Print

Please login or register.
1 Hour 1 Day 1 Week 1 Month Forever
Login with username, password and session length

[ramoth]

Hello everyone I'm looking for some advice before I see my GP on Wednesday.

I had a huge ovarian cyst which had torted twice and had urgent surgery to remove it, during which they decided that I would have a bilateral salpingo oopherectomy & leave my uterus - I was told this was because of my weight making a total hysterectomy riskier. At the same time they removed my ovaries & tubes they fitted me with the mirena coil, which was apparently to protect the uterus.

I'm 54 years old and prior to the surgery in May I had been perimenopausal for a long time, and having dreadfully heavy and painful periods (which is why I'd gone to the gp in the first place as I'd never had anything like that before). 

I'm not being given any form of oestrogen - the consultant was fixated on my weight and said that fat cells store oestrogen and the adrenal gland would make up the shortfall. I wasn't too keen on having the mirena but given increased cancer risk from a BSO I reluctantly went ahead. Thankfully it appears that I am able to tolerate the mirena quite well, my periods have completely stopped and I don't even have any spotting.

However, I'm really struggling with the hot flushes and cold flushes, I'm barely sleeping for some reason its at night that I turn into a walking furnace, usually around 10pm I can feel my face start to burn and then the heat just builds and builds, I've been standing out in the garden at night in my pj's just trying to cool down, or I end up keeping a wet face cloth in bed with me to keep wiping my skin down to try and keep cool. Now and again I get a cold flush these tend to happen during the day and are awful!! My entire body shakes violently, teeth chattering, my skin is icy cold to the touch and nothing I do can helps to warm me up and it can last hours and then all of a sudden whooosh hot flush and I'm frantically throwing off all the extra layers I had over me to try and warm myself. 

I'm also very very stiff - I do have arthritis in my lower back but my shoulder is now very stiff and painful I suspect its a frozen shoulder and I am walking hunched over dragging my feet like a little old lady I just feel so stiff and heavy & I feel permanently exhausted from waking 3 or 4 times a night.

Should I have been given oestrogen alongside the mirena? Would that help any of the symptoms or make things worse?

I'm also not sure how long I will need to have a mirena for, is it the rest of my life now or at some point will I no longer need the protection it provides?

[Tinkerbell]

I have a Mirena and add in estrogel for the meno symptoms.
If you have a Mirena you can either add Estrogel or a patch such as Estradot...that will help your flushes.
I read on here that not having any added oestrogen with a Mirena is not a good idea when you are post menopause and I guess at 54 you are heading that way.
I think it is to do the Mirena causing the womb to atrophy....hopefully someone will explain it better.

[Rhiner]

Hi, I had a very similar experience to you, 54 and had both ovaries removed in Feb this year, as a preventative measure, due to lots of fertility treatment in the past and a nagging pain from my left ovary.  My consultant didn't feel I needed any oestrogen as 3 years since last period. Post op, I gradually went down hill in a period of 2 weeks, insomnia, depression, foggy, faint feeling etc. I am very slim, so my fat cells probably didn't hold that much oestrogen. I have never experienced symptoms like this in my life, I have never been depressed and never suffered from insomnia, in fact I was sailing  through the menopause (just hot flushes that were not debilitating and getting fewer and fewer).  The consultant wouldn't believe it was hormone related, after loads of blood tests (and finding that no oestrogen left in my body)! I was put on low dose HRT and what a difference it started to make over the course of about 3 weeks.

I then developed headaches, possibly due to synthetic prog and went to see a proper meno specialist (private) where I was changed to oestrogen patches and utrogestan (bioidentical prog). I am just getting to grips with the prog part, oestrogen is great once the right dosage is worked out (trial and error)

I am surprised that you have had a mirena fitted (prog), but have not been given oestrogen, as the prog is used to counteract the uterus lining build up due to oestrogen, he must think that you have lots of reserves left. Perhaps someone else can shed some light on this?

Hope this helps, Rhiner

[Dancinggirl]

ramoth - welcome to MM - you've had a tough time but I'm pleased to hear the Mirena is proving OK for you - it must be great to not have all those heavy bleeds any more. Once you are post meno ( a blood test should be able to determine this) you could have the Mirena removed. If at some stage you are allowed to have some oestrogen then ideally you would need to keep the Mirena.

Clearly there is some concern about you having oestrogen because of your weight. It is true that fat will produce some oestrogen but it is wrong to assume this will be enough to reduce hot flushes. Have you had your thyroid function checked? Thyroid problems can increase weight and can cause flushes and feeling really cold.
I assume you really struggle with your weight and sadly being overweight does increase your risk of breast cancer so adding oestrogen into the mix is perhaps not a great idea.  However, with some proper supervision and some support to help you loose some weight you may be able to have some oestrogen which would help everything. 

For you, loosing weight would be the best strategy before doing anything - this would help with the joint pains, arthritis and fatigue - I know this won't be easy but joining a slimming club is a really good idea.  My next door neighbour was having real arthritic problems and the GPs said she must loose weight first before they consider any other treatment.  She has lost 2 stone over the last 6 months, looks fab, feels so much more confident and her joints are far less painful.

Keep posting. DG x

[Hurdity]

Hi ramoth

  from me too.

You poor thing - no wonder you are suffering. If you were only peri-menopausal then the removal of your ovaries is responsible for the sudden onset of your symptoms as you have been plunged into surgical menopause.

How overweight are you? Even if you are very overweight, as Dancinggirl says the oestrogen from your fat cells will not be sufficient to compensate for what your ovaries were making. It is cruel to let you battle through this and even if it is not desirable long term until you lose weight, at least in the short term you should be given some oestrogen along with the Mirena to mitigate the dreadful symptoms you are experiencing.

I agree also that your aim now you are at this stage should be to gradually lose weight but in the meantime you need some relief!!

I am not clear about the cancer risk from a BSO? Why is this and what sort of cancer? Also I'm not clear why you have been given a Mirena on its own? I am thinking the consultant thinks you are at risk from endometrial cancer due to your weight? I understand that increased weight does correlate with endometrial cancer but I've never heard of anyone being given a Mirena to prevent this. However I presume the thinking is that you are no longer producing progesterone from your ovaries so will not shed the uterine build-up - although the blood that is shed through menstruation (womb lining) is primarily derived from oestrogen from the ovaries!?

Oestrogen would most definitely help with your symptoms! Also do go with Dancinggirl's suggestion of getting your thyroid levels tested too, if they haven't been looked at already. Please do ask for oestrogen - your womb is now protected so you don't need to worry on that score and you should feel much better fairly quickly.

Hurdity x