Endometriosis UK
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Considering private treatment

Im just wondering if anyone on here opted to go privately for their treatment and could recommend anyone? Ive reached the stage where I feel nobody is really listening to me within the nhs and hopefully I can deal with my endo privately.

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Hi, I know how you feel, I was fed up with nhs doctors, I felt like they weren't listening to me or taking me seriously. I had an op in June with nhs to remove Endo inside my bladder, I told them I can feel it on the outside of my bladder too. They burned off the Endo inside my bladder but didn't bothered checking to see if I was right about the Endo sitting on top of my bladder. I was still in a lot of pain, the doctors discharged me saying there is nothing more they can do.

I was so fed up and depressed, my hubby was fed up to and decided I should go privately, it was the best decision we made in 5 years. I saw a private doctor who did an internal scan and told me he can't find my left overay, and that my bladder is pulling to one side, he showed me the scan and I was so shocked. He sent me to have an MRI and ct scan the doctor there told me straight away there is a big Endo sitting on top of my bladder, I cried so much and I knew I wasn't going crazy and that someone believed me.

I had my operation 3weeks ago, I'm still recovering. They did keyhole surgery and found that my bowels were stuck to everything and the Endo on my bladder was the worst, it was very deep and long, I had so many adhesions stuck to everything. My left ovary is now. Smaller than the right one as it was covered in Endo. I'm feeling much better, the pain I have now is the operation pain where the stitches were.

My GP recommended this private doctor, he was so caring and he listened to me.

I am now making plans to make a formal complaint with nhs doctors.

Hope you feel better soon.

If you need to chat, or scream and shout, or ask anything you can, I'm here if you need anything.

Ravi.

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Thank you so much! Yeah I suffer from constant urine infections and bowel upsets and have a funny feeling that the endo is there too. I will definitely look into that doctor for treatment.

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Sorry forgot to ask where labouts did you see this doctor, through which private company?

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Sorry I forgot to say the company is called BMI.

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Going privately was the best thing I've ever done. I, like you, felt like no one was listening - it was either in my head or gastro related. I went privately on the 24th October; in the half hour chat I had with my consultant (he was brilliant) he believed me. Last Monday (01/12) I had my second laparoscopy. He found moderate endo, removed all that he could, and now I'm on the road to recovery. Yes, it was expensive - but it's the best money I've ever spent. They did what the nhs failed to do, which is make me know I'm not wasting time and making things up!

Keep smiling lovely! You need someone you can trust. Hope you're not in too much pain. Bee x

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I'm really sorry you feel that way! That really sucks! I just wanted to tell you my experience, I had my lap at a private hospital but under the nhs and I wasn't yreated that great! The wait time wasn't very long but my aftercare treatment was awful! They didn't tell me where they found the endo, what, how much and where they removed it from, the grade, if it would come back and had even lost my file when I went for my post op! I would say look for a specialist, doesn't necesaarily have to be private. Good luck and hope you get it sorted soon x

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HI Haley, I was lucky to have private treatment through my work.

I feel incredibly lucky as I read people on here that are happy to have their lapo booked in for 4-6 months time. I had my 1st appointment with the Gynae/Obstetrician on the 1st July for scan and consultation, and he then did my lapo on 19th August - just 6 weeks later.

Even if it wasn't covered by my work insurance scheme, I would do everything I could to pay for private treatment again. Good luck xx

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Yes I did - what part of the country do u live? X

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I'm In Glasgow xx

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I decided to bypass the NHS and go privately.. My first consultation until my radical excision surgery, took only four months. I had a diagnostic lap in September to diagnose my endo and then surgery the following month.

My stage four endo was dealt with in a seven hour operation which was complex according to my surgeon. Going private was the best decision I made as there was no waiting around and it allowed to be treated by ( in my honest opinion) the best endo specialist in the country who had the experience and ability to deal with advanced endo.

Please PM me if you would like his details. He works in Yorkshire, and has pioneered several techniques in endometriosis surgery.

