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Endometriosis UK
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Stage 4

Hi there

I have been diagnosed with stage 4. The doctor said there is a lot of endometorisis and its covering my ovaries. They are going to do a MRI then figure out how best to get it all. Is there going to be damage to my ovaries?

Thanks xx

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There most likely will be damage to your ovaries...and I hate to be the one to tell you this. I'm stage 3 and my tubes are already affected and my ovaries have scaring on them as well. Even though there might be damage though that doesn't necessarily mean infertility(if that's a concern) Yes it might cause a problem but the drs can help with that. And even though I said there would most likely be damage...there could be none at all in the long run. Keep your chin up and don't freak out until you absolutely have a reason to. Don't stress until you have conclusive results

xx

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I was diagnosed with stage 3, I've made laparoscopy and my doctor told me that my ovaries were damaged and he had to make them small, however, after two months it started working. So don't worry, think positive and have a good luck.. xxx

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Hi. I was diagnosed with stage 4 endo on my first lap and they could not remove it as it was close to my bowel and would need assistance from an additional surgeon. I had an MRI scan to ascertain if it was deep infiltrating endo - fortunately not. I had a second lap 8 wks after the first and they excised all endo including endo from my ovaries. They also clipped one of my tubes due to hydrosalpinx. My gynae advised to wait two cycles and they should be back to normal working order so I can proceed with IVF. Don't worry, they will do what they can to preserve your ovaries. just ensure that your gynae specialises in endo and has BSGE accreditation. There are centres set up to deal with this.

Good luck!

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Thank you. it's good to other people experiences with it xx

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No no thank you both for your replies. I would rather have a realistic idea of what my diagnose could mean. I really wasn't sure about posting as I didn't know if I was over thinking things, but I just had a ask, then I can prepare myself if it's going to be news that we didn't want to really hear lol

It's just hard as we thought that if I had it diagnosed it would be removed, but as there is so much I'm still waiting to have it removed. It's good to know what is causing my pain but it's hard still having to wait to find out if there is damage.

Thanks again xx

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Hi. I know it's a worrying time but sounds like you're in good hands. I was really upset to wake up from my first lap to hear I'd need another one! Hopefully you receive the MRI results quickly. We received the results within 24 hours! . I went private and it was picked up by my insurers as endo is a recognised condition. If NHS I believe they expedite stage 4 or recto vaginal endo laps as it is the most severe. Your consultant should be aware of your objectives - to relieve pain and preserve fertility.

Please try not to worry. Wish you the best.

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Normally a lap would be clear diagnosis as to the extent - as it is not always visible on scans, are you having excision xx

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Sometimes you need both lap and MRI to understand if it infiltrates your other organs. E.g bowel as this would not be seen on a lap. although it is acknowledged that an MRI scan has its limitations hence doubling up.

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I had both admitedly not a endo specialist for lap (gen gyno) so he he missed everything, had mri nothing not till open surgery was detected uterus stuck bladder (with endo spec) - I am not the norm thou xx

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Hi, I have stage 4 deeply infiltrating rectroviginal endo having mri on Tuesday. Awaiting major surgery with endo specialist. I totally understand your concerns about ovaries etc. Hugs xx

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That's what the doctor said I'm sure it was something about checking it on my bowel. I have been really lucky and my doctor is an endo specialist. So I feel like it I'm in safe hands. Trying not to worry but sometimes it just feels a bit overwhelming lol xx

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Yeah I feel the same. My consultant the the endo was everywhere and was very nasty. I also have adenmyosis. What's your pain like do you get excruciating back pain and numbness in your legs? Xx

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My pain is stabbing pain, horrendous back pain, sore when going to the toilet in all forms, painfully intercourse, pain going down my legs, a weird pinching pain round hips and sore hips. The pain can last for over a week, even if my bleeding only lasted a few days.

I was quite a naive teenager and didn't discuss period pains with anyone so I have always had this pain since I was 14 (now nearly 29) I just thought it was normally until I snapped at my sister one day and she was ow what's wrong with you so I told her and she was like "you do know that's not too normal haha"

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I have the same pain. Horrendous back pain with sciatic pain as well which is constant. Bowel pain,pain with intercourse which is just awful stabbings pain. The list goes on! Painkillers are useless. just hoping we both get our ops thro soon I want to be able to enjoy the summer :-) xx

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I really hope so! Fingers crossed for us both and we get some relief! Xx

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Hi

It has been mentioned that you need to be seen someone accredited by the BSGE but I want to be sure you know what this means. It is a list of 'Centres of Excellence' in endometriosis that have have proven their expertise in dealing with complex cases by having to demonstrate it by results. This was established in 2010 after I brought to their attention the difficulty we have in finding proper care. The NICE guidelines (which refer to recommendations by the NHS as to how various conditions must be dealt with) stress that women with complex cases must ONLY be treated in a Centre of Excellence. Most GPs and general gynaecologists don't even know of this but you must ensure that you are not being operated on by a general gynaecologist. The list has to show not only the name of the specialist but also the colorectal surgeon who will be in attendance. I have put the link to the list at the bottom.

You can see anyone you want in or out of your area through NHS Choices and it is worth travelling to the best. Mr Ashwini Trehan in Yorkshire is generally accepted as the best and patients travel from all over the world to see him. He works privately and on the NHS. We are so lucky to have people like him in this country. I had 6 hours of radical excision by him in 2009 at age 56 for stage 4. His website is extremely informative. If your ovaries can be preserved he will preserve them, He won't need to do an MRI as endo doesn't show up. Much endo is microscopic and can only be confirmed by having a diagnostic lap with biopsies taken from various areas from the entire pelvic peritoneum. it is almost certain that if you have this done by a general gynaecologist you will be left with lots of endo that they can't see and you will be in the same situation somewhere down the line.

Take a copy of the list to your GP and insist on referral to a Centre of Excellence as recommended by the NHS itself.

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

endometriosis-consultant.co.uk

Keep us posted. x

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Thanks for your information you shared. Greatly appreciated. Wish you luck as well.

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Thank you for the information. I just read the list and I didn't even realise I had been attending the Edinburgh endometriosis centre. My doctor: professor Andrew Horne, is lovely and I was told by a colleague of his that he is great and this is "passion" of his. (Her words haha)

He did say to me that my next operation, will be done by two surgeons and possibly it would be him.

Thank you so much for the information xx

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I'm sorry. That's not good. Every Dr. is different on... What? They decide to do in order to help someone. Try to be positive even though that might be challenging. Best of wishes. I am very aware of stage 4 Endometriosis. It's very painful, too.

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Thank you

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Your welcome. Keep reaching out to others. It will help. Hope you feel better.

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Thank you. This forum has been great xx

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