Has anyone had a Total Pelvic Peritoneal Excision operation?

[Smarties1]

From what I've found online I'm thinking this operation helps 'cure' the symptoms for a lot of woman. Does anyone have any knowledge/experience of this procedure? Thanks

[wp22]

I haven't had it but want it badly. Sorry I can't be of any help x

[daffodil]

Type this into the sear ch box as a number of ladies have posted about this.It is only available at a few specialist centres in Uk,if I remember correctly,but seems to be the best chance of ridding us of endo.

[Lilly83]

I have, in the North West, the surgeon I had has successfully performed the same surgery to several ladies on here too. Inbox me if you want more details, I had it in July and been great since x

[Kall27 in reply to Lilly83]

Hi Lilly83, I realise this is an old thread so I'm sorry for the "random" message but I live in the North West (Liverpool) & I'm going to ask my consultant for this surgery but I read that it's only performed in Dewsbury, is that where you had yours? xx

[Seaside1]

Hello,

I am due to have this in a few months time. I have tried absolutely everything else to no avail so am really keeping my fingers crossed that this works. I have heard great things about it. x

[JaneHJ_CEO]

Hi Smarties1

You should be aware of a few things regarding this operation. Firstly there is no independent clinical evidence that this procedure works any better for women with endo than simply excising the patches of endometriosis that are found on the peritoneum.

Secondly, a number of leading experts and consultants that we have spoken to also believe that total peritoneal excision could be seen as over-treatment and if excision of the endometrial lesions is done fully and completely then a total excision of the peritoneum is not required.

We have heard from the team at Edinburgh RI who looked into performing these operations. They felt that were serious risks involved including excessive scarring, distortion of the anatomy, lots of adhesions and that while removal of the peritoneum is straightforward over some areas, others such as the uterus, ovaries and ureters, are problematic. It also has the potential to be very painful and does not remove deep disease.

I hope this helps.

Helen

[Hidden in reply to JaneHJ_CEO]

Hi Helen. Whilst I very much understand why you have posted the above what I am struggling to understand is why Endometriosis UK do not make more comments regarding the benefits of excision over ablation? It is really good to see Endometriosis UK are prepared to post like this but it is the first time I have seen it compared to the numerous times ( far too many in my opinion) that women have posted about having ablation. It is genuinely upsetting to me that more isn't said to women ( by GP's / gynaes and Endometriosis UK) to make women aware that excision is far superior to ablation. I would like to see Endometriosis UK input more like you have done above. I have just had my lap but have had to research it all myself. Until your comment just now I genuinely thought Endometriosis UK didnt want to make comment as its every womans own decision but now reading your input has made me wonder why it does not want to make more of a push to advocate excision and make women aware that ablation is not recommended by experts.

[piper7 in reply to Hidden]

I totally agree with what your saying. ...the reason why many surgeons wont do tpe is because they're not skilled enough. David redwine on endometropolis a fb page are fantastic for expert info The latest info too and I'm sure I've read quite a lot which would prove a few things wrong you have said above this post helen....not sure you'll see this reply. ....does anyone know the tpe lady consultant in york? Please....I want a surgeon who is expert enough to do tpe its as simple as that. X x

[Tiger_1]

Completely agree with the above comment. Much more should be done to promote the benefits of excision over ablation. I've spent thousands I don't have on ablation surgery and much agony which could have been prevented had awareness been raised. I really don't understand why consultants continue to perform ablation when it clearly results in leaving endo behind that continues to grow (I understand why the NHS does, given additional costs involved, but not private surgeons). None of this makes any sense to me. Why has independant research on this method not been conducted? Given the sheer number of women who suffer from this chronic condition I would have thought market forces would prevail, but where are they? Understand the risks cited above, but if the surgeon is highly skilled (such as Mr Tehran, purportedly...) these risks can hopefully be minimised.

