Have to make a decision - fatty liver disease, perimenopause & hysterectomy

[the-mental-one]

I have been told by the doctors I have to make a decision on whether to have a total hysterectomy or not. They said that given my symptoms it would be recommended to have one but also that it would be better for them to do it when I completed menopause...but they also said that my blood glucose levels are likely being effected by all the hormones fluctuating and dropping. Last time I had spikes like this having was just two or three years ago, when I had covid and all the jabs, which pretty much coincided with all my perimenopause symptoms starting up. Took a long time figuring out what was going on because long covid was a possibility for most of my early peri symptoms, and also because my main GP kept telling me my suddenly very heavy periods where perfectly normal. After two years I finally had a consult with a gynaecologist and turns out it was not perfectly normal. They did a CT scan and ultrasounds which showed a lot of fibroids, at least one that is very big, and two very large cysts on my ovaries (one is 10cm by 9cm) and they didn't mention it but I read my own scans and it said I have a fatty liver and a a spot on my liver that might be a hemangioma but needs to be checked.

They wanted to operate in July but needed to wait for me to try and control my blood sugar better, after living here for ten years I was told there was a diabetic clinic I should have been referred to (by the same GP who told me my periods being so heavy was perfectly normal ) so now I have had check ups, I own my own blood pressure monitor, a fitbit, and I'm trying my best not to wallow in self pity. I have my next set of blood and urine tests from the docs at the beginning of December and follow ups with the diabetic clinic the week after. I have to talk to them about my liver because that's apparently tied to the diabetes, and there is no way I'm going to leave that with my GP given my experience with them the last couple of years.

Has anyone had to deal with *any* of these things? Anyone have any notes on how to deal with things during recovery from surgery, especially if there is anything I can do to help make my recovery from surgery easier / faster (they're saying 16 weeks minimum right now). Anyone had to deal with fatty liver disease? I barely drink any alcohol but I've been gaining weight since I hit perimenopause and finding it *really* hard to lose it, I've had a lot of injuries that have made exercising hard, I'm not over-eating or eating badly but I've started feeling hungry a lot so dieting doesn't seem that feasible (even when I was dieting I wasn't losing weight anyway) so I'm not sure what is the best way forwards on any of this.

I'd rather not have to have the operation at all but the other options don't sound that much better and a second opinion agreed that they almost certainly would need to operate to do the total hysterectomy eventually if I decide to put it off for now, I have no idea what my decision will be, everything is just a little much right now.

 

[WJK]

Hello. I had a total hysterectomy during the summer (robotics). Signed off for 4 weeks and started to walk after a week and did increase a little each day. Probably diabetics related but one of my incisions did not heal so under the practice nurse got about 4 weeks to be dressed. I did not notice any change to my blood sugars

 

[the-mental-one]

Hello. I had a total hysterectomy during the summer (robotics). Signed off for 4 weeks and started to walk after a week and did increase a little each day. Probably diabetics related but one of my incisions did not heal so under the practice nurse got about 4 weeks to be dressed. I did not notice any change to my blood sugars

4 weeks sounds a lot more manageable than 16 weeks, I wonder why they're telling me such a long recovery time.

 

[Antje77]

I'm sorry to hear about your health issues @the-mental-one .
I don't have any answers for you but I'm tagging @JoKalsbeek , who at least has experience with NAFLD and possibly has some knowledge about the other things as well.
I wish you all the best, and please keep us updated!

 

[JoKalsbeek]

What a mess your GP made of things, I'm so sorry! Heavy and irregular periods and ovarian cysts do kind of go together; maybe look up PCOS? I'm struggling with my weight myself now (peri or proper menopause, who knows?), but I did get blood sugars and NAFLD pretty much sorted with a low carb diet. (No hunger, mind you, as you're supposed to up the other macro's when you cut the carbs; up the healthy fats, embrace protein. No "dieting" in the traditional starve-yourself sense, just a different way of eating). Considering my liver was supposed to kill me about 8 years ago, I think that went well. Still have everything in place, so can't say much about a hysterectomy. Can only guess why the estimated recovery time is such a long one, maybe they're assuming you'll be a slow healer due to the diabetes? Anyone's guess.

All in all... I'd say, whether or not you lose weight on it, maybe give low carbing a good go... It might not fix everything, but it could make a marked difference in the NAFLD and healing time with the blood sugar control likely improving as a result. Also, maybe look at your Metformin dosage. I'm not a big fan of the stuff and can't use it myself due to the side effects, but it's reportedly a help in PCOS symptoms...? Maybe your dosage needs adusting. Just not too sure the GP is the one to talk to on that subject, so... Maybe aim for a specialist?

Good luck!
Jo

Edited by mods to remove rule breach

 

[PenguinMum]

I had a total hysterectomy 12 years ago (when I didn’t have T2) and it was all removed through my vagina so there was no big wound to deal with. I was on my feet the next day and home after three days. However, the effect internally is the same as the old method and I was warned against lifting anything heavy eg kettle, shopping, hoovering for 6 weeks. I think I was back driving before the 6 weeks though. It was a big success for me and I would urge you to ask questions about options for surgery. Wishing you all the best.

 

[Outlier]

It does make sense to delay the hysterectomy for a short time if possible, because the menopause can throw up a lot of difficult symptoms and it's better to be healthy as possible if you are one of us who suffers from them (I have). You can support your unhappy liver right away by trying a low-carb diet, which for many of us has done away with disquieting symptoms, and even if it doesn't work for you then no harm is done. Once your liver is more comfortable - and it shouldn't take all that long - you can get your reproductive matters in line. You will, as others have said, need to pamper yourself during the recovery period in order to heal properly. No sense rushing it no matter how many people would like you to do things for them.

