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Perimenopausal with fibroids and endometrial hyperplasia

(15 Posts)
Idefix Wed 18-Jan-17 09:00:27

Sorry, I think this is going to be long...

I started bleeding at the beginning of December and was referred to gynae at the end of week 3. I had bloods and internal scan and was told that I was perimenopausal - my oestrogen levels are dropping and my progesterone levels were very low. I was also told I had two small intramural fibroids and that endometrium was very thick (on the scan there was only a tiny empty space).

I was referred to hospital gynae and had a hysteroscopy and d&c and the bleeding has now stopped smile and no malignancy was found in the biopsies.

I was then seen for review by the outpatient gynae and we discussed results and options. Hospital gynae has recommended oestrogel as I am going to have a posterior Recotcele repair in a few weeks, he also advised that I am not suitable for a mirena coil. When I asked about hrt my outpatient gynae suggested I just carry on with tranexamic acid for the bleeding...

From my understanding I may end up with the hyperplasia coming back? And that this increases my risks of eventually having malignancy? Will still to continue with symptoms of perimenopause - sleeplessness, hot flushes, intermittent low mood and irritability that I have been experiencing for the last 6mths since my periods started to go awry.

I am 44 and the thought of having years of these symptoms till I am menopausal is making me feel utterly depressed.

I would love some words of wisdom sad

PollyPerky Wed 18-Jan-17 10:27:34

I think you have been treated quite badly by being misinformed.
First you need to question why you can't have the Mirena- is it a cost issue or is your uterus somehow unsuitable re. position of fibroids?
You need to ask again and even see another gynae.

If you use Oestrogel, you will need a progestogen for 10-12 days every month. This can be Norethisterone, Utrogestan or the Mirena coil. This stops the lining building up as every month you will have a 'period'.

You can't use any oestrogen without having progestogens as well.

It's actually quite normal to have a thick endometrium during peri because it's caused by irregular bleeding, so the lining builds up. it rarely becomes true hyperplasia and if it is hyperplasia that doesn't mean it's cancerous- hyperplasia is not cancer. Hyperplasia can become cancerous over many years but it's not just hyperplasia=cancer.

Idefix Wed 18-Jan-17 10:53:38

Thank you for getting back to me so quickly Polly, I was hoping you would be about smile. Thank you for confirming that this is not quite as it should be.

Sadly I won't be able to see another gynae (but will speak again to her when I see her post my rectocele) without getting a referral to mainland uk. I was surprised that she did not offer me a progesterone to balance the oestrogel, as surely this will lead to the lining thickening quite quickly as the with my low progesterone levels this added oestrogen will be very much unopposed?

I should confess I am a hcp but this very much out of my zone of knowledge, however I have done plenty of reading of NICE and RCOG guidelines...

Hospital gynae said the shape of my uterus was incompatible, the larger of the two fibroids is sitting just above where the cervix starts. I also think but this could just be me over thinking this but I have had two hysteroscopies and both times I have had complications with cervical shock and this the added delights of a tear in my cervix (caused by spasm whilst forcep was in place) that was difficult to control.

I think I will speak to GP and see if they will prescribe, not holding out hope...both GP and NP (very small practice) refused to prescribe hrt when I went in a month or so before the prolonged bleeding. Both "Interpreted " my bloods that were taken before outpatient gynae as not suggestive of perimenopause hmm.

Polly what will happen if I just take the oestrogel? They were pretty much telling me that it was just because of the rectocele surgery and post care and not related to the other findings...feel confused.

Idefix Wed 18-Jan-17 11:11:25

Sorry took a breath and reflected with just estrogen the lining will thicken doh - I knew this.

Really wish there was more training for gps and np on this area. Sadly for me the np does think she is knowledgeable.

PollyPerky Wed 18-Jan-17 12:01:46

I'm sorry you have had some rubbish treatment!

GPs - or any dr- are not allowed to prescribe oestrogen of any kind in a woman with a uterus unless they also prescribe progestogens- it's against licensing rules. The stats say that after 12 months of oestrogen-only HRT (for women with a uterus) hyperplasia occurs in 20% of women and something like 2% is cancerous. (Don't quote me on the 2nd figure- it's a while since I looked.)

I don't think nurse practitioners are the best in these cases! heard of so many wrong decisions via forums.

Just clarify one thing- the Oestrogel is in a 64 application pump. They aren't talking about Ovestin which is a very weak oestrogen cream used for vaginal atrophy? Once we had a poster who was prescribed Oestrogel for vaginal use (by a hopeless GP) who didn't know the difference.

Idefix Wed 18-Jan-17 13:20:27

Grrr you made me start to think about this and question myself in a good way (there is a language issue when I go for outpatients appt.)

I phoned the clinic and asked if my prescription was ready, they asked me what is was and my name. A nurse came to speak to me and said that the prescription was for utrogestan (which would make much more sense from the PoV of my issues with lining and not being able to have the mirena etc)

However this is not going to tackle my other symptoms. In the last 6/12 my vulva and vagina have really changed (shrunk!) piv has become so uncomfortable that we have stopped trying for the last 3/12 and this is with oddles of foreplay and plenty of lubricant sad I miss this part of my life. My other symptoms include dry eyes, bladder irritation, feelings of morning sickness during my periods and sore boobs at random points through the month - unable to find any pattern.

Okay feeling determined, will speak to surgical gynae tomorrow at pre op and see GP. Think I will print off what I found on guidelines and really push the issue.

I was under the impression that we were talking about the one you put on skin and a shorter pre-op course of vaginal to improve outcome of rectocele repair. However I am beginning to wonder how many conversations I have been happening.

Trying hard to not get scared about the surgery planned, they do have a good reputation based on what others have experienced so hoping that having to issues running concurrently and a not very knowledgeable GP isn't helping .

