Diagnosis: I've had ultrasounds that were... - Endometriosis UK

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Diagnosis

Igiveup29
Igiveup29

I've had ultrasounds that were normal but my dr feels my symptoms are endo but says a lap is too risky and I shouldn't unless it's a last resort. Now I'm single I still want to know, I tried for 6 months and nothing and I'm 29 now. I just need to know officially

14 Replies
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Hi did they say why a lap is risky and a last resort? Because that's the best way to see what is going on

They said it could cause damage.

HiddenThis reply has been deleted
Christina11
Christina11 in reply to Hidden

Yes I agree you should have a lap that is the only way to see properly because ultrasounds and scans cannot show much. Plus if you have endo like symptoms then even more of a reason

Igiveup29
Igiveup29 in reply to Hidden

Thank you, they said I have it without confirming it tho. So I just want to know for sure.

I think just for your peace of mind it's better to to be examined and get some answers because when you don't have definite answer it can be annoying

Thank you for replying

Igiveup29
Igiveup29 in reply to Hidden

Are there any risks if I haven't had any kids?

HiddenThis reply has been deleted
Igiveup29
Igiveup29 in reply to Hidden

Thank you

I'm going through fertility treatment at the moment and had a lap last October diagnosing stage 4 endo and a following surgery this June. They are very reluctant to perform more surgery as the risk that it may cause more damage to my ovaries, other organs and cause more adhesions is high. It may improve your chances of conceiving, but there are associated risks. Ask if you can see a gyne dr to see if they feel the benefits of surgery outweighs the risks

Ive had 2 laps the first one was "inconclusive" which was 6 years ago. So after numerous trips back and forth to see my GP due to unbearable pain, i had my second lap 6 weeks ago. The findings were i have stage 4 endo with thickened lesions behind my womb which is attaching to my bowel and pulling my ovaries into the middle which is called kissing ovary syndrome. I now have to see a specialist today actually, to see what can be done for me. Please insist on having a lap done to find out whats going on its better to have it dealt with as soon as. Good luck

Hi,

I had an mri and they have diagnosed it from that. I don't know if it's because it's quite deep that they were able to See?! Could this be an option for you? X

A lap is the best way to diagnose Endo, I believe MRI's etc can spot some, but a lap is still essential to see the full extent and types of Endo. However, try to make sure that at first you are just having a 'diagnostic' lap. This is because, if it is Endo, and it is serious, then general hospital Gynaes are often not sufficiently experienced in Endo alone. Remember, they deal with 'everything' gynaecological, not just Endo, so may not find 'all' the endo - in all the hiding places of the abdominal cavity - or be able to identify all the different types of endo tissue, or be able to remove it all from all the difficult to access places. EG: if it's on your bowel they need to have bowel surgeons on hand, which is why there are specialist Endo Centres.

If you should have a more serious type of Endo, they are supposed to refer you (or get your GP to refer you) to specialist Endo Centres, or BSGE Centres - there may be one near you. If an initial lap says you need a BSGE Centre you can come back on here and ask what people recommend in your area - although ask them to answer in 'Private messages' (PMs) to you, as we are not supposed to mention hospitals or consultants by name on here. You could also ask about general hospitals/Gynaes for the initial Diagnostic lap - but again ask for 'PMs'.

It is a bit of an 'either / or' situation regarding the risks of a laparoscopy, especially if you are young and have not had a family. Any removal, of endo tissue, can cause scarring and adhesions - some of which (especially if badly done) can impair fertility. But, at the same time, if nothing is known about the extent and position of the endo tissue, then it itself could be impairing fertility as well as causing pain and making daily life a misery. At least a sound diagnostic Lap will be able to assess what the situation is.

The way your Dr talks, it sounds as if he assumes that a laparoscopy could be detrimental ... as if he is expecting removal would take place, and that it could be harmful, but my understanding it that they can just do an assessment Lap. I believe you have the right to say you would prefer BSGE expertise for removal.

However, if you are still concerned I would talk to the Advisors at 'Endo UK' [link at top of page, to website and email & phone contacts]. Also, read around on here as much as possible, plus there are US and Canadian Endo sites that regularly report on new advances and with info. Finally, search in your area to see if there is a local 'Endo UK' support Group. I live in South Devon, and we have one, and it is helpful to talk to a group of women who have all had different experiences - you will certainly find out about the good and bad of being treated in your area.

Sorry it's so long, hope this helps.

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