Holly_Day
member
Reged: 04/05/2009
Posts: 11
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Hi ladies,
You sound like a really positive helpful group so I'm hoping you can help me to find a way out of my gloom. Difficult to cut down a long story to the basics, but in June 08 I had a hysterectomy after a cancer scare. I wasn't given much of a choice about it and all the post-op checks showed no signs of cancer. So I was left feeling I'd had it unnecessarily. It seemed to take ages to recover and I got back to work on 22nd Sept, to a demanding job which now I feel no satisfaction in at all.
I am constantly going backwards & forwards to doctor's, who just want to prescribe anti depressants. I've tried 2 types but they just make me feel even more exhausted than I already am and I can't function properly so I don't want to do it that way. I'm having counselling but when I go it seems to make sense and I think of things to help (e.g. making a formal complaint about my hospital experiences which were dreadful in so many ways and asking to go on a 4 day week for a while) but when I get back into the daily grind I just go back to feeling exhausted and completely uninterested in anything.
I feel drained, and I ache all over plus I feel quite faint a lot of the time. I''ve had blood tests which always come back negative and I'm sure they think my mind is just screwed up, but I really feel something must be physically wrong for me to feel so exhausted.
Does this ring any bells with anyone please and how on earth can I gee myself up to get on with my life and get over what has happened? I'm usually so purposeful but this has just pulled the rug from under me completely.
thanks
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duckegg
member
Reged: 26/02/2007
Posts: 1324
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Hi Holly_Day
I'm sorry that you're not feeling well at the minute - have you considered the possibility of Chronic Fatigue Syndrome/ME?. I'm not saying it's what you're suffering from, but a lot of the symptoms you describe could be attributed to it. You don't need to have had a virus, it's quite common for blood tests to come back normal and GP's are notoriously bad at diagnosing it and frequently try and fob patients off with anti-depressants.
I know there's a danger when you look things up on the internet that you end up thinking that you must be suffering from whatever is being described, but it might be worth you logging on to http://www.meassociation.org.uk, and if you feel it could be a possibility mentioning it to your GP next time you have an appointment.
Take care
Duckegg
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Foxie
member
Reged: 09/08/2007
Posts: 8019
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Hi Holly_Day and welcome to the forum
When I read your post I felt you had a lot of unanswered questions about your illness and your op. It seemed as if it had all happened very quickly and understandably put your life and world out of kilter.
I don't have experience of your op. but there are a lot of people on the forum who do, so keep checking and I am sure they will give you lots of information and support. If your job is too much at present can you go back on a shortened day? A friend of mine is doing that after a long term injury kept her off work for several months. It means that she avoids travelling in the rush hour, but also keeps in touch with work without getting exhausted.
Foxie
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I've learnt that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. Maya Angelou.
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suejane
member
Reged: 04/10/2008
Posts: 454
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Hi there. I hada total hysterectomy 8 years ago. I hada lot of awful family problems too, a very cruel ex husband. If life had been easier i was advised that this op can really take it out of you emotionally anyway, without the other problems i had and you have had. I was advised that emotionally you can feel very low for a while so i would advise you go back to doctors and explain what is happening. For some women this op can be very debillitating, you feel very week physically and emotionally.You lose muscle power for one thing, in your tummy and it means you cant bear children anymore, for many women, great, no more periods etc but for some it is abit of a breavement also.I would go back to your doctor. In the end it was swimming, generally taking care of yourself and for my mind,i didnt try anti depressants, i began to start to eat again,i walked alot.We are all different. For many, a much needed op, but family circumstances and the kindness of friends, can help you to recover. For me it was a long time but for others maybe much quicker! Very best wishes for your recovery, and promise to take care of yourself 
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hussy
member
Reged: 29/09/2008
Posts: 877
Loc: Scotland
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Hi Holly_Day, as well as ME being a possibility I wondered if you had had a thyroid function test?
Also I am wondering if the counselling is really getting to the emotions rather than trying to find strategies to help? There are lots of different approaches and so its not a 'one size fits all' kind of treatment, and you have had a very rough time. Its maybe too early to do all the positive stuff, you might need to be sad, angry etc before you can move on.
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xxxSummerxxx
member
Reged: 29/03/2008
Posts: 10536
Loc: Billericay,Essex
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Hello Holly,I have not been through your experience however what i would like to say that you have been through what i feel is one of womans ultimate fears.You took the decision to be operated on for the right reasons but i can understand your regrets.