[janes8650]

plenty of women on these and other forums have found that the operation has helped greatly, having previously had many failed normal excisions and ablations. there is no problem with scarring, many surgeons are reluctant to perform the procedure as they are not skilled enough, and if they did, they would damage the organs. the surgeon who developed the technique also has put his results on his website which you can view; there are very low risks and amazing outcomes:

Pelvic pain in every patient was on average 78% lower than before their initial operation

Backache in every patient was on average 70% lower than before their initial operation

Pain with intercourse in every patient was on average 67% lower than before their initial operation

Bowel pain in every patient was on average 60% lower than before their initial operation

Bladder problems in every patient were on average 73% lower than before their initial operation

98% of patients experienced an increase in quality of life (average before operation: 2.7/10; average 3.5 years after operation: 8.2/10).

Of patients under the age of 40 who were previously infertile, 53% conceive naturally (without the need for IVF). If IVF is needed, successful endometriosis surgery increases the chance of IVF success.

[Smarties1]

I'm so confused, I end up doing nothing about my endometriosis because I have no idea what the right thing to do is!!

[Hidden in reply to Smarties1]

Hi Smarties1 . I totally understand your confusion. I started looking into endo last summer & I feel I have done nothing but research it since then. It would be easy for me to have a rant right now but I am not going to. There are a few things I can however suggest -

Firstly have you joined your local support group, I have found mine invaluable for the emotional support and meeting other women. Secondly, and I can't stress this one enough, please look up a website called Endopaedia and join a facebook group called EndoMetropolis. Both of these are run by top American experts including Dr David Redwine, THE leading American endometriosis specialist. I felt totally on my own from the point of view of information until I found EndoMetropolis. It is a wonderful place, that is both open to discussion about treatment options but also not just 'sit on the fence' as I fear that us lot in the UK seem to be doing. Just a couple of weeks ago there was a comprehensive discussion about TPE on EndoMetropolis that you may want to read. I had TPE 10 days ago in Manchester and I am happy that for me at least it was THE correct decision. It is a very personal choice however and not for everyone I'm sure but if I can help out in ANY way please private message me. Please do as much reading as you can - it is awful that the research is left to us but...it is worth it...it has exhausted me & I feel let down hugely by where we are in the UK compared to America but once I put myself firmly in the control seat I never looked back. xx

[Hidden in reply to Hidden]

Hello there - I agree EndoMetropolis is really good. I think this site and that Facebook group both offer different things and both very good in there own way. Libby Hopton is also a really great advocate for us endo ladies. I didn't read the discussion on TPE but will for sure have a look as it may help answer some of my burning questions relating to it. Thanks..

[Hidden]

I agree that excision is the way to go, but yet it seems so many of the surgeons are simply not skilled enough. However, I agree with Helen CEO regarding the potential risks of TPE. I, and another regular member on this forum have questioned the TPE approach quite a bit but have not yet had any answers. My main concern was how extensive the surgery is, and mainly the following question:

Q - How do we know the impact of complete removal of the peritoneal lining? Surely this lining controls fluids arounds the abdo organs. Does it grow back? How can it grow back if completely removed?

I am really concerned about those two things yet, no one has answered me these questions.

Also, if TPE is indeed so successful, then why is the main advocate and surgeon of TPE not attached to a training hospital? If it is so crucial for us, then why aren't others been trained? I understand that the NHS may not back it, due to its costs but this does not explain why it's not linked to any training hospital. Surely this is crucial?

Also, of the footage I have viewed of videos on the Endometriosis Foundation of America - all advocate excision surgery, but not once have I seen any of these top Endo surgeons recommend TPE.

[Hidden]

If you are consideting TPE then as always it is wise to take a list of your questions to your consultation so you can discuss them. I wish you the best of luck eith whatever decision you feel is best for you. X

[Tiger_1]

I'm really interested in this and having this op in two weeks! Please DM me if you have any experiences you are able to share (or public post if that's allowed). Desperate to know answers to your questions Yellow Rose. Bablefish I asked these questions directly when I saw the consultant but did not feel I received the answers.

[skt68]

WHAT'S GOING ON ????? I'm now even more confused by this site. I have been reading this post as I am asking the same questions as Smarties1 and have seen the reply from the CEO of this site and I attach her response to Smarties1:

Hi Smarties1

You should be aware of a few things regarding this operation. Firstly there is no independent clinical evidence that this procedure works any better for women with endo than simply excising the patches of endometriosis that are found on the peritoneum.

