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Post meno bleeding

(19 Posts)
HenWithAttitude Sat 10-Aug-13 13:27:49

Long story and probably complicated unless you have experience in this:
I have had repetitive PMB over approx 5 years now. 3 pipelle biopsies, one hysteroscopy and biopsy and last discharge letter said I need a more extensive biopsy under anaesthetic if it happens again.

It's happened again.

I don't want to go back to the gynae dept as I'm sick of being interfered with. I feel they are treating me as per NICE guidelines but not as a person. Reasons for bleeding have been suggested as persisting cyst, hyperplasia of endo and just hormonal. Progesterone got rid of the hyperplasia although the uterus is now bulkier and still got thickened endo (but less than previous scans). It looks as if I've developed adenomyosis and small fibroids in last couple of years probably due to HRT which has now been changed.

To me this all suggests a benign process linked to hormonal activity. I again have a small follicle on one ovary so feel this bleed is just lingering cyclical activity. I'm really fed up with being biopsied so regularly and never finding a real end to the process.

Any advice on what I can say to the gynae team to persuade them that endless biopsies are not really solving the problem nor much fun

I don't think you need to explain excessively, you can just decline further biopsies if you want to. But, I think it would be rather risky.

You are probably right. But the risks if you are not are pretty significant.

What do you want? Is hysterectomy an option?

HenWithAttitude Sat 10-Aug-13 13:35:18

I would very happily have a hysterectomy because I feel this is a cycle which will be repeated until they find malignant cells - let's skip the intervening months/years. The hyperplasia and fact my endo is obviously very sensitive to small amounts of oestrogen to me suggests I'm more at risk of endo cancer. This is obviously bollocks and just my musing grin However it is how I feel. 5 yrs of biopsies and no resolution means I'd rather just skip to the hysterectomy.

Last biopsy I did have a frank discussion about this and said I was pondering not returning if it happened again. Obviously that would be risky and I can't do it, much as I'd like to

I think if you lay it all out, nice and factual - you keep getting the bleeding, keep having the biopsies which are uncomfortable and worrying for you, got the fibroids etc, - you feel that the best way to manage this is to consider a hysterectomy - will you list me for one please.

It's a reasonable request. They may say no.

Then get a second gynae opinion and start muttering about PALS, I think you have a pretty good sensible case for one (I know they don't do as many now but a Mirens/myomectomy doesn't fix everything, right?)

HenWithAttitude Sat 10-Aug-13 13:45:03

Thank you - I'll take that on board

mirena even.

But at your next appt, point out you discussed the possibility of a hysterectomy last time. Say explicitly, as you have here, that you feel you are just going to get investigated to buggery and end up with a hysterectomy anyway. Ask them for one, and see that they documented that you have requested one. Agree that you know they are a last resort, but you don't feel you can tolerate the anxiety and discomfort of all these tests, and you feel that the risks of the surgery are outweighed by the benefits in your particular case etc.

You can't force them to do it, of course, but is all evidence why they should give your request serious consideration. And it gives them the willies to think when you end up with one due to further symptoms, it's there in the records that you were refused, IYKWIM.

Missbopeep Sat 10-Aug-13 16:32:13

OP- I'm sending you a PM, but meanwhile, I don't think a hysterectomy is the answer- it's a major op that can result in other problems, and no surgeon worth their salt would do it for something that was not necessary- and PMB is not serious usually unless it's cancer.

HenWithAttitude Sat 10-Aug-13 17:49:53

I've had to take bored child out.

Good advice again about getting my request documented Minge. The point about anxiety and discomfort has been acknowledged in my last discharge letter (from memory).

MissBo - thank you for PM. I'm 11 yrs post meno so this lingering cyclical stuff is lingering a long time. HRT was changed to try and stop the bleeding. Endo has varied between 7mm and 17mm. My main concern is the back wall of the endo is now indistinct making measuring difficult because the border seems to have been merged with what looks like a fibroid. I have never had a fibroid in my life until the last year. It's assumed to be HRT related or adenomyosis. I'm anticipating next scan to show it has shrunk due to the HRT change. If it has remained the same or grown I will be very anxious in case it's not just a benign fibroid. The biopsy takes from superficial surface and not the back wall so doesn't totally reassure me. Bleeding is moderate over 9 -14 days like a long period so not ignorable.

A hysterectomy might not seem like the answer but it would give a definitive diagnosis and end my recurrent biopsy stresses. Every time I bleed I feel anxious then have a wait until I get to the GP who refers me to a two week wait clinic (the last referral took 5 weeks from bleed to clinic) I then had a 10 day wait for the procedure before a month wait for the result. I've not rushed to the GP this time because I'm not very keen and denial means I don't worry so much. It's at the back of my mind though and now I'm about to step on that treadmill of worry again.....knowing it will probably be at least a month before I get another 'normal' result. They don't really reassure me anymore

Missbopeep Sat 10-Aug-13 18:12:51

What type of HRT are you on now? A close friend of mine had to change from conventional HRT to Tibolone because her fibroid was growing.

This might seem an odd question- but did you have an early meno? Because 11 years post meno and 'still' on HRT is quite unusual.

The other obvious question is- if HRT is possibly causing all this grief, why continue with it? (Unless you are still under 50 and are taking it as prevention for osteoporsis.)

If you stopped HRT then it would give you time to see the wood from the trees.