Thank you Polly this has really helped me to focus.

Idefix Wed 18-Jan-17 13:22:01

* having have been crossed wires/miscommunication.

PollyPerky Wed 18-Jan-17 14:17:28

curiouser and curiouser smile

If you have VA which it sounds like, it must be treated or will only get worse. You need to ask for Ovestin cream (use daily for 2 weeks then twice a week forever) or Vagifem pessaries (same regime.) Whether you use systemic HRT for the flushes etc is another issue and many women use both.

You do not need Utrogestan or anything else as well with vaginal treatment.

If they are treating you for hyperplasia per se, then the treatment (as I understand it) is either the Mirena coil or Norethisterone taken daily for 6 months. You can read about this online.

If you want to use HRT then you can use Oestrogel along with Utrogestan (10-12 days per 28 day cycle.)

Utrogestan on its own is not given for hyperplasia because it's not so 'strong' or effective as Norethisterone.

I used to use Norethisterone as part of HRT with Oestrogel, but swapped to Utrogestan 3 years ago.

Idefix Wed 18-Jan-17 14:35:05

Garghh I am confused!

I will be having words with my GP, I think he is the more approachable of my two options.

I had read that norethisterone was the conventional route where mirena was contraindicated and/or declined (looks like having this would have been an easier option if possible). I also get the feeling that this is going to be prescribed vaginally (more common where I am) which is where I think the crossed wires may have come from.

On the bright side I will be back in the uk from April so if needs be I will try to get this sorted there.

Really want the VA sorted as I think this is what led to my rectocele becoming impossible to live with (was getting sore just splinting when BO) also very sore post recent procedure with a split in my skin near my perineum/entrance of vagina.

Thank you for your in put, I feel more confident about asking more questions.

PollyPerky Wed 18-Jan-17 14:47:44

Aaaargh!

All i know is that you'd have a bit of an issue using Utrogestan vaginally at the same time as oestrogen creams etc for atrophy. I know women who do this and what they do is use Vagifem pessaries (tiny) in the morning and Utro at night (you'd have to use it at night when lying down or it would fall out.)

But if they expect you to use Utro daily for some time, it would compromise the use of vaginal oestrogen treatment.

I think you need to divide your treatment into 3:

vaginal atrophy- treatment
hyperplasia (if in fact you have it and it's not just 'normal peri' thicker lining which varies between cycles)
systemic HRT for all the peri symptoms

Idefix Thu 19-Jan-17 17:10:07

Mmm what a day! After spending hours to see hospital gynae I have a date for my repair (less than a week to go). I now have an additional diagnosis of an enterocele which will be repaired at the same time.

I popped in to collect my prescription from outpatients. There was a bit of discussion between the nurse and the receptionist and they came back with a box of utrogestan...i looked at them and the nurse and she said she would go and speak to the doctor.

10 minutes later the doctor popped out with a packet of oestin cream hmm

Will see GP tomorrow and ask to be started on hrt,nsuspect now for hey have been told I am perimenopausal by the hospital they will comply. I am happy to accept that I will need to have the lining and fibroid monitored regularly (remember reading this in nice guidelines)

Tried to broach the hyperplasia ?diagnosis but didn't get very far. They were a different set of doctors today.

PollyPerky Thu 19-Jan-17 18:04:30

Are you in France by any chance? Understand they prefer the vaginal route for Utrogestan.
I think you need to establish two things:
1 Do you have actual hyperplasia or do you have normal thicker lining for someone in peri meno? Hyperplasia is usually a diagnosis for older post menopausal women who are still producing estrogen through their own fat cells ( being overweight is a key risk factor for hyperplasia and endometrial cancer.) And ask what the thickness is. I understand that 15mm is acceptable for peri meno / fertile women.

2 Why are you being given Utrogestan for it if it is hyperplasia as it's not as effective as Norethisterone? And how long are you supposed to take it for?

Idefix Thu 19-Jan-17 18:21:23

I am next door in Germany, they also prefer the vaginal route as there are less side effects apparently.

To be clear I only came home with oestin cream.

Plan to ask GP tomorrow for hrt and will be asking for translation report so I can see in black and white how thick the lining was etc. I am not overweight and my discharge paperwork just said I was perimenopausal so it does seem unlikely to be hyperplasia really.

from what I have read I should be started on a low dose combined hrt (cyclical) and this should reduce the chance of the lining getting 'too' thick (cause of prolonged bleeding?) I also read I should have regular monitoring to ensure the fibroids don't become enlarged.

Will be so happy if I can put a holt on all these symptoms and start to feel more normal. I feel I have been going slightly mad over the last 6 mths blush

Idefix Sun 22-Jan-17 14:22:51

So had a productive appt with GP on Friday, now feeling better about what is going on. Plan to start hrt after surgery, he feels it would be better this way and I am happy to go with this. Beginning to feel nervous about the op, but need to focus on the benefits of having the procedure done.

Was given a copy of my report and it describes ?me as endometrium hyperplastic at 14mm. This was after 4 weeks of heavy bleeding - would it be thicker than this at the beginning or does it not work this way?

I wonder if that definition is not the same as having hyperplasia.

PollyPerky Sun 22-Jan-17 15:46:19

I think you need another opinion(s) on what they consider 'allowable' in peri for the lining. Meanwhile, there is a huge amount easily available on the web if you type in key search terms eg' Endometrial thickness during peri menopause/ cut off points for endometrial lining/ endometrial thickness pre- menopausal women.'

I've read that 15-16mm is usually the max, and that tends to be so before a period. But there does seem to be a lot of variation between consultants/ opinions.

The RCOG is a good place to start to look for info online.

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