"infertility misdiagnosis"

About: Heavitree Hospital / Peninsula centre for reproductive medicine

(as the patient),

When I was approx 23 I went to the doctors experiencing bad period pains and cramps at other times of the month. I was eventually sent for investigations and was found to have endometriosis. I was advised to take the contraceptive pill continually to prevent further growth - which I did for several years. The pain didn't lessen and I was sent for a further investigation. I asked the surgeon if 'while he was up there' he would check out my fertility as I was concerned that the pains could be related to problems, he agreed to carry out a lap. and dye. He subseqently reported no evidence of endometriosis but that my tubes were blocked - one showed no dye spill at all and one ballooned before leaking a small amount. He advised that it would be difficult to conceive with this problem. At this time I wasn't trying to conceive, but obviously became concerned.

I later met my current partner and we decided to start trying for a family as soon as possible, bearing in mind the advice of the previous surgeon. We started trying when I was 30. After a year, and no luck, I went to my GP who referred me for fertility tests. I had all the usual blood tests etc, which revealed no problems. I was ultimately sent for another lap and dye test. On arrival at the hospital the consultant I spoke with looked at my previous test results and said that a lap and dye wasn't appropriate as it was obvious from my previous results that the tubes were 'badly damaged by infection,' and 'recommended going straight for IVF following removal of these tubes.' I recalled that the previous surgeon had said that the tubes could simply be blocked by mucus but she dismissed this idea and said it was obviously scar damage from infection.

I was mortified. I have always been tested for infections, as part of pain investigations, and tests have always been negative. I was keen to follow the surgeon's advice and have the damaged tubes removed and go straight for IVF as teh consultant said that tube damage could negatively impact upon the success of IVF. My partner however was very much in favour of getting a second opinion as he is mistrustful of authority (thank goodness!) So we opted for a further lap and dye procedure which we had - and which revealed perfect tubes with no damage or blockage at all - both had full dye spill.

We returned to the consultant who continued to move me through the procedures leading up to IVF as we still hadn't conceived, though no reason for this had been found as I was ovulating and everything else seemed normal. We reached the hurdle of my partner providing a sample, which he was simply unable to do. He found the investigations too personal, too intrusive and very emotionally damaging. As a woman I am fairly used to being subjected to a battery of probes, smears, scans etc. but men are fortunate enough to be largely spared this. Anyhow, it became obvious that our relationship would fall apart if we pursued further fertility investigations so I met with the consultant to explain the situation.

I was heartbroken but it was the only option for us at that time. I asked if we would be able to return to this position if, at a later stage, we could continue but was told I'd have to start right at the beginning and repeat all the tests I'd had up until that date - putting us back another year or more. At this stage I was 32. I had no choice but to withdraw from treatment, with sadness. The consultant showed little understanding at my partner's feelings and even patronisingly suggested I 'told him how important this was.'

About a month later we received a letter through the post, cc'd to my GP, that pretty bluntly said my partner had been 'unable to take his part' in the testing and that maybe 'when he felt able' we could start the process again. I really felt hurt that she'd shown such lack of understanding. I can't believe we're the first couple to find the process painful, stressful, humiliating and intrusive.

Six weeks after making the decision to withdraw, I fell pregnant naturally. Sadly, we miscarried. However I am fertile, I am able to conceive and am concerned that we were told my tubes were so damaged they should be removed and IVF started immediately even though there was nothing wrong at all. Had I followed the consultant's advice I really would be infertile now.

My faith in the medical profession has taken a real battering. I am a resilient and intelligent woman yet I was made to feel pathetic (through not forcing my partner to masturbate into a pot), dirty (through being told I'd contracted an infection that I hadn't), dismissed (through being told to have my tubes removed and being tutted at when asking for a secon opinion) and quite scared of trusting the medical profession again. How many women and men have to go through this?

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