Follow on from my previous post about not relying on Drs and diagnosis’s and suppressing your own endo!

[Heloo85]

So I had my follow-up brought forward.

So back story in 2016 I had extensive surgery! It was my first and it was major surgery because I never even realised I had Endo! My symptoms were never cyclic, they was constant! They never waxed, nor waned.

So following the sepsis I was told multiple things while Drs decided what to do...... I was put on Zoladex and told to go away... To call back if I had problems... Well I have.....

So my consultant talked down how bad I actually am and now been put forward for major, major surgery! Yep! Triple major surgery.

Once again I will be in the hands of 3 surgeons, I am having a total hysterectomy, both ovaries gone, part of my bowel, my one and only fallopian, cervix, possibly part of my vagina, I will be left with stents in both kidneys but first they will have to separate all my organs, remove thick dense adhesions, and remove all the nodules of Endo! It will be the most extensive surgery my consultant has performed and comes with massive risks! The reason being, is they cannot leave anything in! This will be my second and last operation as they’re sure they’ll never get in again!

Stop looking for Drs to be honest! They won’t! They will fob you off until you end up like me! Fit for bin! If you’re young, try suppress it...... Because believe me, you don’t want to end up like me facing major, major surgery with 3 surgeons!

[Hidden]

Hi Heloo,I've read several of your posts and your descriptions of how hard the journey has been for you. I wish this hadn't been so very difficult, long, and painful for you.

At the same time, I'm glad to hear that you're finally being listened to, and you will be given proper attention for a surgery by surgeons with the right areas of expertise. I'm guessing you don't "want" the surgery, but you do want to live. So, I'm glad that you're being given a chance to have a procedure that should let you have a higher quality of life than otherwise.

Do you know yet when your surgery will be?

Best thoughts to you!

[Heloo85 in reply to Hidden]

It’ll take months to organise 3 surgeons and a theatre slot long enough! My last ‘priority’ aka major surgery took 12 months!

To be honest, I’m shitting myself! My last one was bad enough! I spent 2 days strapped to a hospital bed with air socks, a pelvic drain one side, and a catheter bag full of blood on the other! I had masses amounts of surgery/post surgical complications! This is going to be twice the surgery!

I know you’re in a very similar boat to me, except I’m assuming you got the fob off first, then the radical surgery! I said to my consultant today this should’ve been done 4 years ago! I’m now complicated because they put my fertility above my health now facing the most daunting task, when quite frankly I’m at my weakest I’ve ever been! They have told me I can die! Oh great!

As I said in my previous post, I wish I suspected Endometriosis from the start! I actually had a school friend who had surgery after surgery after surgery, suppressed with treatment in between from a very young age, who after failed IVF, somehow managed to get on with her life? Obviously gutting for her, as her and her husband really wanted kids! But lives a pain free life. I however didn’t suspect as didn’t have classical signs, didn’t use anything other than a copper coil, is now paying the price!

The NHS is shot! It’s on its knees! There’s 8k gyneas, and 1.5 million women with Endo! This is only going to get worse! I would say if anyone suspects Endo, runs in family, whatever, suppress cycles!

Funny enough though I come from a family of large families! I was the only one who chose not to have kids! I have no confirmed Endo in my family, whatsoever!

Xx

[joey81]

Oh lovely... im so sorry to hear about what youve been through... its so traunatic to just read, how are you still standing?! You are so veey strong. I was recently diagnosed with endo and adenomyosis via an mri (stage 3) with adhesions near bladder and small intestine but i have no pain at all. Just random pulls or sensations. I desperately want kids as i am 40. Im googling daily but cant find much on how to reduce the endo growth. There is alot about managing symptoms but not the actual endo growth. Do you have any advise as to what i can do before ut gets really bad? I dont want to suppress my cycles until i have a baby some day.

[77yellow]

Hi,I hear you when you say you are "shitting yourself". I am also on the urgent list awaiting complex surgery involving 3 surgeons (gynae, colorectal and urology). Im worried about the extensive surgery, worried about the endo and damage to my bowel getting worse and worried about the long term effects of prostap.

I have been on the waiting list for surgery for almost 9 months. On prostap to suppress symptoms, although I'm now not finding it so effective. No follow-up appointments with consultant planned just expected to sit and wait quietly while suffering. Don't get me wrong I chase up with consultants secretary and waiting list manager every few weeks but nothing seems to be helping. GP is fab and written to the consultant 6 weeks ago and no response.

I've had to change my job, struggling to function on a daily basis, struggling to look after my family and myself and all you get when chasing it is there's people worse than you! Well there shouldn't be anyone waiting and suffering like this!

I've seen your other posts and cannot believe how much you've been messed around. Something has got to change for us all soon, I hope 🙏

Hope your wait isn't too long xx