Endometriosis UK
34,701 members30,951 posts

Looking for someone who understands

Hi everyone I'm new on here and I'm not sure where to begin with my story so here goes around 12yrs ago I started complaining to the doctor of pain in my abdomen I was told to suck it and get on with it! Fast forward to April last year I ended up in a&e 6 times where they kept sending me away saying I had a water infection, luckily on my 6 visit I was admitted with severe dehydrate when they found originally 2 abscesses (turned out to be 4) that were poisoning my entire system, after a week of hell where I discovered I'm allergic to pretty much everything they sent me home I had another 3 seperate week long stays in hospital where they tried in vain to stop these abscesses coming back!! In September they finally decided to remove my left ovary and tube but where my insides were such a mess with endometriosis and everything stuck the op took 4 hours longer than planned and resulted in 3 blood transfusions and lots of new scars!! I was told the endometriosis would come back but I would hopefully have some pain free time and maybe conceive not to be the endo is back with vengeance the pain is awful again! So I had my first zoladex implant a week ago to try and stop the endo whilst I have ivf I'm currently in agony I was warned this was going to make me poorly but my gums and lips swelled up my period is unbearable and to top it off I'd love to be able to put my boobs away in the cupboard until they stop hurting so bad!!!! I just wanted to talk to someone who know the hell this is, my husband and family have been great but they just don't understand the hormones and pain x

5 Replies

I'm sorry to hear you're having such a rough time of it :( We all here understand how you feel. Endo can be such a frustrating and emotionally draining condition to deal with. Sending hugs xx


Thank you Janine 33 I feel like I'm missing out on life it's rubbish xxx


Are you in the UK? If so, your GP should know the official protocol he is supposed to follow, in order to send you for treatment in a Specialist Endo Clinic, or BSGE Clinic - they have the best Endo Consultants working there and they work hand-in-hand with bowel and urinary surgeons/specialists, all of who can find, identify and remove endo from the trickiest of spaces in the abdominal cavity . Read around on here to find out more about the BSGE Centres and the referral procedure. Also check out the website of 'Endo UK': they host this site, and the link to their website is at the top of the page. There is loads of advice on their website, and there are phone and email links to talk to their trained advisors.

If you are not in the UK, I would still contact 'Endo UK' as they may be able to tell you of helpful groups or the procedures where you live.

I was told I had to 'put up with it' over 40 years ago, and it makes me want to scream that women are still being treated like this. I hope this help. I think it is criminal that this was not dealt with properly by your GP years ago.


Believe me my GP has an awful lot to answer for if this had been caught when I was early 20's I would not be in the situation of having to choose between having a child or a hysterectomy! They think I had pid which messed up all my tubes and stuck one of them to my bowel! I went to the hospital because the GP didn't seem to know what to do with me at the beginning of last year and since then my consultant has been great but it does mean the GP's at our local surgery have no time for me and just keep telling me to ring the hospital with my questions!! I phoned the GP on Tuesday because my gums and mouth swelled up to ask what I should do and she said well let's just google the side affects shall we?? I mean wtf!! then proceeded to say I can take what ever I like as I'm obviously not pregnant so gurgle some aspirin!! Since then my period has arrived and I'm in horrific pain so I'm taking tramadol and dicloflec so not only am I in pain I'm also high!!! Thank you GrittyReads I am in the U.K. I will contact Endo uk I'm willing to do anything at this point I can't continue like this x


It may not be the case with your hospital treatment, but sometimes general gynaecologists just don't know enough about Endo - especially: getting to all the 'difficult to access' parts of the abdominal cavity; identifying the various forms of endo tissue; and then removing it safely, especially from the bowel etc. But, 'yes' do talk to Endo UK, they can tell you how to tell your GP that he may well need to refer you to a BSGE Clinic. I hope all goes well.


You may also like...