Endometriosis UK
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Total Peritoneal Excision - How long is it meant to last??

Hi ladies,

I'm booked to have total peritoneal excision with a certain specialist Dr is Yorkshire. My husband and i are using all pir savings to pay for this and I'm just having a bit of a freak out about whether we are doing the right thing!! Have any of you ladies had this surgery and if so how have you been since having it and also how long is it meant to last for? Will the endo grow back?

13 Replies
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There is the risk that your endo could reoccur even after this surgery. Do you mind me asking why you are paying privately? Xxx

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Because I feel really at a loss as what to do and this doctor seems to have the answers. Have you had any surgery at All??

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I've had two laparoscopies within a BSGE centre, my endo came back after both. I'm considering a hysterectomy and BSO now. Xxx

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How long did it take for the endo to come ba m? Did you get any relief from your surgeries? Did you know the endo had come back because your symptoms returned?

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I had my first surgery April 2015 and by Christmas of that year my endo was back. Had second surgery August 2016, endo reoccurred by March 2017. All while trying Cerazette, Mirena. Only thing that seems to work for me is Prostap. Symptoms returning indicated endo reoccurrence and scans/lap confirmed xxx

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I had this surgery 4 months ago by the specialist in Yorkshire but also had a hysterectomy at the same time. I did have a lot of issues with my lower bowel post surgery which was probably caused by having to have bowel prep before surgery and the antibiotics I had to take for a week, as well as endo being excised from everything including bowel and rectum. Basically I obviously have a sensitive lower bowel which caused me no end of toilet trips and ended up with passing just pus and mucus about 25 times a day at worst. Ended up going to see bowel specialist and had to have a CT scan with dye and flexible sigmoidoscopy, as well as biopsies which al came back clear.

Apart from that I have not had endo symptoms since, but do still get tired due to the healing process and recovery after 7.5 hour op. On a positive note, nothing showed up endo wise on CT scan, just had 3cm cyst on left ovary which is normal.

I am not trying to put you off the surgery but it would have been nice to have been told about the possible after affects to the bowel. I pretty much had 9 weeks of bowel hell. I am still under colorectal consultant as my bowels although much better are still not back to normal. Feel free to PM me if you need any more info.

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Hi!

Thank you so much for replying to me. Sorry to hear you had so many complications following the surgery

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Hi ladies,

I have been having issues with my bowl since my lap, I haven't been able to eat for weeks because of the pain, could the surgery of coursed this?

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There is good treatment available for endo on the NHS - have you been seen at a bsge centre? I think there are a couple of NHS docs offering TPE but at the moment the jury seems to be out on it - it's not been proven that the peritoneum regrows (although it is claimed that it does, there's no actual evidence of this) and it's uncertain whether or not ovarian suspension actually makes any difference or is safe (the docs from UCLH have done some studies on this).

List of bsge centres is here: bsge.org.uk/centre/

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Yeah I was seen at a BSGE clinic and had a diagnostic lap in January. There advice was to have a family and then return for surgery following. I went to the private specialist for a second opinion and their opinions suffer hence me considering TPE now.

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I know what I personally would do but it really depends on so many things. It does seem to me to be a hugely drastic surgery if the bsge centre are saying not to have surgery yet (having had 2 surgeries at a bsge centre myself).

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The advice from the BSGE centre was based on the fact that I wasn't really suffering many symptoms of endo at the time but since then symptoms hace increased and it's affecting me more and more.

If you don't mind me asking were your two surgeries excision?

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I'd had a diagnostic lap elsewhere, so the first surgery was to fully map out the disease as they knew at that point that I had 4 large lesions and the disease was very severe. They drained the cysts on my ovaries and I also had excision of bladder endo. I then had my main surgery earlier this year where I had excision of all the endo from my bowel and ureter. I also had a hysterectomy and my fallopian tubes and ovaries were removed, but I was extremely unwell, my disease was very severe and we didn't want more children. They did say that if I had wanted more, they would have carried out a more conservative surgery to reduce pain and help me get pregnant.

Have you got back in touch with the bsge centre to let them know you're getting worse?

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