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Complex Hyperplasia with Atypia – Reethah’s Story

My story took off in October 2013 during an appointment with my doctor for something else entirely unconnected – eczema behind the ears. A chance mention in passing to my doctor that I had had an unexpected period the month before after a long gap caused her to prick up her ears. When was your last period before that? she enquired.
I looked back at my diary where I log all my periods and body changes. I knew it had been more than a year and yes, it wasn’t in that diary’s calendar. So it must have been the previous year. And I had also known I was going to have this period. For several weeks before, my body had been drawing itself out of its dormant menopausal state and getting back into ovulation gear (breasts enlarging, water retention …) and as a result, I wasn’t surprised to have that bleed. Granted, it took a long time to come, but when it did, it was exactly as my periods used to be in every single way, and when after 5 days it was finished, my body returned to its menopausal feel.

I hadn’t given it a second thought but my doctor’s reaction was unexpected and unwelcome.

‘I think it’s wise to get it checked out’, she said. My response was ‘do I really have to? Isn’t this a lot of fuss about nothing?’
At home I checked through the previous years’ diary and found that before the October bleed, it had been about a year and half since my ‘last’ period.

Reluctantly I attended a highly unpleasant and upsetting vaginal ultrasound appointment at the hospital. The procedure itself was fine, but the Consultant’s curt ‘bedside’ manner was off-putting, his words ‘you have a 20% chance of having endometrial cancer’ shocked me and when he sent me off with a form to hand in at reception on my way out with the words ‘cancer’ on it, frightened me.

The thickened lining of one part of my uterus shown up by the ultrasound suggested a polyp and I then had a hysteroscopy to remove it, thankfully with a new Consultant – no anaesthetic, ouch, but she and the nurses were wonderful in keeping my mind occupied with lots of interesting questions to keep me chatting.

According to the Consultant, the polyp was quite large and most likely responsible for the bleed, and off it went to histology. The results showed Complex Hyperplasia with Atypia – the variety with a 30% association of developing into endometrial cancer – the fourth most common cancer in women – over 20 years ‘of those women who don’t have a hysterectomy’, as the Consultant explained.

It was not easy knowing what to make of such statistics. My approach was to focus on the 70% association of no development into cancer, while the medical profession – the Consultant and 2 doctors at my GP surgery – viewed the 30% association as too high a risk.

My consultant put so much pressure on me to have a hysterectomy immediately which I resisted. The polyp was gone. I was no longer bleeding. I had only bled that once, which I had anticipated and which I had experienced as a proper period. What was the problem, for goodness sake? Don’t women’s bodies take their time to adjust from perimenopause to menopause, aren’t all our bodies different in how we make that journey?

The Consultant discussed with me individual attitude to risk, and reasons why a menopausal woman would need to hang on to her uterus. But I was not ready to have hysterectomy without more information so I persuaded her to properly test the lining of my womb to find out exactly what its condition was.

A resulting Pipelle Biopsy was promising – it showed only Complex Hyperplasia with no Atypia. In other words, a 5% association with future endometrial cancer. Wonderful! So I started a course of Progestogen tablets (synthetic progesterone) which in some cases can regress hyperplasia back to normal cells and at the minimum to hold my condition in check. I also consulted a nutritionist and started a course of herbal supplements to counter the effects of the Progestogen tablets and to strengthen my immune system and liver. But then I started spotting on a regular basis which began to worry me.

To see if the tablets had worked, the following May I went in for a D&C under general anaesthetic which was also to get a definitive understanding of the state of my endometrium. Disappointing news. The histology now showed Complex Hyperplasia with Atypia in my endometrium. And I’d had no indicating factors whatsoever. I’m not overweight, I’m not diabetic, I’ve not been exposed to excessive oestrogen. And I felt very well indeed physically (except for the worry over the spotting and the side effects of the progesterone tablets). A Mirena Coil was inserted into my uterus and so I was able to stop the high dose of progesterone I had been taking through tablets and which had made me constipated.

