I know we can't refer to specific surgeons so if any of you lovely ladies could PM any recommendations/thumbs up of experienced BSGE surgeons in these areas, that would be great. I've been a patient of a well known endo-guru in Yorkshire (Mr T) and am devastated he retired last year and left me hanging (!) I'm in need of some advice re suspected diaphragm endo and nerve pain and have to start my search all over again for a surgeon I can trust. Any feedback would be greatly appreciated as just reading loads of consultant names online isn't getting me very far! thanks everyone x x
BSGE surgeons North West/Yorkshire area - Endometriosis UK
Couldn't recommend my consultant and surgeon enough! My consultant is at pinderfields and my surgeon is at dewsbury xx
Thanks Lizzy if you could PM their names that would be fantastic! Thank v much, glad you found some decent consultants x
After years of gps and gynaecologists not helping me I did my own research and demanded to be referred to pinderfields (which is BSGE) within 4 weeks I got an appointment and 6 weeks after that I had my lap, 12 weeks after the first lap I will be having my excision surgery on 10th September. They've both been great and are very understanding, I will pm you now xx
It is such a shame that so many of us have such similar battles to get the treatment we so deserve. It shouldn’t be our sole responsibility should it. I really feel for you having had similar battles myself. I wish u all the very best for your surgery on the 10th. Thanks so much for your replies x
I’ve messaged you seconding what lizzy says, but forgot to say pinderfields also have an endo nurse that sees you after surgery and you can contact anytime. I’m nearly a year post excision and she still sends me information in the post about endo and support groups/ information sessions they are setting up through the hospital. She gave me loads of advice on diet and lifestyle to manage/ prevent return of endo after excision which I know a lot of hospitals don’t provide. She has endo herself so is really understanding. Xx
Thanks so much, really interesting to hear about the Endo nurse too, that’s such a good idea. While I saw one of the leading surgeons (who’ve just retired) he didn’t have a specific nurse & that aftercare/advice/info/post op support is so crucial. A lot of people don’t even realise Endo can and will return post surgery - my first consultant never told me it was incurable and never told me it was likely to return, which it did very aggressively within six months despite having a six hour op to excise aggressive Endo at my first lap. A year later I was back to square one, perhaps even in a worse state, and that potential outcome was never highlighted to me. To have a nurse who has actually experienced Endo is a huge plus. Thanks so much for your comments, really helpful x x
I am sorry about your endo-guru retiring. It is so hard to finally find someone good, only to have to start the search all over. I am in a similar situation, as I am moving to W. Yorkshire from USA in the next couple of months.
If you can forward me any of the recommendations for consultants and/or surgeons that you receive, I would really appreciate it.
Thanks, and I hope you get everything sorted quickly!
I’ll PM you with any names I’ve received so far plus my own researched ones too, will do once I’m home soon. As u say it’s horrid when u finally find someone you trust who does a great job only for them to retire. I’ve had surgery in Sydney and looked worldwide for talented Endo surgeons but need one closer to the uk now that I’m here!
Good luck with your move! X
I know this thread is over a year old, but I find myself in the same situation you did a year ago re Mr T, if you could pass on any recommendations you have by PM, that would be much appreciated.
Thanks for ur message. I feel for you being in same position, great when u find a good surgeon, not so great when they retire!
I finally went and saw Dr Kremer at Pinderfields Hospital Nr Wakefield, I wrote to him personally explaining my complicated history & surgeries I’d had in Oz & with Mr Trehan at Spire. I got a private appt but then transferred to his nhs list for my diagnostic laparoscopy.
To be brutally honest, yes he came with a lot of recommendations, but I don’t feel he was anywhere close to the dedication you saw in how Mr T practiced. Whether it was because I got a diagnostic lap with him via the NHS, I felt I was just another number on a conveyor belt going through and there wasn’t any personal approach or thought like I’d experienced with Mr T. Even immediately before my lap in hospital, I almost had to remind him who I was and what I wanted him to investigate, I just didn’t feel 100% confident. The lap was over in half an hour & I’d specifically asked for my diaphragm to be checked yet it all seemed v vague and I just felt like I was another nhs patient on a conveyor belt going thu surgery. I also found to hard getting the exact info from surgery and getting feedback.
At a consultation well after the lap I didn’t have long with him and was in a lot of pain and he just recommended I go on 6 months of decapeptyl with add in HRT (tibolone) there was no detailed discussion about that medication or the extensive side effects etc and I felt like no other options were discussed. I know I’m a complicated case but I just didn’t feel he was that dedicated to the cause, but then again no one I’ve met has been, Mr Trehan at least had some dedication.
