Stefanie's Story

I am 33 years old, divorced with 2 children, a boy of 7, Jacob, and a girl of 5, Annabella.  I live in Lincolnshire, in England quite near to the East coast.  What follows is quite long, so please bear with me!!

Annabella was born in March 1998, she had been conceived whilst I was using birth control, and so when we came to look at future birth control issues, my then husband persuaded me to have a tubal ligation (primarily because he wouldn't go for a vasectomy).  Although I knew that I am very maternal, and would happily have had more children, I believed that my marriage was going to last, and didn't want to jeopardise it by disagreeing with my then husband, and there were also problems with me taking 'the pill' long-term.  I was sterilised with filshie clips in December 1998.  It is important to note that I was not taking 'the pill' prior to my operation, as many doctors have implied that my symptoms are due to withdrawal from this - they then look very confused when I explain that I wasn't taking it!

Anyway, here I am 5 years later, thoroughly regretting the decision, not solely due to the breakdown of my marriage, but rather because of the pain I have to endure during my monthly cycle.  I am due to begin a nurse training course (3 years full-time) next September at a base some 30 miles away from my home.  I am naturally worried that if my problems are not on the way to be sorted by then I will really struggle with the coursework - due either to the pain or to being dosed up with painkillers.

I was divorced in the year 2000 and although I was beginning to experience problems at that time, I put them down to stages of depression due to the break-up.

The first symptoms to show were mood-swings, together with menstruation pain on alternate months.  This pain was linked with lower back ache, and strange aching sensations down the tops of my legs.  By late 2001, the pains were becoming increasingly unbearable, and were also occurring mid-cycle, I visited the doctors early in 2002 as the pain was now beginning to surface every month, and I was sure that it was linked to the sterilisation.  My doctor's surgery has 6 GPs and you can see whichever one you choose to, this being so I decided to visit a female doctor.  She assured me that my problems could not be linked to the tubal ligation, and carried out a number of tests to check for any minor causes.  She then prescribed me the 'mini-pill' and suggested I try that for a few months.  This had absolutely no effect.  I was still getting pain at menstruation and mid-cycle, and so I revisited asking her for further intervention.  I was then prescribed Mefenamic Acid (a NSAID) to take during my menstruation and if needed at ovulation.  When this also had very minor effect (by this I mean a slight lessening of the cramping) she referred me to a gynaecologist with a recommendation that I try the Mirena coil (a hormone coated IUD).

I saw the gynaecologist in Aug/Sept 2002 and he re-iterated that there was no way the sterilisation could be causing my problems - he said there were no known links between it and increased pain apart from in ladies who had taken the contraceptive pill prior to the operation.  He thought I probably had endometriosis, and wanted me to continue with the Mefenamic Acid, and arranged to see me for a laparoscopy.  This procedure was carried out in February 2003.  I have seen the letter he wrote to my GP following the operation, and it stated that there were no visible problems with my organs.

At the same time as the laparoscopy, I agreed to have the Mirena fitted in the hope that receiving hormones at the source of the pain would help.  I was reviewed in May 2003, just as my 1^st period following the operation started.  I was uncomfortable, and had barely stopped bleeding since the laparoscopy.  I explained that I couldn't really tell if there was any improvement, and asked for a follow-up appointment to be made for a few months time. The gynae told me that if this didn't work I would have to either have ablation treatment or a hysterectomy.  My periods just seemed to deteriorate completely since the insertion of the coil.  My mid-cycle pain was excruciating, and I was in agony for a full week before my period and then for the duration of it too.  I calculated that I am losing at least 40% of my time to the pain.  My GP prescribed me co-codamol painkillers to help, but by August 2003 I had had enough and had the coil removed.  This was a month before my next gynae appointment.  My GP re-iterated that my only options were the ablation or a hysterectomy, but when I said that "no diagnosis = no treatment" she discussed my case with the gynae and suddenly he suggested they could do more exploration.  This would basically be in the form of taking the pill back-to-back (which they know I can’t because of a family history of thrombosis) or a prostrap injection, which shuts down the ovaries.

I saw the gynae again in September 2003, and he stated that there was nothing wrong with my tubes - they were perfectly healthy - but that the clips were missing, and must have migrated to elsewhere in my pelvis.  He stated that I shouldn’t worry about this, as they were harmless! (Oh yeah - like the sterilisation?).  He now thinks that I am suffering from adenomyosis  (sp?) which is like endometriosis but in the lining of the womb, and can only be found at hysterectomy (convenient - huh?).  He proceeded to put me on the waiting list for a hysterectomy, regardless of the fact I don't one, as he said it was a no obligation option, and again suggested that I try the prostrap injection, as shutting down my ovaries would 'prove' to me that his diagnosis was correct.

I was obviously upset at the time of my appointment and kind of just nodded through it, but when I got home I was so angry!  I visited another doctor at my surgery, a man, and found him very supportive.  He agreed that shutting the injection was not a good idea for me at this time, as it could also reinforce my feelings about the cause of my problems.  And he has referred me for a second opinion. In the wording of this new referral letter the doctor stated "we would value your opinion before writing to the PCT (Primary Care Trust - the local hospital management centre) to request funding."   Hallelujah!! A doctor who can empathise!!! 

I now have to wait for between 2 - 3 months for this new appointment, and most likely he will echo what the first gynae said, but time will tell, and I'm not going down without a fight!