Sometimes wish I had never bothered – Debra’s Story

My story begins in January 2009 when a routine smear test revealed CIN3 cells and I was advised I would need treatment as soon as possible. I had these cells removed under general anaesthetic in March 2009. My general health at this time was fine but I was then unexpectedly made redundant from a job I loved so went through a bit of low period.

I underwent a follow-up smear a year later which revealed the CIN3 cells were still present but in a less severe form so I was advised to return for a follow up check the following year.

After a period temporary employment I was then lucky enough to find a new permanent job in December 2010 and settled into it well. A year later I underwent a series of examinations resulting in the removal of more CIN3 cells under both colposcopy procedure and again, 6 months later, under general anaesthetic.

In December 2011 I was advised that I had “persistent severe CIN3 cells” and a hysterectomy would be the preferred course of action. I was referred to a Consultant who explained that they were concerned that they could not get rid of the cells properly. At the age of 50 my child bearing years were over so that did not worry me. However, at no time in the previous 3 years had I felt unwell (except following hospital visits) so I was very apprehensive about agreeing to undergo a major operation. The Consultant asked me to think about it and return in the New Year to discuss it with her further. I met up with her again on 7 January 2012 and agreed to go ahead with the operation. At this time she advised she wished to remove my tubes and ovaries at the same time. She explained the pros and cons and I agreed with this course of action. I was then booked in right away to have the hysterectomy on 21 January 2012.

As I had only been with my new employers for just over a year I was naturally worried about taking time off. I was advised I would be off for 4 – 6 weeks.

I went into hospital for the procedure and woke up back on the ward with a catheter and a drip and a blood pressure monitor. Apparently my blood pressure was very low and was to be checked for 24 hours. I felt very unwell and very sleepy so it was the following day before I became properly aware of everything. I was in agony so was given morphine, which had the result of making me violently sick – which is very difficult to do when you can’t sit up. My whole wound site felt like it was on fire and the bruising and swelling was very frightening to see. I had bruises up to my chest and to the top of my thighs. I couldn’t stop crying and when my husband and daughter came into see me that evening my daughter burst into tears because I apparently looked dreadful. I shared a 4 bed ward with two other ladies – both of whom had a hysterectomy under keyhole, and a lady in her 90s who was with us because there was no room in the geriatric ward. She screamed and wandered and needed attention nearly 24/7 so it was useless to try and get any rest. The other 2 ladies were discharged after 3 days.
I was discharged after 6 days (at my insistence) and only if my sister agreed to give me my blood thinning injections (she is a nurse). I was advised to try small walks often and regularly. That was a joke, I barely made the end of the drive before I had to come home again. My 4-6 weeks off became 9 weeks off. I felt drained, ill, weepy and worried for the first 6 weeks and the frustration at not being able to carry out household chores, or walk the dog was dreadful. My doctor would have signed me off for longer without any question but I was desperate to get back to work and try and get back to normal.

My work were fantastic and I was given a phased part time hours return.

Since then my post operation bulge and ongoing pain are a continual worry but no-one seems to want to believe me, or suggest any ways to help. My local GP replied “well you had a major operation”, reluctantly sending me for a scan after 6 months which revealed nothing. I have put on a stone in weight and jumped 2 dress sizes across my tummy. I look pregnant and am constantly tired.

A check up in May 2013 revealed VAIN3 cells in my vagina. These were removed via colposcopy procedure, but returned last November and I underwent an operation under general anaesthetic in February this year to remove them. I am still in a lot of pain and worry about what will happen should the cells return.

My love life is now non-existent. Due to both the pain and discomfort I continuously feel in my tummy but also because my husband is now convinced (having googled HPV virus) that having sex is the cause of the cells. After over 30 years of marriage this is very hard to accept and I worry that, whilst he has the best of intentions at the moment, he will soon tire of a sexless marriage. I discussed this with my doctor who replied that plenty of couples who have been married for over 30 years no longer have sex. So no help there then again.

I thought undergoing a hysterectomy would solve my problems but in my opinion it has made them worse. My next check up is in August of this year and at the moment, I am considering refusing any further treatment.

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