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From zero to full hysterectomy in a few short weeks – Lucy’s Story

I went from nothing to a full hysterectomy in just a few short weeks. I can still see the consultant’ s fountain pen inscribing the words “Total abdominal hysterectomy” in my hospital record, as I looked on in total shock. A few months back I had never even set foot in a gynaecology department, except for the birth of my two children, how had it come to this? I had never had any problems to speak of, not even morning sickness when I was pregnant, no major stuff with periods. I sat in stunned confusion..

I say no problems with periods, a few months before this moment, my periods were becoming increasingly erratic, which I put down to the approach of menopause ( I was 48 when this happened) as did the GP and practice nurse when I mentioned it at the time of routine cervical smears. No problems had ever been found, and I just pootled along regarding the situation as one of those messy inconveniences brought about by being a woman.

At the beginning of last year, I had a spate of two months where I seemed to be constantly bleeding – as soon as one period finished, another would start up. Again, I wasn’t too concerned, just made sure I always had a good stock of towels and tampons wherever I went but I was starting to get desperately tired and getting horrendous joint pain. I started doing some research (as did my ever loving hubby) and put it down to perimenopause,and possibly anaemia.

So,back I trooped to the GP. He suggested an ultrasound scan, blood tests and a smear test. The smear test was clear, I was found to be anaemia (so went on iron pills) and the scan revealed a large fibroid (about 10cm), so I was dutifully referred to a gynaecologist.

Whilst waiting for the appointment, I started researching on fibroids, and had satisfied myself that,seeing as it wasn’t causing any symptoms (the iron pills were doing their job at getting my levels back up, the bleeding had subsided, and the joint pains were found to be rheumatoid arthritis), I could get by without surgery for some time yet; a fact which was important to me at the time as I was just starting a new job and felt I had a lot to prove. I even chose the hospital solely for the fact they could see my on my day off no one had to be any the wiser for a condition which wasn’t going to affect my working capability.

The first doctor I saw at the hospital agreed with me, although it was a large fibroid,seeing as it wasn’t causing any problems, it could be monitored for the foreseeable future he recommended an appointment for four months.

It was with some surprise that my next appointment arrived for six weeks. I duly went along and was met by a different doctor who had a minor freak out about it looking like a sixteen week pregnancy and mentioned that it might “all have to come out”. He booked me in for a scan and hysteroscopy for the following week and left me feeling confused and angry for his dismissive attitude. I should mention that they had lost the scan and blood test results that had been sent,at this point,and I was starting to lose faith in the system.

The next week I arrived. The hysteroscopy was not too uncomfortable, the staff carrying it out were sympathetic and understanding. The size of the fibroid was confirmed and a polyp was found at the cervical entrance so a small amount was snipped off and sent for biopsy, just as a precaution. I went away a bit happier as the specialist who performed the procedure agreed that amongst the options available was “living with it”. My faith was restored.

An appointment arrived to be seen in four weeks, and, again, research told me that polyps were usually benign.

This is where my initial doubts on efficiency were brought back to the surface. Another appointment arrived for a different day (a work day) with very little notice, treating me as a “new patient”. I cancelled it by email assuming it was a clerical error. Another arrived, again giving very little notice, again on a work day. This time I phoned up, and spoke to the secretary, who explained that they had “moved me to another clinic, as my case was more suited for this particular specialist, and she particularly wanted to see me herself “. I hadn’t seen my original specialist at all. So we made a mutually agreeable appointment which allowed me to make arrangements with work (I had to come clean to my new boss, who was amazingly understanding ).

It was then that I saw my present specialist who calmly told me that my results had shown abnormal cells, suspicious of cancer and she recommended a total abdominal hysterectomy, ovaries, cervix, the lot to be removed. She did mention that there was the alternative of fitting a coil and monitoring, but I sensed in her voice that she wasn’t too hopeful on this option and when we asked on how much the possible cancer could grow she said that was the problem, there was no way of knowing for certain if it was indeed, cancer, and if so, how aggressive the condition was, it was a foregone conclusion in my mind, I couldn’t risk it, I had to go for the hysterectomy, it wouldn’t have been offered on a whim.

My head was reeling- here I was, the sole bread winner for our family, barely started a new job (my trial period not completed ) having to take a minimum of six weeks off (longer,in fact,because I had a long drive to work )…the first thing I did was text my boss to let him know of the situation….he replied almost immediately, saying that my job was safe, it could be worked around. Phew!!!!

The date came for the op relatively quickly….in six weeks..which, at least allowed us to go ahead with our (much needed ) annual family holiday…I have to admit to moments of panic over having delayed my appointments, not knowing I was possibly carrying a cancer around…how much had it grown? How far had it spread, if indeed it turned out not to be cancer, would I have wasted my time having an operation on (mainly) healthy tissue? What about being plunged into”overnight menopause” HRT, I was told,was not an option, because of the cancer risk in my case..what about my love life? We had just got it all back together after a few tough years. I had read copious amounts on cervical shortening,post operative pain, drying of mucosal tissues. I felt in jeopardy of losing my essence of being.

I was also becoming increasingly irked by platitudes( however well meaning they may have been ) such as “Well, you’ll feel better afterwards!!” …..I didn’t feel ill before!!!! “You’ve had your family….you don’t really need it anymore”, would you say that to a man with suspected testicular cancer? I felt I was going into this operation with everything to lose.

It all went well,I have to say, pretty uneventful, two days in hospital, not needing the painkillers too much, neat little scar of about 4-5 inches..op done by the consultant herself (she did mention that it was a bit of a struggle because of the size of the fibroid, but that made no difference to my recovery,and the scar has healed well) and lazing about the house afterwards for weeks on end being waited on hand and foot by my wonderful, supportive family.

The results came back in four weeks; it was,indeed cancer, early stage, so it hadn’t penetrated the walls of the uterus…so in my own mind it felt justified in the end I looked upon the experience as a long nap followed by an extended holiday!!!!

By the way DON’T try to do too much in the first few weeks. Ladies, take time out for yourself the relatively short time you take in resting and healing (even though it might seem an age at the time) will repay you in dividends in the months to come. The housework will be there forever, YOU COME FIRST!!! It’ll probably be the only time you ever have to truly spend on yourself use it wisely!!!!

I returned to work after seven and a half weeks,phasing back to full time work over a month (I’m an optician, so my work isn’t too physically strenuous).

Five months on,I’m just about getting back to the Egyptian dancing that I love. Yes,I get very tired of an evening, still, but slowly, my strength is gathering!!!

I am left with much to be thankful for, without the aches and pains I would never have presented to the doctor none of this would have been found out. I strongly believe that the rheumatoid arthritis was a warning signal for the cancer, and now the treatment I am receiving from the rheumatologist has controlled most of the symptoms.

I am sincerely thankful for organizations such as the Hysterectomy Association for dispelling a lot of myths and fears,and putting things into a manageable perspective.

Last, but certainly not least, I am thankful for the support and advice I have received from friends and relatives, it is only when our backs are against the wall that we can truly appreciate the wonderful people that surround us!!!!

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in my own words book coverNow available on our online store and all other online book store’s. In My Own Words: Women’s Experience of Hysterectomy is full of many other real-life stories from women the world over.

Other people’s stories help women feel less isolated. They show that they aren’t going mad, missing the point or stupid.

Linda Parkinson-Hardman

Transformational counsellor, coach and women's health advocate. Professionally I'm an information scientist who specialises in change management, culture change and adoption of digital technologies in large enterprises and organisations. I am a writer and author of nine books to date, and I've edited a further seven; phew what a lot for a Thursday afternoon :-)

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