Private care?

[mousemeb]

Hi everyone,

I'm in a desperate situation which I am sure a lot of you can relate to. Quickly, my story:

At 24 years old, I have had severe period pains since I started menstruating 12 years ago. Cramps in lower tummy, back, and most painfully, all down my legs, front and back.

The leg pains have spread over time - they were only in my thighs at first.

I've also got lots of other physical and mental symptoms suggesting end (and my mum has it).

I cannot take naproxen - recently developed an allergy to NSAIDs.

Cannot take cocodamol - incompatible with antidepressant I am taking.

Had consultation with a very dismissive and rude gyno (after waiting 3 years for the apt). She told me it was all in my head. Couldn't do physical exam because I was on my period. Months later, I had an ultrasound showing no fibroid cysts, but I think the ultrasound isn't definitive for end (you'll all know more than I do).

So, my current situation:

- Over 6 months ago, I asked for a laparoscopy. Waiting list is currently 80 weeks down the line.

- I've booked in for a Mirena coil fitting.

My question is this:

- Have any of you had experience with getting diagnosis and treatment privately? I simply cannot handle this pain every month. Do you have any recommendations, or is it worth it?

- Is it true that the mental/ emotional effects of the Mirena coil are less intense than contraceptive pill?

Thank you very much for the time you have spent reading this. I realise it's a long post and rather vague questions.

[Comedykid]

I went private after having no luck and being told it was bowel related not endo.

I did my research and booked an appointment with a private gynaecologist that specialised in endo. Had the appointment in November where he discussed all my symptoms etc. he then asked his team to review my mri (I went for.a second opinion) in February I had a follow up appointment and they said yes endo and booked some in fr a lap and that is next month. For me it was worth going private. Depending where you are in the country I would recommend looking up the endo specialist in your area or surrounding and do some research.

I had the mirena coil fitted with the NHS gynaecologist and after my mri results I had it removed as for me personally it affected me very badly mentally and I wa able ending for 3 weeks at a time and getting no relief. I personally did not have a good experience with the coil but everyone is different

[white61]

I am on the pill and the coil to try and stop me having ovarian cysts but it hasn’t made a difference to do with stopping me getting them. If I was you I would ask for a second opinion and try and see someone else. I saw 2 consultants who were male and didn’t listen to me at all. Now finally I have been listened to by a female gynacologist. They are now saying so many women go into surgery and there is no sign of endo but they still experience symptoms so now they are saying women who have those symptoms probs have endo but this is quite a new thing and most of the time the best way as such is through surgery but my surgery showed no endo but I still have all the symptoms. I am now listed for surgery to remove a cyst and scar tissue and look out for endo. She thinks it’s an endometrioma cyst as it hasn’t gone by itself and the scan reported that it looked sticky as it hardly moved so there might be scar tissue or adhesion’s who knows we will see but I was dismissed for years just like you, it’s Only now after seeing the third consultant I’m finally listened to. Sorry I’ve waffled on but if you want to message me you can xx

[Sez73]

I really feel for you, desperate is a very common word you see here & I totally understand why you feel that way. For you to have what I’d say are clear endo symptoms along with a family history yet still receive such a dismissive response from the doctor, & after waiting 3 years, is absolutely appalling. Then to be told the old classic ‘it’s all in your head’ comment - time and time again I cannot believe this still goes on and I’m so sorry to hear about that reaction, no wonder we all suffer such huge mental effects from this when our pain is not even believed. I’ve been there and got the t shirt!

Ultrasound can sometimes be helpful if you’ve got someone who knows what they’re looking at (doubtful if just a standard NhS one in my opinion). I had one girl as part of a fertility clinic who was doing a specialist extra course in endo and adenomyosis and she was really experienced and pointed out loads of things, unbeknown to me. You can also get ones which aren’t so great. Also never take any ‘normal’ result as being normal. I had what were classed as ‘normal’ ultrasound/blood tests etc at the very start yet but when I got a lap was then told it was one of the worst cases of stage IV endo, so you just never know.

I feel you’re absolutely right to request a lap for further investigation, well done for that. Just my personal opinion but I would maybe just hold fire on jumping straight into the coil fitting route if I were in your position. Hopefully, you get some more feedback on here re that to maybe help make an informed decision. Like anything they’ll be good and bad stories. I decided not to do that as explained below, so can’t comment on it.

