Can anyone help? Cancellation of treatment due to endometriosis

[Becky2889]

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

[emmab178]

Sorry to hear you are going through this. I have endo and had a baseline scan to ensure they could get access to my one remaining ovary before starting treatment. Sounds like yours was missed but I was led to believe that ultrasounds will only pick up cysts and large patches of endo. The only way to diagnose it properly including the extent is with a laproscopy.

Did you know you had endo before all this started? They are probably thinking you need a lap so they can excise the endo and try to get the organs unfused to gain access however that's a complicated surgery.

Sounds like you are falling in the category of having severe endo and that means you need to have the surgery by a bgse specialist not any old general gynae or fertility dr who aren't trained in surgical techniques for endo even though they might tell you they have an interest or done previous endo ops.

I wouldn't think the money is lost but maybe just an extra charge for the drugs and scans youve already had and you have a fully paid cycle waiting for you when you're ready again. However you could push it that they should have picked this up earlier and your not to blame and push back on any extra expense.

[Becky2889 in reply to emmab178]

I had no idea about the endometriosis before all this started. Always had bad periods but nothing to suggest otherwise. Had a scan in may which suggested that I had endo on my left hand vary but clinic appeared to brush over it as such and carried on. Been seen by a 3rd dr and now all hell breaks loose and I'm covered in it according to them. Don't know what to think right now

[emmab178 in reply to Becky2889]

I didn't know anything about endo till they found a massive cyst on my ovary last year. Just got on with heavy periods thinking it's normal.

My clinic completely ignored the endo and as long as the ovary was accessible were happy to carry on.

Bgse accredited surgeons should be the ones to address severe endo but general gynaes seem to think they have the skills to sort endo and can do more damage than good. Would be interesting to know if your ivf clinic can refer you to a bgse clinic if they think it's that bad.

You might have to go via your gp to get referred and waiting times for laps can be a long time.

There's a good fb forum called endometriosis uk support and education group. There's lots of documents on treatment pathways (some drs don't even know about endo specialist bgse centres) and how to prepare for first appointment, first lap etc.

Hope it all goes well x

[Becky2889 in reply to emmab178]

I'm going back to my gp and going from there. But I'll bear your advice in mind. Thankyou for replying. I'm just so confused as to why they let me get to this stage if they noticed it all in may. Just so disappointing

[Linda78]

It must be a really confusing, frustrating and upsetting time but it is better to deal with what you can on terms of the endo before proceeding with IVF - I was told that endo can impact on your chances of a healthy pregnancy as it can create a hostile environment in the womb and they believe that it was one of the factors that led to a previous mc...I then had surgery to remove what they could of the endo and reshape my uterus (this was a separate issue which had been wrongly diagnosed by a previous hospital and 3 different 'specialists' so know how you feel about things being missed!) and have gone on to have a successful round of IVF - endometriosis UK were really helpful in terms of talking through the issues and ensuring that I was on the right treatment path so would recommend you give them a call with any questions.

Really hope you get the answers you need and are able to progress on your journey asap xxx