Just wandered if anyone had total pelvic peritoneal excision surgery ?

[millie2013]

Hi

I am a first timer on the endometriosis uk community !!!!

Just wandered if anyone has had total pelvic peritoneal excision surgery ? Just interested about hearing about other people experiences with this. Thank you xxxx

[Miwa]

Hi Millie,

I have radical excision surgery (total pelvic peritoneal excision surgery) nearly two years ago. Previously I had 6 laparoscopies which always resulted in the pain returning within 1-2 years. I was very worried about having the surgery, as it is a long operation, but I now wish I had had it sooner as it has totally changed my life. I went from not being able to walk well several days a month, taking medication that didn't touch the pain, painful intercourse etc etc. Now I am virtually pain free. I get a little pain during my period but nothing that impacts on my life as much as previously. But this is due to adenomyosis causing the pain, as I wanted to keep my uterus, as did my surgeon. I would highly recommend it as it is the only treatment that actually gets rid of the endo and prevents it from regrowing.

xx

[millie2013 in reply to Miwa]

Hi Miwa, Thank you so much for responding so lovely to here from someone that has been through the surgery. Would you mind me asking how your recovery from the surgery was i have a part time job and a busy house. I completely appreciate that everyone is different and responds differently to surgery though.I am soooooo nervous about the operation especially as it can take up to 8 hours. I am not sure if i will be keeping my uterus or not as had a lap on friday and seeing my specialist next week for the full results. I am so pleased your pain free from this awful disease xxx

[Miwa in reply to millie2013]

My surgery was about 7 1/2 hours and I was up and about and walking the following day and went home, and driving within a couple of weeks. I have a very physical job so I took 6 weeks off work. If I was in a more sedentary job I would have returned much sooner. The first four days or so were quite sore and I was in bed just walking to the bathroom or looking out the bedroom window. After this it got easier and I was going for short walks every day after about 7-10 days, building it up slowly. Try and get someone to help you around the house, or just leave stuff that isn't important so that you can concentrate on recovering.

I really hope that this changes your life for the better too, and I am sure it will.

xx

[millie2013 in reply to Miwa]

Thank You Miwa i get my full results next week from my specialist. Would feel like a second chance at life if i could could be endo free. Thank you for your support xxx

[Livvie01 in reply to millie2013]

Hi Millie. I hope you don't mind me jumping in on your post but I'm very interested in this surgery and would love to know what hospital and consultant you are seeing. Would you mind pm me. I wish you every success and hope the surgery is a success for you and changes your life for the better

[Hidden in reply to Livvie01]

I would love to know as well.

[Mrs_N]

Hi Millie

I had this surgery 6 months ago. It has made a dramatic difference to my life. Well worth having done.

It's a long recovery (mine is taking longer as I also had a ventrosuspension).

Like Miwa said, it's more thorough than the nhs procedures as it removes seen and unseen endo. Although my consultant said it can come back somewhere else such as the groin. Which shouldn't cause problems as there are no organs to attach to.

I can highly recommend my consultant. Please inbox me if you would like his details.

Amanda x

[Achen80 in reply to Mrs_N]

Hi Amanda-

I just got the same exact operation + ventrosuspension (we possibly had the same kind surgeon up north

I was wondering how long it took you to heal and if you have any tips for dealing with ventrosuspension pain (which feels like it will never go away right now).

Thanks so much,

Annie

[Amybyrne01 in reply to Mrs_N]

Hi Amanda ,

Im new to this and can't seem to be able to inbox you , but I would love to know the name of your consultant who did your procedure .

[stevieflp]

Yes - I also underwent total peritoneal excision surgery 3 years ago now, after being written off by my first gynae consultant who said I was "a total mess" and my only hope was a hysterectomy and oophrectomy. I now know this advice was flawed indeed as a hysterectomy only sorts a condition called adenomyosis (endo like growths in the uterine muscle), which incidentally cannot be confirmed 100% until after the operation and a biopsy is taken - it can only be suspected by a bulky womb and symptoms. For endo in the peritoneal cavity, excision is the gold standard. Most surgeons who say they do excision surgery do in fact only remove patches of seen endo. This is certainly better than laser (which is like doing the garden and only cutting the weeds down from the surface and leaving the roots) but where all endo is not removed, it can lead to multiple surgeries to deal with more patches as they become problematic. Total radical excision is an extension of this and removes the whole lining of the peritoneal cavity in one go, thus removing all seen endo and all as yet unseen endo (but which may have gone on to cause more problems and multiple surgeries over time).