As a result, my Consultant continued to strongly advise a hysterectomy. And she recommended a total hysterectomy – including fallopian tubes and ovaries. ‘We might as well, since you are menopausal, and there won’t be a future risk of ovarian cancer’ she explained.

In the wish to save myself from such an irreversible procedure and in the light of my very good health in everything else in my life, I searched the internet for hours to find alternatives. I investigated endometrial ablation, endometrial re-section and bio-identical hormones. I wondered if the Mirena might work as a treatment, not just a holding measure. I wondered if bio-identical hormones might be more effective than the Mirena Coil. My Consultant was clear that in my case of Complex Hyperplasia with Atypia, neither would be the case if the original tablets had made no difference.

I was keen to have the Mirena removed as I had noticed some changes to my body despite the Consultant saying the Mirena has no side effects. I noticed bumpy areas developing on my forehead and cheeks and the side of my upper arms, a lot of my hair was falling out and I started having benign fasciculations in my body, primarily in my upper arm. I found some websites where a lot of women had posted similar changes after starting with the Mirena.

Still I tried to explore alternatives to hysterectomy. My consultant advised me that the ablation and resection were not suitable for my condition (atypical cells), and she had no experience of the bio-identical hormones, alerting me to the fact that they themselves are synthetic. A surgeon friend of a friend reminded me bluntly that there is no money to be made by, and no pressing reason perceived for, medical researchers and pharmaceutical companies in treatments for saving the uterus in menopausal women!

The last straw was the monitoring procedures which the Consultant advised I would need every 3 months should I choose not to have the hysterectomy. She offered me a pipelle biopsy every 3 months but we both knew this was not accurate enough and that the D&C which would be accurate was not something I could have every 3 months.

So reluctantly I booked myself in for the hysterectomy and couldn’t believe I was in this situation. The final decision was whether to have the ovaries removed too. It was difficult to make sense of the conflicting opinions on removal of ovaries between the medical profession and what I read on the Hysterectomy Association website postings and literature. The Consultant had not even discussed any implications of the total hysterectomy on my health. Yet the literature was saying the ovaries continue to produce testosterone for up to 12 years after menopause with potential impact on libido etc. When I raised this with the Consultant, her view was since I was already menopausal, it was highly unlikely I would feel any different after the operation, and if I did, I would discuss this with my GP to explore options such as HRT. My GP had the same view. I then asked my GP for a blood test as I thought it would be a good idea to check my pre-operation baseline hormonal levels to inform any impact of the operation but he explained that it was academic as testosterone for women is not licensed in Britain as a hormonal treatment and that HRT is a one-size-fits-all, not based on a woman’s individual hormonal levels.

I could not believe I was in this position with no indicating factors, even the Consultant was surprised that I had this condition – and I felt really well (apart from the bother of the spotting) and so couldn’t accept that I needed such a major, albeit common, surgical procedure and that I hadn’t found an alternative. However, once I had resigned myself to the operation, I followed all the Consultant’s advice to the letter, including going for the total hysterectomy. I did trust her and knew she would do her best for me. I even took all 9 Fortisip ‘enhanced recovery programme’ drinks and the 2 pre-operative drinks at 6am on the day of the operation. I spent the weeks before the operation getting lots of aerobic exercise to increase my fitness, abdominal exercises to strengthen my abdominal muscles and yoga to relax me.

The operation could not have gone better. The Consultant and the Registrar both said how wonderful it was to operate on someone as slim as me and that it had all gone very well. I was back home within 2 days and stopped the painkillers after a further 3 days. Having read all the stories about constipation and wind, I took a digestive seed mix (linseed, fennel, aniseed, sesame seeds) and my bowels returned to normal within 3 days with little or no wind and I was amazed at how well I felt so quickly.

