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Nothing works to stop the bleeding - facing more surgery

(23 Posts)
carabos Wed 20-Nov-13 12:14:27

I had an endometrial ablation 4 years ago aged 46 to try to resolve flooding problems. It didn't work. I've muddled along ever since but lately the problem has become worse than ever. As I am now 50, the GP has put me on Evorel Conti (no-bleed HRT) and supplementary norethisterone and has referred me back to the gynae.

GP suggested that after 8 weeks on the norethisterone I should wean off it and see if the Evorel Conti would do the job alone. We did that, no joy, bleeding started up again. went back on the norethisterone for a further 4 weeks, then weaned again - same result.

Where we are now is I am stopping the Evorel Conti and the norethisterone as neither is working properly, but keeping norethisterone and tranexamic acid in reserve for emergencies such as this week when I have to fly.

GP says that without further surgery (probably a hysterectomy) it is possible that the bleeding may not stop and it may continue this way for another 5 years or so.

Has anyone had a similar experience? I really don't want a hysterectomy - I'm self-employed and can't afford to not work for weeks. I'm hoping that I might get away with another ablation, but of course that didn't work first time, so may not work on repeat.

TheLeastAccomplishedBennetGirl Wed 20-Nov-13 12:22:46

I'm a little younger than you at 46, but am in a similar situation. Norethisterone no longer stems my bleeds, and I'm waiting for scan appt to determine the presence of fibroids or not.

My consultant has explained keyhole partial hysterectomy, where only the uterus is removed. Recovery time can be as little as 2 weeks, with only 24hrs as an inpatient.

Could this be an option for you?

TheLeastAccomplishedBennetGirl Wed 20-Nov-13 12:26:32

Of course, leaving your cervix in place you would still need to have smear tests, and you could have a monthly bleed,but it would not be as heavy as it is now.

carabos Wed 20-Nov-13 12:32:07

I do have fibroids, but they are small. Never heard of partial hysterectomy - sounds like a not very satisfactory procedure - if I'm having a hysterectomy I don't want any more bleeding wink. I'm feeling a little irrational about it all tbh - many of my friends are at the "I haven't had a period for months" stage. What I want to know is, why am I having everyone else's period for them???

My GP is about as much use as a chocolate fireguard - he says I'm just "unlucky" and keeps talking about another five years. I appreciate that the average age at menopause of 52 is just that - an average, but why shouldn't I hit that? Does he know something I don't know? Irrational - see?

TheLeastAccomplishedBennetGirl Wed 20-Nov-13 13:24:41

Have a look at 'Laparoscopic Sub-total Hysterectomy' or LSH

I'm with you on the irrational front smile

I had a mirena coil fitted 3 years ago which was meant to help all this.
It took the doctor almost an hour to fit it due to my tilted cervix, which the gynae consultant is sure is tilting because of the fibroids, which would never have been controlled with the coil in the first place. . .

Or is our hormones making up irrational ;)

carabos Wed 20-Nov-13 13:44:37

Thank you for the info - I will have a look. irrationally, I kind of think that whatever procedure comes next will either not work, or leave me in a worse state than before. I'm in "tough it out, it can't last forever " mode at the moment. wink

fitflopqueen Wed 20-Nov-13 13:54:39

I am in a similar situation, had ablation 4 yrs ago which didnt really make any difference, am now booked to see gynaecologist again in 2 weeks.
I have been looking at this site
www.hysterectomy-association.org.uk/ which does have quite a lot of useful info and not necessarily resulting in hysterectomy.

carabos Wed 20-Nov-13 14:06:35

We need to start a new group for people like us - Wombs of Steel...grin No matter what the docs do, ours keep bouncing back.

goinggreyagain Wed 20-Nov-13 14:11:51

I had a hysterectomy (they left the ovaries) and some bladder repair done. It was all done vaginally so the recovery was a lot easier, its the best thing I have done for myself and wish I had done it years ago. I am in the US so I am not sure how much of a difference that makes

carabos Wed 20-Nov-13 14:18:24

I should have had the hysterectomy when I had the ablation. I worked for a large corporate, had private health insurance and could have had up to six months off on full pay. Not an option today - if I don't work, I don't earn sad.

