Why do they NOT remove all endo in one lap?

[wp22]

It just doesn't make sense for surgeons not to take it all away first lap!!!! I know it does grow back but it will definitely grow back if they leave some behind and I know some spots are hard to remove but at the end of the day we want it GONE. I don't know about any of you but my life is kind of on hold again until my next lap is over and done with and If I wake up after this op and it is STILL there, like the last op what a complete waste of time and effort. I will just book in for another op for them to try and remove it all. Another year wasted and another year ttc with NO success because I have endo which is causing my immune system to kill embryo. Where will it end, also because of this it also puts a strain on NHS financially and waiting lists etc. I am loosing hope and patients and as time is passing me by I am getting more down about the situation. X

[worth71]

the whole system baffles me anyway. i had my first lap last week, got told too much endo to even attempt to remove and have a hysterectomy etc, 9 days on from the lap i'm in far more pain with the endo and feeling a bit angry at times as to why they didnt try to remove at least some of it, thankfully my next consultant app has come through for next week already so hopefully will have more answers then xx

[Sunflower846]

i had my first lap in november and have bn in much more pain since. I had both ovaries seperated from my bowel and a huge choc cyst removed from my right ovary, endo left between my womb n bowel and my right ovary has lots of little deposits but deep rooted, so they having me doing all this shitty hormorne treatment which i am stopping as cant take anymore of the side effects and that my quality of life since my lap is much worse. The pain i am experiencing everyday now is much worse than before and when im bak at my gynae in 2wks i want answers and something done. So sorry i just ranted on there but i totally dont get either why they cant remove it all. Hope ur ok xxx

[stevieflp]

Hi wp22. I totally sympathise with your view. I won't go into detail re my own journey, suffice to say I had endo affecting my ovaries, on the bowel, on the bladder, on the ligaments, on the uterus, completely stuck up recto / vaginal, on the diaphragm. Everything was stuck up and twisted out of it's normal position. My first consultant told me I was a 'complete mess'.

I have been endo pain free for 2 years and 3 months now following just the kind of surgery you are wondering about. I underwent a procedure called 'total radical excision'. This is where the whole lining of your peritoneum is excised away. This removes seen and unseen endo and fron the deeper layers. When it heals you have a clean new abdomen which is less likely to form adhesions than when patch work is done.

I think the real answer to your question is because there are not enough surgeons around who are skilled enough to perform what is quite gruelling surgery for the surgeon as it generally takes between 5 and 8 hours or longer. It is all done keyhole though so recovery is reasonably quick (between 4 - 8 weeks depending upon individual circumstances). You would think if should be the gold standard for advanced endo.

Like you are finding, drug treatment is only a temporary fix and does come with side effects. Once the drugs are stopped you will usually have to ask 'what's next' anyway or be back to square one within a few months. It can be useful in certain certain short-term circumstances.

Then there is laser surgery, (usually means the consultant is not skilled in excision surgery otherwise surely they would offer this superior procedure). What laser does is burns patches of endo off the surface. This causes scar tissue to form as it is a burn. It is a bit like cutting a week down from the surface. Often the roots will overtime just re-emerge elsewhere. Hence many ladies end up going back several month or, if lucky few years, later saying they think the endo is back. I have seen examples on here of surgeons saying "it can't be back because I removed it". If endo is only on the surface then it might well be satisfactory for some ladies, but generally it is deeper than that.

Many surgeons who say they do excision surgery do 'patch excision' which is what it says on the tin. Great it you do only have patches and they get them all. Trouble with endo is it can be unseen to the naked eye and it can be just below the surface. So again, ladies can be in the position if not all removed of going back for lap after lap for patches after patches to be removed over time.

For advanced stage 4 endo, removing patches might hit the jackpot and remove patches that just happen to be causing most of the pain, but you will still have endo. Same with hysterectomy - unless you just have it in your uterus, you will still have endo. Hysterectomy is generally only useful if you suffer from heavy monthly bleeding or other gynae conditions or have adenomyosis (endo in the uterine muscle rather than just on the outside) so it can be helpful for certain circumstances but not on its own if you have extensive endo.

