This is my first time writing, as like many posts i've read, I feel like I have hit a wall.
I am currently working overseas in the middle east, and was eventually diagnosed with stage 2/3 Endo back in April this year. I'm not entirely sure where it all is, but i believe it's fused with my bowels. The doctors here aren't very forthcoming with explanations.
They prescribed me with visane - a dienogest, but it made me very ill so I stopped. Also, as we have decided we really would like to try for another baby, it was pointless taking it. (All in all its been almost 2 years of trying now, but this year has been consumed with the Endo diagnosis)
They have refused to do anything further as it's my choice to not take the tablets and that's all that is on offer for me. So every month is back to pain and their answer is - take paracetamol.
Basically I will be home at the end of November and I want to try and get some further advice and move forward with alternative treatment that may still allow me to get pregnant, rather than just rule it out . I am going to see my gp, but feel the NHS is going to be a long wait and I am considering going private. (I am 37 so time is not in my favour - of course, there may be othere reasons that I am not conceiving but I will have to deal with that at another point.)
I am based near Grimsby, so was hoping someone could recommend a private clinic? And how I go about getting referred to a specialist? Even on the NHS if needs be? I have heard about castle hill in Hull, but not sure if it's private or NHS.
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Bmc81
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Not sure if Birmingham is any good for you, but I went private last year, I saw Chris Mann in Birmingham at the Spire. I had stage 4 Endo and my bowels were also fused with my uterus amongst other things. He removes the Endo surgically (excision) rather than lasering I did my research first and he had a lot of experience. He does work at other hospitals, but I think they are all in the Midlands area, The Priory etc. Hope this is a help for you.
Thank you, that’s a great help. It’ hard to know where to start, as I just search online and get all sorts of stuff but have no way of knowing if they are any good or reliable.
It's a mind field out there on the internet and easy to get bogged down with too much info! The way I viewed it is, if I'm going to have someone cutting Endo from my insides, I want to know that they know what they are doing. Especially if its fused with organs !! I wish you all the luck. Let me know if you need any more help. x
Exactly the correct approach to have. I had a general gynae have a go at mine and will never know if id have had Chris do it if I'd have been able to save one of my ovaries.
If i need surgery for endo again there's only two people id trust to do it with Chris Mann being one of them
I am seeing Chris Mann in BMI Birmingham next week. Did my research like you. He has excellent reviews. As I’ve had total hysterectomy over 20years I feel apprehensive but you have to listen to your body.
Hi, I saw Chris Mann yesterday in bmi edgbaston. He is lovely so approachable. Think mri next week then lap to see what’s really going on. Can I ask did you have excision? Hope you don’t mind me asking. As I have had total hysterectomy years ago I thought the endo trail was all over but sadly not. How long did I take for you to recover? Did you go private? Hope you don’t mind me asking. Kind regards
Hi Gwen, that’s good that you’ve come away feeling happy with your choice of specialist, and at least you have got the ball rolling. It sounds like you haven’t got too long to wait with just a week for the mri and then laparoscopy. Hopefully you can get it over with ASAP. Can I ask did you see him private? To answer your questions about myself, I went private at the Spire, and Chris Mann did excision ( I may be wrong but I was of the understanding that he only does surgical excision of the endo as he believes that’s the best. I had it either side of my abdomens front and back uterus and of the bowels which were fused with the uterus. So he sorted that out. He did tell me after surgery that he suspects I also may have adenomyosis. I have never had an MRI to confirm this as yet. As my endo has come back in the last month or so ( I had surgery last November and was symptom free for about 6 months after surgery) As it has come back so soon I have made the choice this time to go on the nhs but I have just asked the doctor for a referral to the endo clinic, hopefully I will see Chris again, but I am not looking forward to the waiting time on nhs...which was why I was wondering with you only having a week to wait for a mri is that nhs or private? Can I also ask you if you don’t mind. Did u have a hysterectomy a while ago due to endo problems? As my understanding is that a hysterectomy will cure the adenomyosis but not the endo. X
Forgot to say. My recovery was a few weeks. I could only walk slow a little bit and my partner had to help me for the first week or so. But after 2 weeks I was slowly walking around. I couldn’t drive for about 5 weeks or so due to the extent of the stage 4 endo that was removed. Hope that helps x
