pre lap care (long post)

[Luna-rat]

I haven’t had my endometriosis confirmed by lap yet, I’m awaiting mri and I’m on a 2 year wait list for laparoscopy surgery after 8 nearly 9 years of waiting to be somewhat listened to-

I had my first gynae app on the 16th and was told I could use contraceptive to help the affects until my lap (in 2 years!) and an mri

I was speaking to a friend who has endo and she recommended I go to/get referred to a specialist for my surgery and an endo nurse ect to talk through my other symptoms and I was confused as to why I wasn’t initially offered this seen as the place I go has an accredited endo unit, so I call my dr for a referral to the unit and she asks why I want a referral so I explain it’s because I’d like to speak to them about my other bodily symptoms not relating to gynaecology and so they can do other tests to rule out testable possibilities before surgery and many other reasons that I won’t exhaust

She goes on to say my lap is already going through the endo unit (*why didn’t she say that before asking me why I wanted a referral and why did nobody tell me this at my appointment*) and what do I want to see them in the meantime for?

So I responded with the same reasons I’d already said and so I can know what symptoms correlate to possible endo and what are unrelated so I can get them addressed separately and I was met with “well until the Lap we don’t know you have endo so we don’t what what correlates and what doesn’t there’s nothing we can do until then”

I’m very confused as my friend had an endo specialist, and endo nurse, an appointment with a pain specialist all before her lap surgery?

Am I just supposed to deal with all these other symptoms with no help or investigations? Do I get no treatment or care before my lap diagnostic? I’m at a loss?

still not heard back about my mri or when it will be booked for

[TennisCourt]

Hey hun! I am in the same position as you.

NHS just been fobbing me off for the last two years so I booked to see a private Endo specialist last week (cost £170) and she said I needed a lap and I’m on the NHS waiting list which is 18 months.

For me, I can’t wait that long so looking into private surgery options, where their lists are 4-8 weeks.

Now, my specialist said if I wanted to wait for the NHS then I could go into temporary menopause which is apparently meant to improve symptoms, but can’t see I’m keen on it, heard good and bad things.

Sounds like your GP isn’t very nice. Mine doesn’t know much about Endo but is absolutely lovely and tries her best. Maybe swap GP? I find women doctors are more helpful and understanding.

And then maybe discuss temp menopause to try help you in the mean time but research your options for sure.

Hope you get sorted soon lovely it’s not nice this waiting around part xx

[Luna-rat in reply to TennisCourt]

I can’t afford to go private:(, I always request a woman for that reason and many others so it was! Unfortunately I don’t seem to have much luck with them either, I think it might have a lot to do with my autism how I’m being treated, I’m in the process of a needs assessment to get support and advocacy so hopefully they can help me out :(,

I’m going to try calling the hospital directly to enquire about it and ask all my follow up questions and see where I get with them and if they can definitively tell me whether I’ve been referred thru the endo specialists or not ect.

Thankyou I hope you get the answers and help your looking for too ♥️

[TennisCourt in reply to Luna-rat]

Aww bless you hun. So hope you can get sorted soon❤️ 2 years is just too long to wait isn’t it xx

[Luna-rat in reply to TennisCourt]

Honestly!

[SofaGoblin]

Hi! The GP sounds a bit crap with communication, but it sounds like you're in the right pipeline for treatment, it's just extremely slow and a long waiting list. The GP wouldn't necessarily have mentioned that you're going through an endo centre because technically it's just the gynae department. The endo centre accreditation just means that the gynae department has the right specialists available, including endo nurses and consultants and surgeons. So it's not surprising that this wasn't specifically mentioned.

When you're on the waiting list for surgery, this whole process for me, then included an appointment with an endo nurse for a scan, and then an appointment with a consultant to discuss things in detail, then after that, it was agreed that surgery was the best option and a treatment plan was created, which also involved having a mirena coil fitted at the time of surgery. So I think you will get all this as part of your referral, but you mentioned a gynae appointment. Was this when you spoke to a consultant and agreed surgery? If so, then while you are under the care of that consultant, you will be able to discuss any and all questions you have. I would contact the consultants receptionist to ask about the best way to get these questions addressed. You may be able to do this over email.

If you're dealing with pain, and you don't have effective pain relief at present, then you should be able to get a referral to a pain clinic. You could always see a different GP to discuss this, or you could ask the consultant's receptionist how you might go about getting proper pain relief in the meantime.

In terms of other symptoms, again discuss these with the consultant if you can. Or see a different GP. It just sounds like you have a lot of questions that need to be answered.