TheLeastAccomplishedBennetGirl Wed 20-Nov-13 14:26:23

Ah, the gift of irrational hindsight!

And spookily my 'decision' appt letter has just come through the post.

Always good to start the new year with some random staring up your chuff smile

goinggreyagain Wed 20-Nov-13 14:36:22

carabos is it an option to have it done vaginally over there ? I was amazed at how easy and fast the recovery was, for the first 2 days I was just uncomfortable and felt bloated and by day 3 I was fine.

carabos Wed 20-Nov-13 14:50:11

goinggrey yes it is. having read up on LSH as suggested by TheLeastAccomplished above, that would seem to be the gold standard method now in terms of ease of recovery and reporting of complications. Lots to think about. I've got my apt on 17 Dec.

Missbopeep Wed 20-Nov-13 21:11:03

Maybe this is a silly question but have you been offered the Mirena?

Another silly question- why are you on HRT with oestrogen even as a continuous combo preparation?

Have you been offered Tibolone which is HRT but with 3 hormones which is sometimes given to women with fibroids or bleeding problems.

Presume you've had a referral to 1 gynae at least- and you are also entitled to a 2nd opinion. At 55 you might only have another 1-2 years before the menopause so they ought to do some blood tests to see how far long that road you are.

Just some ideas for you!

Missbopeep Wed 20-Nov-13 21:11:59

I mean as you are 50- you might only have another couple of years to go.

carabos Wed 20-Nov-13 21:38:50

missbopeep this is a second opinion. Nobody thinks the Mirena will work for me. I don't know why I'm on combined HRT, I can't make head or tail of any of it.

My thinking, having been basically in this situation for 5 years, is to have whatever surgery is offered short of full hysterectomy, and see what happens. I'm prepared to tough out any other symptoms on the grounds that they can't last forever.

Missbopeep Wed 20-Nov-13 22:42:06

A partial hysto would be leaving the cervix and ovaries. There isn't much point leaving the cervix - think some people talk about it being needed for sexual response and so on- you need an expert to help you!

Combined HRT is supposed to stop monthly withdrawal bleeds in women on HRT- did you ask for HRT or what? Why are you taking something you don't know the reasoning behind?

carabos Thu 21-Nov-13 09:45:29

missbopeep my GP suggested the no bleed HRT in the hope that it would have the effect of stopping the bleeding, which hasn't worked. I don't have any other meno symptoms apart from the odd night sweat and some vaginal dryness.

As I'm not getting any benefit from it, I'm coming off it and will start the whole process again with the consultant. I've been up all night in agony with cramps and feeling pretty shit today.

carabos Thu 21-Nov-13 09:48:07

And I have made the point to my GP that I may have only a short time left before it all stops naturally, so there is an element of sledgehammer and nut. He doesn't understand that argument saying it is "nonsense" and I could be looking at 5 years.

Missbopeep Thu 21-Nov-13 10:36:32

I wonder why he hasn't tried Norethisterone on its own every day?

Missbopeep Thu 21-Nov-13 10:37:36

p.s .anyone having a lot of bleeding should not be taking any oestrogen even with a progestin to offset it- as far as I know.

carabos Thu 21-Nov-13 14:52:02

I have tried Norethisterone every day, but he says I can't live on it that for any length of time because its a steroid, so the idea was to wean off that and just have the Evorel Conti on its own, but that hasn't worked.

After these last 24 hours of agony, I'm stopping the Evorel and going to use Norethisterone alone until I see the consultant on 17 Dec.

Missbopeep Thu 21-Nov-13 17:53:40

Your dr's an idiot then.

It's not a steroid. It's a synthetic progesterone.

here

Pateint UK

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