I continued to take all the Fortisip drinks they sent me home with and I also took Arnica 30 once I was out of the hospital.
I was so lucky to have my partner (who doesn’t live with me) and my mum and my son spend the first 3-4 weeks with me at home, insisting on doing everything for me. From the day I arrived home, I was walking up and down 2 flights of stairs several times a day as my bedroom is on the second floor. 4 days after coming home, I started short walks in the local area which tired me out more than I expected having been very fit before the operation but it still felt good to get out and walking.

It was strange not doing everyday household things like reaching for saucepans and lifting jars of rice etc. I did overdo it the first couple of days until I got used to having other people do things for me, and when I did too much, I was shocked to notice a little vaginal bleeding which I had not had at all in the hospital, and did not have again after I let my partner and mum literally do everything for me.

10 days after coming home, I was still napping for 2-3 hours during the day as I got very tired but I could by then sneeze without it hurting. I continued to feel tired for several weeks but apart from that, I felt very well in myself.

At 6 weeks I thought I would be ready to go back to work but I didn’t! I felt almost back to normal but just not ready for my demanding job, both physically moving between offices, climbing stairs and travelling across the city, also emotionally and intellectually demanding. Emotionally, I noticed I couldn’t handle the slightest amount of stress or problems. My Consultant immediately signed me off for another 4 weeks and explained that most women are about 80% at 6 weeks and that by 10 weeks I would be completely fine.

She also said it was fine to have sex from then on but after trying it, I really wasn’t ready – it was another whole month before I felt ready to. Even then I was nervous for the first few times, found myself “tight” and love-making a little painful. I felt “shorter” than before but we took it very slowly and everything seems fine now.

I really enjoyed the extra 4 weeks, and particularly enjoyed my local walks, getting to know my neighbourhood better and using the local shops, bumping into people on the street … all the things I used to do when my child was little but have not done for years since working full time in a high pressured job.

It is now February, 6 months since my operation and I don’t even think about it anymore. The scar has healed beautifully and I was perfectly fit for my skiing holiday last month. On the whole I don’t think I feel any different to before the hysterectomy except for 1 thing. Being a workaholic and enjoying my career, when I was first told I would have several weeks off work, I was aghast at needing to miss so much work time. However, I found I so enjoyed the 10 relaxing weeks off work, it made me realize I work far too hard and how lovely it is to have a slower pace of life. I now make sure I get enough sleep and have a better work-life balance.

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This Post Has 2 Comments
  1. thanks for sharing your story. I have just got my results back as Complex Hyperplasia with atypia. At 58 the hysterectomy was advised. I need not my uterus so…bye bye. I am keeping a positive attitude.

  2. Thank you so much for posting your story. I’m in the same boat – complex hyperplasia with atypia and some grade 1 cancer cells.

    I’m only 41 and scared of the menapause and the stress of the operation plus all the after effects. I have found your story quite heartening as not many people seem to have this condition but it’s the 4th most prevelant cancer in women and a silent killer!!

    I’m currently fighting the condition with hormones but I went for a hysteroscopy yesterday and it showed definite abnormalities. My biopsies have varied between abnormal and then one came back ok depending on the pathologist!!

    I have located a brilliant consultant now and a pathologist who specialises in identifying endometrial cancers so this biopsy and hysteroscopy I have just had will decide whether I need the operation immediately or if I can wait 6 months.

    Unlike you, I’m overweight!! A major factor in this condition. I have lost over 5 stones already but need to lose the same again to be at the top end of my BMI.

    It’s all very scary and I wish my GP had advised me to do something to protect my lining when I was younger!! Due to taking other meds in my life my periods stopped at about aged 19. So ever since then the estrogen has been unapposed in my uterus and has caused this condition.

    I have the mirena coil fitted too and yes I recognise those side effects!! Hair loss, bobbly skin etc

    I think I will end up having the op but I want to be slim so I stand a good chance at recovery and fit enough, like you, to deal with the after effects.

    Lx

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