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[jackie75]

I am 59 yrs old and have been on HRT for the past 18 months of Estradot patches 75mcg continuous and 100mg of Utrogestan for 7 days at the beginning of every month. This treatment was  prescribed by a well known private gynaecologist.  For the last 6 months I have had minimal, but erratic bleeding.  The doctor gave me an ultrasound, which showed a thickened endometrium of 11.8mm and he took a pipelle biopsy, which showed benign hyperplasia (overgrowth) and a benign polyp.  As a result, he increased the Utrogestan to 200mg x 10 days per month.  My first bleed on this was heavy and went on for nearly the whole month.  The second months bleed was lighter, but has continued from day 11 to now day 25.  I saw my GP to request an annual ultrasound for another issue and also another transvaginal ultrasound.  This showed an endometrial thickness of 21.3mm.  As a result, even though I showed my GP the biopsy results, which were negative from June 17, she said she has no option, but to refer me to a gynae/oncologist under the 2 week suspected cancer protocol.  The private consultant gynaecologist does not seem concerned as has asked me to take the 200mg of Utrogestan for 14 days at the beginning of each month, which he said will bring about a regular bleed, he will then carry out another ultrasound in January 18 to measure the endometrium.
Has anyone else experienced a similar situation and should I be worried?  Thank you.

[Taz2]

Hi jackie75. Just wanted to welcome you really. I'm sure someone will be along with advice soon but I had to have scans etc. when my lining was 6mm so I can see how, even though in June your biopsy was ok, your GP has really no option but to refer you as your lining is continuing to increase. Benign hyperplasia is unlikely to turn cancerous from what I've read on the Patient UK site which is good news obviously. I see that the mirena coil is recommended as treatment? https://patient.info/health/endometrial-hyperplasia-leaflet

Taz x 

[jackie75]

Thanks Taz2 for your support and reassurance.  I feel so much better on the HRT in many ways, but I am of course worried about this situation.

[Hurdity]

Hi jackie75

  from me too.

If you are taking HRT cyclically then the lining of the endometrium will vary throughout the cycle and will depend on when in your cycle the scan was taken. The best time to scan is just after a bleed to determine whether the lining has been fully shed. So a lining of 11.8 mm just before your bleed may well be OK. However a lining of 21 mm does sound thick by any standards. 

Off the top of my head there are 4 types of hyperplasia - simple and  complex, each with and without atypia (cells gone awry) and  as far as I known it's only the ones with atypia that can lead to cancer ( would need to check this - probably Taz's link!), although it is important to keep the lining within recommended limits to minimise this possibility.

Unfortunately taking progesterone ( orally or vaginally?) for only 7 days per calendar month is so much lower than the licensed dose that it is inevitable that it will not protect the lining of some women. Sounds like the Studd regime to me. As I expect you know the licensed dose is 200 mg x 12 days every 28 days not 7 days x 100 mg every calendar month!!! You are also on a medium/high dose of oestrogen too. Research has shown the risk of hyperplasia on 7 days ( per 28) which decreases markedly at 10 days and more or less eliminated at 12 days. This is why women should not experiment with reduced doses - but you are doing it under medical supervision which is what all women should be doing!

As a matter of interest were you on HRT before starting HRT and/or when was your last natural period? It is quite a high dose of oestrogen to give to someone in their late 50's - but great if it suits you - just means you need more progesterone to protect your womb which is a right pain as you get older (I find)! I presume you were given this regime because you are highly progesterone intolerant and therefore could not cope on standard progesterone regimes?

The two week protocol does not usually apply if you are on cyclical HRT although with a lining that thick I can understand the need for this!

Anyway great that it sounds like there is no problem as you've had a biopsy but in your position I would want to keep up with the higher/longer dose of progesterone that you have been prescribed, if you can. You are likely to experience more and heavier bleeding until the lining reduces and hopefully then it can be maintained with normal limits?

If it helps to know - I am mid 60's and have been on HRT for 10 + years - Estradot 50 mcg (recently increased a teeny bit) and utrogestan 12 days x 200mg vaginally on 6-8 week cycle - which is enough to protect my womb - and I feel fine

All the best with your investigations!