Secondly, a number of leading experts and consultants that we have spoken to also believe that total peritoneal excision could be seen as over-treatment and if excision of the endometrial lesions is done fully and completely then a total excision of the peritoneum is not required.

We have heard from the team at Edinburgh RI who looked into performing these operations. They felt that were serious risks involved including excessive scarring, distortion of the anatomy, lots of adhesions and that while removal of the peritoneum is straightforward over some areas, others such as the uterus, ovaries and ureters, are problematic. It also has the potential to be very painful and does not remove deep disease.

Ok sooooo what actually is the best way to treat this god forsaken disease if excision is not the best way to go? Can some clarity be made.. I am more confused than ever right now....so what do you do if you and been researching about peritoneal excision....all the other replies on here are conflicting and confusing please can some clarification be made as I do not want to confront my NHS gynocologist on Tuesday for my post op consultation as to why a hysterectomy is not the way to go as whatever choice I make from this consultation will not be the wrong one does anyone really know what to do exactly I'm beginning to wonder.

[confusedandworried in reply to skt68]

Hi, I'm afraid there is no straight forward answer and arguments can be seen as compelling from both sides unfortunately.

Excision surgery is the gold standard for treating endo, although still no cure as no cure exists as yet for endo.

However with regardsspecifically to total peritoneal excision vs peritoneal stripping (ie just excising the seen endo on the peritoneal lining) it really depends on which side of the debate you tend to believe.

Some believe that there is such a thing as microscopic endo (ie endo that cannot be seen) and others do not believe it exists. Research appears inconclusive on this fact to date. The reason why one particular UK surgeon believes in total peritoneal excision is because he indeed believes microscopic endo does exist. Therefore he would argue that surgeons who only excise the "seen" endo are missing microscopic endo meaning women continue to suffer from symptoms post surgery.

It's not an easy decision for women to make whether to go ahead with what is deemed a radical approach. Speaking from my own personal experience I made the decision to proceed with total peritoneal excision on the basis of previous surgery has been unsuccessful and my concern that perhaps the level of skill needed to recognise and excise all endo may be limited within the gynaecological field. Removing the whole of the peritoneal lining at least seems to reduce the risk of endo being missed.

I was told by said surgeon that the peritoneal lining grows back like skin, fresh and disease-free. Trying to find any research or other medical profession to confirm this was impossible. My GP's knowledge of endo was less than mine! I contacted the Endo Society via email asking whether they could clarify whether such a statement was indeed true and never received a response. So in the end I had to make the judgement call myself, as what typically happens to women with endo after they are fed up of having things done to them with little care about actually involving them in their own treatment plan!

I can't really say at this stage whether the surgery has been beneficial or not as I am only 10 weeks post op plus had a hysterectomy for adenomyosis so it's difficult to know which symptoms were caused by the adeno and which symptoms were caused by the endo given both conditions often have similar symptoms.

I'm sorry there's no straight forward answer. But if you in your search for an answer you manage to find anything that would shed anymore light on the subject I would be very interested to hear of it.

Best wishes, Jo

[pinkypop in reply to confusedandworried]

hi , i'm planning to have a TPE WITH DR TREHAN ,-dr told me that the procedure is safe , no damage to the retroperitoneal nerves, and peritoneal lining does grow back . i would like to know from you and others in this forum if pain relief after TPE lasts many years . any answers would be much appreciated

[confusedandworried in reply to pinkypop]

Hi Pinkypop, Firstly we're not supposed to mention consultants names on here so this might all be removed. In which case feel free to PM me. But here goes anyway!

I am now 3 months post op from excision surgery for endo and a total hysterectomy (ie uterus and cervix removed) for adenomyosis by Mr T.

I can't answer your question regarding the retroperitoneal nerves or whether the lining does indeed grow back as Mr T indicates it does as unfortunately I couldn't find the answer to these questions myself via research or contacting Endo UK (who never responded to my query). As such I opted to go ahead with the surgery based upon 2 things really.

Firstly I had widespread endo pretty much everywhere so even if I had opted for the more conservative approach of peritoneal stripping (ie just excising the endo from the parts of the peritoneal lining, not removing the entire lining) I doubt there would have been much peritoneal lining left anyway.