In answer to your questions, & I speak from from my experience alone:

1. Yes I’d absolutely go private, if you can manage to financially do so. After at least 12yrs of being dismissed at the GP myself, from my mid 20’s re back/leg pain and severe chronic fatigue issues, I eventually was diagnosed privately at 39 and not even in the UK! I’ve had 4 laps, one just a ‘look only’ thru the NHS (after initially paying to see that particular consultant on a private basis then requesting to move to his NHS list which is sometimes a possible route to check out) the NHS pathway was sadly least successful, badly organised and quite frankly useless. They didn’t even have my notes seconds before going into the operating theatre, utter sham old. All 3 private laps were a significantly different and more thorough experience, all giving me some respite (unfortunately endo can come back post operatively).

2. I chose not to have the Mirena. I’d had very bad side effects from the pill, any progesterone supplementation in IVF had caused great problems - severe mood swings/heart palps/fatigue & joint pain and I also had a very severe reaction to Prostap & HRT add back with Oestrogel (hrt oestrugen) and Utrogestan (hrt orogesterone) to the point that I suffered extreme mental related incredibly severe side effects, which were terrifying . My private consultant agreed that Mirena was not an option.

I do respect others have great success with it though, so I am not saying it’s wrong by any stretch, but everyone is different which is very clear from everyone’s experiences reading this forum. One treatment will work fantastically for one and feel totally toxic to another, that is what is so challenging. (I notice from Comedykid’s reply to you that her experience using Mirena wasn’t great either.) I think you have to review your own personal situation taking into account no one size treatment fits all. And I think discussions like this are (personally) more successful with a private consultant who is not operating within, what often seems, very tight restrictions of certain NHS treatment pathways and care.

I got to speak to someone who respected the dire circumstances I was in, who took time to listen properly, who showed genuine care, compassion and respect, and who, most importantly, talked WITH me and not AT me as to what was the best route forward. I found those reasons alone made going private the right choice.

It’s a sad state of affairs we have to carry extra the financial burden to do so but I believe it’s been worth it. I’m now 50 and still continue to try and get on top of adenomyosis and endometriosis. There is no miracle cure but what I have found which has helped enormously is being spoken to as an individual and my view respected, and that did not happen once with the NHS.

By booking a private appointment (usually costs around £200 or so depending on consultant) you can have a good opportunity to go in with all your questions and be listened to. Make the most of that appointment as much as you can, write a brief history of your own situation/timeline/symptoms and prepare all your questions to take in. I always found that helpful having everything written in a short summary. They may in the first instance suggest an MRI depending on what you say which could prove very useful before a lap. My private consultant worked alongside an extremely skilled radiologist.

In summary, before jumping into another treatment, which may well cause you problems, why not research the endo consultants in your area and book a private appointment (I have done this direct myself a lot with no GP referral in the past but it may have changed these days?) to discuss your situation before making any new decisions moving forward. I read enough about Mirena to know it has very mixed reviews!!

I wish you all the very best, I know how hard this all is x

[mango98]

Hi there, I'm not able to answer your post re surgery/going private etc as I'm in the same boat. I'm 25 and waiting for an appointment at an endo specialist centre which won't be until August - even then it's a telephone app with an endo specialist nurse so likely much more waiting after that to get anywhere further. So also considering going private.

However, I can talk about my experience with the Mirena coil - I had it put in about 3.5 years ago and wanted to say that for me it's been massively positive. It has reduced my pain and the heaviness of my periods a lot. Having it put in was pretty grim and the first year I wasn't sure about it, due to irregular bleeding/a lot of clotting etc. But it changed my life after that, as I could go out and do things (!) even on the first day of my period whereas before I was generally in so much pain that I'd have to be in bed. It's definitely different for different people in terms of the side effects but for me the mirena has been much better than going on the pill/taking back to back doses of it as had been recommended by docs before (which caused me awful nausea/other symptoms).

I still get other endo symptoms which is why I'm trying to get it properly diagnosed after such a long time of waiting, but my personal experience of the mirena has been a good one.

Best of luck with it all x

[veeq]

Hi, I have had an ultrasound on the nhs in January which has shown an endometrioma on my right ovary. I’ve been referred to an nhs gynaecologist with an appointment for March 2025 (over a year wait). I was lucky enough to have an option to join private medical insurance which covers pre existing conditions through my work. It was a 2 weeks wait to see a gynaecologist and another 2 weeks for a laparoscopy. The overall experience going private was great and quick but I can be very costly without the insurance.