Hurdity x

[jackie75]

Hi Hurdity,. Thank you for welcoming me and for your very interesting thoughts.  Your correct about whose protocol it is.  I haven't taken HRT prior to this.  My last natural period was when I was 53. I wanted to use the bio identical hormones for extreme vaginal dryness, which made intercourse so painful and virtually impossible; and also to try and aid my once thick and shiney hair, which has thinned considerably and is just so brittle.  I have never really experienced hot flashes.  The initial regime was 1 pump of oestrogel and 100mg Utrogesten X 7 days at the beginning of each month.  I couldn't get on with the gel and asked to change to the Estradot patches.  I was put on an initial 100 mcg patch, then asked to go lower to 50mcg.  However, on the lower dose, the vaginal dryness started to creep back.  I find that the 75mcg, allows pain free intimacy with my husband.
Would you mind clarifying what you mean by 6-8 week cycle please and also what you use to administer the Utrogesten capsules.  The reason I ask about the capsules, is that the Professor said I can use my existing 100mg oral capsules vaginally and just double the dose, but I don't have an applicator and have to insert them using my finger.  However, I worry that I might not be inserting them high enough.  I am grateful for your thoughts.

[Hurdity]

Hi there jackie75

Only just seen this - sorry - busy weekend!

For vaginal dryness - if you are taking systemic HRT then the usual advice is it's best to take a medium dose of systemic but then use local oestrogen which targets this area specifically rather than a higher dose of systemic oestrogen. In fact I am very surprised that you were started on this high dose of 100 mcg at 58 or so, 6 years after menopause and given the 7 days x 100 mg (?oral) utro per month. No wonder you experienced endometiral thickening - although this would not necessarily happen to everyone. It;s a completely different situation to a woman who is still having pretty regular periods and prescribed the same regime and who is producing her own oestrogen as well as a  good dose of her own progesterone after ovulation every month.

Dr Currie does not necessarily approve of this unorthodox regime and has commented accordingly. As far as I understood it, this very low dose of progesterone was supposed to be for women who were severely progesterone intolerant rather than the norm - because it is a reduced dose and can cause endometrial hyperplasia as you have found - and has to be done under supervision due to the risks.

If it were me I would want to start with  the licensed dose for a few months (if you could manage this) and then see how my endometrium behaved (in terms of bleeding) and then reduce the dose or lengthen the cycle accordingly - depending on the oestrogen dose.

re the capsules - 200 mg used to be available for cyclical HRT and was withdrawn although this dose is still available for vaginal Utrogestan used for fertility. Now the HRT ones are just 100 mg - no applicator because not licensed for vag use in UK ( absurd!). So just poke 'em up with your finger as far as they'll go and it does the job.

Re my cycle - I have been on 50 mcg patch for  10+ years ( recently increased a tiny bit due to also taking testosterone). When I was on a 28 days cycle I was using 11 days progesterone ( then Cyclogest before utrogestan was available for HRT) and stopped getting bleeds. Therefore I knew my lining wasn't building up . After a brief spell on lower dose oestrogen ( 25 mcg) which wasn't enough, I increased back to 50 mcg but knew I could try a longer cycle because of my experience with 28 day cycle. My NHS GP ( gynae specialism) was happy for me to do this. I have since had a couple of scans for one reason or another and the only time it was thicker ( around 7.5 mm I think) was because I was part-way through the cycle - so only to be expected. Scans post-bleed have been around 4.5 which is fine.

The higher the oestrogen dose the more prog you need. Personally I prefer to do the standard course ( ie 12 days) on a longer cycle than fewer days on a monthly or 28 days cycle - since as far as I understand it, the extent to which progesterone protects the endometrium is dose and duration dependent - but is not an exact science. At my age and stage ( mid 60's) the last thing I want to be worrying about is whether my womb lining is getting too thick.

You might find that 50 mcg along with Vagifem does the trick and then you might get away with a longer cycle. It depends on how long you want to be taking HRT. I intend to carry on as long as I can and as long as my health permits and I can cope with still having a bleed and buying/using tampons without publicising the fact!!!

Hope these random thoughts are helpful - it's a bit late and I'm tired now!

Hurdity x

[jackie75]

Hi Hurdity,. Thank you so much for taking the time to go into so much detail, which is really helpful.
I feel a complete novice at this really, as I still don't fully understand the protocols and the Professor can seem a bit tetchy if I ask too many questions.  So, am I right in thinking that you use the Estradot 50mcg patches continuously and then the Utrogestan 200mg capsules X 12 days every month (starting when in the month and also, how many days do you go, before repeating the Utrogestan again)?  I feel so dim asking these questions, but I just can't seem to get a handle on it for some reason.  Thanks so much.

[Hurdity]

Hi again jackie75

Sorry again - I often forget to look in this section!

Yes if oestrogen is used as HRT it is taken all the time in all preparations except one. The licensed dose for utrogestan is as you said 12 days x 200 mg per month. You don't need to count the days in between because the cycle length determines this so depending on whether you do a 28 day cycle or a calendar month - you just start the Utrogestan four weeks after you last started taking it, or if a caclendar month - then on the same date of each month (which some women find easier). If you are post-menopausal then the exact date is immaterial so for a cycle that lasts a calendar month you could choose 1st of every month to start your utrogestan. Not dim at all - is difficult to get your head round at first.

