Endometriosis is a common disease amongst women and is thought to occur in between 7 and 10% of the female population. And whilst it is known that the vast majority of these women will never go on to develop any form of cancer, the work that has been done recently in demonstrating a link between endometriosis and particular types of ovarian cancer could provide an easier way to provide the necessary screening for a disease which is notoriously difficult to diagnose.

A team of researchers from Ovarian Cancer Association Consortium (OCAC) have recently revisited a set of thirteen independent pieces of research into the link between endometriosis and ovarian and cancer and have now confirmed that women with self-reported history of endometriosis have significantly increased risk of developing clear cell carcinoma.

Clear cell carcinoma is a cancer in which malignant cells form in the tissue covering the ovary. About 6% of common epithelial tumours are known to be clear cell and of those 6%, 50% are known to be associated with endometriosis. The majority of patients with this type of cancer are between 40 and 80 years of age.

The researchers also showed that there was a clear link between endometriosis and what is called low-grade serous ovarian carcinomas which are slow growing cancers; they showed that endometriosis doubled the risk for women developing the disease. However, they also showed that there was no association between endometriosis and high-grade serous carcinomas which are much faster to develop and more aggressive, or other subtypes of ovarian cancer in the study.

In the UK women have a 2% chance of developing ovarian cancer during their lifetime, this translates roughly into one woman in every 50 developing the disease. Of these figures around nine out of every ten cases will be of the Epithelial Ovarian Cancer type and only 6% of these cases will be of the Clear Cell Carcinoma type (roughly half of one woman in every 50).

References:

(http://hcp.obgyn.net/endometriosis/content/article/1760982/2066478)
(http://www.targetovariancancer.org.uk/page.asp?section=146&sectionTitle=What+is+ovarian+cancer%3F)
(http://www.healthcommunities.com/ovarian-cancer/types.shtml)
(http://www.cancer.gov/cancertopics/pdq/treatment/ovarianepithelial/Patient/page1#Keypoint1)

I am an older woman – 77- and feel very alone and unsupported. My family and closer friends are a long way away, and I did not feel able to leave everything and go to live with my daughter for a few months, having the procedure in her home area. It’s a lot to ask of her when she has family and a very busy life, and she lives hundreds of miles from my current home. I foolishly assumed I would be able to do more post-op, and also that there would be support via GP and hospital.

Now I find nobody will commit to a thing until after the op, so how can I plan? I did not expect a firm date or specific details at this stage, just to know what might be available on discharge. Nobody will even discuss it with me, and my daughter has been heavily criticised by the hospital staff on two occasions, which is outrageous. She has young children, a husband etc and to leave them for a month or more would be crazy. If the (small amount) of information given had been more thorough, I might have realised that I had little option but to go to live with her.

I was supposed to have a chest X-ray – consultant wanted this pre-op – but it has been omitted from appointments and when I enquire I am told I can “have one post-op”. That seems crazy. I have good contact if I want it with nurses, but had just one meeting with consultant, and as others have pointed out, one does not have all the questions prepared when the diagnosis has just been presented and the decisions are being made.

So, I have ended up feeling very ill and strange, now think I am suffering from “fear of surgery”, had to go to A&E in early hours last week, and after hours of “dry vomiting” and exhaustion was given anti-depressant. Seeing GP today, but I know he is disapproving of the medication. However, he has given me a minute daily dose for the moment. I am seeing him today, with a list, but he never seems to know much or volunteer information.
I have often felt that I will get to the hospital and turn round and come away without the treatment. This is not typical of my attitude, but I am also recovering from the recent death of my husband. I had to watch him having ever more inappropriate treatment at the local hospital, and however hard I fought for him it was not enough.

Normally I would keep things to myself, but I want to say – help!! I will be in a town I don’t know well so that I don’t have to face the local hospital where my husband died, a couple of friends are making journeys to visit me, some of the nurses at outpatients have been very kind, but I need much more support or I am terrified I won’t go through with it, and that I am told would be a one-way street with pre-cancerous condition.

My nature is to get on with things and look after myself, but, will I even manage to get out of bed on my own? Will I be able to survive those first weeks with occasional help? I know everyone is different in their rate of recovery and their attitude to the op, but I do even at my age, feel I will be physically less and mourn somewhat the loss of what makes me a woman.

This might seem like a strange question to ask on a website about hysterectomy but, in fact, it’s highly appropriate. When I founded the Hysterectomy Association over 15 years ago the biggest complaint that most women had about their experience was the lack of information to help them make an ‘informed choice’ about their health and their bodies.