How on earth a person comes to terms with such a frightening experience without help is beyond me.You have taken the first step b y reaching out to Ladies on the Forum,well done.
What Duck egg has said re M.E makes sense.You desrve all the help and support you can get.
Take care x
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Dormouse
member
Reged: 04/05/2009
Posts: 371
Loc: Scotland
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Hi Holly
I have read your post and you have been through a terrible time. You have been given a lot of advice. However, I do have an under active thyroid. The condition has a lot of different symptoms the main ones being tiredness, weight gain, constantly feeling cold. Before I was diagnosed I felt awful for a long long time. It took ages and I mean ages to get my Gp to take me seriously. I knew that there was something wrong. The Gp's in the practice would not take me seriously. You know yourself if there is something wrong.
I did not give up after a lot of blood tests, it was finally confirmed that I had an under active thyroid. The condition is a pain in the neck. Although it is manageable.
My advice to you is NOT to google all the various conditions that have been put forward to you, including under active thyroid. You will only succeed in making yourself more worried than you already are.
I know EXACTLY what it is like when a Gp does not take you seriously. My advice to you is do not give up, go back to your Gp and tell them exactly what you have said in your message. If the tablets are not working for you, tell your Gp that, do not let them keep filling you up with medication.
Please please go back to your GP and tell them how worried you are and ask for more blood tests. You need to get this sorted out. If you feel that your Gp is not listening to you, ask to speak to another Gp - if that is possible.
Take care...
Dormouse81
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jamjams
member
Reged: 09/01/2009
Posts: 1174
Loc: geordieland
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Hi Holly-Day
Firstly welcome to our merry throng ( nearly wrote merry band of misfits, but that would just describe me)
You really have been through the mill, does the hospital you attended have a patient liaison/ or a patient support society.
I might be a good idea to get in touch with them, and they may be able to help get answers about your operation.
Is your GP practice good, if not are you able to change.
I find having a good relationship with your surgery a very good thing.
It is hardly surprising you are depressed,you have been given a very serious life changing operation, which knocks your hormonal balance to hell, I trust that has been looked at?
if your hormonal balance is of kilter it could make you feel faint
I'm with Caz on this don't google anything we have mentioned, as it will just make you worry. Also agree you need to go back to the GP and ask for full blood screens, also ask for them to check you for aneamia,could also be making you fainty
hope this helps
Jamjams x
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GILL3SQ
member
Reged: 29/07/2008
Posts: 1624
Loc: Staffordshire
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Hi Holly,
There is one thing that you don't mention in your post - whether or not you have children? Hysterectomy can obviously have a huge effect on us at whatever stage of life. Also you don't mention your approximate age.
I do agree with the other ladies though and you need to have a straight talk with your GP or another one at the practice ? a lady doctor who may be more sympathetic.Let us know how you get on.
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Holly_Day
member
Reged: 04/05/2009
Posts: 11
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Thanks everyone - some very helpful suggestions. I think I will try to get to see the doctor again tomorrow morning as some of you have suggested, and try to get him to see things more holistically.
I had been through the menopause - last period 2 years before the op (I was 48) and another doctor in my practice tried to get me to take HRT because it was routine for someone under 50, but I felt this wasn't appropriate because I didn't have any symptoms - the hot flushes had more or less gone. This was the same female doctor who did blood tests and then said they should be re-done after my next period, when she knew fine well I'd had the hysterectomy! She then decided I needed antidepressants instead of HRT, but it might be worth revisiting that as a solution.
I did think about underactive thyroid, and found an article in an old Prima magazine where someone had persistently had normal blood results but finally was properly diagnosed with it and the treatment resolved it, so I thought I might take that with me. While I lost a stone (and my appetite!) after the op, it's crept back up lately. I hadn't thought of ME so that would be another set of questions to ask.
As part of my complaint to the hospital I've asked for someone to sit down with me to show me my notes and explain exactly what the "cells suspicious of cancer" were, why the hysterectomy was felt to be the best solution, and exactly what the histology showed. I have some unanswered questions about the initial diagnosis and the tests they sent me for. I had a couple of visits from a gynae counsellor which helped me to deal with the early impatience and frustration at being forced into inactivity.
At the time of my op, I did join the Hysterectomy Association website, which was great for support during the recovery period, but many of the women had elected to have the op to resolve period problems and therefore it was a positive experience for them, so I felt my situation was a bit different.
