"Lack of knowledge for polycystic ovarian syndrome"

About: Barking and Dagenham PCT Queen's Hospital / Gynaecology

(as the patient),

I am writing this complaint as I have had enough with what I feel has been the lack of treatment available to me. For some reason I think I have had no luck with the NHS services for the almost six years I have had PCOS (Poly cystic Ovarian Syndrome).

Firstly, I went to my GP at age 15/16 as I was experiencing a lot of lower abdomen pain, he said it was just the muscles in my tummy and gave me pain killers. A few months had passed and my parents rushed me to Fanshawe Health Clinic late at night, I was in so much pain and couldn't even hold my head straight. The next day I was given an ultra sound scan which showed I had a cyst the size of an egg (quoted from my GP) on my left ovary. I was referred and was given an operation date to remove the cyst, although when my CT scan came back two weeks before the scheduled operation date, I was informed the cyst had gone by my consultant Dr Tebit. I think Dr Tebit was the best consultant I have seen, and now I just have to see other gynaecology consultants.

To cut a long story short, I was rushed to hospital aged 17 with extreme pain they said it was a possible burst cyst and was given Diazepam and sent home. The PCOS causes me a lot of pain and I have learnt to live with this now, I have been given Microgynon, Marvelon, Dianette and Yaz birth control to aid the PCOS, but every time I take it, I get side effects (tiredness, dizziness, depressed, mood swings, diarrhoea) and I just nap all the time.

I went to my GP at Five Elms Medical Practice who is great and I appreciate his help. I think he is the only GP I have seen who genuinely cares about me as a patient, this was June 2009. He sent me for an ultra sound to re-assess my PCOS which I waited two months for an appointment. There they carried out an internal camera scan and confirmed I have still got PCOS. I went back to my GP three weeks after to get the referral to the gynaecologist, he had some problems with the choose and book system as it wasn't finding Queens Hospital. I was informed by the secretary that a letter would be sent. After chasing this up for three weeks and having been promised another and another would be sent out, I called and said don’t bother as I will come and collect it my self.

When I called and made the appointment over the telephone with the gynaecologist, I was given an appointment for four months later. I asked the advisor whether I could get an appointment sooner; he replied to me that I couldn’t as they were all booked, the sooner you call the sooner you get an appointment. I would have done this if I had received the letter from the secretary.

So when I went to see the doctor at Queens Hospital, I asked if I could be given Metformin or another type of treatment other than birth control. He refused to give me any other unless I was trying to conceive. I was given a prescription for Yaz birth control, even though I discussed the troubles I get with it. I was told to get a Marina coil fitted and to see a nutritionist. I said no matter how hard I try it doesn’t help (four months at the gym two hours, 3-4 times a week cardio and low carb low sugar diet) and I was told to see a nutritionist as I hadn't seen one on the NHS yet.

I walked out upset as I felt it would be the same thing over again. I was given an appointment card to see the doctor in a few months time which I gave to the receptionist. Yet again I have received nothing of the sort, nearly a month later I have to call and see what’s going on. My next appointment is in April 2010.

I feel the Yaz prescribed has caused nothing but grief for me as I knew it would. I started a new job, with diarrhoea, hot sweats and now my lower abdomen is hurting more. I can’t get to see the doctor until the date above, the excess hair growth has set in and I feel absolutely ashamed with the NHS.

On the NHS web site it has a list of treatment for PCOS and I haven't seen one of them. I would like to know what is going on?

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Response from Queen's Hospital

Thank you for your recent feedback on your experience whilst under the care of Queen's Hospital. Although you have an appointment arranged for April 2010, if you are continuing to have problems we would make like the opportunity to address these issues for you at an early stage. The Consultant has confirmed that she would be pleased to address whatever concerns you may have at an early stage. As an initial step could you please contact the Patient Advice & Liaison Office either in writing, by email, or telephone. We would need your name, address, hospital number (if known), and your contact details. We will then be able to consider how best to respond. The address is Patient, Advice & Liaison Queen's Hospital Rom Valley Way Romford Essex RM7 0AG You can alsoemail PALS.
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