All the best x

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My daughter is not getting any where with NHS can you tell me where you went she's so down and in pain we'll do anything to give her a happy life x

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Hi,

Sorry to hear about your daughter suffering in pain with endo. I'm still suffering with endo and other illnesses.

Where do you live?

Sweety.

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Hi,

I sent you a DM

Sweety

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Hi can you message me details please annerawlings1@gmail.com. I would consider this for my daughter as she is suffering with this condition and getting nowhere with NHS, also can you give me a ball park figure for costs please just so I have an idea. Many thanks and I hope you are still feeling well.

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Hi sorry to hear you don't feel listened too, I know exactly how you feel. I had nine years of symptoms and being ignored/ borderline ridiculed by about six different GPs and consultants. I finally decided to go for a private consultation and for the first time was actually listened to and treated like a human who knew there was something not right with her own body. The surgeon immediately suggested I consider a laparoscopy- I phoned back the next day and was offered surgery for two weeks' time. on the day I still had to wait a long time to be taken through to theatre, which was stressful, but other than that would 100% recommend going privately. My surgeon removed all of the endo and adhesions and I have gone from having no life, constant pain/ nausea/ fatigue to no pain whatsoever (don't even need paracetamol for periods any more!), so much energy, no symptoms whatsoever. It took about two weeks to recover from the operation, no complications. would strongly recommend that for the emotional support, the thoroughness of the surgeon and the treatment times that you opt for private. I am in the Oxfordshire area and can send you details of the surgeon if you are fairly nearby and considering this. I can't recommend her enough. Good luck with whatever you decide and I hope you get sorted soon.

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Hello, I just came across your post. Looking for a private experienced gynae to do surgery for my stage 4 endo. Can you email me details please

Katiehales79@gmail.com

I hope you are continuing to be well

Thanks

Katie Hales

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please can you share the details of the surgeon.

Email: selinashamim@hotmail.co.uk

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Just seen you are in Glasgow, I used Nuffield health and I see they are in Glasgow too. Good luck.

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Yes I've waited over 8 years in pain with just two ultrasounds being offered to me on NHS and buscapan as pain relief. One doc just said get pregnant or go on pill and I will be fine

So husband told me we were going private and seen a consultant who said need a lap done and then take it all from there. She even offered me pain relief.

She offered me surgery the next day but it didn't suit me so that was two weeks ago and I'm going in on 2nd jan best decision I could have done

Bare in mind financially it is a lot but for £1500 I'm happy to have the peace of mind if they go In and see what's wrong and then can hopefully be pain free and pregnant

Good luck with your journey

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I feel exactly the same as you. My first experience was good, it took 2 years to get a referral to gyne and I was operated on the next week. That was back in 2011 since 2012 I have been experiencing the same issues and not getting anywhere with gyne. I'm in Perth so not too far from you.

I'm going to follow you, would love to hear how you are getting on.

Take care x

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Hi I'm afraid I had a very negative experience of seeing someone privately for a consultation due to acute pain who after an ultrasound declared I needed an urgent hysterectomy and bowel resection and was suggesting I booked in for this straight away. When I explained I didn't have health insurance and couldn't afford the £20k he quoted he became immediately dismissive. When afterwards I complained that his very brief and useless letter to my GP didn't say anything about the surgery I needed he refused to change it unless I paid £1100 for a private MRI and another subsequent consultation £350 with him. I subsequently had to wait months to see an endo specialist on the NHS but when I did he was fantastic and after several months of injectable drugs to dry up the endo prior to surgery I underwent radical excision via a lap which so far (10 months ago) has been 100% successful in reducing the pain. I am very thankful I didn't have the drastic surgery suggested by the private surgeon!!!

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Thanks for sharing with me it's good to hear both sides of going privately. If I do decide to go private I'll make sure I am wary of what Im being told if they say I need such drastic treatment.

Haley

Xx

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Wow! What a scum bag! You didn't have to have the hysterectomy then? That's really awful that he would be prepared to take that from you for a quick buck. Glad you're later experience was better.

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