Hi there, I thought I would join this forum to see if there are any ladies out there who have experienced the same symptoms as I have since my hysterectomy 12 years ago. This is a VERY long story, so if you have other things to do, look away now! But I feel I have to explain it in detail to see if anyone recognises any similarities.
In 2005, I had fibroids which were causing me excruciating pain at time of the month so when I was 42 years of age the docs attempted to removed them via keyhole surgery. I was put under anaesthetic but then woken up again and told that everything was "stuck together" and that I would have to have an open hysterectomy. So more waiting and two op cancellations later I eventually had everything removed apart from my right ovary. That was in January 2006.
My recovery was very good and within a few months I started to feel very well and a little bit smug that I didn't have to suffer with periods anymore! I had blood tests done and was told my thyroid was underactive and that it probably had been before the op but I wasn't aware of it. So I was prescribed levothyroxine. But by September 2006 I started to get some very funny turns, I can't say that these were hot flushes and I can't say that I have ever had a conventional hot flush, at least not how I have read other ladies describe them. I didn't get a warm feeling all over or sweat profusely. I would initially start to get very anxious almost like a panic attack and knew one of my "episodes" was coming so if I was out I would rush home. The anxiety would become very intense, sometimes I would be pacing up and down and then I would start to throw up and have terrible diarrhorea at the same time which was a nightmare as sitting on the loo with a bowl on your lap is no fun at all (sorry if too much info!) This would last about 20 mins and then I would become incredibly cold and very shaky and my teeth would be chattering but at least the vomiting had stopped. At the end of it all I would have to head for bed as each episode completely wiped me out. This went on for months and at their worst these episodes would happen five or six times a day. Needless to say, I had to give up work and the doctors tried various meds while they were trying to work out what was wrong with me. Because they weren't like hot flushes and my blood tests were "within the range" the doctors said they thought my one remaining ovary was working and so they tested me for just about everything else, including diabetes. All to no avail and by Christmas 2006 I was in hospital on a drip weighing 7 stone. I had anti-sickness medication in hospital which helped so when I was discharged I was given tablets to help me keep food down but it didn't improve things much.
By Spring of 2007, my doctor was clutching at straws and said "let's just try you on HRT even though the blood tests are normal" so I was prescribed Premarin tablets. No improvement so then I had patches. Still no improvement, then in April 2007 I was given Oestrogel. Within a couple of weeks I improved immensely and for the next ten years I stayed on Oestrogel, the maximum dose of four pumps a day, continued with the thyroid medication and had also been prescribed Flouxetine (Prozac) during the anxious episodes which I carried on taking. Every six months I would have a blood test for hormones, thyroid, iron etc. and all would be normal.
All good apart from one thing. I wasn't the woman I was before my hysterectomy. I was constantly tired and to combat this I started working for myself as it was impractical to work for anyone else! I would sleep well at night but within just a few hours of waking up I would need to sleep again. Very often this later, shorter nap of about 3 hours would make a huge difference and I would then be fine for about 6 or 8 hours before I became tired again. So I was sleeping about 12 plus hours in every 24 but over the years the fatigue got worse and aching muscles and joints started to be an issue. I didn't seem to have any strength as well as the lack of energy. So last year I ended up back in the doctor's surgery crying and saying I'd had enough. A bit pathetic when you think what some people go through but I just wanted a normal life. My doctor was brilliant and said right this may take a year or more but we will test you for everything we can and see where we get.
So I had every blood test under the sun ... all normal. Then they sent me to the Musculoskeletal Clinic as they wanted to test for fibromyalgia. I was told more or less straight away that I didn't have that as I wasn't in extreme pain but they told me I had "extreme muscle weakness" and recommended a course of physio. The lady there also asked if I had ever been referred to a menopause clinic and when I said no she seemed positively shocked and said "oh I'm very surprised at that given your history" so next thing I know I'm on a waiting list for the menopause clinic which takes a while but eventually I see a very nice lady at the menopause clinic who looks at her notes and says "oh I see you have never had your oestrogen and testosterone levels checked" which I argued with as I told her I had been having blood tests every six months which included my hormones. She told me no, that these tests were just a marker. I don't even know what that means but I was very confused. So she said she would take blood that day and I would get the results quickly and she would ring me. She rang the next day and said "well your oestrogen levels are so low it's as if you're not even using HRT" so obviously that gel isn't working". I was devastated as I felt like I had been using this gel all these years and if I had just kicked up a fuss a bit earlier on about the tiredness maybe I woudn't have been on the wrong medication! I was told that maybe initially it worked but then stopped working which is a thing apparently. But why did the anxiety and sickness and everything not come back in that case?
So in August of last year I was prescribed Sandrena gel instead of the Oestrogel as some women absorb gel types differently they seems pretty optimistic that this would work. It did, but perhaps too well as when I had my next blood test in January of this year the levels were double what they should be (although I can't say I was feeling much better!) so they recommended I halve the dose. I did this but six months later I am still a bit of a wreck really, aching joints and muscles, still constantly tired unless I spend more than 12-15 hours asleep in a 24 hour period. The joint pain got so bad they sent me for x rays which revealed "mild osteoarthritis" which I don't think is related. At my latest appointment at the menopause clinic, they have now recommended I start taking a very low dose of testosterone even though my blood tests for testosterone are showing as normal.
If you've managed to get this far in this tale of my woes over the last 12 years then you probably need a nap now too! But I would appreciate any feedback from anyone that things they have something to offer that is relevant. I am at the point now where I am just resigned to the fact I will always be tired and am learning to just manage my life as best I can. I eat extremely healthily, I exercise (in between naps!), I don't drink, I don't smoke, I have been married for 33 years to a man I adore, I live a completely stress free existence really but I can't say I don't feel a little bit cheated by having less hours in the day than I would like to get things done and I also feel that my career aspirations have suffered due to my lack of energy.
Anyway, I've said enough! Thank you for letting me join this forum and I look forward to browsing the site and reading what others have to say about their experiences
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Topic: Hi, new member here, 12 years of post hysterectomy confusion! (Read 1196 times)