Northern Ireland help

[Lyns88]

I'm totally at my wit's end. I live in Northern Ireland. I have endometriosis, waiting to go for laparoscopy. Have been on waiting list from September 2018- (10months now)

Painful periods, extremely heavy bleeding I am taking so much co-codamol that I am so tired and spend half of the day out of it.

I rung today to find out roughly how much longer I have to wait to be told I have at least another year to year and a half, as routine patients aren't getting seen at all. Even urgent patients list are moving at a slow pace due to the volume of cancer patients waiting to go for surgery (which I totally understand is important)

I'm lost, I feel like nothing matters, i'm in pain and I'm struggling and I'm ANGRY. So so much do we not matter in Northern Ireland?

I rung my doctor's to be told you would be best to go private? Please please in Northern Ireland advise me what to do. I don't have private medical. But if need to be I will pay. I have had MRI scan and all already done. I just can't wait this long.

[Jbp2]

If I had a time machine I wish I would have known about a page called Nancy’s nook on Facebook and gone to a surgeon who performs excision only surgery. Any surgeon that uses ablation/laser/diathermy during the surgery is not educated enough and 80% chance of recurring again in less than 2 years. There is a list of surgeons on the nook page who come recommended. I’m in the republic and no surgeons on island of Ireland do excision only at the moment (confirmed also by endo assoc of Ireland). Do your research and don’t end up like me at 29 with failed surgery and having to start process all over again 2yrs later. 2 or 3 recommended surgeons in UK including peter Barton smith. Also some in mainland Europe but almost all are private but in my opinion is worth it. I’ll be saving up to travel. I know stories of women having up to 8 laps and still issues from inexperienced gynaecologists. Think about it, if a gynaecologist is delivering babies half his or her time they haven’t built up the experience to do successful surgery. I know it’s hard being in pain but excision is really the gold standard and if endo is on your bowels/bladder you want a surgeon who has the experience to excise it safely. Hope this helps, I wish women didn’t have to do all the research but that’s the way it is at the moment.

[Smiley321 in reply to Jbp2]

Nancy's Nook and Tamer Seckins book have changed my life, unfortunately only became aware of both after my 2nd ablation ☹, but excision is clearly the way forward unfortunately for our bank balances

[Lyns88 in reply to Smiley321]

Thank you I will check Nancy's Nook and Tamer Seckins book out 😊 x

[Smiley321]

Hi,

I'm from NI and been in this boat twice before. You are best to go private and see a gynaecologist and then ask if they can put you on their NHS list for a laparoscopy, the wait then is usually 3-6 months dependent on what Trust you use. Both times (last 2 years ago) I've had the lap within 3 months by also advising I'll even take a cancellation it will speed things up. I've heard South Eastern and Belfast Trusts have very long lists at present, Northern Trust was better for me, but you need to make sure the gynaecologist you see is actually doing NHS treatment in that particular trust first. Dependent on whom you see the consultation will be about £200-250, some will ask for you to have an internal scan at same time, which adds a bit to the bill. Just remember the consultants here only do ablation that I'm aware of. For my next surgery I'm heading to England and will be paying for the whole lot as I plan to get excision done. Hope this helps x

[Lyns88 in reply to Smiley321]

Hey thanks for the reply. Can I ask you a wee question? You said about going private for consultation....Then Going on their NHS list for lap .... I don't understand this?

I'm honestly at rock bottom, getting married this year coming so funds are pretty right low at the mo 🙉

[Smiley321 in reply to Lyns88]

Hi, you can pay private to see a gynaecologist then ask to be placed on their NHS list if they want to do a laparoscopy. Just check they do NHS work in advance. So effectively you are paying to jump the queue on the NHS to see the consultant first off, but unless you have a few thousand to pay for the laparoscopy as well, then you will need the NHS to do the surgery. I paid about £360 at 352 a couple of years ago which included a consultation and an internal scan but asked at the appointment to be placed on the gynaecologist's NHS list for surgery which they said was ok and they would advise their secretary. By paying for the initial consult I saved 9 months waiting to see someone on the NHS for the initial consult so going private for part of it can help reduce your overall wait. Although you will still have to wait on the NHS list for the laparoscopy itself.

[Smileyblonde]

Hi. I’m from Northern Ireland and totally understand 3 yrs I waited. I also work for nhs so no favours there either. I literally stalked my consultant. Got expedited on list by gp request as I was on morphine at one point. Got re-referred back to see my consultant. Agreed to zoladex injections which helped massively. Stalked my consultants secretary regularly and waiting list office also. Finally got surgery and decided on total hysterectomy as I didn’t want hassle of trying to get seen again. Best thing ever been pain free since March. Found myself again also and am so happy. Hope u get sorted soon dxx

[Lyns88 in reply to Smileyblonde]

I had to laugh when you said stalked the sec 🤣😂🤣😂 cus I totally know what you mean.

I'm 31 years old, with no kids (been with partner 16years) so a hysterectomy isn't the road I really want to go down just yet. But I'm so massively drained from this, it's turned me onto a horrible mess. No joke I feel like it's stripped me of my identity, so am so glad to here ther is light at the end 😍 you deffo sound like you have done the right thing for you 😊 X

[eamc]

I was in the same position and have ended up paying privately in Belfast! I have my first lap next week, however I wouldn’t say the experience of going private has been any better - I feel very much unprepared and uneducated about what to expect. Northern Ireland seems to be so backward in regards to healthcare unfortunately, particularly endo 😔

[Lyns88 in reply to eamc]

It's so frustrating isn't it 😟 my gp is that totally useless with regards to what I'm going through. Zero help.... just keeps giving me co-codamol. I'm in the same boat I feel silly when it comes to endo, cus I really don't honestly know much about it😟.

Can I ask you who you went private with? And how fast the turn around has been?