Recommendations

[Lucylu88]

I am in Norfolk and having terrible time with hospital consultants. I am thinking of asking my GP to refer me to UCLH, has anyone been to that hospital? Or have recomendations for other hospitals? I am so desperate I would probably travel anywhere!

[sultana]

Hi,

One of my colleague had experience at uclh for gyane and she was impresse d.however if your able to go private I would strongly recommend you to see Mr trehan at spire elland hospital,huddersfield. I had endo advanced stage 4 and recently been treated by him.he has done radical excission and removed all the endo.you can check out his website,google Mr ashwini k trehan.

[Beks04]

I can recommend Mr Peter Barton Smith at The Royal Surrey County Hospital (NHS) in Guildford, Surrey. he is one of the few Laparoscopic Gynae Surgeons who uses the Da Vinci Robot.

[sonja121]

Hiya i go to the norfolk and norwich hospital i see dr. frazer,he has been very understanding and put me on meds which arnt too bad, i have to go back in july to see what is next xx

[Lucylu88]

Hi, thanks for answering. unfortunately I am not in the postition to go private (wish I was though, have heard good things about Mr Trehan). I am under Mr Warren at norfolk and norwich, but have never seen him, I just keep getting registrars that do not read my notes and won't except that I cannot tolerate most of the medication. I have been suffering for the last 2 and half years and have had no quality of life. I am just frustrated that things are not moving fast enough, I want my life back xxxx

[Amb43]

Hi, I am have an appointment tomorrow at Norfolk and Norwich Gynae, I am undiagnosed but convinced I have Endo from the Symptoms I have and the research I have done, and the fact that my mother had it. I have had Chronic lower back period pain every day now for three months and am on a cocktail of painkillers but still have strong to very strong pain.

I am dreading tomorrow, although I am glad I am going to N & N rather than JPH, but wondered what your experience there has been like, and any tips to get myself heard and taken seriously. I couldn't bare being sent home with just pills etc. I have prepared a pain diary for the last 12 weeks, hoping this will help.

Thanks for reading, Amb x

[Lucylu88]

My bad experiences were with certain doctors rather than the consultant. I have since seen mr warren and he was really good. I have only had one app with him, due another next week. I have had terrible time with all the medication an I am going to ask for a hysterectomy, to try and at least get back some kind of life! Hope u get on ok, if u want to know anything else, just let me know xx

[Amb43 in reply to Lucylu88]

Hi Lucy, how have things been since you last posted?

As I mentioned above, I had my first appointment on 13th December, it was a farce!!

I saw a lady Registrar, first thing she said when I told her I had lower back pain was "this is Gynaecology, you need Orthopaedics" ! I was gobsmacked. I stressed to her that my pain was the same pain I have always had with my period, dull, nagging, dragging, aching feeling. She dismissed me further by saying that I couldn't possibly have Gynae related pain if I wasn't menstruating!

I took a 2 month long pain diary with me listing all my pain meds, she hardly even looked! Her internal examination of me was a tad rushed and rough, got the feeling she had had enough for the day and wanted to be going home.

My appointment was at 3.50 pm, and, of course, didn't expect to go in on time, however, one lady arrived late, apologised and asked if she could still be seen. The nurse checked and said yes, no problem. Fair enough, but, wouldn't you think they would make her wait to the end? Oh no, she was next in. I finally got in about 5.00 pm after hearing one of the nurses saying, "Oh, we've got one more". It was evident they thought they had finished when the Registrar looked for the "bin" to put the used Speculum in from my internal, and the nurse said it had all been packed away!

Anyway, she told me to get an Orthopaedic appointment and gave me Mefanamic Acid and told me to come back in April! That was my biggest fear of the appointment, being sent away to suffer more (I had already suffered debilitating pain, every day for 3 months. I was devastated. April!!? I couldn't wait that long in that amount of pain! Because it was late, and the prescription she could give me was only for the internal Pharmacy and not one I could take anywhere, I would have to wait until my GP got my clinic report and then he would prescribe them.

Anyway, went home distraught, and within a few days I decided to write to Mr. Warren himself, explaining that I was rather confused by not only being told that I couldn't be experiencing Gynae pain if I wasn't menstruating, but also that Endo was not Hereditary. I had read this, even on an NHS website, and had been concerned as my mother has it, and, despite a Hysterectomy 20 years ago still suffers daily pain from adhesions, and just has to "put up with it," She is my angel and the one looking after me, bless her. Apparently you are 7 times more likely to suffer from Endo if you have a Mother or Sister who has it.

So, I wrote the letter, politely and non pushy requesting his own Professional opinion. I didn't really expect a reply, although that would have been very wrong of the hospital, and didn't hold my breath and began looking into the process of a second opinion. However, Mr. Warren did reply (actually he dictated a letter to me on the 31st Dec, but the letter wasn't typed up until 23rd January!!) and confirmed that yes, although Endo pain is mainly cyclical, it can be experienced at other times of the monthly cycle, and booked me in for a Laparoscopy! I had my pre-assessment yesterday and go in on Wednesday (gulp lol).

That was brilliant, and I feel I am finally on the road to discovery. But, in the meantime, it's a rather long story full of phone calls and complaints, due to staff shortages and long term sickness, it took SEVEN weeks for my clinic report to get to my doctor!! I realise we had Christmas in the way, but blimey, it's only a case of typing a letter and posting it, or in this day and age, fax or email!

His hands were tied until he got that report, so couldn't prescribe the Mefenamic Acid, or refer me to Orthopaedics (without the full details of the Registrars request). Long story short, I ended up on Morphine for my pain, I refused at first because I was already on a cocktail of pain killers and didn't want to take such a heavy drug which may well knock me out. I don't have a partner and my 20 year old Son lives with me at home. A very capable age and young man, but not to have to cope with my personal care. In the end, I had to agree, my pain was unbearable, I wasn't able to stand for more than 5 mins at a time, let alone have a bath or anything, or spend any of my time downstairs.

Needless to say, I have been more than unhappy and disappointed by my experience with the Registrar there, but feel listened to and not fobbed off by Mr. Warren, unless he thought, get this woman a Lap to shut her up and get her out of here! LOL. I don't really care though, I get my Lap on Wednesday

Sorry about the essay!!

So, how have you been? Did you continue with your care at N & N, or get a referral for somewhere else. I never have been a fan of the NHS, they let my Grandad down very badly, and you always hear horrific stories, so thought I would give N&N a go.

Though I must say, the nurses yesterday for my pre-assessment were lovely.

Are you any further along with your treatment and feel that you are know being genuinely cared about and listened to?

Would love to hear back from you. Wishing your pain away for you, Amb xxx

[Jem75 in reply to Amb43]

Hi ,

what an awful experience. You deserve so much better.

Why don't you look at the BSGE - for registered endo centres and ask your GP, through the book and choose system, to refer you to a centre? I have had a bad experience at Colchester, but others haven't ........I was recently seen at UCHL and they seem better. ..........or go private!

Good luck x x