Questions: Total pelvic peritoneal excision surgery

[Summer_3]

I am just wondering if any of you ladies have had total pelvic peritoneal excision surgery?

How likely is endometriosis to grow back after and roughly in what timescale?

Also what is the time scale to recovery after the surgery?

Thank you x

[amelialloyd]

Hi! I had TPPE 6 weeks ago at Spire Elland hospital.

My surgeon said that it is very unlikely that endometriosis will grow back in the pelvis (where it has been extracted from), but that it might grow outside that area in the groin but as there aren’t any organs to stick to it should not cause any pain or fertility issues ect. However, It may also grow where it does not currently exist in the pelvis.

If you want any info about my experience with the surgeon in Elland or TPPE in general please feel free to message me.

Amelia

[Summer_3 in reply to amelialloyd]

Thank you! I will message you as I am booked in also at spire Elland hospital to have the surgery on the 24th November x

[lisalovescake in reply to amelialloyd]

Hi Amelia,

I saw your reply to this and am wanting to know about this surgery if you could fill me in a little please? I am waiting for laparoscopy to diagnose Endo. My Mum had it and all signs and symptoms pointing to that. Currently have 7cm endometriosis cyst on ovary which they said they will remove and may have to remove ovary with it I don't have any children yet, I am 34. Was trying when I realised nothing was happening and began to get painful periods and bloating. Is that surgery to help with fertility? Thank you so much x

[JOSANDY40]

Yes it is very lightly. After recovering from the opp 2 mths. You will be very lucky to get 10 mths! Once Endo has set up independent Endo , each Endo will spread and start new pockets of Endo. Some Endo stays within the pelvis and fuelled by ovary hormones, but in my case the disease has become no longer requiring what specialists say it needs. Not many people have it like this but certainly the number of woman with the standard Endo is growing. X

[Summer_3 in reply to JOSANDY40]

I have read things where people say it works wonders, it’s like a cure and pain free for years from it. Would you mind pm about your history and experience with endometriosis? X

[JOSANDY40 in reply to Summer_3]

My disease had migrated to lungs, stomach by 26 yrs. My surgeon at that point saved my life and carried out privately a operation not available on the NHS in the 80's and managed to keep my bowel, bladder and reproductive system. It was a long opp. Without laser surgery as in those days they were not as good as they are now. Recovery was slow, my abilities difficult, terrible pain with raised temperature when doing anything physical. So much had been stripped down and moved, also a section of bowel was removed. My left ovary was discovered in my buttock, the right still joined by a twisted tube but over to the left with a cyst. the uterus was back squashed nearer the spine. The pouch of Douglas was full of adhesions and fixed, the whole of the pelvic area from stomach to groin was distorted. He said it was the worst he had ever seen. I have wondered whether playing on a experimental farm as a child or swimming near the out flow of a water plant has anything to do with my extreme Endo. It appears that bleach, plastics, polystyrene, PCBs do have a part in the Endo as monkeys were fed these and did get Endo.

[Summer_3]

Oh my!! Your case sounds terrible!! So did you have excision surgery and how long till your endo grew again? I have been told after excision surgery it won’t grow back in that place again but other places. As the only place my endo hadn’t grown in my abdomen is on my ovaries and womb, I am worried how long till it could occur. I had to have the ligaments attached to my uterus fully removed due to them being full of endometriosis.

Sending my thoughts to you and hoping you have some relief! X

[JOSANDY40]

Well I haven't found that to be true! It might setup next door or the same place if they miss a bit, but there will be scare tissue in its place. Once this disease has migrated. It sets up new self-contained disease spots which bleed when the body's immune function doesn't do its job properly. I found with my major surgery that at first my long incision healed slowly but well then some months later it started to get thicker and finally after 5 years started to disappear. My body appears to over react to all sorts of things. A simple cold will last a long time. A drug that I,'ve taken well, the body decides it doesn't like! I had Endo in my lungs for several years and was pretty ill then it seemed to get better there and the pain the bowel got worse. It's never gone back to the lungs, I had no operations to help my lungs! Generally when I tried to do what others do it was worse. You have to help your immune system, give it rest/sleep, don't over do it, Easy things to digest, no stress, plenty of you time! My best Joy x