Mumsnet has not checked the qualifications of anyone posting here. If you have any medical concerns do consult your GP.

2016 - mission to prove wrong diagnosis

(4 Posts)
Disco68 Sat 30-Jan-16 14:18:44

5 years ago i stopped my pill and never got my period. I felt my body going through changes and would joke that I was going through the menopause. 3 years after no period I got the diagnosis of Premature Ovarian Failure. I was only 24.

The low libido, vagina dryness, hot flushes, increased depression all made sense. I eventually agreed to take HRT - this medication send me round the bend and resulted me having a breakdown. Iv been given anti depressants that i now wouldn't be without making me feel somewhat normal again and cope with my diagnosis.

July 2015 I met my boyfriend - I eventually told him about my POF and he supported me and has stuck by me. However I know the low sex drive effects him. So I started trailing the internet for ideas. I'm now 27 and if I don't try and do something now to help with my symptoms then it maybe to late.

It's not that I don't believe the doctors and my diagnosis of POF but I just wanna be sure that I tried everything before it's too late. So the mission to find my period begun....

I started taking Vitorize, Multi Maca, Royal Jelly and Bee Pollen from the Forever Living range. I noticed a marked improvement in my mood and a slight reduction in my hot flushes.

I then saw great comments on acupuncture - this I started 4 weeks ago!! My hot flushes have reduced massively to very mild to some days none at all. Libido seems to be improving along with the Vaginal dryness. I absolutely love acupuncture now - always can't wait for my next appointment and acupuncturist always gives me great advice on my diet and health.

As I can see an improvement - I feel a little hopeful!!! I'm not naive - this could be helping my symptoms of my POF and that anyway I would thankful for cause it has caused me a lot of discomfort and upset over the last 5 years but I'm hopeful that soon a period may appear and if it does I'll be over the moon.

Just wanted to see whether anyone else out there has been in the same position - has acupuncture helped you or what has helped you?? I'd be very interested to hear all stories!! Thank u

PollyPerky Sat 30-Jan-16 16:17:20

Hi Really sorry to hear about your POF. It must be very hard for you.
Have you heard of the Daisy Network? www.daisynetwork.org.uk
The consultants behind it are based in London at the Chelsea & Westminster Hospital. I really recommend reading all parts of the site and maybe joining the forums there, or going to some of their local groups.

Is HRT working for you?

If it's not and you are still getting hot flushes and other symptoms, have you been back to a consultant to talk this over?

At your age, you need a lot of oestrogen to replace what you don't have. What are you using now? What's the dose?

You could also be prescribed testosterone to help with your libiodo.

It's really important that you see a consultant to discuss all of this.
As far as I know, if you have POF that means you egg reserves are low and I don't think there is anything that can change this.
Has anyone said why you have POF- do you have any genetic risk factors?

Disco68 Sat 30-Jan-16 18:02:27

No i haven't heard of them - tbh I have been given little information or support. I will look in to it. Thank u

I have stopped taken HRT - because it wasn't for me - it caused me to have a breakdown and I couldn't cope with the symptoms. The hot flushes came back when I stopped taken the HRT but since having acupuncture they are slowly disappearing.

I'm aware that I need more eostragen especially for my bones and the risk of osteoporosis however my doctors are not concerned at this stage and a bone scan has confirmed that everything is normal.

My diagnosis came as a result of absent of periods and FSH levels high. I hope this may have dropped since having acupuncture.

As I said I'm not denying that I have been diagnosed with POF but I'm hopeful that they may have got it wrong due to the fact they haven't been able to be advise me properly on any medication or alternatives to HRT. I just wanna hear people stories following having acupuncture in absent of periods to help bring them back

PollyPerky Sat 30-Jan-16 18:40:23

Okay- have you had a formal diagnosis of POI from a gynae consultant?
If you have not then you must insist your GP refers you.

You are far, far too young to have no oestrogen. As you have said, the risks to your bones but also your heart are considerable, not in a few years but in perhaps 10,15 or 20 years from now. If the type of HRT you were given there are many other types to help out there. HRT should make you feel better not have a breakdown!

I can't believe your drs are not concerned- that's negligent.
The standard treatment is HRT. This is in the recent www.nice.org.uk/guidance/NG23/ifp/chapter/Premature-menopause-premature-ovarian-insufficiencyNICE report. But you ought to be referred to an expert to have further tests.

Information for the public [NICE report]

Premature menopause (premature ovarian insufficiency)
Diagnosis
Treating premature menopause
If menopause happens before you are 40 it is called premature menopause (or premature ovarian insufficiency).

Diagnosis

Premature menopause is diagnosed using your age and symptoms, as well as information about your family history and medical history (for example, whether you have had medical treatment that is known to trigger menopause). If you are under 40 and having no or very few periods you should be offered blood tests to measure your levels of FSH (follicle-stimulating hormone). You should be offered 2 blood tests for FSH, which should be done 4–6 weeks apart (this is because your FSH levels change at different times during your menstrual cycle).

If it is not clear whether you are in premature menopause, you should be referred to a healthcare professional who specialises in menopause or reproductive medicine to confirm your diagnosis.

*Treating premature menopause

Treatment for premature menopause usually involves HRT or a combined hormonal contraceptive.

Your GP should explain that:

it is important to continue treatment until at least the age of natural menopause, to give you some protection from osteoporosis and other conditions that can develop after menopause

the risk of conditions such as cardiovascular disease and breast cancer rises with age and is very low in women under 40

both HRT and the combined contraceptive pill are good for bone health

HRT may be better for your blood pressure than the combined contraceptive pill

HRT is not a contraceptive.

Hormonal treatment is not suitable for some women, for example if you have a history of breast cancer or another type of cancer stimulated by the hormone oestrogen. If hormonal treatment is not suitable, your GP should discuss other possible treatments with you and should give you information about bone and cardiovascular health.

You may also be referred to other healthcare professionals who have the right training and experience to help you to manage different aspects of your condition.

_____________________________________________________

Acupuncture has some success in relieving menopause symptoms but tbh it's not appropriate for women as young as you who need oestrogen.

If you read the info on the Daisy Network you will see that in 5-10% of women with POI periods come back sometimes.

I don't know where you live, but why not ask your GP if he can refer you to the POI/ premature meno clinic at the Chelsea & Westminster, London.

You really need proper professional help and treatment - first with a proper diagnosis and then treatment.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now