Endometriosis

I was 18 when I was diagnosed with endometriosis . Had my son 25yrs and never looked back, untill now. I was having problems with bowel incointence. Been going test now the past year. Turn out I have a bowel constricture, active diverticula, all from endometrisis. All my insides are stuck together . Have to have my ovaries removed and get a colomosty bag.

13 Replies

oldestnewest
  • Hi, sorry to hear about that, are you in the UK? If so are you under the care of an endo specialist at one of the BSGE centres?

  • Live in Ireland. No not yet. Doctor in the hospital os making appointment with a. Gyne. Back for more test and then will discuss the op

  • Ah ok! Please do your research and consider a second opinion, you might not even need to have your ovaries removed, or a colostomy bag, it normally depends on the skill of the surgeon - many women are told this but it often turns out it's due to lack of skill. A really skilled surgeon should be able to separate everything, remove all the disease and preserve your organs.

    Have you been in touch with the Irish endometriosis charity, endometriosis.ie/ and are you on facebook? :-)

  • Thank you .will go to this site and look for my options

  • Definitely get in touch with them too, the lady who runs their charity is extremely knowledgeable and they have a closed group on Facebook for members as well. I would also suggest you join EndoMetropolis, which is an excellent educational endo discussion group on Facebook. As things currently stand it's so important to learn about endo ourselves, to make sure we are getting the best treatment. 😊

    m.facebook.com/groups/28907...

  • What kind of symptoms were you getting if you don't mind me asking. I was diagnosed when I was 18 now 33 I've had 3 laps and dabating a 4th my bowels are sluggish and extreamly painful. Hope you're ok, and I would look into this a little more like the lady said a more skilled surgeon

    Thanks in advance xx

  • Hi - it really is vital that you are seen in a specialist centre with bowel involvement and the UK guidelines for endo confirm this. A temporary colostomy might be needed sometimes but it would be rare that this would be permanent if your surgery is done by a highly skilled surgeon. You have a centre in Ireland. Click on my name and have a look at my post on finding a specialist.

  • Hi there,

    Are you north or south of the border? There is a specialist centre in Derry I think bsge.org.uk/ec-BSGE-accredi...

    I definitely agree with the other ladies a specialist and a second opinion is best. You may not need the ovaries out and only a temporary colostomy - I was warned I'd need one and in the end didn't have one at all!

    You can get copies of all your results as they're sent to your gp, say you're seeing another consultant and they need the info so could they print out what is relevant (good to keep a copy for future reference too).

    There is definitely an endo specialist in Belfast, they're looking into setting up a clinic with proper support - waiting lists horrendous! I'm sure there will be specialists in the Republic too.

    So sorry you're going through this, it must be a real shock. Things will get better with time x

  • My symptoms started with bowel incontinence. But when I was sixteen got the endo symptoms. At 18 was diagnosed with endo. Had a d. And c. Them. Days was the name. Suffered untill I was. 29 which is when I got pregnant. Had my son. Never looked back. so endo was gone. So was a surprise last week to be told it had not. 55 now so think my age is against me. Already have had unusual cell build up in my breast. Which I have surgery for. This is my last year with the breast clinic. Now this. Seen the look before. So will think the worse for now. That way any other news is good. Thank you all for the reply. With let you know how I get on. Next appointment on the 21sep.

  • Sorry just remembered things. Was diagnosed with diverticula 20 years ago. Then fiber myalgia. Which I was told if you endo,you are likely to get this. So have all the symptoms

  • Have one more test. A CT abdomen and pelvis

  • One thing makes me feel alive is getting into clean bedwear. Cause that is were I want to be.

  • Dear 10rik

    I am so sorry for all the pain you are going through. I to had the same problems with endo when i was 16 and they wanted to remove my ovary and tubes when i was seventeen. I had my baby at 21, and the pain was still there. I have also now had my tubes removed, but the pain of endo never truly went away. I have fibromyalgia now and more pain of endo and i am 55 next monday and waiting for the doctors to send me to an endo specialist and maybe the bowel surgeon as well. So please try and do what the other ladies here have asked you to do, and get a second opinion before you go ahead with what, will be a big change in your life. Best Wishes hun. x

You may also like...