No pain for 20 years - pain on & off over last 5 months. Suddenly this week excruciating pain - 2 visits to hospital & no answers!

No pain for 20 years - pain on & off over last 5 months. Suddenly this week excruciating pain - 2 visits to hospital & no answers!

I was diagnosed 20 years ago with Endometriosis- had treatment (monthly injections to shut down my reproductive system) for 6 months & amazingly & very luckily have had no problems since. Well that's until now - I think?! For the last 5 months I've been suffering from nausea, pain, & digestion issues & have lost 20 kilos because I haven't been able to stomach much food. This week the pain became excruciating & I ended up in the hospital emergency department twice. I've had Ultrasounds, CT scans, X-Ray's, blood tests, a Colonoscopy, & a Gastroscopy. They found gallstones & a fatty liver previously & I had my gallbladder out on the 11th of August. When I was in hospital yesterday one of the doctors mentioned my Endometriosis. It hadn't even crossed my mind as I haven't had a period for 3 years but I've been looking on the internet today & have read that women are getting pain after hysterectomy's?! Can someone please help me & give me some advice. Could all my digestion issues & weight loss as well as this pain be linked to my Endometriosis?

5 Replies

  • Hi there

    As someone who has had a hysterectomy and am still in excruciating pain from my endometriosis I would say it could be.

    I've put weight on rather than lose it due to inactivity and bloating and just the way things are with endo it seems. But I am in excruciating pain - helped by tramadol

    Unfortunately all the tests you've had wouldn't show up endo - you need a laparoscopy really or an MRI by a very skilled technician who knows what to look for.

    As hospital have mentioned it, get your GP to refer you to a BSGE gynae - see their website for centres and go from there.

    Best of luck

  • Thanks for your reply Marcia71. How long after your hysterectomy did the pain start? Or did it never stop? Did they remove all the adhesions when they did the hysterectomy? I've been investigating - do you think it could be endo on the bowel? Or on something to do with the digestive tract? I'm just wondering why it would start hurting after 20 years of no pain?! Especially when I've had no period to stimulate the 'bleed'. I've got an appointment with the gynaecologist tomorrow & hopefully he will have some clues as to what's going on. 😊

  • Hi

    I was ok for a few weeks - but probably as so inactive after hysterectomy - and since then pain has just got worse really. They didn't clear all adhesions at hyster - that gynae thought endo would die off once ovaries gone!! Had a lap after 9 months of pain and that found adhesions and endo so lasered it off. Pain did improve a little bit then started to get worse and has continued. Unfortunately for a while after this op I was put on oestregen only HRT which actually feeds endo so got switched to combined one.

    Endo can grow after ovaries removed, as mine where, as it feeds itself or oestregen feeds it. It only needs one cell to be left behind for it to start growing again. Had you been on any contraceptive that may have halted yours for a while? Or started taking anything that may have made it grow?

    Good luck for tomorrow and I hope it's a BSGE specialist gynae else they may well tell you incorrect facts re endo - check back here if things don't sound right.

  • What's a BSGE specialist ?

  • Hi Sunnygirl1974 , I'm not sure exactly what an BSGE specialist is either. I don't know if we have them here in Australia y-it looks like it might be a UK thing . I want to google it to find out more info.' If I can find anything out I'll message you. 😊