Hi, thank you for your reply. I had stage 4 endo and had a total hysterectomy 24years ago. I have lived in pain all this time. Drs here have been very slow. Not one of them has said that it could be endo causing all my problems. I have chronic low back pain with it going down both legs and under my feet. From what I have read and researched I believe it to be endo. It is surgeon dependant and after all this time I now feel pretty sure that’s what it is. I never knew about BSGE centres. Back then the attitude was hysterectomy would be the answer and the problem would be sorted. As soon as I knew that wasn’t the case I made the decision to go privateto one if the endo centres. We live in west wales so knew we would have to travel. I will stay private now as just can’t face the process of elimination. At least the hysterectomy thingy is out of the way. The pain is really bad now so for my own sanity have to go private. Dreading the cost but you simply can’t live like this. The worry is if all the endo isn’t removed it comes back so quick as you said. Never thought I would be back where it all started. I remember after hysterectomy having the 6month check up that I had terrible back pain and even told the consultant but they said all was fine after the op. And it hasn’t been right since so that’s how fast it does come back. It is a never ending road. Hope you won’t have to wait too long for the nhs and hope you get to see Chris Mann again. It is such a debilitating condition to live with. Thanks again for your reply. It is good to talk to someone who has had excision. Take care. Xx
Hi Gwen. Thanks for answering that. I thought those waiting times sounded too good to be true for nhs!! You poor thing suffering all those years so badly. I know I have had endo for over 20 years also without diagnosis, but I wasn’t in anywhere near the pain I am now in over the last few years. ( it was mainly painful periods, problems with constipation and infertility back then) which the doctors didn’t have a clue about anything....and still don’t if I’m being honest. But I also like you suffer with chronic back pain. Sometimes my legs ache really bad but that comes and goes At the moment I am aching all over like flu but that is the immune system being affected. Chris did say that it was a 20% chance that the endo could come back. But if I have adenomyosis then that can still give u all the symptoms as well. That is why I want an mri scan as it detects adenomyosis. If I do have that then I like you will get a hysterectomy. (I have accepted that I won’t have kids now). I have an appt 22nd November for a consultation so not too long to wait.
It’s such a long, hard journey isn’t it. I don’t have any children either. Did try 2 rounds of ivf but failed so had hysterectomy pretty quick after that. Back then they knew very little about endo and the answer was to have it all out. They still don’t seem to know much, well my drs are useless!! Don’t know much about adenomyisis. Must google it. Hopefully you will see Chris when you have your appointment. Such a nice man and so down to earth. Not a stuffed shirt that a lot of them are. Best of luck xx
Hi, i live in herts and mainly use the London hospitals, or privately ive been to Harley St where ive seen a fantastic gynae who i now see on nhs. Is london too far for you? You welcome to come and stay with me night before x
Hi, not at all. I originally saw Mr Richard Smith at Harley St 7 years ago..The cost was £250 i believe. I also had scan done which was another £200. I had been diagnosed years ago with endo but i started bleeding and had a cyst which i was worried about due to my mother having ovarian cancer..however all was ok but Mr Smith asked me to get gp to refer me to him on nhs and i had op to remove ovaries at the queen charlotte hospital in london. Mr Smith is a lovely man, sympathetic and is also a cancer specialist. See him at Harley St first and then transfer onto nhs with him. Good luck and if u need more info let me know. Mr Richard James Smith a Scottish guy x
Oh ha ha, yes a Pisces. Happy birthday to you too. Btw Mr Smith also deals with endo and fertility. He will become the first gynae in this country to do a womb translate. If you cant afford the consult fee, just ask gp to refer you to him on nhs at queen charlotte. Contact me anytime x
Ps, i highly recommend Homeopathy too. People pooh pooh it, but its fantastic if u get the right homeopathist. Long story but i suffered with hormonal migraines for many years, many drugs, specialists but was cured within 8 months of taking homeopathy. Never used it for endo as i didnt know about it then but used it recently for another hormone problem. If i was now diagnosed with endo, my path would be down the homeopathy road x
Ive used chinese herbs, acupuncture but homeopathy was the best. Diet helps too. I try not to eat too much dairy, fizzy drinks, spices, hot foods, onions and although veg and fruit are good, it causes bloating for me, so i dont eat too much of it. X
Hi - I know this thread is old but hoping someone will reply. I am thinking of seeing Chris Mann for a second opinion but may not be able to afford surgery privately - has anyone seen him privately and then NHS for surgery?
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