I have since done my own research into decapeptyl and decided against taking it and wrote to me keener explaining the reasons why but have yet to hear from him. Maybe it would have felt different if I’d remained as a private patient as this is my first experience of his surgery for my Endo.
When I’d originally asked on the forum for recommendations, a few mentioned Dr Kremer, I also saw Dr Fawzia Sanullah at York (BSGE centre too) but I wouldn’t personally recommend her, I also got a recommendation for Jeremy ‘Jed’ Hawe at the BSGe centre at the Countess of Chester Hospital & Dr Gaity Ahmad who is at the BSGE Pennine Endometriosis Centre NHS at the Royal Oldham Hospital. I also contacted the Stepping Hill Hospital in Stockport as they're a BSGE centre too but there was no particular consultant who was recommended to me there, the secretary said NHS wait times are dependent upon your clinical requirements.
For info, I paid £170 for a private appt with Dr Kremer at Spire but did have to wait for that too due to a long waiting list.
That’s about all I can tell you, hope that helps slightly. In the end if the day you’re dealing with professionals who don’t know an awful lot about an incurable illness so they’re all limited to some degree in how they can help you I guess.
All the very best x
Ps there was Andrew Pickersgill too in Manchester, I’ve heard v good reports of but then again also heard a few bad ones too, that’s the way it goes!
I had surgery with Mr T in 2017 in West Yorkshire and just starting to have some problems, but not exactly sure what, whether return if Endo or adhesions, which I had a lot of. I have had two amazing g pain free years, so a little worried now
Do you have the name of any other surgeon, if so, were you referred under NHS or privately.
Hi there, yes it is very worrying when you start feel the familiar horrid symptoms starting to rear their ugly head again, especially after such radical surgery that Mr T offered. Like you, I had a good couple of years of seeing great improvement but unfortunately familiar signs have crept back slowly. However, I do have adenomyosis too so it's very hard to determine which is the culprit exactly. I referred myself to Dr Kremer at Spire and initially saw him privately before requesting I be transferred on to his NHS list which was through Pinderfields Hospital. I didn't have to wait too long for a diagnostic op that way, however, I felt it was a rather rushed 35 min procedure where there seemed to be a bit of a breakdown in communication in what notes had been taken privately which did not seem to easily be transferred on to the NHS files. The lap did at least give me a snapshot of where things sit now. It did confirm there was more deep seated endometriosis build within scar tissue. I don't think it ever goes to be honest with you, radical surgery or not. Hope that helps?
Thank you, I really appreciate it. I had radical surgery, 9 hrs, but I had a lot of adhesions. I’ve had intermittent pain over the last couple of months but it has gone away. This time it is worse and going down my leg which it did before. I’m going to wait another few weeks to see if it settles, if not, I will seek help. I hope you get back to being pain free
Yes my surgery was a 9hr slog too, horrible wasn’t it. It was the last resort for me and after the elation of thinking it had finally been the answer, it’s incredibly demoralising to find the old faithful pain returning. My lap notes from pinderfields showed extensive scar tissue (from the degree of radical surgery Mr T did I’m not surprised we both have extensive scarring) unfortunately that in itself can cause its own pain even if Endo isn’t now present. Scarring can also trap nerves. Like you, I’ve found increasingly bad leg pain esp over the last year or so, real nerve jumping stuff down both legs and aching too, I think it’s inevitable with surgery that nerves can get damaged or trapped within scar tissue afterwards. I got the feeling after my last lap that no further surgery would actually be beneficial for me as ultimately it will just cause more scarring. I was just recommended 6 months of decapeptyl and add back oestrogen which I didn’t agree with as ultimately that in itself can bring more pain and side effects and I can’t face any more tbh. I also only saw it as a short term quick fix solution where I would ultimately be back in the same position once the treatment had finished.
I hope u can get the further help u need. It’s a horrible situation to be in, esp after taking such steps as radical surgery, I can understand a little of how u must be feeling now. If I can help any further, just pm me. All the very best moving forward and hope u get some help to tackle these new pains. As I’ve found, battling this for near on 20 yrs now, it’s a v complicated incredibly misunderstood illness for which there is so little medical support or dedication shown in understanding the predicament and suffering we all have on a daily basis. It’s an absolute travesty the illness is not out there in the common domain more.
Not what you're looking for?
You may also like...
possibly on bowel, bladder, and I suspect now my sciatic nerve which causing pain in buttocks, down...
Would just like some good endo specialists in west Yorkshire or near by please that will
before I go ahead and take the plunge I would like to hear from any warriors and heroes of this...
to whoever I think is best.
So, does anyone have any suggestions of gynaecologists in the morth...
Hi ladies, does anyone live in West Yorkshire? As I've had a call from my endo nurse telling me...