Diagnoised with endometriosis 2 months ago, already had an operation and awaiting my second. .... advice welcome please :0)

Hi Everyone,

I am totally new to this site after only recently being diagnoised with Endometriosis.

My endo is apparently severe as its covering everything on my left hand side. I had a Laparoscopy on 25 July and have a hospital appointment on 29 October to have a sigmoidoscopy.

I have my second operation booked in for 10 December, with my consultant and a bowl surgeon, my consultant believes that the endo may have gone through my bowl and my bladder. If this is the case I will wake up after my op with a temporary colostomy bag and catheter for 6 weeks.....this terrifies the hell out of me!!!

This has all come as a massive blow to me, as I have been having no pain except heavy periods which I thought was normal. I started getting some pain on my left hand side, which was investigated by having an internal scan. The scan showed that i had a polyp in my womb, my tubes are blocked, I had a cyst in my ovary, I also have hydrosalpinx.

I have been receiving menopause injections for the past few months to dry the endo up before my next op, but since having the injections I feel rubbish. ...Can't sleep well, sick, shaky, my concentration is awful, hot flushes and exhausted. Im trying to carry on working full time but everyday it's getting harder.

I would appreciate any advice, comments or help on how you manage your symptoms. At the moment the future scares me, as I want nothing more than a child but am scared that this won't happen. I have had 3 miscarriages already and am 37.

Thank you for reading this and listening to me....I just feel so scared and alone at times.

Kelly xx

8 Replies

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  • I am so sorry you are having a bad time at the moment.

    I have not been through as much as you and I am sorry I can not give you any advice.

    If you ever need to talk message me and I will try and get back to you as soon as possible.

    Sometimes all Endo sufferers want is someone who will listen to them.

    I hope you are having a better day.

    Kind Regards

    Emma-Jane

  • Thank you Emma-Jane,

    Your right, sometimes it's just good to know that people understand how you are feeling.

    I hope you're keeping well.

    Kelly xx

  • Hi Kelly,

    Firstly I am so sorry that you are having such a bad time.

    I have some things in common with you, my only pain was on my left hand side and I have endo pretty much everywhere but is at its worse around my bowel, bladder, sigmoid colon and colon, intestines etc.

    I am having my sigmoidoscopy tomorrow so I will hopefully be able to ease your worries about that at least. I then have to wait to the end of October to see my consultant and see where we go from here.

    I would rest assured that most doctors jump to worse case and tell you all of the bad bits so that you are never surprised by anything that may happen.

    Please keep in touch as we have similar problems it would be nice to speak to someone who knows what I am going through too.

    Take Care,

    Heather x

  • Thank you so much for replying Heather.

    I hope your sigmoidoscopy went as well as possible. I'm sorry to hear that you are having similar problems to me. When were you diagnosed with Endo? have you found that it has affected your life much??

    How are you feeling after your sigmoidoscopy?

    Thinking of you.

    Take care

    Kelly xx

  • Hi Kelly,

    The sigmoidoscopy went remarkably well actually, all was clear but now they aren't sure where some of the PR bleeding is coming from but it is happening less since my last lap.

    I was diagnosed with Endo in November last year despite having problems since I was about 13/14 (i'm 22 now), I had my first lap then and my second one in June. Despite being on Zoladex is had grown back rather dense in that period of time so I needed another lap to try and get rid of some of it. My main area that causes me problems is my left hand side and some of the endo surrounding my bowel. colon etc is rather sticky and difficult to get rid of. This is the stuff they can't get at as effectively but I have severe endo on both ovaries, pancreas, womb, appendix, basically everywhere sticking everything to everything lol.

    I had a period of time before diagnosis where it really affected my life i was having lots of time off work and school. Also it caused a few problems at work over the last year having to have the two operations. I am really lucky actually and in general apart from time off for hospital appointments and procedures I generally don't need any time off. I am usually in pain most days with my hip and left hand side of my stomach but try to exercise and not focus on the pain and manage to cope without painkillers most of the time.

    I am feeling okay after the sigmoidoscopy, bit bloated and rumbly and a few loo trips over the last two days but in general not too bad.

    How are you feeling about everything? I hope you aren't too worries about the sigmoidoscopy?

    Big hugs,

    Heather x

  • Hi Heather,

    So glad to hear that your sigmoidoscopy went as well as it could. Not looking forward to the wind part (my husband will love that!! LOL) but my letter from the hospital states that I'm not allowed to have anyone in with me. That scares me, as i'm a bit of a baby really!! were you able to have company?? Did it hurt??

    I'm ok, although I am at times feeling very emotional about everything. Every time I see a programme where anyone is having an operation I get quite upset at the thought of everything that is going on and the fact that I have to have another operation.

    I have gone from never having been in hospital, to going there all the time now for tests and goodness knows what and operations!!.....you must feel the same at times??

    I'm sorry to hear that you have been in pain for so long, it must be quite waring at times!!....

    Thank you for writing back, it's good to chat to someone who understands my situation.

    Take Care

    Kelly xx

  • Hi Kelly,

    I wasn't allowed anyone in with me either, they said the reason is because of the wind etc afterwards it can make patients feel uncomfy when there are other people's family around. I was really scared when they said your mum can't come through I think i looked like I was going to cry.

    It was uncomfortable at times as I could feel the scope inside of me and touching the inside of my bowel etc but it never hurt it just felt strange, but not painful :)

    I know what you mean about now being the hospitals best friend sometimes I feel I should have my own designated parking space.

    It is hard to begin with and I felt like you in the fact that seeing operations on the telly and it happened that Endometriosis UK were doing a lot of promo stuff when I was diagnosed and it was on everything Casualty, Holby City, Embarassing Bodies etc and I found that unbearable almost. I am lucky in the fact that I have come to terms with what I have and how it is going to affect my life.

    You will get there too though, it just takes quite a bit of time for it to all become okay in your head.

    Hope you are feeling well.

    Heather xx

  • Hi Heather,

    Thanks for updating me on the sigmoidoscopy, thats put my mind at rest a bit. It's not until the end of October but I will let you know how it goes.

    So what did you say was next for you? have you got to have another op? .....I'm off on holiday next weekend so looking forward to a break and to try and forget things for a while. Can't wait in fact!!

    I'm sure I will get my head around everything soon, it's just happened all so fast, but I will get there!

    Hope you're ok,

    Take care

    Kelly xx

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