Stage 4 endometriosis/ surgery

[Love_koffy]

Hi guys... Anyone here who have stage 4 endomteriosis.. And have had their surgery please can you let me know of your experience...

I have 7cm Endo penetrating my bowels but all the options I've been given pose a risk of damage to my bowels..

I also have 8cm and 5cm cyst in my ovaries and have been told I will lose some ovary during surgery, but if I have a low ovarian reserve they will only drain my cysts and not remove them completely..

Either way I won't be pain free, and I look at some Endo remaining...

I been on prostap menopause since march 2019 and it actually has worked wonders for me, except for the past few days I've gone back to agony..

I was also given kliovance hrt but it has norethisterone and its making my pains 100 times worse, so I've got a different one now called femoston.

What have your experiences been like with hrt, I know different ones will help and affect everyone differently but I just wanted to know I weren't alone..

Still waiting another 6 months for surgery, and I was put on the list as urgent in march 2019 being told its a 9 month waiting list...

😔

[Sweetyassi]

Hi Love-koffy,

Sorry to hear that you are suffering with endo.

I've had stage 4 endo. I have been on Femoston and on Tibolone HRT. For me her is a big no no. It made my endo pains worse and kick started my adhesion pains.

Keep ringing the hospital at least once a week asking if theres any cancellation. That's what I did in the past.

Sweety

[Madridmeg]

Hi, sorry to hear you are struggling and have such a long wait for surgery.

I have stage 4, but decided against the chemically-induced menopause and hrt because I do really poorly on all types of hormone treatments. (I tried multiple types of birth control and was vomiting upwards of 5 times per day.) For me, so far what has worked is excision surgery and pain management thereafter.

For pain I am on prescription tramadol on an as-needed basis and PT. I go to a physical therapist once a month and he recommended an at home method for helping "break up" scar tissue and adhesion post-surgery (i.e. well after you have healed). Apply your heated blanket/hot water bottle to the pelvic area for a few minutes until warm. With your hands then deeply massage the areas around your hip bones, working towards the centre. I don't do it every day, but it has helped on particularly rough pain days.

Hope you get some relief soon!