Op for Frozen Pelvis (stage 5 Endo)

[Liseann]

IM SORRY ABOUT THE LENGTH OF THIS POST, ITS LIKE A BLOODY NOVEL. SORRY

What a nightmare, 50 next year & dealt with this since I was 16. I'm so sick of Endo. After Ectopics, miscarriages, so many laparoscopies I've lost count and a few laparotomy & finally full hysterectomy, kept the 1 remaining ovary to stop early menopause (i was only 38) 10+ years ago I'm faced with another op, the mother of all ops, it seems. Gynie, Bowel and Urologist consultant needed in the surgical room because its that bad. After having a MRI w contrast, I'm faced with sorting this little lot out! Ps, Not sure I can trust my surgeon, he thinks I've got a right fallopian tube after a full hysterectomy without salpingo-oophorectomy. Maybe he should do a "women's reproductive organs & what is removed during a full hysterectomy without salpingo-oophorectomy" catch up course!"

Worried about it all tbh, wondering if anyone would think possible Cancer Cells with regards to the mass shaped non fallopian tube and the Cyst with Septation even though there's no sign of components or restricted diffusion.

Cyst: 7.3 x 6.5 x 6 cm right pelvis with fine internal septation. No solid components or restricted diffusion in the cyst. The wall of the cyst measures about 2 to 3 mm in thickness with

mild enhancement with contrast. No enhancing solid components.

Posteroinferior to cyst, another separate cystic locule 3.7 x 2.7 x 2 cm with a haemorrhagic component..

There is a tubular fluid filled structure

inferior to the cystic mass, may represent a hydrosalpinx in the residual right fallopian tube.

The sigmoid closely adherent to the cyst.Post hysterectomy and left salpingo-oophorectomy status.

There is also adhesion between the vaginal vault_ and upper_rectum / rectosigmoid.

14 mm cyst in the left adnexal region.

Urinary bladder appears partially distended

Thanks

Lise

[BloomingMarvellous]

Oh Lordy

You have truly got a lot to deal with. Heart hugs.

There is a small increased risk of cancerous cells with the endo but other factors like BRACA 1&2 and other genetics play a far more significant role. No doubt they will test via biopsy to be clear and reassure you otherwise. Ca125 readings will be seriously off kilter because it also shifts to greater or lesser extent with many of us with the endo so no point really getting worried on the basis of any of those as an indicator.

Realise none of this will be soothing to your direct worries over cancer. Best course is to deal with it head on with the medics as your other major concern. Realistic likelihood without direct biopsy and genetic testing is difficult to calculate and underlines it is only ever a number, a risk factor. Talk it through with your medics and I have found the Macmillian Trust phone line immensely helpful in supporting me when I had these similar concerns.

[Liseann in reply to BloomingMarvellous]

Thank you so much. Its just been one health worry after another. I have Rheumatoid Arthritis, recurring Kidney Stones & started getting seizures which has damaged my frontal lobe and now having to deal with Endo again...gets to you. Haven't been able to work for 5 years, I've always worked, I hate it. We lost our house because of it, kids and I were homeless... My Consultant called, well his Secretary did, I have a call with him on Thursday, which I thought was quick but, like you say, whatever will have to be faced head on and it's not as if I'm not used to it already! Thanks again. Lise x

[BloomingMarvellous in reply to Liseann]

Awwww , I hope you get all the care and comfort you need as soon as . Really rubbish situation you find yourself in and I can’t even begin to imagine the stress.

[Liseann in reply to BloomingMarvellous]

Well, finally I've been put on urgent list for all treatment, I will have Urologise, Gynie and Bowel surgeon in surgery. I've been told it's very high risk due to the extent o Endo and adhesion. If I come through, chances are Stoma and Cathetar. Removal of the only reproductive thing left, right Ovary. Obviously I'll go straight on HRT. I'm having to cancel a Rotary Cuff repair that's booked for 24th May, due to Epilepsy and having a seizure during the emergency surgery last Aug, I have to lave 4 weeks in-between anesthesia. As this is priority I'll have to hold off but at least it's being done, no date yet but defo in next 3 weeks!

[BloomingMarvellous]

That’s huge. I hope you do really well with all the risks and recovery. Hope you have some support ready to step up xxx

[Liseann in reply to BloomingMarvellous]

I did have to involve PALS, however I didn't even talk to them, I left a voicemail and the next day I get a call to book pre admission app, which I had yesterday. To just leave a message and have it dealt with, it makes you realise how much they have messed up. I know it's huge op and I'd be lying if I said I wasn't nervous but I can't live like this anymore, I want my life back, to go back to work, to enjoy my kids again. Husband is aware, he still very wary of me having it but understands why, he's just worried.....I did joke that at least it would be quieter if I weren't here...he didn't find it funny. My crap sense of humour- I use humour as a coping mechanism. Thanks for your reply xx

[BloomingMarvellous in reply to Liseann]

we all need a spot of gallows humour to handle this rubbish no ? It’s hard when you have to kick for basic good practice. However necessary this is or competent the actual team is the rest can leave you feeling extra vulnerable.