Thanks again for your time and suggestions.
love,
Holly
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Holly_Day
member
Reged: 04/05/2009
Posts: 11
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Gill - yes I have 3 children, 21 yr old and 19 year old twins. The consultant's way of giving me the news was to say I had cells suspicious of cancer and didn't need my childbearing bits any more so he hoped I'd agree with his opinion that it was best to remove them and he'd booked me in for a hysterectomy the following week!
I don't know how anyone copes with a hysterectomy who hasn't had children.
xx
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Karen28
member
Reged: 13/08/2006
Posts: 10
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Hi:
Have you considered consulting a Naturopath - or indeed any type of Complementary Health practitioner? Instead of the allocated 7 minutes you get with a GP, a Complementary Health Prasctioner will spend about 1.5 hours with you on an initial consultation, giving you time to explain everything in detail - and no, you won't leave with a prescription for yet more anti-depressants!! They will look at you as the whole person that you are - not just an increasing number of symptoms :-)
Natural medicine isn't a quick fix but then it works!
Whatever path you decide to take - I hope you start feeling better soon.
Karen
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Holly_Day
member
Reged: 04/05/2009
Posts: 11
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Hi Karen,
That sounds a great idea - do you know how I can find one?
thanks
Holly
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chilla
member
Reged: 05/09/2008
Posts: 6237
Loc: runcorn
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http://www.naturopathy.org.uk/
If you click on find a member it will come up with town and area. Karen made an excellent suggestion as they will look at the whole package and have time to listen to you.
Don't expect instant results, but just the fact that you are taking responsibility for yourself often gives you a lift.
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I have the talent of single-minded determination and foc....hey, look, dog!
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JulieJ
member
Reged: 29/12/2008
Posts: 559
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Dear Holly
I'm sorry you're still feeling so low after your H.
Hopefully you'll find my comments helpful, rather than the reverse!
I know you feel now that, in retrospect, the H was done 'unnecessarily', as you say, because all the post-op checks showed no cancer. (I am assuming that those checks were the pathology report on the ovaries removed with all the rest).
But I would ask and urge you to put your operation into a much broader context - and it's a VERY scary one. Ovarian cancer has an appallingly high death rate - I believe the stats are somethign like: 80% of women diagnosed with ovarian cancer are dead within 5 years (I believe in contrast, 80% of women diagnosed with breast cancer are alive after five years!). Brutally, ten women EVERY DAY die of ovarian cancer.
It really is a very very dangerous killer disease - IF it is not caught early. And, as you may know, OC is extremely hard to diagnose early - the symptoms are very vague, and easily explained away as something else.
So, if, for whatever reason, the gynae saw cells which 'were suspicious of cancer' they really, REALLY do need to act fast. I know you felt you weren't given much choice, but think about it - you were already post-menopausal, past child-bearing, so you don't really 'need' your reproductive system any more. Would you really rather have kept all the 'bits' at the price of having a deadly cancer? Supposing they'd faffed around, and put you in a queue, and made you wait weeks for the operation? Would that have been any easier to bear? Waiting and worrying?
Like it or not, they found suspicious cells, and nothing can alter that. If their suspicions proved, upon examination, unfounded, then really, you can be very grateful! Possibly you might think - well, couldn't they test the cells before rushing into a hysterectomy? But the problem with that is, doing a biopsy (ie, extracting the suspicious cells) when they are in the ovary is very difficult to do, and carries the risk that the cells will be 'spilt' into the body during the procedure - actually spreading the cancer around! The best way to get the cells out for checking is by means of removing the ovary - and if they remove one, they might as well remove two (as if you have the suspicious cells in one, why wait to see if they produce the same in the other ovary?). Yes, were you ten years younger and still of child-bearing age, then they might well take that risk, so you could use the remaining ovary for eggs, and keep you womb, but if you really don't need them any more, is keeping them worth the risk?
Although it is, of course, every person's right to decide for themselves just what degree of risk about dying of cancer they want to take, I can't but think that, rushed though it was, it was a sensible precaution to take, to give you a hysterectomy.
I'm sorry you're still having a hard time after the op, and that it wasn't well handled in hospital, but in the great scheme of things an H really isn't a very major operation, and it was, after all, a life-saving precaution. Had the cells proved cancerous from the pathololgy examination you would, I am sure, be feeling hugely relieved and grateful that it had been caught in time for you not to become one of the ten women a day dying of ovarian cancer right now.
