Worried paying private for lap won’t show anything

[sunny2408]

Hi all

I have decided to pay privately for a lap as the current NHS waiting list where I am is 3 years (Northern Trust, Northern Ireland). I’m worried about paying all this money for them to find nothing from the lap and being back at square one.

I have seen two gynaecologists in the hospital with no mention of endo and who both were very dismissive. Following this, I was recommended by my GP to see a certain gynaecologist privately. He suspected endo right from my first consultation with him and he advised about going for a lap either privately or being added to his NHS waiting list.

I was on the pill for 10 years until 2020 and the gynaecologist advised as I was on the pill all those years, it had most likely masked the symptoms of endo and things are only coming to light now. All investigations so far have been clear, abdo ultrasounds, CT scans, transvaginal scan and blood tests. I have severe right sided abdo and back pain and irregular periods. The pain can be so severe I am often bed bound and getting little relief now from Tramadol.

Looking some advice on whether I should go ahead with the lap privately with a hope it is worth it? Some of my family are not supportive about spending money on it which is putting doubts in my head.

Thanks in advance for any advice xx

[EndoSuckss]

Hi! I'm really sorry you're suffering!

I think only you can decide if paying to go private is 'worth it' - I'm currently waiting for my 2nd lap (on Wednesday!) which is being done privately. Personally, for me, I couldn't wait the 4 months or so just got a consultation that my gp said it might take to see someone, plus the waiting list for actual surgery was over 12 months from the time of referal and growing steadily!

I made the decision to go private, saw an endo specialist within the fortnight, had tests, and was scheduled for a lap - it's been less than 2 months since I decided so it's moved quickly and I don't regret it at all! But I appreciate that everyone has different views!

Good luck whatever route you choose xx

[sunny2408 in reply to EndoSuckss]

Thanks so much for sharing and so pleased you managed to get seen to that quickly. I hope everything goes well for you on Wednesday xx

[Jo789]

Hi, I just had an nhs laparoscopy. All scans had been clear. Luckily I was referred to a good gynaecologist but until then endemetriosis was only mentioned briefly once. I was worried it would be for nothing but they found endo in several areas including bladder and 4 cysts. And I was given mirena coil. Good luck.

[sunny2408 in reply to Jo789]

Thanks so much for sharing. Hope you are recovering well

[MirelaMiky]

Hi Sunny, may i ask if you don't mind how much does it cost for a private lap, been thinking to go private as well.

[sunny2408 in reply to MirelaMiky]

Hi, of course not. A private hospital in Belfast are charging £5,800. That doesn’t include my initial consultation or any further consultations either. It is a fixed price though for the surgery and everything related to it including any problems that may occur following the procedure. They also offer a payment plan x

[Dogmad6]

The only way you would know for sure you've got endometriosis is to have a laparoscopy. Your family members aren't the ones that are suffering. Personally I think it sounds as if the consultant is pretty sure from your symptoms that you have probably got endometriosis and your GP clearly trusts them. If you really don't want to pay, you could always go on the NHS waiting list and ask to be treated for now based on your endometriosis symptoms if they are willing to do that. Difficult decision for you so good luck! xx

[sunny2408 in reply to Dogmad6]

Thank you for replying and sharing your thoughts, it’s much appreciated. You’re completely right about family, they’ve no idea how it feels every day living like this xx

[Daisyjuke in reply to sunny2408]

I think it goes back to it being an invisible illness, for some reason people don't believe you until they hear a doctor has seen it for their own eyes!

Unfortunatley it can make you not believe it as well when everyone gets fed up of listening to you.

I lost a lot of friends by not being able to go out. Couldn't drink alcohol much more and people seem to forget about you! But new friends come from it as well!

[Daisyjuke]

Hey! I just my first lap yesterday which I had to push for and go private. My first consultant diagnosed me with endo without any evidence and never felt satisfied not fully knowing. I had pains for 3 years and decided the contraceptive pill management was not working anymore. Although all ultrasounds internal eg showed nothing I was told endometriosis isn't high on their list. The surgery yesterday showed a small bit of endo right on the main side I complain of more pain and so happy I went ahead.