It is a sad, but true, fact that this complaint is STILL the most common one made by women. In the original research I talked about the NHS here in the UK and their commitment through what is called ‘The Patient’s Charter’ to ensure that everyone could give truly informed consent to the treatments that are offered by their medical practitioners.

However, in practice this rarely happens. Medical practitioners don’t have the time to ensure that we have the information we need in order to make those decisions. And yet, knowing that the one we eventually take is the right one for us – not for someone else, but for us as an individual – is absolutely paramount and has been shown to have a tangible impact on how well we recover and cope with whatever treatment we eventually decide upon.

Compounding this problem is the apparent divide that still exists that prevents many of us asking questions of those we perceive to be an ‘expert’. In other words, too many women still feel that they don’t want to appear stupid or silly or concerned when their medical advisor’s are offering a particular course of treatment or surgical intervention.

If there were one thing I would wish for all women undergoing a hysterectomy, it would be that they had enough information at the outset to ask the right questions that ensure the decision they make about their health is the right one for them, specifically.

My aim has always been to challenge these views, to ensure that women have that information and are confident enough to ask the questions they need to. The problem is that too many women find us after the fact – they have already had their surgery and are now trying to shoehorn the information they get into their post operative experience.

So, I’d like to repeat that question – how many women will it take to change the world?

You can answer the question here, by leaving a comment below and between us we will, and can, change the world.

I just wanted to say a big thank you for all the hints, tips, website and personal responses to my emails.  I can’t tell you how well supported I have felt throughout what was a very harrowing lead up to my op.  You may remember I had fought this op for 3 years and was terrified, so much so I had felt like doing something really stupid.  I am 47 and had fibroids the size of cricket balls.

I had my op as planned on 3rd April at 5pm and was back out in Recovery at 7:15pm.  My surgeon said the uterus was monstrous and he didn’t know how I had coped with it as long as I had, it was about a foot long, all knobbly and weighed 2kgs. He had carried out a sub total hysterectomy due to large bulky fibroids but had managed to preserve the lower part of my cervix and my ovaries at my request. Following my initial consultation 10 days earlier, for the first time in about 10 months I stopped bleeding, most likely down to the emotional shock and trauma I was feeling at finally having lost my battle to fight the op.  I then realised I had become urinary incontinent and had been leaking urine.

The constant bleeding, changing and wearing sanitary protection had clearly disguised the fact for some time and I was horrified.  I had put up with indigestion for some 2 years and had put it down to ‘maybe a wheat intolerance’, the bloated feeling I put down to be a ‘bit over weight’!  Who did I think I was kidding?!? My uterus was so large it was wedged under my rib cage.

I experienced some sharp pains immediately post op but the PCA morphine drip kicked in quickly and it became very manageble, so much so they took it down in the morning and removed the catheter.  So 13 hours post op I was out of bed and in the shower.  Yes it was a silly thing to do because I did come over very dizzy and queasy and had to lie on the bed for a few minutes while it all passed off.  I also had some sharp pains to remind me of the surgery but 5 minutes later I was back in the bathroom drying my hair, cleaning my teeth and putting on a bit of makeup to make myself feel better.  The bleeding went to nothing within

24 hours and although a little slow and careful I was up and walking about the ward from day 2. Tramadol and paracetomol seemed to control the pain well and although I had some wind pain which left me a bit uncomfortable on the 3rd / 4th evening, an extra dose of oramorph and a dose of movicol to get my bowels working seemed to help the pain and got me through the night.  Day 5 they wanted to send me home but were concerned about the lack of bowel movement and despite regular doses of movicol not much was happening.  Thankfully one of your website visitor posts had mentioned Lactulose and taking the hint I had purchased some  from the local chemist beforehand and took it with me into hospital.  I took a very hefty dose on top of the movicol administered and finally Day 5 mother nature kicked back in and I could just about say I had ‘moved my bowels’.  I was allowed home.  Two days in bed at home was as much as I could manage and I started pottering about.  I got severe earache from my husband who all but washed his hands of me for ignoring his requests to rest.  I was determined to keep active whilst ‘listening to my body’ and resting if I felt I needed to.  Within 10 days I was pretty much back to normal, cooking, cleaning, washing albeit carefully.  I am now 3 weeks post op and yes I have probably done some stupid stuff, lifting stuff I shouldn’t but the slightest twinge and I stop and resume the well behaved bed ridden post op patient for a rest and so far so good.  Yes I do periodically get a bit of wind pain but it passes if I move about and I haven’t taken any pain killers for about a week.  I feel uncomfortable in my jeans because it puts pressure on my vertical scar.  I had 19 clips removed after 7 days and it appears to be healing well.  I have a very small amount of white discharge but certainly not enough to warrant any pads and is lessening day by day.  I have been warned not to ride my horse for 3 months and not to lift a back of livestock feed (25kg) for 6 months but am hoping for a reprieve certainly on the first point.  I am not driving yet but again hope to get the OK from the doctor in the next week or so.  The indigestion completely disappeared immediately post op and so has the incontinence.