But even though, happily, it's turned out OK in the end, it is indisputably a very scary time to be confronted with the real possibility of a cancer diagnosis. You feel like you've been hit with a truck, coming out of nowhere! Then you feel like you're on board an express train you never asked to board, being rushed away into treatment that you can hardly draw breath before it begins. Then, 'all over' you're discharged back into normal life again and assumed to get on with everything as if nothing had happened at all.
And that's hard.....
Without doubt it must have been a severe shock to your system to have to go through all that - the cancer scare, the rush into priority treatment, the op itself, the bad time in hospital, and now the aftermath that is trailing on and on. Plus you get people like me telling you all the reasons why you should be grateful, when you have been through all that!!!!
I do think that when something drastic like this happens in our lives, it can make us reasess an awful lot of stuff, it's like a catalyst making us ask questions about how we are living, what we are doing, questioning all our previous assumptions, eg, whether we still find our jobs, our lives even, as satisfying as we used to.
In practical terms I would definitely think that dropping one day a week could be the 'margin' you need to come to terms with what you've been through. Get you off the treadmill, and give you some headspace. I agree that exercise of some kind is a great way both of healing body and mind together.
I'm really sorry if this is coming across harsh and unsympathetic, and telling you 'you should be grateful it wasnt' cancer after all!' in a superior tone, but if it is, then please, turn the tables on me. I've just had a hysterectomy myself, like you for suspicious cells in a borderline cyst in one ovary, and I had a very, very easy time of it. So you can definitely turn the tables on me and say 'well, you should be grateful you have such an easy time then, shouldn't you!' - and I shall definitely agree with you.
I hope you can find a way forward, and reach out into the coming year head, and find your spirits lifting again.
Best wishes, Julie.
PS - just thought, I'm assuming it was the risk of OC they were worried about, but maybe it was uterine cancer or something else??
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Holly_Day
member
Reged: 04/05/2009
Posts: 11
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Julie,
Thanks for being so honest and straightforward - if only the staff at the hospital had been like you I might not be in this situation. It wasn't the ovaries they were worried about, but I think your points are still valid. I had an abnormal smear test then they sent me straight for a colposcopy which included biopsies, and the cells they found were endometrial, i.e. from my uterus. I think they said there was a possibility that they were atrophic cells (i.e. it was my age!) but they wanted to remove all the risk and that was why they chose a TAH BSO i.e. total hysterectomy removing both ovaries as well and all the tubes etc. The histology afterwards on everything they took out, plus stomach washes, was negative.
Thanks Chilla for the link re naturopaths.
Holly
xx
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jacqui_o
member
Reged: 15/10/2008
Posts: 834
Loc: Lowestoft Suffolk
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Hi and Welcome Holly,
I am sorry you feel this bad after your op, have to say I did not and it was the best surgery I have ever had....
I agree with what JulieJ has said above and would also point out, look at Jade Goodie, that is the kind of result she had and ignored it........sometimes that kind of radical soloution is the only one.
With regards the information from the hospital and your GP.....if you make a written request under the freedom of information act, they have 20 wrking days in which to respond or give a reason why they cant.......
if you want a copy of my request am happy to post it for you to copy....
If your Thyroid readings fall within the "normal" range even if it is at the very lower end of it, they will say it is normal.....
I hope you begin to feel better soon, and get some answers as well...
take care
Jacqueline
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Holly_Day
member
Reged: 04/05/2009
Posts: 11
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Thanks Jacqueline. I have been given a deadline by the hospital for a response, which is the end of this month, so will see how it pans out. The lady I spoke to was very helpful and said after I get the written response she will sort out a private consultation with the consultant so I can ask any remaining questions and get a complete understanding.
Fingers crossed!
thanks
Holly
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3marchpickle
member
Reged: 03/01/2007
Posts: 14
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Hi Holly, really sorry to hear of your experience.
It seems that you are and rightly so, very angry at what has happened and could be the reason for the way you are feeling rather than anything medical. You need to feel good about yourself again and regain some strength. You say you are not happy in your job anymore, would it be possible to change it. when something major happens in life everything from before tends to remind us of it. Try to create a new life with different interests and people. hard as it may be try to find the possitive. If you hadn't had the surgery things may have been worse - there was no other way of telling. You are still the great person you were before you just need to let go of your anger. hope all goes well x
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