Can any one help please? Cancellation of ... - Endometriosis UK

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Can any one help please? Cancellation of treatment due to endometriosis

Becky2889 profile image
3 Replies

Hello,

I have been down regulating for 3 weeks now... been for one scan where they found a cyst and wanted me to carry on for another week whether they couldn't then find my right ovary. I ended up having 3 scans at once and the dr then had to scan me... they now tell me that I have got severe endometriosis which is causing both my ovaries to be stuck together behind my womb and to my womb. The dr then proceeded to tell me I would need an operation before any further treatment to get rid of the endometriosis.

In may they found endometriosis on my left ovary. Which they scanned and scanned and told me it would be fine to commence treatment. I was also donating my eggs whilst having treatment- but the dr said to me yesterday that she was surprised this was allowed as it was more than likely to have damaged my ovaries and eggs. Yet I have been led to believe that this was fine?!

The drs are now discussing my case as a "complex" case today and will receive a phone call later with a decision however she said it's more than likely not going to continue as she advises against this.

Where to I stand on the treatment I have paid for as I am private? What happens to the money I have paid? Do I get another treatment in the future with this money or is it lost forever?

I have been left devastated and very confused.

Thanks xx

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Becky2889 profile image
Becky2889
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3 Replies
carrie75 profile image
carrie75

Hello Becky

I'm so sorry you've had such a rollercoaster here. I hope I can help with some parts : ahead of my first ivf they found cysts during the internal scans, and like yourself I was told I needed an operation. I too had ovaries in the same position, they said the endo was severe but they tried to clear it up as best they could. It was a massive shock : I'd had awful periods for years but the usual being told it's all in your head etcetera... fast forward to age 40, fertility clinic and it finally being diagnosed.

We did ivf, then about 10 months later another ivf cycle which they had to change to IUI as I hadn't produced enough follicles (was using different drugs with this cycle). We were paying for this cycle ourselves : the clinic refunded us the money which hadn't been spent on ivf drugs and procedures though, as we weren't able to go any further with the ivf cycle this time. By rights you should be entitled to a refund of any fees not spent on drugs or procedures up to the this point.

I totally sympathise with you, it's the worst feeling when you're already on a rollercoaster with IVF then you get told about severe endometriosis and operations. Look after yourself X X X X

Becky2889 profile image
Becky2889 in reply to carrie75

Thanks so much for relying. You are right it's a massive rollercoaster. It's enough getting your head in gear to sort yourself out to go through ivf and then to be told this is something else entirely.

I just don't understand how they noticed it in may... got started on my injections 3 weeks ago for ivf and then last week get told that everything has to stop... my ovaries are covered and some of my womb they are all in the wrong position and it can't go ahead?! Also that my ovaries and eggs may be damaged. I don't understand how it's been allowed to get that far. Surely they should have explored it further when it was first noticed in may and then the treatment wouldn't have got this far and my hopes either. My head is all over the place.

I know money isn't everything but it's taken us ages to save up for this and I don't want to lose money if we don't have to.

The dr rung me yesterday and said that it was all over and to just contact them back after the operation. I have no idea about the sperm we paid for, what to do with the drugs left over, how we know whether we are losing any money or not. I have asked questions and just got I don't know for answers. It seems to have been a catalogue of errors from start to finish and the communication has been very poor.

Thankyou for replying. I really appreciate it and in some ways it's good to know ur not the only person xx

carrie75 profile image
carrie75 in reply to Becky2889

What a shame Becky, I'm so sorry! I really hope you can get much needed answers and soon. It's such a lot to go through and you don't know what to think with it all, I totally understand your frustration at the delay in getting the endo fully diagnosed.

Let us know how you get on and if we can help with anything on here, I will be keeping everything crossed for you X X X X X

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