Endometriosis UK
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Recently diagnosed with Endo

Hi guys ,my name is Angel I've recently been diagnosed with Endometriosis. I underwent laprascopic surgery a day ago but they didn't remove the endo they stitched me up again and booked me for another operation because they don't have experience in that kind of operation only the diagnostic part. Now I'm in a lot of pain and I don't know what to do now. They said I must go to a specialist which I think they should've said before opening me up. Also I wasn't given any information on how I should clean the wound in my belly button ,it's quite sore and it feels hot.

Please help.

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It is correct for them to not operate on you when they discovered your condition is severe. It is better to be treated by qualified specialis than general gynaecologist. It is difficult to know the extent of your condition until they performed a diagnostic laparoscopy. So I would say they done the right thing in the right order.

You could see you GP to discuss the operation findings. Find out where and when you will be treated by the specialist. I found GP nurse is quite good for wound care advice etc.

Hope this helps

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Thank you so much...that really helps,I'm new to all this and it's all quite scary I must admit, I could use all the info and advice. Thanks again,I'll be seeing my GP soon.

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Hi Angel,

Sorry to hear your experience. It doesn't sound like my experience of the NHS.

What you should NOT DO is have a shower/clean the wounds for 2 days. Leave them so the stitches don't get irritated. That's the advice I was given.

If it gets swollen it might be infected, in which case you should go to your doctor.

I know that some women get the endo removed by lap, but perhaps not all surgeons have the experience, as in your case. However, I'm beginning to think that in the long run, going to a specialist is a good idea because they will be able to treat you much quicker than the NHS can. And be better equipped too.

That's only my opinion though, and everyone is different. But what I think is common in most women is the need for information and to feel like they are in control - because there is no cure, finding the right treatment plan for you is essential, and chasing up different doctors and surgeons, who are already overstretched and not specialists, is just another strain.

All the best.

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Thank you so much,I really appreciate it...

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If you are in the UK you must be diagnosed by a gynaecologist with expertise in endo and they would be qualified to treat mild endo by ablation or excision. If severe endo (stage 3/4/Rectovaginal) then they cannot treat it and you would be referred on to a specialist centre. So it is difficult to know if you were operated on by a general gynae who should not have been treating you or a specialist in general gynae who found severe endo. If it falls under 'severe' as defined by the NHS you now need a referral to a BSGE accredited endo centre. This can be by the gynaecologist or by your GP. Have a look at the NHS England contract and refer your GP to it. Note that referral is direct through NHS England and not through the CCG.

england.nhs.uk/commissionin...

Commissioning manual page 138:

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

NICE Guideline:

nice.org.uk/guidance/ng73/r...

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Thank you very much, but I am in South Africa. I'm not sure if things are done the same way this side as in England but I have been refered to a specialist I'll be seeing him next week and then we'll take it from there.

Appreciate all the replies. They've been very helpful.

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Hey there,

I am from South Africa too. Did you go and see a Specialist after all? If yes, was this helpful at all?

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Hey there

Thank you for asking.I did see a specialist who left me more confused than I was before the op. He did a Vaginal ultrasound and a physical examination by poking me (painfully)if I might add..then looked at me and said there's nothing wrong with me, my gynae doesnt know what he's doing. I was shocked and very angry so I asked a million question which he didn't want to respond to, my argument was that we did all this vaginal ultrasound,pap smear etc and they couldn't see anything it's only when they did they the diagnostic laproscopy that they finally saw the problem so how can he just do a simple exam and tell me there's nothing wrong, I was furious. He didn't care at all,so I asked him if the op was a waste of time he said it wasn't because at least they made a diagnosis but I said a diagnosis you disagree with. Seeing that I wasn't backing down asked me what the doctors actually did during the op I told him I'm not sure let's call him he refused saying he won't talk to anyone from the hospital because he is a specialist he studied an extra 4 years to qualify as a specialist and my gynae didn't. I was furious, nonetheless he put on Vissane to manage the pain and said I must come back in 6 months to review. And I must start thinking of having a child soon to avoid complications. So I'm back in square one and just killing myself with painkillers.

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This sounds terrible! So sorry that you have been going through this.

My Experience:

I went in for a pap smear, just as a general check because it was time.

The ultrasound revealed a cyst but my gynecologist suggested a Laparoscopy to confirm exactly what it was. The results confirmed that I had a large 'chocolate cyst' and that my organs were adhering to each other and he strongly recommended a Laparotomy to clear it all up.

The procedure was basically like having a C-section, which I was not well prepared for. Recovery was really tough! Emotionally draining too.

I have also been advised to have children ASAP since they discovered that one of my Fallopian tubes has been blocked because of my Endometriosis. I am 26 years old and this is not part of my plan right now, but I was advised that the longer I wait, the less likely it'll be that I have children. So we are in the same boat.

Pain was never my issue. I have never really experienced the severe pain women speak about. My periods just became very heavy and I had pain and severe bloating (couldn't even button my jeans) during my cycle.

I just wanted to know what your experience has been like on Visanne. I find that I am super fatigued ALL the time, I have anxiety and sometimes insomnia. I stopped taking it for about a month and I felt normal again. I've started taking it again out of fear that my other tube my get blocked too.

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