Private appointment

[Lou93]

Hi All

So I had my private appointment with an Endo specalist last night and finally i feel he listened to me and my symptoms so worth going private if you can.

MRI scan to take place first then a second lap booked in april to see whats going off, he did mention it could be Endo and Adeno, he didnt see the point in me having an ultrasound as had one last year and nothing showed.

I had a lap in 2015 on nhs under gyne and nothing showed so im only hoping something shows this time as years later i still suffer with pains and other symptoms.

Is it common to have endo and Adeno???

[luthien]

Hey glad it went well!

Hopefully you'll have an answer to your adeno question, as I've no idea xx

[Lou93 in reply to luthien]

Yes let’s hope so I’ve read about adeno so let’s wait and see xx

[Hannah0091]

Brilliant news! It’s expensive but worth it right?! I try to go private where I can for bits! 🙌

[Lou93 in reply to Hannah0091]

Yes just shows you first appointment and all booked in just hope he finds something this time around 🙈 if not don’t know what I’ll do x

[Thecraftyadder]

Private appointments are so different aren't they? I felt relieved last summer when I came out after him saying he thought it was endometriosis and I should have another laparoscopy (had one years previously by a general gynecologist on nhs that apparently found nothing). And he was quite right. Great to know your surgery will be so soon to

[Lou93 in reply to Thecraftyadder]

Thanks for your message and yes they are for some reason they seem to have more respect for you and how they talk to you is so different to how they would under nhs.

Yes I had one years ago and nothing was found so fingers crossed this time with the right surgeon he finds something.

It would of been sooner but he’s away did you get a diagnosis in the end? X

[Thecraftyadder in reply to Lou93]

Yes he found deep infiltrating endometriosis and scarring on my uterosacral ligament and did excision surgery while I was under. Finally an answer after years of suffering!

[Lou93 in reply to Thecraftyadder]

Oh I bet that felt great to finally get diagnosed and have someone make you feel like it’s not just you saying you feel like this.

I’m a bit worried as even though I’m lucky and my lap is end of april I’m not coping well with my pains at the moment 🙈

[Thecraftyadder in reply to Lou93]

I remember dragging myself through the weeks till my surgery (I'd had to ask to wait due to a family housemove). Pain was daily and horrendous, pain meds had become useless and I was having problems walking as I had restricted leg movement on one side (due to scarring on ligament I subsequently found out). But the time will pass

[Lou93 in reply to Thecraftyadder]

It’s not nice is it the pain isn’t as bad some days but today it’s bad hot water bottle is stuck to me but yes all I have to think is not long family keep saying if I’m really bad then go a and e

[Northernmonkee1]

Hi I have got both good luck xxx

[Lou93 in reply to Northernmonkee1]

Thank you how do you manage with both? Xx

[sarahsarah123]

Yes it's very common to have both- adeno is currently under-diagnosed because you often need a really skilled sonographer to see it, and they aren't always available. So no one really knows the true prevalence of adeno but I read one surgeon estimate that up to 50% of people with endo could also have adeno, especially those with deep infiltrating endo.

[Lou93 in reply to sarahsarah123]

Ah this is good to know and yes he said it’s hard to spot it and could of been missed when I had my first lap.

[Northernmonkee1]

My consultant said they use the same treatment ? I'm not sure if I effectively manage with both. Just knowing I have adenomyosis as well helps to explain the heavy gragging sensations when I have a period and the huge clots and bleeding. Knowing helps me to understand my condition.

Good luck xxx

[Lou93 in reply to Northernmonkee1]

Thank you so much I just want to know what’s wrong xxx

[Northernmonkee1]

I am so angry at the lack of info we get and the lack of compassion and understanding. I have been e mailing my MP who has been really dismissive. I think that we all deserve much better. I have some other health issues at the moment but I really think it's time for a change.

I have asked endo uk to put up the info from the Edinburgh info day I attended. It was so good and the professionals up there are doing ground beaking endo work. There was a lady who presented about adenomyosis. I'm sorry I didn't make great notes !!! They talked about a massive gender bias and if this was happening to men there would have been more research.

Professor Andrew Horne presented there and he seemed amazing.

Sorry for the rant. I will keep pestering my MP or sec of health !!

Take care xxx

[Lou93 in reply to Northernmonkee1]

Yes more information is needed around this as I’ve only seen it mentioned in here and had to look online as to what it was.

You too xxx

[Endos]

I have both, well I did until Saturday I went privately and have now had a full hysterectomy with ovaries removed and a full endo excursion so fingers crossed I’ll be sorted soon when the surgery pain dyes down a bit. I have put all my private surgery in a credit card but it will be so worth it to go let pain free and have a life back. Good luck and keep going xx

[Lou93 in reply to Endos]

That’s great news very happy to hear this and hope your recovery goes well☺️ I’ve had to love my lap forward as I’m in that much pain but I’m not giving up fingers crossed he sees something when he looks around keep me updated on how you are and yes it’s worth the money xx