As I am on a long cycle I vary mine a bit and count backwards from when I don't want to be bleeding so it does get a bit complicated calendar-wise for me!

Hope this helps and more to the point that you see it and haven't given up on getting a response....

Hurdity x

[jackie75]

Hi Hurdity,. Thanks so much for taking the time to reply again.  Well, I saw the NHS gynaecologist/Oncologist today and she has worried the life out of me.  Because of the 21.3mm endometrial lining, she is organising an urgent hysteroscopy and biopsy, as she said that even though my biopsy in June 17 said it is benign hyperplasia, that this is classed as pre-cancerous  She also wants to check for polyps, as the report showed tissue from a benign polyp.  Also, she wants me to have a Mirena coil, which I do not want, or a hysterectomy if there are cancerous cells.  I asked if the new regime prescribed by the professor of 200mg utrogestan X 14 days would shed the lining and she said no. I spoke to the professor today and he couldn't understand what all the fuss is about, which wasn't really helpful.  He said that the regime will shed the lining, even if it is so thick, so I am really confused now.  I am on day 8 of using the utrogestan capsules vaginally and have decided to drop the Estradot patches to 50mcg.  I am hoping that by the time the hysteroscopy appointment comes through in the next two weeks, that the lining will be thinner.  How soon after stopping the utrogestan this cycle should I expect a big bleed (although I have been bleeding lightly the whole time.?  Help please, I can't afford to be I'll, as I am caring for my parents who are both elderly and frail.  Thanks so much.

[jackie75]

Hi, Well I saw the gynae/oncologist today and she has confirmed Grade 1 endometrial cancer.  The next stage is to have an MRI for staging and then a total hysterectomy.  This might be keyhole or abdominal, as the doctor said that my vagina is atrophied with age and if keyhole is used, that once the organs are cut they are pulled out through the vagina.  She is worried that if the gap is too small, that some cancer cells could be spread.  However, abdominally she would have more control.  The doctor said not to worry too much, as it is very low grade and has been caught early.  But of course I am terrified.  I welcome any thoughts people have.  Thank you.

[Taz2]

Sorry to read of your diagnosis which must have been such a shock but it's good that it's lowgrade and caught early.

Obviously keyhole surgery is less invasive than an abdominal hysterectomy but the important thing is to remove the womb with as little damage to other areas or spread of cells. I think there may be information on the hysterectomy UK site which could be helpful.

Let us know how your scan goes.

Tax  xx

[coldethyl]

I was found to have stage 1 grade 1 womb cancer when I was diagnosed with ovarian c last year - my onc said that it was all dealt with by the radical hysterectomy I'd had anyway for oc so if you're scan shows no spread then surgery should sort it without need for radiotherapy or chemo ( radiotherapy often preferred treatment in uterine c as cells respond well to it ) - a abdominal incision would be preferred route for reasons you've been given as the fear is surgery and removal can liberate malignant cells especially an issue if adjuvant chemo not then given - my CNS said that caught early womb cancer highly treatable especially when it's low grade tumour activity as the womb acts as a walled off container - everything crossed for you x

[Hurdity]

Hi jackie75

I am so sorry also to read about your endometrial cancer diagnosis - the possibility of which we all have in mind when taking HRT and how important it is to protect against it. (Also sorry once again that I and everyone else missed your update on 2nd Nov - I do forget to look in this section when catching up).

At least it has been found early and as coldethyl says is usually easily treatable, but I can understand your worries especially given your personal circumstances with looking after your elderly parents. I hope you are able to get the help you need as far as they are concerned so that you can concentrate on your own health at this time.

Although this is not a time for apportioning blame, I do hope you have informed the private gynaecologist who prescribed this regime what has happened to you, whose attitude I agree does not sound helpful judging by your earlier post - your experience is a salutary lesson to those who advocate blanket use of the 7 day x 100 mg progesterone regime irrespective of oestrogen dose, age and menopausal stage, without regular scans.

I have no experience of surgery for hysterectomy but wishing you all the best for your forthcoming operation which I imagine will be fairly soon?

Take care

Hurdity xx

[jackie75]

Thank you all so much for your supportive and informative replies.  I have just had my MRI, which was done very quickly and the results will be reviewed in the MDT next Tuesday.  I will then be given a date for surgery.
I most certainly will be informing the private Consultant of the situation, once I have the full information.  As you say Hurdity, one size does not fit all and I am very angry and disappointed that this situation might have been avoided. 

[jackie75]

I also meant to say, healing thoughts are very welcome.  Thank you.