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[Jellyb]

Ladies

I hope someone can give me some ideas.  I'm 39 years old & have not had children, am fit & healthy, in case it helps!

I had both ovaries removed a few years ago due to over 10 years of ovarian cysts & ops to remove them.  Since then I have been on Premique Low Dose HRT.  I have a kind of monthly bleed but it's not always regular and sometimes might come twice a month.

At the end of last year I had an endometrial ablation in the hope that this would stop the bleeding occurring, but it didn't.  My gynae also checked me for adhesions and endo.  No endo, small adhesion which he sorted out.

In the last 2 weeks I know that something is going to happen as I've had very sore boobs, been eating everything in sight and have felt bloated.  So far, nothing yet.

But, I have had an immense amount of tummy pain, similar to when I had my most painful ovarian cysts.  I was walking almost doubled over at the weekend and intercourse is agony.  I can feel something in my tummy when I sit down and it's so painful.

If i've had my ovaries out I can't have another cyst, can I?  Yet the pain feels so similar. 

I really don't want to have to go through hospitals/doctors/operations again so if anyone has any ideas what this could be I'd be happy to hear from you.

Thanks for reading.

[Gobe]

Jellyb I am sorry I can offer you no advice but if I were in that much pain I would be off to see my doc asap.  Take care please.

 

[Eddie]

Hi Jellybean, i agree with Bex, if you don't know what this pain is i would get checked out. Hope either it abates or you go see about it. Eddie. x

[terriw]

Hi Jellyb, sounds nasty, do you still have your tubes and womb? it could be cysts again but hopefully not. Let us know what the doc says...

[Jellyb]

Thanks Ladies,

I still have my womb & uterus but my ovaries & tubes were removed.

I have read about Ovarian Remnant Syndrome where a small amount of ovary is missed and can cause all sorts of symptoms.  I hope it's not this but will see how I go over the next couple of days.

[macgowan]

"been eating everything in sight and have felt bloated", these are the words that stuck in my mind when i read you've been having tummy pains. Perhaps the words in quotations aren't helping? I know, things normally aren't this simple, but with myself, sometimes they are due to the fact that I look at so many other reasons for reactions that I don't easily see the obvious.

[Jellyb]

Thanks for your replies ladies.  I think the pain has something to do with the fact that I still seem to have a "cycle" despite having my ovaries removed.

I think I will have a bleed soon as I'm getting pain in my abdomen again, it's very sensitive and my boobs are huge and tender.

[Jellyb]

Well I saw my consultant on Friday as I have still been in pain and there are now 2 issues:-

1 is the pain
2 is the fact that I still bleed despite having ovaries removed

I have been taking premique low dose which he says these type of hrt (from horse urine) are being gradually withdrawn and other hrt will be mainly soya based.  Has anyone else heard of this?

Basically the fact that I'm on this hrt & that I still have a bleed is not a good combination.  I had a thermochoice ablation last year which may not have destroyed the entire lining of my womb, hence the bleeding.  So, I'm to have a scan on Weds to see if the lining is now uneven as this will tell them.  Then I have to stop the HRT for 6 weeks and then have a blood test.  This will check for any remnants of my ovaries/natural hormones to see if that's what's causing the pain.  As I have a lot of scar tissue from previous cysts/ovary removal it's possible that not all of the ovary was removed.

Finally, depending on what these tests show I may/may not have to have a hysterectomy. That's the part that I'm not sure of.  Having had 4 cuts to my abdomen already I am reluctant to have anymore but I don't want to have any more pain/risks.  I am 39 so would have many more year on HRT to go.  I am also unsure of the effects of having the hysterectomy.  I know from having my ovaries removed that I am going through the momopause but what else will happen to me?  My husband & I have a good sex life and I don't want that to be upset by any other symptoms that may arise.

Sorry for the long post but any advice or insight would be most welcome. 

[Taz2]

Hi Jellyb - I am a bit confused as to why you wouldn't bleed while on HRT. The ovaries produce oestrogen which in short lead your womb to build up and then to bleed. If you have had your ovaries removed but have replaced the natural oestrogen with HRT delivered oestrogen then, I would have thought, it stands to reason that you may still bleed  Perhaps someone else will have a think about this too?

If the hyster is to take away your pain then it would seem a good thing. Removal of the ovaries seem to be what upsets the body menopausally although a hyster does put you more at risk of future prolapse.

I hadn't heard that the mares urine HRT's were being replaced by the other types to be honest. It is personal choice as to which you take. I wouldn't use a prem one unless I really had no alternative due to the method of collection but I know a lot of ladies get good results.

Taz x

[Jellyb]

Thanks for your replies ladies.

Larky, I wouldn't want a vaginal hysterectomy just due to the fact that I know I have a lot of scar tissue from previous ops and it would be safer all round if I was to be cut instead.  I also have a friend who has gone through similar things to me with lots of ops.  The last time she went in for a keyhole op they punctured her bowel and she has been left with a stoma - so that always plays on my mind too.

Having my scan on Wednesday morning so hopefully that might tell me something.

[Taz2]

I still find it confusing as to why bleeding while on HRT, after removal of ovaries,  has been considered "wrong" 

Taz x

[Taz2]

Yes but a lot of women bleed on a conti. The concern seemed to be that bleeding was occurring despite ovaries being removed. I am probably misunderstanding!

Taz x

[Jellyb]

Thanks for your replies.

I think the concern over the bleeding is that it is not regular.  I can have a bleed for 5 days, a gap of 3 days and then bleed for another 5 days.  Then I might have nothing for 2 months or I might have another 10 days later.

I have had my scan today and she couldn't see any cysts and said that the lining of my womb was fine, and thin, so no areas where the ablataion didn't work.  I will stop the hrt on Sunday for 6 weeks so that I can have a blood test and see what my natural hormones are doing.

I would like to stay on the Premique Low Dose (or something similar) purely because it works for me and I feel ok on it (compared to others I've tried), so I'll have to have that discussion with my consultant when I see him at the end of Sept.

Really want to avoid a hysterectomy for as long as possible.

[Jellyb]

Hi ladies just a quick update,
I had my 1st blood test & my estradiol (sp?) level was 155, the consultant said it should be around 73 for someone in my case (no ovaries) so asked me to have another one 6 weeks later. 
Saw him last night and the level had gone up to 190.  This leads him to believe that I do have some ovarian tissue left which is producing hormones.  I was also having a fairly regular bleed for the 3 months while I was off my HRT. 
That revelation makes me really angry as I went through 12 years of ops, culminating in the removal of my ovaries and there is still something there.
So, just to make sure that the bleeding is due to hormones & not any nasties he's going to do a hysteroscopy and will probably give me a mirena coil at the same time.  Then he says that he will regulate with Evorel patches.
Have to say, I never wanted a coil, just because my pain threshold is so low, I know I will panic when it needs to come out.
Anyway, that's what I found out last night, still in a bit of shock to be honest.

[Taz2]

At least you have sort of found out that it is not all in your mind Jellyb which is what seems to be the answer to our questions from time to time. 

I know this is not the same but my cat had hyperthyroidism and was on tablets so I took the step of putting him through the op which he survived but the thyroid level remained the same as some tissue had migrated into his lungs. So, i am now £450 down and still having to force tablets down his reluctant throat every morning!  The point I think I am trying to make is can ovarian tissue migrate somewhere else too - such as in endometriosis?

Taz x