Am I right to be angry?

[emiliejane]

Hi all

I had my diagnostic laparoscopy last April (it took me almost 12 years to be diagnosed) - so coming up to 16 months ago. My post-op letter clarified that the (BSGE) Surgeon found "nasty endometriosis" which he excised off my bladder and burned off behind the womb (despite the fact that I specifically traveled quite some distance to see him for excision surgery, and not ablation, and even as I was being led down to theater I asked for clarification that excision only would be used). The letter also confirmed that my tubes were clear and that I would have no trouble conceiving. This was the extent of the letter.

Anyway, since then I have had a few appointments with him and his team as follow-ups, as well as liaising with them on the telephone. Whilst speaking with the Endometriosis Nurse on the phone yesterday, she said "well obviously you'll be needing more surgery anyway as the Surgeon didn't have time to finish your surgery so left most of the disease behind". I was gobsmacked and said I was shocked as this was the first I've heard of it despite numerous appointments and telephone conversations since my surgery 16 months ago. She said that he did not have time to complete the surgery. She also said that endometriosis was found in my pouch of douglas, which again, I knew nothing about.

I am feeling really quite upset and angry about this and just wanted to vent. I have gone through the last 16 months really disappointed that the surgery has made no difference whatsoever, when I had such high hopes for it, especially as it was with a BSGE accredited Surgeon. Now I know that the surgery was incomplete and I'll be needing more. If I had been told this at any point I would have been understanding, but I just feel so let down. Sorry for the rant!

Hope everyone is having a good pain-free day x

[weekari]

Wow. I'm angry for you! That's ridiculous, in so many ways. You should have been fully informed and you should have had the surgery to complete the procedure straight away. That's absolutely awful. I can't even find the right words to say how bad I think that is. You've every right to be angry.

Vent away. You don't need all that pent up anger inside your as well as that endo! I'm pretty sure endo feeds off suppressed emotions!

Has your life been badly affected by your symptoms since your last surgery?

I actually think you've got ground for a negligence case here but you may not want to go down that route and maybe just want to focus on getting treatment.

Have you been in touch with PALS? if I were you that would be my next move. Tell them everything and request that you have the correct surgery ASAP. They do seem to get things done for people.

Was your last surgery at an endo specialist centre? If not, you could maybe request for that.

Keep venting!

Xx

[emiliejane in reply to weekari]

Thanks for your reply and advice. I actually work at a Solicitors who have suggested I pursue a medical negligence claim, but I just don't know if I've got the fight in me at the moment. I will have a look into PALS - thank you, although I am keen to pursue more treatment, and preferably sooner rather than later as the illness is really affecting my quality of life at the moment. My symptoms have affected me since surgery, as in I've not had any improvement since before the surgery, so have been poorly and had quite a bit of time off work (I used up my entire annual "allowance" of sick days at work within the first quarter of the year). My surgery was at a specialist centre, which is why I'm quite surprised at the way things have been handled.

Thank you again xx

[weekari in reply to emiliejane]

You've really had a bad time of it. I totally get that you don't want to pursue a claim just now and focus on your health. Your energy will be so limited. I think you get quite a while to do it though so it's not like it's now or never.

I really think that surgeon messed up. I wonder if they forgot they'd run out of time and they're just trying to palm you off and not make an issue of it. I hope it all gets corrected soon and you get benefit from it. X

[emiliejane in reply to weekari]

Thank you very much. I think I'm just feeling a bit miffed really - I had a GP appointment today about some ENT issues - I asked what the status was of my referral to a specialist that was made last September - the GP went very quiet and then apologised, saying that the GP who was supposed to make the referral "forgot". I'm not doing very well with medical experiences at the moment haha xx

[JOSANDY40]

There is little that can be said when the professionals these days are slow with believing you have Endo . . . not normal period pain, IBS, or another nutty woman! its really wrong. good pain relief helps, I love my TENS machine, Reflexology, Histamine free diet, no Estrogen foods, GLUTEN or LACTOSE. My Belladona for pain and cramping. Fennel Tea for cramps and inflammation.

My best x

[HellyLlewelly]

Bless you, you have been treated disgustingly and he had not the balls to tell you post surgery that he couldn't do a full excision and explain his reasons why....

The pouch of Douglas because it's being the womb I am not a medical professional but this would be pressed upon when your bladder or uterus swell like at the T.O.M etc, it must compress the endo and we all know that it's presence can be v v painful even in moderate cases for women.

I had a Hysterectomy TLH BSO in March and most of what my endo engulfed was removed yet my bowel had extensive excision surgery and I found that settling took past 3 months.

For you to have to do another recovery for the same lot of endometriosis is going to cost you time off work which you shouldn't have to had to take as all recovery time shoukd have been in 1 x block. The recommendation of PALS on here is a good one one. I just can't get my head around this twit leaving you riddled saying ahh, times up! I couldn't get it all and better luck next time to whomever is operating on thus lady. Pig, I hope he choked on his dinner that night.

Against the code of medical ethicsis it not...

I didn't really get all the answers I needed I would have little idea if I've been left with any but a few cells that of course my surgeon said are microscopic but him excusing any deeper to my bowel could have perforated it. He was honest and candid and that's what I prefer. I did pay for my surgery as n.ireland NHS waiting time here was +22 months and I had already done 9 months on the list. Unfortunately we have a cancer boom here taking up all routine surgery slots so if you don't have cancer you are at the back.....

Good luck.

I'm really sorry you are in this position.

Helly.

X.

[Ash24601]

I’ve known similar things happen local to me, may I ask roughly which area this was in? Maybe don’t go into details, I don’t want to panic anyone who may be under the same dr. I am just wondering if this happens to be the same one I’ve heard of?