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Premature Ovarian Failure (early menopause)

(7 Posts)
Doris58 Thu 03-Aug-17 14:21:56

My daughter has been diagnosed with Premature Ovarian Failure; blood tests show this has been caused by a faulty gene. This is not an inherited gene but rather a mutation in her genes as she was forming into a fetus.
We only became aware of this particular blood test due to our own research; it appears that (as Professor Robert Winston states) there is an appalling lack of guidance regarding fertility and/or medical training and a rush to send you off to get IVF (and your subsequently money) when it is not always the right thing to do.
Does anyone know if there are any research trials in the UK regarding stem cell treatment in relation to Premature Ovarian Failure; I have researched but found nothing?

isthismummy Thu 03-Aug-17 16:09:14

So sorry to hear of your daughters diagnosis op. It's a horrendously hard thing to deal with. I have very low amh myself and was diagnosed with POF by NHS after one wrongly timed blood test. A diagnosis my private clinic disagrees with given my lack of any symptoms and continuing periods/ovulation. I hope your daughter can get some helpflowers

I don't know of any clinics in this country doing stem cell treatment. However I do know that the Serum Clinic in Athens (my clinic) have started doing stem cell transplants for women in your daughters position. They are an amazing clinic. I would recommend your daughter gets in touch with them.

Good lucksmile

isthismummy Thu 03-Aug-17 16:14:32

Copied this info from Serum Facebook group for you.

Serum IVF clinic has recently launched an innovating project of stem cells transplantation for ovarian rejuvenation.

Our project is in primary stage however we hold high hopes that we will have great results and that the method will be able to help ladies that have pre mature ovarian failure or diminished ovarian reserve.

Stem cells are known for their ability to differentiate into other types of cells according to the environment they are placed into allowing us to reverse the aging proceed in terms of the effect to ovarian activity and ovarian reserve.

For the time being there is no official documentation that we may offer for your reference, however our clinic’s staff will gladly answer to any queries ladies may have on the particular method.

Ladies that are interested in participating, will first need to fill our medical questionnaire and send it back to us if not already registered in our clinic's patient data base so that we confirm that the method is suitable for them and go through the details of their individual plan.

For the practical part of the method:

As a first step and in order to have the stem cells the participant will need to collect the period bleeding sample on her cycle day 2 or cycle day 3 by a moon cup around five to six hours before you come to the clinic.

We need to collect the sample here at Serum clinic because it needs to be put in a special culture medium directly upon collection.

We need approximately 3 to 4 weeks for the stem cells cultivation according to each lady’s cells growing rate.

Once cultivation is completed we have two options for the stem cells transplantation.

Stem cells transplantation via laparoscopy
Trans vaginally stem cells transplantation ( with a process similar to egg collection)

As for the financials, the cost for the stem cells cultivation is only 1000 euros for this stage of the project that is considered experimental.

If we need to freeze the stem cells there will be additional cost of 300 euros for the freezing and thawing.

For the transplantation, the cost may be either 4500 euros if it is done via laparoscopy or 1000 euros if transplanted in the ovaries trans vaginally under ultrasound guidance and sedation.


Requirements:

We need you to have tests for FSH, LH, E2 and AMH on day 2 or day 3 of your cycle, prior having the treatment you may have them with us at the cost 170 euros.

We also need you to have tests for Hepatitis B, Hepatitis C, anti-HIV I -II, Syphilis and an ECG dated no longer than 6 months. In case of transplantation via laparoscopy these tests will be done as part of the pre operation tests at the hospital.

A vaginal scan for the assessment of the ovarian activity.

Signed consent forms for the stem cells cultivation, cryopreservation (when need be) and transplantation (via laparoscopy or trans vaginally)

fififa Sun 06-Aug-17 12:16:22

I am sorry about your daughter. I am not an expert, but have you considered freezing eggs? A friend of my sis (cos of waiting for Mr Right) travelled to top IVF clinic in Gdansk to freeze her eggs.

Doris58 Sun 06-Aug-17 15:19:47

Hi, Thank you for your help, unfortunately it doesn't apply to my daughter. My daughter and her husband really want to have a baby now, whereas, your friend wanted to wait until she had a partner.
The whole fertility "business" is just that, a massive, lucrative business trading on people's hopes for the most precious thing they can imagine, which makes trying to find genuine help from professionals very precarious.
I have just watched a Panorma programme, which lays out the lack of value in 27 of the "add ons" offered even by, so called reputable fertility clinics; the dreadful thing is some can even reduce your chances of getting pregnant. www.youtube.com/watch?v=iy6nZI_eIRs
So many clinics advertise that they have "60 success rate of pregnancy", when in fact, what we really need to know is how many of those become live births; after all pregnancies that last a few days does not reassure the patient that the treatment is useful. We also need to see a comparison with people, who are in the same medical situation but have got pregnant without treatment to see if the treatments are really of any use at all. All we can do, is to keep trying to find a place that can present clear research, which has been validated.

MrsEnger Mon 22-Oct-18 16:03:07

Hi Doris, I'm under same condition as your daughter. Some time has passed since your post, I wonder if you guys found any solution, and if it worked please? Thanks.

MrsEnger Mon 22-Oct-18 16:04:19

Also I've found an article which may help you guys. I'm considering going to Athens and have a look there:

www.newscientist.com/article/mg23130833-100-menopause-reversal-restores-periods-and-produces-fertile-eggs/

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