I am lucky in having insurance. But all the same do your family understand the pain you're in as a lot do not with this invisible illness.

I think it's easy to start doubting yourself and wondering if tbe pain is real.

And if nothing comes from it at least you move on to the next diagnosis and to keep looking. It rules it out if not anything!

Wishing you luck x

[sunny2408 in reply to Daisyjuke]

Thanks so much for your reply. I had my lap on Friday which went really well and I’m so glad I decided to go private. They found endo in 2 places and removed it. I was so relieved after surgery when I heard they found something. I hope you are recovering well ☺️ x

[Daisyjuke in reply to sunny2408]

That's the best news. Isn't it funny how amazing it is to hear they found something? People are saying they feel sorry for me but I feel better already. I felt so weak and dizzy with the endo and my head is clear already.

Mine was also Friday. I went to Nottingham bmi the park and they were excellent. All hospitals are understaffed at the moment and it's causing the nurses to run ragged.

Did they tell you what stage of endo you have then?

Thank you lovely. You too, I am good in the mornings but at night my partner is helping me get up eg.

[sunny2408 in reply to Daisyjuke]

Hope you are feeling much better by now ☺️My mood and pain was awful for most of the week but feeling so much better now! I think I had a bad case of post op blues, something I didn’t expect.

My consultant didn’t mention which stage I had, although I was still groggy from surgery when I spoke to him. It was found around my rectum and uterosacral ligaments. How about you? Were you surprised where it was found?

Just from your message below aswell, my symptoms started as right sided pelvic pain which moved around to my back at times. Also my periods were really irregular too and heavy when they did arrive. I didn’t expect endo at all until my GP suggested to see my consultant. I think because I had seen 3 gynaecologists in a&e at different times in the past few months and had numerous scans included internal ultrasounds and was dismissed as ‘generalised female abdominal pain’ or a ‘viral infection.’ Any gynae issue wasn’t on my radar because of that because I trusted their opinion at the time. Once I was told by consultant about endo and I did some research, I realised this is the case for so many women!! It does frustrate me thinking back to how many drs and surgeons I have seen in the past few months and endo wasn’t mentioned once. 😔

[Daisyjuke in reply to sunny2408]

Ah glad to hear they found something and all better now!

My aftercare was very short and sweet, all I got told is they removed some endometrial tissue she asked where was it I was getting most the pain and I said lower left said (abdomen) and she said that's where it was, so wasn't surprised where it was as I had direct pain from area, I do get a bad back and thought I may have some near bowels but no!

Tbf if it had only been a few months it's amazing how quick you got seen to, I gynae diagnosed me with Endo about 3 years ago but with no proof so it was always feeling unsure. Before my op my consultant said last on their list is endo and turned out I was right. It's just so hard to diagnose and I hear different things about it from different people.

Glad you are feeling better! Yeah it's been just over a week for me and feeling better but back to work on Tuesday and still can't bend down or twist, and being a beauty therapist worrying about doing pedicures and massages! Fingers crossed x

[Daisyjuke]

Sorry for overtaking also, I haven't had many people to chat to about it. What can of symptoms did you have to start thinking endometriosis or how was you feeling? It seems like everyone gets the most unusual symptoms

[Lilac01]

Sorry to hear that and that the wait list is so long. I went private after waiting for 16 years and being turned away by GP's. In the end I went to a specialiast in endo, got her opinion before going ahead with the lap (she said it was highly likely that I had endo) and went for it. Turned out I had very agressive endo, as well as polyps in my womb which she removed also. I would never have known this had I not undergone the lap- but like you, my main worry an concern before having the treatment was not about the op itself, but it was about if they find nothing, then I would feel this enormous guilt because my dad basically paid for me to have the op. The mental turmoil leading up to it was insane, so I totally understand how you feel there. I would just say, that for me, I am so glad I did it- and immediately felt a huge sense of relief after she came in and told me what she found.Good luck and I hope you get the care you deserve. x