A service evaluation of women attending the menopause/premature ovarian failure clinic of a tertiary referral centre

Abstract

This service evaluation aimed to characterise the referrals to the premature ovarian failure clinic, including the type of referral and patient needs, in order to plan for future service provision. The majority of women seen in the clinic experienced idiopathic premature ovarian failure, were aged 30–39 and were nulliparous at the time of diagnosis. Our service requires to be tailored to their needs. For many women, this includes a fertility consultation in the clinic and this part of the service is well used. Our data support the long-term follow-up of women both on treatment and those who initially decline treatment. Most women who initially decline treatment accept it after a few clinic visits. This may be due to consistent advice on the benefits of oestrogen treatment or due to yearly bone scans showing a change in bone density. There was a high non-attendance rate in this group: 21% of appointments were not attended.

Keywords::

• Premature menopause
• premature ovarian failure
• primary ovarian insufficiency
• Women's Health Services

Declaration of interest: The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Appendix

A patient's story

I initially had very few symptoms (or so I thought). After the birth of my son, I was diagnosed with postpartum thyroiditis and so my moods and energy levels were swinging somewhat as I went from hypothyroidism to hyperthyroidism and then back to normal.

Once I came off the thyroid tablets 10 months after the birth, I missed a period. I was 30 at the time and we were hoping to start trying for a baby immediately. I had a sleepless night, worrying that it might be something to do with POF as I had been experiencing severe migraines and some night sweats and my mother had had POF from age 40. I rationalised with myself that it was unlikely to be this after just one missed period, but I duly booked a GP appointment in order to check my thyroid levels and asked for an FSH and LH test at the same time, just to be sure.

I waited a couple of weeks for the results, and had to fight to get an appointment with my GP and so asked for my test results over the phone. At that point, the doctor agreed to give me an appointment but said there was nothing to worry about, so I went along thinking everything was fine.

However, when I arrived, the GP told me straight out that I had had my menopause and that I would have no more children. I could not believe what I was hearing. I left the appointment feeling as if I had been hit by a bus. I literally didn't know which way to turn or who to call. I tried my husband, and my mother, but to no avail and since I had a meeting at work immediately, I returned to work in a haze.

Over the next few days and weeks I spoke to some medical professionals (but not experts in the area) and did some research, and came to the conclusion that something could be done, there must be some technique out there to let me have my own baby, or at least the results must be one off, and if everything was tested, it would actually work out fine.

I got referred to see a doctor privately and after several tests and written results, she delivered another blow – I had had the menopause and there was nothing I could do. Up until then my husband hadn't believed the results and thought we would be able to ‘fix it’ somehow.

We walked back to the station in a blur after a 10-minute appointment. I was crying, he was hugging me and neither of us knew what to do. Up to this point, we really hadn't had any explanations as to what would happen next or what treatments I would require. We are both from large families and our whole outlook on life was based around having lots of children and planning for their future.

Before the diagnosis, I had FSH and LH tests as well as AMH and transvaginal ultrasound, all coming to the same result. I received my AMH results by post, just saying ‘your AMH level is 0.3 and therefore any fertility treatments would not be successful’ or some such wording. It was devastating. My fragile X came back negative (thankfully), but I have osteopenia.

After that, I started researching furiously and read everything I could on the internet and in books. I found information about immunosuppressants and transfer of healthy cytoplasm to my eggs, but haven't been able to follow this up in real life, as the treatments are still rather experimental. I read very good things about DHEA, but have no idea how I would get hold of the right concentration and would want to make sure that it is safe.

All of my research and thinking is surrounding in having another baby. I don't even really care that much about the other symptoms/side-effects/issues with being on HRT for many years at the moment. I am sure that will come, but at the moment all of the above seem to be psychologically manageable, bar the lack of having children, which I really cannot come to terms with.

I agreed to go on HRT as some of my research suggested that it could help me ovulate the last few times. I am still keeping my fingers crossed!

I then had an appointment at the premature ovarian failure clinic at Guy's. One of the doctors sat down with me for about half an hour (or more) and talked through ideas and options. She discussed all the different types of HRT with me and how I would move forward through the process of egg donation if I so wished. At that moment, it seemed too hard to think about, but I left the clinic feeling as if someone had listened to me, and that things might end up OK in the end, trying to be positive about the fact that I have one child, and with an HRT prescription in my hand.

A few months later my husband and I visited the clinic again. We saw a doctor from the Assisted Conception Unit, and by then, I was fully informed about egg donation procedures, success rates, ethics, online and offline charities and groups and felt ready to explore the options further (and associated costs which are HUGE!). She was incredibly compassionate and kind and made the whole process sound easy and possible. My husband and I came away in a positive mood. We have been referred to counselling ready to get the ball rolling.

Two months further on I feel OK about everything. I still believe somehow I'm going to experience a miracle pregnancy and won't need egg donation, but have also come believe that if I ever do go down that route and if it's successful, then I hope and believe that I'll love the egg donor child as if he/she were my own. We are hoping to start to look for an egg donor in a month or so.