You might wonder why 'total radical excision' has not become the gold standard for endo treatment - it certainly should be - but it is the most demanding gynaecological surgery in terms of skill and in times of length of surgery (usually between 5 - 9 hours)/ demanding on the surgeon. Not many surgeons world-wide have yet reached the stage where they devote the time and develop such skills to perform this and so stick with less demanding\less effective surgery, although some of the more endo focussed/s specialised gynaes are starting to take notice of the benefits of removing all endo (seen and as yet unseen) as opposed to removing just patches of seen endo. Funding on the NHS for a non-life threatening condition is also possibly a factor. Total Radical Excision technique has a higher chance of removing it all.

Whilst the outcome of any surgery cannot be guaranteed, I can honestly say I have not had any signs of endo pain at all since. I believe it was the best thing I could ever have done for myself. I did not want to undergo a hysterectomy (I have nothing against it for the right reasons), or have my ovaries removed, or go into chemical menopause, but from reading research I could not see that any of these things were going to be the answer or reach the outcome that I wanted. It certainly has my recommendation.

Please feel free to pm me if you have any questions about the experience of this op.

Love and best wishes x

[Hidden]

If I were to need another op for my Endo, I would definitely go for this. Have a look also at ENDOFOUND.ORG - the main charity in America. It has a tab with videos including a lot of presentations from specialist Endo Surgeons, and they only recommend Excision surgery and explain why, just as many of the ladies have explained so eloquently in the below replies.

If I had my time again I'd have gone for excision surgery, even though my surgeon on the last Op was pretty good - I still get pain (not nearly as severe) but he did cut and burn rather than just cut. Not good!

Ladies I will inbox you as I would love to know who you were operated on, even though I think I may know who

[Hutworth86]

Hi, I have suffered with recto vaginal endometrisos for 3 years I have chest and shoulder pain that coincides with my period. I am due for 8 hours of surgery very soon. I was just intrested in if the surgeries you have had were NHS I'm not sure if I'm having total excision or if that is only available privately? Many thanks in advance x

[Tiger_1]

Hi everyone. Did anyone find out the name of any surgeons who do Total Pelvic Peritoneal Excision? I'm desperate please can you let me have any contacts nhs or private?

Thanks so much!

[lk76]

I'm very interested in this too .. is it available on the NHS?

[Hidden]

I am 9 days post op from having had TPE. I would be happy to pass detsils of my consultant if you pm me ( for sone reason we are not allowed to discuss names of surgeons on this forum)

[confusedandworried in reply to Hidden]

Hi I have endo & now suspected Adenomyosis as well. I am due to undergo a diagnostic lap & biopsy on 8 Jan privately at Spire Elland Hospital with a consultant who specialises in TPE. Then I need to decide whether to go ahead with TPE & having my uterus removed (if it is adenomyosis). I have read lots of forums of women advocating the surgery & a few who do not saying they were still in pain from the surgery alone upto 1 year later. Also some research suggesting TPE is overkill, unnecessary & potentially harmful (although I cannot find any details of what is meant by 'harmful'). Up until about a year ago I had been managing my endo through diet, exercise & herbal remedies prescribed by a naturopath with good success (ie symptoms dramatically reduced). I had given up on traditional medicine after being offered tramadol or hysterectomy as my last options! Unfortunately over the past year the pain has returned, my periods are very irregular, I am so exhausted all the time, I have to urinate every half hour and sex is painful. I'm wondering whether this is more caused by the Adenomyosis and maybe I still am keeping my endo under control. If that's the case TPE would be overkill & I could find another surgeon to remove my uterus without having to pay the shortfall (which is a lot) to the surgeon who does TPE as my BUPA health insurance doesn't cover all of it. However I would then fear I may have missed my opportunity to finally rid myself of this disease if that's what TPE surgery can actually do. I wondered if you would mind sharing your experience & let me know how long / how well you have recovered? Many thanks in anticipation.

[millie2013]

Hi confused and worried I decided not to have the tpe surgery ( I did have a lap and cystocospy with him) as the specialist at elland said he couldn't rule out infection being part of my pain . I had tests done with another specialist and discovered I had a deep inbeded infection in my bladder which is also causing tiredness, pelvic and back pain, bloating and irritation. I have this and endo stage 1 . I am seeing a herbalist and am about to see a TCM practionair . I need to get my infection cured before I have TPE if I do have it.Ultimately there is no right answer I think when endo tips the balance where you have more bad days then good it may be an option . This is major surgery there is no getting away from that . I do feel for you such a difficult decision . I wish you well sorry I haven't been able to help more x

[mrsvowden]

Hi all.

I've just found this! So glad I have from reading your replies.

I've just been referred for this procedure this morning, there's a specialist clinic in Cornwall purely for endometriosis. I'm sure it's extended up the country too.

Can I ask, what is the scarring like from this procedure? How's it done? I'm not overly bothered as I'm desperate to get some normality into my life, but would be nice to know.

Thanks xxx