ten years later, she started bleeding very heavily, finally had a scan and they discovered a tumour on the cervix.   She had that removed (still no hysterectomy) but a few years later, it spread and she died in her mid 50s.  I think regular scans could have saved her life.

[CLKD]

As an aside: the Surgeon who under took my breast surgery also suggested that if ladies had hysterectomy, he always remove ovaries in the same procedure: " to save time later " were his words. 

He also told me that "None of my ladies have had womb problems with 'tamoxifen'" but that was what killed my friend  .  Fortunately I was unable to tolerate it. 

Keep sharing Girls, keep sharing 

[Tc]

In respect of  funding for hysterectomy on the NHS.  I wonder if there is a bit of a discrepancy  around this issue. .  My ovaries were both removed even though there was a cyst only on one.  The other was healthy but I wasnt offered the option to keep it.. I was later told this was for  "prophylactic" reasons. The fact I dont agree with that reasoning for my own personal situation is irrelevant here but...I was told my womb would not be removed at the same time as it was healthy but if I wished they would take it out at the same time.

[CLKD]

What did you sign on the Consent Form?  The Surgeon should have explained what he was planning on doing, what he would do with your permission and what he would do if there was an emergency situation ............

[Tc]

They explained if they found cancer that they would proceed to a "stageing" process which I had to consent. 

 I said I wanted to keep uterus so the consent was for bilateral salipingo oopherectomy.  I  think it might not be relevant here but to answer your question CLKD,  I signed as it was the only option given to me and the cyst needed to come out.   Because they saw me as being "around menopause". They  dont attempt to remove large dermoids without taking the ovary peri and post meno and  it is considered standard to remove both ovaries post meno for prophylactic reasons and to negate the need for further surgery.  The fact that I wasnt post meno is where I feel it was the wrong decision. And the risk of future ovary issues with the good ovary should have been weighed against the risks of surgical menopause. It wasnt.  I dont know how much being under  a gynae oncologist influences such decisions,. They possibly view things from a different angle.

Xx

[CLKD]

Damned if you did, damned if you hadn't done?   

[Tc]

Yes my friend.Sadly it is so.

The point I'm making about the hysterectomy option being discussed here  is that  in my case it was seen as o.k, even good practice to remove a healthy ovary but not to remove the healthy uterus. But, if I had requested it they would have removed it without my needing to even give  any reason . which seems out of step with the refusal to consider hysterectomy for progesterone intolerance.
X

[dangermouse]

They may think theyll do it whilst in there to save possible expense of a second op later?

My friend had hysterectomy with womb removed (for very large fibroid) but they said theyd keep ovaries but may need second op if any issues. She didnt have any ovary issues so still has them but she did have to have a bowel resection 3 years later due to the removed organs causing the bowel structure to fall low and create a large cyst.