I feel for you with your unhelpful GP and hope you can work around his attitude. I hope you can find a more caring gynaecologist. Remember your smug GP likely has problems all of his own to come - and you don't have a prostate!

You aren't alone with this - you have us.

 

[the-mental-one]

Thing is I've been on a low carb diet for a while, I went lower again recently and back on the Metformin since my blood sugars were considered bad...but in November with no Metformin and less than adequate exercise because of injuries my test results were all fine, my estimated average blood glucose was 7.3, liver function was fine, cholesterol levels were all within normal range. I have a low fat, low carb diet, even with all my allergies I'd been managing without the drugs.

Now I'm back on the drugs and my digestive sytem hates me again...but my blood sugars are better. I'm trying to exercise more but it's hard work getting back into it as a few months without being able to walk really took it out of me.

Having more protein seems to spike my blood glucose but later after the meal, but I'll keep trying this even lower carb thing and see if that helps.

 

[Pipp]

4 weeks sounds a lot more manageable than 16 weeks, I wonder why they're telling me such a long recovery time.

Hi @the-mental-one .
I am sorry you are having such a tough time.
I have no personal experience of NAFLD, but believe that @JoKalsbeek has covered that well, and do know people who have regained good healthy liver through reducing carbs in their diet, particularly ultra processed foods and ready meals.

I do have experience of hysterectomy and fibroids, and particularly large ovarian cysts. The most likely reason you have been told recovery time of 16 weeks is due to the size of the cysts. It appears the less invasive laparoscopic surgery will not be appropriate for you. It does take longer time to recover. I had similar, though a very long time ago. I wasn’t given much info about post-op care and went back to work far too soon. Later I had further disabling problems with abdominal hernias and adhesions, necessitating a lot af further surgeries and disability. I would urge you to take great care, and find a surgeon and medical team you can trust.

 

[Pipp]

Would add that, without wishing to derail the thread, PCOS (polycystic ovary syndrome) is a different condition to ovarian cysts. @the-mental-one says she has large ovarian cysts. The treatment for the conditions differs.
More ifo is in this article

The Difference between PCOS & Ovarian Cysts explained

What’s the difference between Ovarian Cysts vs (PCOS) Polycystic Ovary Syndrome? and is bilateral polycystic ovaries dangerous? We explain the differences.

www.londonwomenscentre.co.uk

 

[JoKalsbeek]

Would add that, without wishing to derail the thread, PCOS (polycystic ovary syndrome) is a different condition to ovarian cysts. @the-mental-one says she has large ovarian cysts. The treatment for the conditions differs.
More ifo is in this article

The Difference between PCOS & Ovarian Cysts explained

What’s the difference between Ovarian Cysts vs (PCOS) Polycystic Ovary Syndrome? and is bilateral polycystic ovaries dangerous? We explain the differences.

www.londonwomenscentre.co.uk

Oh, sheesh... I thought it was the same thing. Apologies!

 

[the-mental-one]

@Pipp @JoKalsbeek

I was originally diagnosed with PCOS when I was first diagnosed with T2 diabetes, the large cysts they reckon are something to do with perimenopause.

I only just found out when talking to these gynaecologists that you can be diagnosed with PCOS without having any cysts, which is not what I was expecting at all, I was asking whether maybe I was misdiagnosed since they didn't see multiple cysts on the scan which is what I had assumed would be the case. I hadn't really researched it when I was diagnosed because I was given a lot of information from the NHS and was in a major depressive episode at the time when they finally figured it out.

Anyway, one of my large cysts is 10cm by 9 cm and the other around 5cm, and either one may still be growing. So that seems likely to be the reason for the extended recovery time estimate, thanks Pipp for that information. It's also a big reason that I think I might have to go through with the op.

When I told the consultant I would be doing my research before making my decision he told me not to, I think they're scared of doctor google but my degree is in molecular biology and I'll be going to science journals, because that's what I do, but I also wanted to pick the brains of people who may have experienced the same because that's also really helpful...and things like large cysts needing to be removed in a different way that may take more time to recover isn't something I've found but now I know I can tailor my searches a bit more.

They have started talking about metabolic syndrome but all my previous blood tests have been fine. In fact if I didn't push for the gynae appointment, and didn't tell them I was told I had two tubes from one kidney but I didn't know which one, they may not have done the CT scan...and then if I didn't read my own CT scan I wouldn't know about the NAFLD because no doctor mentioned it until I asked them to explain what I was seeing and what the radiologists report meant (I'd already looked it up but didn't want to tell them that given how the consultant reacted to me saying I wanted to do research about my options).

I feel like the main thing I've learnt through this is that you really do have to be your own advocate here, and maybe that's the same anywhere.

 

[Pipp]

I commend your approach, to do your research before making any decisions, @the-mental-one .
I would be looking for info on whether or not the ovarian cysts will be likely to change size following menopause, and their potential to cause problems if waiting too long for surgical removal.
I was fortunate in that during surgery, for ovarian cyst, a frozen biopsy was taken. I was in my early thirties at the time, so pre-menopause. A long time ago, and diagnostic tests were not as efficient as today. I was told that it was precancerous and if left much longer could have ruptured.

I hope all goes well for you.
Please keep us updated.

 

[Hopeful34]

I feel like the main thing I've learnt through this is that you really do have to be your own advocate here, and maybe that's the same anywhere.

I learnt this many decades ago, when I was only 10 or 11, and I don't think the diabetes consultant had ever had anyone not just blindly follow his word.

I'd been hospitalised on holiday in a hospital that was way ahead of ours, following 3 times of hospitalisation in a fairly short period of time at home. I felt far better on a new regime of 2 injections a day than 1, and politely but firmly refused to return to the old 1 a day. It stopped the hospitalisations, so was definitely right for me.