Mouth left open!

Hi all, I've never really done anything like this before but I really feel like I just need to talk about some things and get some stuff off my chest!

Without boring everyone too much, I got diagnosed with endometriosis last Wednesday and am currently recovering on my sofa with my duvet! So, I went into hospital and I just felt my surgeon rushed through the description of the procedure and I felt very scared. When I woke up the nurse told me I had to have more surgery than planned and had to wait for the doctor. At this point I still didn't know what was wrong with me. A few hours later my doctor came to see me and quickly explained I had endometriosis and they had to make more cuts in my stomach to burn some of it away as it had attached itself to my bladder, bowel, ovary and ferlopion tube. He also said my womb, ovaries, tubes etc were very red with inflammation (has anyone else had this?) He then said he would see me again in two to three months; wished me good day and left.

I know what endometriosis is because I had researched it but I got no info, leaflets, guidance or support from the hospital, does that sound crazy to anyone else but me?!

Anyway, I'm slowly recovering from the surgery although I feel completely knocked down but I just don't know where to go from here, you know?!

I have so many questions but have to wait a few months to see my consultant again. He never did believe it was endometriosis, he was conceived it was a bowel problem so was very reluctant to go ahead with a laparoscopy.

Wow, just took a big sigh of relief after writing this! Didn't mean to write so much but I guess it just came pouring out! Just wanted to share my story really :-)

11 Replies

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  • NExt step if to ask to be referred to one of the accredited endo centres. If your surgeon was a regular gynaecologist this might explain why he didn't remove all the endo in the one op -it is more complex that either he had prepared for or was trained for. Though many don't admit to their short comings in endo experience.

    Now that you know you have endo - and complex surgery is required next time have a look on the website for your nearest endo centre and ask your GP to refer you to it asap.

    bsge.org.uk/ec-BSGE-accredi...

    There isn't a great deal of info in any of the NHS info leaflets about endo - so getting online and doing your own homework is by far the better option.

    Get to know your body parts down below and what impact endo and surgery can have on them.

    As your bowel in involved look for recto-vaginal or RV endometriosis articles.

    The NHS guidelines for RV endo are on

    england.nhs.uk/wp-content/u...

    Use the search box on the green bar at the top of the page to look for recto-vaginal endo or bladder endo and you'll a wide variety of previous discussions on these -some will have good links to useful websites for more info.

    Unless your gynae surgeon is already an accredited endo surgeon at an accredited endo centre - then switch to an endo centre to ensure you have access to endo specialist urologists and colorectal surgeons. This is no longer just a gynae condition the endo is affecting other organs and your case will need reviewing and discussing among various surgeons to get the best people on the surgical team for when you have your op.

    MEantime you can take the BC Pill to stop periods while you wait if it gets too painful to have them.

  • Thank you so much for taking the time to reply. I never considered searching for an endo centre but will definitely look into it x

  • Hi. I'm afraid this sounds like pretty standard behaviour from the nhs. I believe the reason the gynecologist may not have been able to do the surgery is that it's normally a specialist team who operate on bowels as it's such a intricate part to operate on. We have a huge hospital in my area but a specialist team still need to come from Edinburgh for any bowel surgery. Try not to worry too much. At the end of the day, you'd rather be in the safe hands of the bowel team. Good luck x

  • Thanks for taking the time to reply, means a lot :-) x

  • Hi I am recovering from my lap 9 days ago so sorry not got loads of energy for a long reply however I did want to say 'hi' and I hope you have a speedy recovery. The other thing is that you mention researching about endo - this is something I have done loads and I really really believe in. I can wholeheartedly recommend joining a facebook group called EndoMetropolis. It isnt just a normal support group it is very different. It us run by a wonderful and knowledgeable lady called Libby and also Dr David Redwine whi is one of America's leading experts. It is an amazing place to post questions and learn about endo. They also have a website called Endopaedia which is full of reliable facts that can help us make the right decisions for us. Xxx

  • Hi, thank you so much for replying. I completely understand the 'no energy' feeling! I didn't realise just how wiped out I would feel, I feel completely exhausted just getting up to pop to the loo; I live in a flat too so it's not like I have stairs to climb! I have been signed off work for two weeks so really hope I'm better by then as I work with young children so lots of lifting is involved.

    Anyway, thank you for your recommendations, I'll get onto having a look. I wish you a speedy recovery too. Feel better soon xxx

  • Hope you make a good recovery, but PLEASE, when you go back to work get someone else to do the lifting for a couple of weeks if you can - otherwise you risk doing further damage to yourself! My job involves heavy lifting too and I had to ask my colleagues whenever I needed something moving. Don't underestimate your recovery time - you may look and feel alright on the outside, but your insides have had a lot done to them!

  • Very good point! I read an interesting quote yesterday that said something like 'I may look ok on the outside but look inside and it's a different story' I'll definitely take on your advice and ask for help at work for the first few weeks at least. Thanks for taking the time to message :-)

  • I know how you feel, was diagnosed in Dec and had my op in March. Again it was more than was expected. My bowel had stuck to one of my ovaries and endo was stuck on kidney tubes and bilateral cysts on ovaries and in pouch of Douglas. Woke up with drain in and catheter, totally mortified. Let out following day and back in with wound infection. Was given booklet to read and still waiting for follow up. Recovering well but terrified of pain returning. Good luck with your treatment.

  • Cor that sounds awful! So sorry to hear that. One of my worries is I just don't know what happens now, I know there are treatments but my hormones are very imbalanced so is surgery the only way for me?! We'll have to see. I hope you feel better soon. Thanks for replying x

  • It's 16 days after my first lap now and I'm still sore. I'm sure people think I should be fine now, and largely I am, but I'm still sore. I can't help it and do what I can so I'm up and mobile. Think I've over done it the past few days though so make sure you take your time. I too work with children so have had to have a third week off as id be no good at work. Us women have it tough don't we! I don't have an app back at hosp til Feb so also feel a bit in the dark although I've found an endo specialist place in a nearby town (nhs) so I'm going to ask to be referred there. I just don't know if I do it before or after I've been back to see the consultant so I've got a bit more info.

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