One more point- you seem very well informed so presumably this has all been discussed with you by the drs....so why did they not take a biopsy from the 'suspicious' area of the back wall during your last hysteroscopy?

The usual 'treatment' for thickened lining is as you say progesterone but then to stimulate the lining with more oestrogen seems odd unless thee are very strong reasons for taking it.
Any clues why?

Missbopeep Sat 10-Aug-13 18:22:41

P.s. If you have adenomyosis is it not that which is the cause of the bleeding?

HenWithAttitude Sat 10-Aug-13 20:40:10

Tibolone.

Yes early meno and only started HRT in last 3 years for osteoporosis. PMB had also occurred previously when not on HRT.

The suspicious area is deeper in the endometrium. Biopsy is taken from cavity side. I did ask but was feeling like an over anxious prat at the time so didn't pursue it further. I think that is the reason they want to do a full D&C next.

There has been no suggestion from them that adenomyosis causes PMB tbh but nor have they confirmed it is adeno or if it is small fibroids.The appearance was bulky and irregular suggestive of either.

Missbopeep Sun 11-Aug-13 08:44:45

TBH that amount of bleeding is not 'normal' PMB! IME women who have PMB have a little spotting over a few days, not a period like flow for up to 14 days. That sounds hormonal.

Are you ( and your drs) sure that you are really post meno- especially as you have some follicular activity? (which you wouldn't if you were truly post meno?)

Do you have faith in the drs you see? Again, I am wondering why if YOU know there is a suspicious area that needs sampling, they have done a biopsy but not taken it from that area! it sounds negligent. when they do a biopsy with a hysteroscopy they can take a sample from wherever it's needed, more easily than if it's with the pipelle.

I'd suggest you discuss/test your hormone levels- if this hasn't been done recently- and if that's not the issue then in your position I'd gladly accept a hysteroscopy with a GA to put my mind at rest. Why are you not happy about having it done?

Missbopeep Sun 11-Aug-13 08:59:40

Just another thought- if you are not truly post meno that could and would explain the thick lining.

I assume you know that post meno the lining should be no more than 5mm? They allow a bit more for anyone on HRT but I was told by the radiologist that up to 9-10 was the limit .

Reading over everything you've said here, it really doesn't sound as if you are post meno at all. Not sure how old you are, but it is possible for hormones to stop-start over many years.

Would you consider seeing another gynae for another opinion or even going privately to someone very experienced?

HenWithAttitude Sun 11-Aug-13 12:48:36

I'm happy with the team tbh. I just feel I'm being treated as per NICE guidelines without any overview of me being a person affected by this

I have had several blood tests confirming my post meno status. One of my requests was going to be a further blood test to see if my hormones had magicked themselves into life again - seems very unlikely after all this time and I am now past typical meno age!

The 17mm endo was hyperplasia. Progest therapy reduced it to approx 8mm and it's never ever gone below 7mm. Bleeding this time was period like and has been in the past but I have also experienced the vague smearing/brown in knickers type evidence of bleeding.

The sampling was targeted but as I say it takes from endo and the area which bothers me is the endo/uterine junction which is not included in pipelle sampling as far as I know

My posts are because despite extensive googling and my personal knowledge there doesn't appear to be much info out there about people in my situation. I'm reluctant to have D&C because I don't feel it's going to change anything. 6 months on from here I'll be doing it all again. Ground hog day but with me in stirrups and a sharp instrument inside me confused

Missbopeep Sun 11-Aug-13 15:04:54

A D&C should tell you what is the cause of all of this- it's not 'normal' meno bleeding with that amount of flow.

They will also be able to do a biopsy of the spot you are worried about although why they can't do this with a hysteroscopy I don't know- I've had biopsies done with a pipelle and hysteroscopy and the whole point of the latter is that they can see where they need to take a sample. No?

Your HRT could have been responsible for the bleeding before now - NICE guidelines are investigate within 2 weeks for post meno bleeding without HRT, but can be delayed a little if on HRT.

You may need a different balance of hormones and Tibolone might stop your current symptoms- they say give all HRT 3 months so your body adjusts.

TBH although you say you are happy with the team, the fact they are going by the rule book and not allowing for any personal judgement or have a regard for your feelings, shows you are not getting the best treatment- good drs use their judgement, as well as science.

In your case I'd be looking for a 2nd opinion at least.

HenWithAttitude Sun 11-Aug-13 17:14:22

Thanks for your input. I'll pass it on to the Drs.

Missbopeep Sun 11-Aug-13 19:00:06

At the end of the day, it's your body. You don't have to go back or subject yourself to any more investigations if you don't want to.

On the other hand if you are worried, then more discussions are needed.

I'm not a dr- I'm just passing on the sum of my experiences and friend's experiences.

You might like to use the forum on menopausematters.co.uk as the women there are sometimes well informed and can share their experiences. I'm not a member now- used to be but got a bit forum-overloaded!- but it's worth having a look at it.

HenWithAttitude Fri 13-Sep-13 16:26:08

I thought I'd update this thread. I had my pre-assessment for my hysterectomy today.

I'm pleased smile

HenWithAttitude Wed 15-Jan-14 08:32:57

Looking for another thread I'd started, I found this and thought I'd further update. Lap total hysterectomy done last year and I made a brilliant recovery and was back to work in 6 weeks (probably could have gone at 4 weeks). Ovaries removed as well which I'm very happy with.

I have no regrets and am very grateful that the consultant agreed it as a way forward for me

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