Secondly I considered the ongoing debate as to whether microscopic (unseen) endo exists or not. Whilst there doesn't appear to be a definitive answer to this question, personally I believe it's possible. Furthermore, I believe that the level of skill required to appropriately identify and thoroughly remove all endo is such that it is difficult to find a surgeon who can do precisely that, particularly when theatre time constraints are so often imposed upon the surgeon. I rationalized (rightly or wrongly) that removing the whole of the peritoneal lining would at least mean no endo was missed, particularly if microscopic endo does exist.

I also had the benefit of speaking on the phone to someone who had undergone 9.5 hours worth of surgery, including TPE, with Mr T about 2 years ago after I noticed she'd posted her mobile number on a forum. She called Mr T her "god send" and couldn't praise his work enough.

It's a difficult decision to make with regards to opting for, what is deemed by many as, radical surgery and I don't think that is helped much by Mr T's communication style. That being said, I think he is like all the consultants I have ever seen, a little arrogant, not particularly forthcoming with information acting like god and that your questions are trivial and unnecessary! Perhaps in some respects they need to be this way in order to do what they do! We are all apparently supposed to have blind faith in these specialists as they are 1000% confident they know what they are talking about and what they are doing. What I would say about Mr T is that I think at the very least out of professional pride if nothing else he wants to do his absolute best and is thorough at removing endo. In fact I get the impression he is a bit of a perfectionist so can't help but be meticulous! The surgery will take as long as it takes and nobody will rush him!

In terms of my recovery it's been a bit of a roller coaster ride with ups and downs. Firstly I had issues with the temporary ovarian suspension that he performs resulting in an overnight hospital stay turning into several nights and having to have the suspensions removed before the 10 day mark that he usually suggests. He said it was the first time someone had experienced this problem, I don't know. I know other women on this forum who have had the suspensions didn't have the same issue as me so maybe I was just unlucky.

I then unfortunately had a post-op infection and after getting over that hurdle have had some problems with sluggish bowels which are finally starting to work properly now. I have read that the bowel issue is quite common after hysterectomy so you may not have this issue to contend with.

Endo and adeno can have similar symptoms so I can't say for sure which disease the surgery has helped exactly but for information my symptoms pre-op were: very frequent urination (every half hour when active and 2 hours when lying down), headaches, nausea, sciatic pain down the backs of both thighs, bloating, constant dull pain in my tummy and feeling like carrying a bowling ball in my stomach, very heavy and erratic periods and constant fatigue. Towards the end I also had an enormous pressure in my rectum which turned out was a result of chocolate cysts on my ovary bursting one week prior to surgery and my ovary sticking to my bowel.

Post-Op: I no longer need to urinate so frequently though still probably more that the average person (suspect this is because I had endo on my bladder that needed to be shaved off so it's probably still healing and also I probably need to retrain my bladder as it's used to going so frequently now), headaches are no longer daily but I still do get them on occasions (though this may be because of the hysterectomy and my ovaries have gone into shock - still hoping they will wake up and start functioning properly again), sciatic pain gone, periods obviously gone, most days the pain and bowling ball in my tummy have gone now but I still notice this from time to time, often when I have overdone it a bit or after my pelvic floor exercises. Unfortunately I still have the fatigue but this could be for a number of reasons such as still healing, not sleeping so well as my pattern is so disturbed from not sleeping well before surgery, hormonal issues etc.

On the whole I'm pleased I had the surgery and am hoping with each day that passes I will get better and better.

Apart from the fact that my quality of life was seriously impeded upon, I reached the decision to go ahead with the surgery partly due to my age (40). I had undergone 4 laps (1 diagnostic and 3 treatment) before seeing Mr T and none of those surgeries were undertaken by a BSGE accredited endo specialist as I didn't know they existed until the latter part of last year when I began looking for a surgeon knowing my endo was no longer manageable. All surgery carries risk but with abdominal surgery there is the risk of adhesions which can cause pain and other issues in themselves so it's important to limit the number of surgeries you have. That's why I was ready to try a more radical approach in the hope with thorough excision it may be the last surgery I need, particularly as I am likely to go through an early menopause (if I am not already!) due to the hysterectomy and if I look after myself properly,(ie eat healthily, exercise and reduce my stress wherever possible), this may also keep the endo at bay as I know from past experience that these definitely impact on my endo.

