Having a real bad day! TPPE

Hi ladies,

I'm on here to have a moan because I feel down. Some of you might know that I had radical excision 2 months ago. I had endo removed from my bladder, ureters, uterosacral ligaments, Fallopian tube. My ovary was adhered to ovarian fossa which was the result of a previous surgery to excise an endometrioma cyst which had fused to the pelvic wall.

On top of all this I decided to pay for total pelvic peritoneal excision. It was a big decision but I felt confident that this could reduce my chances of endo coming back in future by removing all microscopic disease in the peritoneal lining.

It cost me £7000 and my health insurance coughed up the rest.

The recovery was much worse than a lot of women have said on here. For a month I felt incapacitated at times. I also felt I was having some sort of rectal prolapse...the pressure was so intense. On a positive note my skin cleared up , hair stopped falling out and I really did feel endo free.

1st period was horrendous but I was told to expect that. Then I had a horrible ovulation. My PMS has been so intense and I am now on cycle 2. This period is also very painful. The pain is worse than before the surgery. I am 8 weeks post op . My ovaries feel like they are been squeezed. The cramping is horrible, my lower back pain is still there.

I'm so down because I really hoped that TPE was the answer. How can endo be taking over again so quickly. I feel so down that I'm slipping off the wagon with a health lifestyle, putting on weight again. I'm snappy with my family. They all thought that this big op would sort things out and clearly it's not.

I'm also so desperate to start a family but no chance of natural conception due to male infertility . We are waiting for IVF and I just don't know if I can do this anymore. I just want to go on the pill now and be done with this pain for a while. I need a break!

Please can anyone offer support/advice?

4 Replies

  • Hi my heart really goes out to you it really does I suppose we all are different and surgery is never a guarentee but I agree I think going in for TPE you do expect it to be the best chance of beating endo. The only positive I can offer is that you really have had an amazing surgeon so I just can't imagine you would be any better if you had had someone else as your surgeon. I'm 4 months post op & am having to consider a hyst for possible adeno and am hoping to have a colonoscopy soon as my bowel symptoms were not resolved by my excision so it's a process of elimination I suppose to work out what is causing each set of symptoms and pains. Have you discussed how you are feeling with your consultant? I think it makes sense to go on the pill to give your ovaries a rest post op too - apparently many experts in america do this so might be worth getting GP appoint & taking it from there :-) Xxx

  • HI I am 5 months post opp and really starting to feel a bit better now. You have had a lot of surgery and I no from my experience it takes longer to heal than you think. I would recommend the pill in the short term just until everything settles down.

  • I don't think endo is taking over, I do think that this is very early in the healing process.

    I didn't have TPPE but a laparotomy, two cysts out, one ovary and tube and numerous lesions of endo.... and I wasn't op pain free for pushing 5 months before I was even able to pick up a toddler without squealing in pain. My op was July, by X-mas things had improved a great deal, and within weeks after that no pains from the op at all.

    I did post an article on here that appeared in the daily mail that stated the body can take up to two years to heal from a surgery, though most of that you won't actually notice in any way.

    It's still 8 weeks on from major surgery. You shouldn't be attending gym for at least 10 weeks after a basic lap op, so really must be patient and allow your poor battered tummy a chance to show you how much better it will be once the reaction to the surgery has properly calmed down. There is no reason why you can't be taking BC pills or norethisterone etc in the mean time to stop you having periods and cramping the wounds while they heal, and further more any steps you can take to stop your periods now will help reduce chances of new endo spreading. It certainly won't be the endo back so soon, but remember that everywhere that you did have endo now has a wound where the endo was attacked so the pain feeling will be similar till the healing is properly over with and fresh underlying cells have grown and grown so your wounds are properly healed.

    To give you an example - I had a badly burned leg some years ago, that burn was still raw and sore and needing dressings for months and months and months, because the burn had been a deep one. It was a few years before the skin evened off to be the same height cross the leg and not dipping right in where the wound had been. And over 15 years for the scarring to all but disappear and that was with me avoiding sunlight on the scar. It is now barely noticeable.

    Endo is burned back with diathermy or lasers to a depth of bout 3 mm, which might not seem much but that is a lot of layers of tissue to regrow gradually from the bottom of the wound to the surface and it does need patience to get there.

    Taking a break from periods is very good idea after major surgery to give you a few months to get passed the worst of it, by which time you will have a much better idea of how successful the op has been.

  • Thank you everyone. I must say talking to you all does really help. I feel supported in ways that no one who has experienced endo is able to help. It's such a mind game. The fact you cannot see or have a scan to reassure you about what's going on causes my mind to run wild. I start catastrophising about this wild and fast growing disease eating away at my insides. Crazy I know!

    It also doesn't help that we all respond differently to treatment and experience symptoms differently. I wish I was one of those ladies who noticed immediate relief but sign it's not meant to be and as you say I've got to learn to be patient with my poor body.

    Glad I wrote on here tonight


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