Bianca's Story

My partner and I made the decision to start trying for a baby over eight years ago (in 2002) after I had been on the Pill for some time. I stopped taking it and my periods were relatively pain-free for about eighteen months.

Having no success conceiving we underwent various tests - all of which came back normal apart from an ultrasound scan showing a very small cyst on my right ovary. In 2004 I had the cyst removed via laparoscopy. Although the gynaecologist felt the cyst would not have prevented me from getting pregnant, he was unable to find any other problems and said my infertility was unexplained. He also recommended taking the fertility drug Clomid, and I was placed on the waiting list for IVF. As we were due to move house, I passed on our new address.

By now my periods had become more painful, and I was experiencing the symptoms of what I now believe to be endo, all of which I explained prior to the laparoscopy. My periods were getting increasingly painful; I was having these excruciatingly painful attacks, which left me writhing around the bathroom floor, unable to pass a stool. More often than not I would become very faint with the pain, and on one occasion I actually fainted, scraping my face on the bathroom door.

I went to my GP who said I needed to have a baby! Some hope! She prescribed Mefenamic Acid. This eased my symptoms a little for a short time.

In October 2005 I moved house and changed doctor. My symptoms continued. I decided to write a detailed account of what happened every month and showed it to my GP. She felt I was suffering from IBS and referred me back to the gynaecology department. The scan was very painful, it was felt there may be some cysts present on my ovaries but the staff member carrying out the scan became irritated and officious when I asked questions. Several weeks later I received a letter stating everything was normal.

Around the same time I began taking Clomid but became very ill with viral pneumonia and it was April 2006 before I began to feel better. I had not heard anything from the hospital so made an appointment to attend Gynaecology outpatients. It transpired that they had sent the details of my IVF to my previous address! If Id not made the appointment I was soon to be taken off the waiting list, not to mention the breach of confidentiality.

Although most of the 'attacks' of endometriosis I suffered were violently painful and left me exhausted for several days afterwards, they were sporadic, so because the pain came in varying degrees I managed to live with it. I had been told by the hospital that everything was normal and I trusted this diagnosis.

In October 2006 I began artificial insemination. It was during this treatment that a nurse stated she could see patches of endo on the scan. No importance was placed on this with regards to either my health or fertility, and as far as I am aware she did not pass this on to a consultant at the time. During the second cycle I over-responded to the drugs and the cycle risked being abandoned. Further scans were carried out at the time, but again I was informed that everything looked normal.

I spent New Year’s Day 2007 writhing around a friend’s bathroom floor in absolute agony. This attack lasted several hours, and again the blood flow stopped; everything became totally obstructed. I did not return to work for several weeks due to the exhaustion and stress I was under due to receiving fertility treatment. I started the third cycle of artificial insemination, but I over responded to the drugs and the cycle was abandoned.

I continued to experience these bouts of terrible pain, were it would feel as though there was a knife slashing across my abdomen and up my back passage, along with the feeling of having my reproductive organs rung and squeezed repeatedly. This often took place in the early hours of the morning. I’d finally get back to sleep, exhausted, after rocking back and forth on the toilet in an attempt to pass the stool, which as it passed through felt like it was scraping the back of my right ovary with shards of glass. I would feel faint, sick and almost unable to walk due to the swelling and feeling of being punched. Again attacks to this degree were sporadic so I continued to cope.

In September 2007 I began IVF, but even on the lowest dose of fertility drugs I over-responded seriously. Although the consultant was very worried, the cycle went ahead. It was not successful. A nurse stated that this was a typical polycystic ovary response and that they had at some point seen chocolate cysts on my ovaries. I was told not to worry about this as women are so hormonal these things may not be apparent on the scan the following month. When I questioned this with the consultant she refuted this categorically as I did not display any of the symptoms for polycystic ovary syndrome. I now believe the over-response to be due to the presence of endometriosis.

In August 2008 I had the most horrific attack on the beach. I went into shock. On my return I visited my GP (a new one) who believed it to be endo. She referred me to the gynaecology department of a different hospital, to be ''looked at with a fresh pair of eyes''. I was examined by a doctor who said it didn’t feel like endo, and then in February 2009 I had a laparoscopy. Still very groggy from the anaesthetic, I was told I had mild adhesions covering my ovaries and fallopian tubes due to pelvic inflammatory disease, possible Chlamydia, but not to worry about my tubes as I didn’t need them for IVF. I was devastated; it was the lowest point of my life.

With financial help from my Nan I made an appointment to see a gynaecologist privately. As I felt this would help speed up the treatment process. The following month I had a third laparoscopy which revealed I had stage four endometriosis and both of my tubes were blocked.

The following weeks brought mixed emotions; on one hand I felt huge relief but on the other I felt totally let down and cheated of time. Talking to the consultant felt like someone had switched the light on; he was extremely knowledgeable, but very easy to talk to and positive, which was something I had not experienced before. Finally I was talking to someone who understood exactly why I’d been experiencing these attacks of pain. He also felt that the 'chocolate cysts' that had been seen on my scan was not polycystic ovary syndrome, but was in fact, endometriosis.

Soon after, I wrote to the hospital where I had received fertility treatment, and an official enquiry took place. However, the response I received was defensive and they took the line that I must have developed endo after my treatment there.

I have just had a laparoscopy to remove the endo, and considering the amount that needed to be removed, I am very lucky to have both ovaries back to normal. They were unable  to unblock my right tube and think it will not function properly.

I still feel very angry at the both the level of care I originally received and myself for not questioning things further. However, I am trying to be positive, taking care to eat healthily and visiting a homeopath. I would hate for this to happen to anyone else and so I hope that my story (as long as it is) will go some way to help others.

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