I appreciate it is a difficult decision as to whether to go ahead with major surgery or not. Nobody can tell you whether its the right or wrong decision and unfortunately nobody, including Mr T (which he does acknowledge), can give you any guarantees that you will definitely get the outcome you are looking for.

I hope this helps and I wish you all the best for the future and the decisions you make.

Best wishes, Jo

[moomoo8 in reply to skt68]

Don't panic skt68! I think? - you may be getting confused between "normal" Excision and TPE - which is where they remove the whole area? Some experts do disagree on that technique and think it's not necessary to do TPE and just "wide excision" of the actual areas of Endo should be enough.

Excision ie cutting out Endo is the way to go though, think of it as if you only burn Endo - it's like weeding without removing the root so therefore totally ineffective.

[skt68 in reply to moomoo8]

Oh thanks purple7 😁 for clarifying it's all very confusing 😀

[pinkypop]

hi confusedandworried

thanks for your detailed reply . i'm suffering from chronic pain since 3 and half years . i'm unmarried and an only child to my parents . i took several mri's , ct scans , ultrasounds -everything came normal . i guess mri can pick only deep lesions . For peritoneal superficial endo -which some docs suspect can only be lasered in my country , . Very few excisionists are available in the world .I've decided on DR T . I spoke to him .He said if you have endo , then you need a radical surgery .My pain is very severe on a daily basics -becomes extremly painful for abt 10 days before periods -i feel like an animal bleeding to death .i'm extremly nervous and scared to undergo TPE , since many docs in my country have not heard of it at all .i hope the temporary ovarian suspension goes off smoothly /

[confusedandworried in reply to pinkypop]

Hi PInkypop, can I ask what part of the world you live in then? Also before making the trip and paying a lot of money it may be worth you joining, if you haven't already, a Facebook group called Endometropolis as on that forum you are able to discuss specific consultants and ask for opinions on said consultants. I don't believe TPE is necessary in all cases and there other surgeons within the UK and indeed other countries that can offer good and thorough excision surgery at a more affordable cost. Ultimately good and thorough excision surgery is really the key to improving the likelihood of reducing/eliminating endo symptoms. It's not to say I wouldn't recommend Mr T, only that there may be other options available to you that you are not aware of yet and that is why I would suggest joining Endometropolis on Facebook where you can openly persue recommendations for good excision surgeons close to you which is unfortunately a little more difficult on this forum. I hope this helps. Best wishes, Jo

[pinkypop in reply to confusedandworried]

hi confusedand worried

You are so prompt in your reply to my queries ,/ I must say you are amazingly kind . I live in india . I feel bad i did'nt reply to you soon , it s' been 10 days . I ve been going to my ob-gyn , -She has started visanne-2 mg -a new progestin for treating endo . It helps about 20 percent of my pain .She 's asking me to go for acupuncture treatments ,i'm skeptical .Doctor who does acu treatments says it can give relief for 3 to 6 months . I do'nt want short term pain relief .I consulted more than 10 top laproscopic surgeons in india . Lasering off the endo lesions is the only option available in my country .MOREVER they made it very clear to me that they will not laser the endo from bladder , recto -vaginal septum , cul de sac , behind the uterus ,ureters . They want me to sign a consent form -ie i wo'nt /should'nt question them if my pain or lesions persist even after lap surgery / . It's frustrating .there are good excisionists available in US ,but I'M READING bad reviews abt them .They are probably scared of american patients but treat international patients with lot of apathy.AS YOU RIGHTLY SAID IT DOES COST A LOT , BUT I HAVE NO OPTION ,I GUESS .DR T 'S secretary told me it would cost 15,000 pounds -without the diagnostic lap .Surgery cost includes hospital stay /medicines /tests etc .Will it cost more?Apart from this, i need to stay in the hotel near Yorkshire .Thanks for providing me with the link to endometropolis. i'll look in to it .TAKE CARE -PINKYPOP