I was also able to avoid a bowel resection because my surgeon was skilled enough to shave endo off the bowel rather than need to have a colorectal surgeon in tandem. He said a bowel resection is only necessary where endo has actually penetrated the bowel rather than having stuck everything up from the outside. He said in his extensive experience that was quite a rare ocurrence and is generally on the outside.

The operation that I had simply removed the endo and nothing else. I did not have to mess with my hormones, have a hysterectomy or bowel resection. I just can't understand why this does not become the standard treatment for advanced endo. But like I said, I believe it is because of the skill and gruelling dedication it takes to perform and there just are not the surgeons out there who do it.

[wp22]

Thanks for your replies ladies, its just utter madness why they just don't take all the endo out first go. I'm sure thousands of us just put our lives on hold while waiting for these operations, yes operations, not operation!!

Steve if I could afford it I would go for total radical like you but instead I have to have the patchwork stuff again because on HNS. I do though live near a hospital that do excision but they left the three patches inside and wonder why I still have the same pain in the same place, errrrr you didn't even attempt to remove those bits. I just hope and pray that they are going to remove them 2nd attempt and get rid of my pain (although don't suffer from pain too much but do get lots of symptoms) and make me fertile again,(different surgeon but 1st one coming in on op).

I'm going to have to push on day of surgery and explain it is most important for me to have endo removed, as he is more interested in taking my 3 fibroids out rather than endo. but I know for a fact endo is making me infertile. Before this endo s... I was very highly fertile and now I have endo and I am very highly unfertile. I'm so sad all I want is to get pregnant before my life dwindles away waiting and waiting for them to help me properly and then I will be old and have no chance. It does make you wonder if these male surgeons really do want to help us women or if it were men what a different story that would make X

[stevieflp]

Hi - I so feel for you. Have you ever heard of the theory of estrogen dominance? This is something that I have recently been looking into. It seems that forward thinking medics (not mainstream medics who are trained according to what pharmaceutical companies offer) but those thinking outside of the box - believe that many female conditions (and male for that matter) are caused by estrogen dominance.

This does not meant necessarily that a person has too high estrogen but that their estrogen is high compared to progesterone. Books I have read (Dr E Platt - "The Miracle of Bio-identical hormones" and Dr M Lam "Estrogen dominance" rationalise that conditions fybromyalgia, fybroids, endo, infertility due to low progesterone, hormonal migranes, post-natal depression (caused by a sudden drop in progesterone), breast, ovarian and uterine cancers, cervical erosions, prolactinomas, PMT and peri-menopausal symptoms - may be the result of low /a drop in progesterone compared to a higher estrogen, as progesterone balances out the effects of estrogen.

It certainly seems that way for myself as I had a cervical erosion at 22, prolactinoma at 24 (hormone producing tumour on the anterior pituitary gland) and then advanced stage 4 endo probably progressively since I was 15.

Hormones control virtually every function in the body, not just fertility and, apparently we have progesterone receptors throughout our body and these will be stronger in certain places in different people, hence the same problem will produce different symptoms depending upon where the receptors are strong with some getting endo, some getting fybroids etc. I am not a medical person but it certainly resonated with me.

Doctors tend to prescribe more estrogen for HRT but these forward thinking medics believe it is the opposite and more progesterone is really the answer. We continue to make estrogen even after menopause (even though it is vastly reduced) but progesterone ceases and so you can still be estrogen dominant even after menopause.

Let's hope the time will come where these endo ops will not be necessary as the medical profession will be focussed on prevention and a better understanding of how these hormones work, rather than how things currently are where you don't get any help until way down the line - and even then, that help varies so widely.

At least if you are armed with information about excision surgery and you feel you want as much removed as possible, then that does give you some leverage when consulting. If you are not satisfied then you can ask to be referred to one of the other endo centres of excellence. Even if it means travelling rather than going local, it is worth it.

Sounds like they are brining a second surgeon in this time who might be more specialist at excision. All very best wishes to you and I hope you get the help that you are seeking.

Love x

[vickylou71 in reply to stevieflp]

Hi is there any ways inwhich to increase progeterome without more drugs?thanks

[wp22]

Hi I am not sure if you can increase progesterone without unnatural help. Norethisterone is a good way and cerazettepill is ok. You can buy progesterone cream and you rub this into your lower belly. Hope this has helped you x