Just need to talk

Hello! I am very new to this!! Having read through a lot of posts on here I would consider myself a little bit luckier than most!!

I have always had painful periods, something which I just considered to be normal. Then out of the blue last October I had a UTI, very unusual for me!! I took my antibiotics and felt better but then 5 days later I had pain on my left side which I can only describe as something needing to pop!! My GP sent me for a scan which showed a very swollen left kidney. I was referred to the urologist who said it was likely something I had been born with that may now be causing a problem. I had a CT scan and a renogram over Christmas and the new year. Basically my left ureter was blocked and my left kidney was failing!! I was then referred to a gynaecologist coz the CT picked up a mass on my left ovary! I was reassured all the way and was quickly booked for surgery.

So I had a laparoscopy on Feb 18th. They also did a cystoscopy. I have very extensive endometriosis on the left side which has squashed the ureter. They took out my left ovary and tube which had a large endometrioma. It's on my bowel and there is also some on the right side.

The ureter has been stented to see if any kidney function can be salvaged but with only 9% function before the surgery it's not likely. I have started a 6 month course of zoladex and just had my 2nd jab last week.

The reason why I am posting is this has been a complete shock to me and I am now coming to terms with living with a chronic condition when I had always considered myself fit and well!! I don't really know what to do! I am taking some time out from my job and have a fabulous holiday to look forward to this year. I am trying to stay positive but have to succumb to pain every day now and night sweats like I would never have imagined!!

I have checked out the endometriosis uk website to look for a support group near me but there isn't one. I am a talker so this is my next best thing and when I next see the gynae team am gonna ask what local support is available if any.

I have fabulous friends and family but it's difficult for them to understand sometimes.

So that's me and this is, I fear, just the start of my journey.

8 Replies

  • Hey!

    It seems like you have had an awful shock with your diagnosis, alot to take in!

    I was on zoladex for 9 months and I can completely understand what you are going through.

    I kept gel ice packs in the freezer to put on my head during the night. I was sick most mornings and certain smells would also make me sick. Unfortunately over time you will get used to it but you will need to work out what works ok for you. Have they put you on HRT aswell?

    Take care and best wishes!

  • Thanks for responding! It's great to know I have people who understand what I'm going through!! I have my gel ice packs on stand by!!

    Not on HRT..... yet!

  • I would defo speak to your GP or consultant about HRT. I am a little concerned as to why they haven't given it to you as my consultant told me I must take HRT to reduce the risk of bone density reduction??

    Always here to talk xx

  • Hi, welcome to the group! I can relate to your feelings, I had quite a traumatic pre- diagnosis event. I'm so sorry this has happened to you. From my experience it takes a while! I was trying to come to terms with a chronic diagnosis, how it was going to affect me in future, and mentally 'process' the trauma of emergency surgery which I hadn't had time to mentally prepare for.

    The problem is you get pushed along a decision process in time critical situations, and your poor old brain doesn't have time to process the feelings and emotions that it needs to before things are 'done' to you!

    It's good you're a talker... This really helps the brain get on with processing, even if you have to revisit the discussion several times- let it all out. I know it's hard but try and stay positive, you will fall off the wagon, (who wouldn't? this stuff is hard to cope with,) but hopefully only for short bursts. You will surprise yourself in the long run, how strong you really are.

    I heard a good quote "women are like tea bags.....you realise how strong they are when they're in hot water" x

  • That's very true what you say about being pushed along a decision process!!

    I'm still trying to get my head around it all!! I have realised I have a lot of questions which haven't been answered so today I am being proactive to find the answers!

    Thanks for responding!

  • I'm also recently diagnosed- October 2015. It wasn't really a shock I had endo because I suspected it but what I found hard was recovery from laparoscopy and the fear that my future was going to be endless operations, pain and medication. I started a blog to vent my feelings and to raise awareness of endo angelpiesite.wordpress.com

    I'm currently going through IVF but if it doesn't work I'll be back to square one 😔 Rubbish isn't it?!

    I definitely found it helpful chatting on here 😊 Xx

  • Check out this site for some handy hints and tips - you are NOT alone. I'm here anytime if you need to talk Hun xx


  • Similar to yourself with a op and now on prostat injections to shut down my hormones to be tested for the next six months how i will cope before a hysterectomy in sept ... hot sweets beginning is my first side effect. I did use star flower and sage leaf from the holland and barret when i had my Fallopian tube out last year. They helped anonymously hope this helps x

You may also like...