Is this strange to you,but?

[kittykins7]

I had my Endo op privately by one of the top guys (I know your not allowed to name names, so I wont) but it was really strange the way he went about it and I wasn't clued up at the time that this wasn't quiet normal.

I saw him at a consultation and explained all my symptoms which where awful.

He told me he suspected Endo but wouldn't know until a laporoscopy. (I had only had an ultrasound by this point, which the doctor had told me suspected endo)

He never did any examination of me internally at the consultation. I was given a date to have my laporoscopy and was told the surgery would also be done at the same time to remove whatever was found which I paid for in advance.....I must say, I did think it was strange at the time that I paid almost £6k upfront before knowing if I had endometriosis or not for sure, I did think if its not Endo then surely this is an expensive Laporoscopy??? But I was in such agony at my wits end, and he is regarded as one of the best in the country.

I had my room booked and everything at the private clinic, and it was strange now looking back after reading everyone else's experiences, as everyone else seemed to know prior to surgery and have a team involved depending on bowel/bladder issues. I didn't have any of this as I didn't know for sure 100% that I even had Endo, yet had paid 6k and was booked in for potential Endo excision if found at my first ever laporoscopy.

When I woke, afterwards I was told by him that I had stage 4 Endo, uterus was stuck to bowels, Endo in pod. It had spread to my left and right side of the abdomen....he told me he had removed it all and separated my bowels from uterus. It was deep and infiltrating. I stayed in hospital for 2 nights and had a catheter fitted.

Looking back I worry that he performed all of this without a bowel/bladder team and separated these important organs.

I was also told at the follow up appointment that he suspected ademonyosis as well.

It did start to return after 6 months, but I manage it myself naturally now with supplements and diet, which works quiet well, however I do still have problems with my bladder and bowels, and do worry that this wasn't really dealt with by a team, but rather 1 person.

I've always had the urge to go for a wee often, and the feeling of a full bladder...I also get a painful tugging feeling just at the point where I need to poo, it comes on sudden and makes me double up, and I have to go to the toilet straight away to pass motions.

Does this sound strange to you on how I was treated, or am I being paranoid.....for all I know this specialist could be qualified as a bowel specialist as well....I just worry he was messing about with organs he shouldn't of and its trou led me for years, as my bowels and bladder are not quiet right.

I'd love all your thoughts please guys?

[Mumpet11]

Hi

Sorry you’re going through this too. I had a similar experience with a private Gynae. Mine was covered by insurance. My surgery was about 18 months ago, my endo certainly wasn’t as severe as yours sounds, but it did go deep into my bladder. The Gynae removed from my bladder himself and caused damage which resulted in having a catheter for 2 weeks. I don’t think my bladder has ever functioned properly since.

I had endo on the bowel then too but it wasn’t treated by him at that time.

I am now in significantly increased levels of pain and considering further surgery, but am worried that if other specialists are not involved it may again lead to a long recovery time and other pain symptoms due to scarring / any damage etc.

My consultant actually almost joked that this time should be easier to recover as he won’t cause any bladder damage this time…

I didn’t know that other specialists were involved as standard until I starting reading the posts on this group. Similarly, I had an ultrasound and the Gynae said he suspected endo and took me for laparoscopy, and then I woke up with a diagnosis of this awful disease and a delightful catheter for a short time.

I expect your situation is not unique for those who are fortunate (in some ways) to get help from the private sector… it is very strange to me that this is the case though even so.

[kittykins7 in reply to Mumpet11]

Hi,

And thanks so much for your reply, that's helpful to know that you also experienced similar.

I'm sorry to hear about your situation and your bladder / bowel problems as well.....thats just awful about the consultant joking!....it would be interesting how different they would be if it was one of their own family members! I wonder!

I was the other way around, he treated the bowel but I'm not sure he did anything about my bladder....I still don't really know.....you get more information about putting your car in for an mot than you do having surgery!! Laughable really isn't it 🙄

This site is brilliant for learning and sharing, if I wouldn't know half as much if I hadn't found it!

I suppose on the positive side of things, as we are both more knowledgable now, any second surgery or treatments we would be asking more questions and not just going in to things blindly!

Good luck with your treatments

Xxx

[Cactus0724]

Hello, I can’t answer all your questions but i have also gone private. I had been to a doctor, who referred me to a gynae who specialises in endo. I had a consultation with her and she also booked me in for a lap which would treat any endo. I know this doctor has performed a lap on a friend of a friend before and when it came to the bowel she didn’t touch it as she didn’t want to cause further issue so she had specialist surgeons with her. It’s scary isn’t it as we put so much faith in medical professionals and when you go in just wanting someone to help you don’t really know what the processes should be! I think for your own peace of mind it might be best to perhaps contact them to find out more and to see if they can help you. Hope you feel better soon and sorry to hear you’re going through this. Xx

[kittykins7 in reply to Cactus0724]

Hi there,

Sorry to hear also about your situation. Your right, you do put your faith in them and go in completely blind to what is right and its not until you gain more experience through chatting to people here that you start to question things!.

Yes maybe I need to investigate further.

Xxx

[Avourneen]

It definitely doesn't sound right. If you had stage 4 endo he could/should have told you this from the scan. If it was rectovaginal he should have had a bowe/bladder surgeon working on it and usually you would meet that person and be introduced to them before the op. If you have adneomysiosis he would have seen that on the ultrasound before the operation.

I have never ever heard of anyone being asked to pay for the op before it was carried out.

It all sounds extremely dodgy. What makes you think he is ne of the top surgeons in the UK? He doesn't sound like a professional at all so I'm guessing it's just his own marketing bumph on his website.

This is why it is extremely difficult to choose the right surgeon they all advertise themselves as one of the top gynae surgeons in the UK/world and present very selective feedback and testimonials using only those from patients who have been successful.

However, this guy has not followed any of the recommendations made by professional bodies. I'm really sorry that you have had this experience I had something similar too. The only place you can get honest feedback on surgeons from the patients is Facebook. There is a facebook endo group and the same 2 or 3 doctors come up every time as very good and several have reams of complaints about the same surgeons.

I understand that websites like this don't allow patients reviews of surgeons for legal reasons and I understand why but it is very difficult because of these restrictions to alert patients to rogue surgeons.

I think you are very lucky to not to have sustained any serious damage. Next time (I hoope you don't need further surgery) try the facebook endo group. There are even groups of women who have had bad experiences with certain surgeons.

[kittykins7 in reply to Avourneen]

Hi there,

Thank you so much for the info.....I knew something was very wrong looking back....

He had apparently been doing surgery for many years and said he had training from a top surgeon abroad years ago.

I don't use Facebook but it sounds good for sharing Endo information, just don't know if id want to join to be able to access it.

I've private messaged you with who it was. Look forward to hearing back from you. Xxxx