Did I make the right decision to have the op?  You betcha!  Was I a complete and utter wuss who should be totally ashamed of her lack of backbone?  You betcha!  Maybe I was lucky and got away lightly, maybe the worst is yet to come and maybe I will be my own worst enemy and not listen well enough to my body and undo some of the good progress I have made – I don’t know.  All I do know is I am very grateful for all the emails from you, the hints and tips, the website and the support I have received.  It was so helpful getting the facts and not just relying on forums which sometimes only seem to post the horror stories.  Thank you so much Linda, and your team and all the amazing ladies who post what it is really like to go through this.  Without you I may well have not gone through with it and would still be suffering both the symptoms and the agro from my husband, both of which were only set to get worse.

I’m not sure how helpful my story would be to others but if you want to share it, please do.  I hope it might help someone like me who is pre op and terrified.  The after is so much better than the before!  I have already been on the organisation’s facebook page and responded to a couple of posts to try to reassure a couple of people pre op.  I know we are all different and experience it differently depending on the op we have and us as individuals but sometimes the fear is worse than the actual reality and when you’re frightened all you seem to read is the horror stories.

Researchers in Sweden have reported that undergoing the menopause before the age of 47 can result in an increased risk of both mortality and fractures at the age of 77. They followed 390 women who had their bone mineral density measured at the age of 48 and again at 77. The team also collected data on mortality rates and the number of fractures until the women reached the age of 82.

The researchers noted whether the women had gone through the menopause at the time of their original study defining it at 12 months continuously without a period (bleed); they were then divided into two groups who had either already had a menopause and those who hadn’t.

Those women who had gone through the menopause before the age of 47 showed an 83% higher risk of osteoporosis, a 68% higher risk of fragility fracture and a 59% higher mortality rate that the comparison group.

However, the study was not entirely conclusive and the team suggested that a lower bone mineral density may not explain the total fracture risk and that inferior muscle strength or inferior neuromuscular function may also be an indicator.

How this relates to women who have had an early menopause due to a hysterectomy and consequently take HRT to mitigate the low oestrogen levels at menopause is not known as this was not accounted for in the study.

I was told that if I had a Hysterectomy my health would improve and I would never look back, well I had it on the 20th January, had problems in recovery and spent 4 1/2 hours there.

I was told at 7am the next morning that I needed to vacate my bed as it was needed and to be sent home. Home I went, all ok to start but by Sunday night I was in agony. A Doctor attended me and told me if I was in pain again to call him this was 1am; at 6am on the Monday morning the pain was so bad an ambulance was called for.

They took me to A&E where I was for 6 hours before being transferred back to the Maternity Hospital.

I was in agony and placed in a room to either sit on a chair or lay on an examination bed, neither which were comfortable. I was finally given a bed, and sent for an ultra sound this appeared nornmal.  The nurse came onto the ward with peppermint tea and told me to drink because all I had was chronic wind…

I was sick, temperature, dehydrated and in worse pain than giving birth. the next day I was sent for a CT scan and it appeared that my bowel had been perforated and peritonitis had set in.

Another operation that night, a stay in intensive care and high dependancy before 7 days on the ward. thinking the worse was over I was mistaken when the catheter was removed I had a popping feeling and gushing of urine. It now appears I have a fistula, 2cms big to be precise. All I got from the hospital was i had consented for the operation…. yes I had, but when I was told there may be bowel or bladder problems I automatically assumed it was bruising, not something that could take my life.

I have now had 4 operations and having my 5th operation next week to repair the VVF so hopefully after 10 weeks of a catheter this can be removed in 3 weeks….

It has literally destroyed my life, my self confidence and I know in my heart that if I was told the worse case scenerio I would not have consented and carried on living with the pain and discomfort of the fibriod and mild endometriosis….

Apparently I am special, Ithink its the hospital way of making light of the situation as it happens to 1-600 and I happened to be the 1….

Getting over the hysterectomy has been a piece of cake, it’s just all the risks I am now dealing with, I wish with all my heart the surgeon was frank and honest with me.