Endometriosis UK
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Just having a bit of a worried moment...

Hey ladies just feel like I need to have a bit of a rant...

I was diagnosed with severe and extensive endo in august following a lap, with the endo being around my left ovary, on my bladder, bowel and rectum, my uterine tubes, across my vaginal bone and also a 5cm mass of it at the top of my vagina....(despite the surgeon coming to me an hour before surgery telling me he didnt think he would find anything!!!!)... I havent had hardly any information about it since, what to expect, what happens next or anything. I have had constant pain down the left side of my pelvis before and after my lap, and this was explained to my consultant. I saw him again in October for a post op appointment and he told me he thought the endo he managed to burn away during my lap wouldve stopped the pain, but now it seems worse than ever. It is affecting my sleep, my work and my daily life, I am currently sat with a heat pad on my back. I have also had quite a few episodes of bleeding after sex for a number of days afterwards. (sex has always been painful because of the endo). Following the consultation in october the dr said Id need further surgery to burn it all away but I am still waiting for a date 3 months later. And Ive heard that burning it away doesnt always help?

I just wondered if anyone else has had a similar diagnosis and what their story is and the things they have found. I am 26 in a few days and do not have children.... but would really like to be a mum!

Any help, advice or another rant would be very very helpful :) Us ladies have got to stick together... no one else seems to understand!

xx

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Is the surgeon one of those on this list? If not then he shouldn't be treating endo that is that extensive as I understand it. Look up some of the other posts on recto-vaginal endometriosis.

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

I've just had my op and it was diagnosed mid October.

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He's not on that list no... I was told that he was one of the top surgeons for endo in the west midlands.... Little bit confused now though!

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Whatever you do do not go back for further surgery with this consultant it sounds as if he isn't competent in treating endo...

You need to find your nearest bsge approved endo treatment centre and check out the consultants and there reputation to decide whom will be the best man for the job.

you need a surgeon who knows more about endo And how best to treat it especially if it's extensive as laser/burning is not a cure it could possibly make it more difficult for the next surgeon to treat.

The most effective treatment is excision to remove all rogue cells..

However some times heat/diathermy is used if it's superficial (only on the surface)...

Very long story short 1 lap consultant said I had mild endo on ureters (didn't treat) pain continued had lots of appointments with said consultant and after informing myself about this disease and trying to talk to said consultant I lost complete confidence in him..

So I went back to my gp to explain this and requested she refer me to a centre of my choice and a consultant I choose. The difference in treatment and attitude was amazing and despite on first glance on lap it looked quite healthy he dug a bit deeper and found deep disease he removed 3 nodules with wide excision and used diathermy on more superficial disease also done bilateral utrolosis..

If I can help at all I will

Regards Sharon (fellow endo warrior)

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Wow! Thank you for that advice! How are you now?

I just find my consultant/surgeon is very dismissive of my symptoms and my pain.

So is it best if I go back to my Doctor and ask for a referral to somewhere else? I think the closest one to me is Birmingham.

I was also told in October that I had chronic interstitial cystitis and that Id need treatment on that also... nothing has happened yet...

Sorry if it seems as though I am going on... I do appreciate your help xx

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That's absolutely fine I know how it feels! X

Since my last surgery I feel 90 per cent better I had my surgery in June and I'm currently getting a little pain back but nothing that I can't control..... I have images of my surgery and it is possible that there is a nodule in my bladder but if that's the case I will deal with it when it becomes an issue... My consultant said he wasn't too sure and as I had already had so much done he wanted me to recover from that surgery... But he was amazing he was genuinely interested in my pain and symptoms where as my previous consultant didn't want to listen to the point where I filled in a pain diary and he didn't even glance at it!!!

I believe the consultant at Birmingham has a good reputation I'll take a look and see if I can advise.. If I can stop somebody else suffering like I did I will..

Just to give you an idea of the battle I had I was diagnosed in July 13 and didn't get to my current consultant until 2015 after many battles with the gp and refusing surgery with my first consultant. Xx

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