Operation planned

[Vix72]

I don’t comment a lot but I read many of your messages and questions and feel for you all. It’s a horrible journey to be on and I’ve previously been told I had IBS, low pain threshold (definitely not) and imaginary pain. It actually took a nurse to say to me when I came back for another suspected urine infection. ‘I don’t think it’s your bladder, let’s get a stool sample and if it’s not that it’s definitely gyno related’ - stool sample came back clear and got referred to a gyno who diagnosed me within a few minutes, severe endo and anemeniois (cant spell it, but all inside my womb). I had to have surgery to remove endo everywhere, ended up with a stent as my euretha was damaged- thankfully my bowel was ok even though lots of endo attacked. They had to get my appendix cleared and remove one ovary. This was three years ago. Been having a mirena could since then but the pain is back as before. I have a few days ago been offered an operation on 22 August so have said yes. Now isolating at home and getting worried. Keyhole hysterectomy and removal of endometriosis again and straight onto HRT. I’m excited, nervous and scared at the same time. I’m hoping I can finally get this all under control ☺️ Good luck everyone and push for appointments, exaggerate the pain if need be (I didn’t need to, when they cramp started I almost fainted). Listen to your body - only you know when something isn’t right. Maybe take someone with you who can help Push for help as it’s hard on your own - you forget to ask questions and don’t dare challenging. Xx

[AtomicHair]

Good luck Vix72, hope this operation gives you relief finally.

[Vix72 in reply to AtomicHair]

Fingers crossed 😀

[AllthatGlitters]

Hope your op goes well & yeah we certainly know our bodies better than any doctors and know within ourselves when something is wrong x

[Vix72 in reply to AllthatGlitters]

Absolutely- it’s a relief when someone listens ❤️

[plotments]

That's brilliant news so glad your getting your op and I hope it works for you

I would imagine being in isolation waiting for your op will make you quite anxious with lots of thoughts and emotions all over the place. Try to stay positive and not over think things writing your thoughts and worries down can be a productive way of coping with your emotions and helps you keep things in perspective.

Feel free to message me if you ever need a chat and your right we don't challenge them enough!!

Take care xx

[Vix72 in reply to plotments]

Thank you so much! I’ll try to stay positive. Got my 16 year old to keep me on my toes 😂❤️

[Anastasia17]

I completely agree with all your comments: Be pushy!, fight back, inform yourself. I was told by stupid GP and middle aged nurse practitioner in February and March 2019 at the very beginning of my journey when I was so very lost, confused, in a lot of pain in front of the GP with a flare since the day before at work, that : 'for endometriosis, NOTHING CAN BE DONE, for interstitial cystitys, NOTHING CAN BE DONE, for the perimenopause, VERY LITTLE CAN BE DONE AS YOU HAVE A HISTORY OF BREAST CANCER'. Here are some antidepressants. Neither wrote their nasty comments in my medical records! So, I have put a complaint letter containing 51 questions since January... i am still waiting for, at least, an acknowledgement of my letter (sent by special delivery). I organised my own care, put in place a cytoscopy (much to the horror of a middle aged lady GP!), genetic screening for breast cancer, mental health referral for the trauma that their words have caused me long term, referral to another hospital for a 2nd opinion.

I am now recovering from this 2nd opinion, hysteroscopy and lap with excision.

Let me tell you all, I am so glad that, despite my very foggy brain for moths at the time, I requested this 2nd opinion because the consultant removed endo on and around the ureter via a ureterolysis. Endo on or around the ureter is a silent and painless killer for kidneys, if you have 2 it's nearly ok, but if you have only 1... Good luck!

He also excised endo around the bowels, which have caused me nasty IBS symptoms when I kept emptying myself due to food reactions, and feeling completely drained. I did put myself on a strict exclusion anti inflammatory diet since May 2019 that has helped me to reduce and control the pain and the symptoms, but it doesn't solve everything.

The only advice I would give, however, is even when you are pushing for help, for referrals, always remain polite. You can be firm. Take someone to attend the GPs appointments, they appear to go through an immediate personality change!

It may not solve all of my problems, but it will help in the long terms and I am genuinely grateful to have managed to get there despite dismissive GPs who have blocked my medical care for the past 10 years, the Covid19.

I am now hoping to receive the treatment that I should have receive after my first investigation lap 2 years ago, 2 years takes its toll on anyone's mental health when you feel completely abandoned within a system that locks its door every time you ask for help. It's an awful feeling, an awful situation and I would not wish my worse enemy to go through what they put me through.

So, yes, fight your corner, fight for your health, fight for your family. But be kind to yourself and others. x

[Vix72 in reply to Anastasia17]

Thank you for sharing your story. It’s unbelievable the hoops we have to jump through 😌

[Anastasia17 in reply to Vix72]

Maybe it should be part of the Olympics?

[Vix72 in reply to Anastasia17]

😂😂😂🥰

[Whoisthis in reply to Anastasia17]

😂😂😂

[Whoisthis in reply to Anastasia17]

On your marks, set, go.....

Let’s see who can get specialist wide excision surgery the fastest, avoiding the coil corner, the cancer drug injections and the “in your head “ hurdles, past the 3 years of “all clear” scans! Genius I may write a book one day and I’m stealing that for the title ... endometriosis the new Olympic displine.

[Vix72 in reply to Whoisthis]

Love it 😍 🤣🤣🤣

[Anastasia17 in reply to Whoisthis]

You forgot the 'There's Nothing to be done for endometriosis, nor for interstitial cystitis' from GP and nurse practitioner. 🙄

[Anastasia17 in reply to Whoisthis]

🤣⛷️🏄‍♀️🏊‍♀️⛹️‍♀️🚴‍♀️🏋️‍♀️

Are you aware that animals do get endo and vets know about it and are trained? Maybe we should go and see a vet instead? 🤔

[Whoisthis in reply to Anastasia17]

Such good advice, I took my husband to one appointment and it was unbelievable how the female GP changed completely. It actually made me bloody fuming 😤 why she will sit up and explain using proper medical terms to my husband who btw is an engineer and yet kept using idiot terms with me, kept using laser and cutting out instead of ablation and excision.. he walks in and all of a sudden she knows the terms 🙄

[Vix72 in reply to Whoisthis]

OMG- that’s dreadful. It shows how important it is to have someone with you. A friend, sibling, parent, partner whoever you feel comfortable with ❤️

[Anastasia17 in reply to Whoisthis]

Yes, it's unbelievable and incredible how their manners and dismissive words disappear! With a male GP, he actually looked no longer comfortable when my hubby was in attendance.

[Anastasia17 in reply to Anastasia17]

This is how I managed to get all my referrals done with hubby in attendance and she then started to moan that it was taking too long! To which I replied 'that's for all the years when nothing has been done! Couac! No protest! 😳