'Suspected endo'

Hello all,

I am new to this community and am just after a little bit of advice.

I started my periods when I was 11 years old, they were horrendous painful and heavy meaning I missed days off school, got sent home from school, couldn't even leave the house sometimes without leaking through instantly.

Eventually, my gp put me microgynon which I continued taking until I was 22.

I decided to stop taking microgynon for various reasons but since then the pain has gone back to the way it was when I was younger (I am 24 now)

Currently I get pain everywhere, legs, back stomach, I get sweaty and nauseous the pain wakes me up and is so bad that all I can do is sit in a scolding hot bath. I take time off work regularly becausesometimes I can't even stand and a couple of months ago I was first to work and a colleague came in to find my lying on the kitchen floor rolling around in agony. I also Leak through within 30 minutes.

Finally after years of being ignored my doctor sent me for blood tests which came back clear. He then sent me for an ultra sound internal and external and here's where I'm confused

The sonographer said she couldn't see anything but said from my symptoms she's quite certain I do have endometriosis.

She said to me my results will be sent back to my gp and that he will likely then send me on to a specialist.

In people's experience is it likely my gp will refer me or will he fob me off with clear scan results?

If he does refer me what is the next steps I'm likely to experience ?

Did anyone else have clear scans only to find they did actually have endo ?

Sorry for all the questions and long message this is all new to me and I feel quite scared, anxious confused all the emotions!

Thank you

13 Replies

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  • Hi - ultrasound scans are usually clear. It shows some presentations of endo but is not a diagnostic test. Click on my name and look at my post on the referral pathway. The important word is 'suspected' endo and if he/she says it is not suspected they will have to be prepared to confirm this on your record with reasons as to why which they will not be prepared to do. The usual course is to give contraceptives but this is your choice - they can't enforce it - and you have had enough of these already with no success. Typically contraceptives can mask progression and I think this is likely in your case. It is your right now to be referred for a lap and this should be a detailed procedure - look at my post on it. Where you go is dependent on where you are in the UK. If you are in England you can request referral to an endo centre. Your symptoms suggest that you might have deep endo that requires skill and knowledge to pick it up and you don't want to risk it being missed in general gynaecology. Have a look at all my posts to see what you identify with and how to find a centre.

  • Thank you I will have a look at your posts xx

  • Hi there. You poor thing. Sounds like you're really going through it. I too have had clear scans. I had an ultrasound, a CT and an MRI all of which came back mostly normal although my doctor said she cannot rule out endo as I have the symptoms and scans cannot diagnose. The only way to truly diagnose it is by laparoscopy. I'm due to have this in August so we shall see what that shows. Have your doctors advised laparoscopy to you at all? Are you on pain medication??

  • Thank you for your reply. No he hasn't mentioned a lap yet I'm wondering if he might mention that when I go and see him for the results of my ultrasound.

    Yes pain medication I am on. He prescribed me mefenamic acid and tranexamic acid. Is this something they prescribe when they think it is endo? Both help however with one of them I can't remember which now your not supposed to take it for longer than 4 days my pain lasts at least 6 every period so they don't benefit me that much

  • gem I have both mefenamic acid and traxenamic acid - they are generally given for period pain and in my personal experience are not enough for endo pain once you've passed a certain point - I was taking mefenamic acid + ibuprofen + codeine to get relief. I tried traxenamic acid but it made me bleed for a fortnight, so I didn't persist with it. It is worth persevering with the mefenamic acid - I don't know if your GP told you this but if you start taking it before your period starts it can help to reduce how much you bleed. But please go back to your GP and tell them it's not enough. They can give you something stronger.

    As has been said, a clear ultrasound is an indicator of endometriosis as the lesions are generally too small to show up. Given that you got far enough for your GP to send you for a scan, I think it's very unlikely that they're going to refuse to refer you. Your next step will be a laparoscopy (cut in the belly button, camera in your tummy) during which they should be able to make a definitive diagnosis. Unfortunately at the moment this is the only way to get a proper diagnosis. They might also be able to treat the endometriosis, though not always - my first lap was diagnostic only as I have very extensive disease which the gynaecologist who did the lap was unable to treat.

    Being fobbed off really depends on the GP - some are rubbish, but there are plenty who aren't. Sounds like yours is on the ball at least.

    Best of luck.

  • Thank you so much that is a really helpful reply. As I said this is all new to me.so all this advice is a massive relief.

    So when you got sent for your first lap what happened before that?

    Did you also have a clear scan? Did your gp then refer you straight to a gynae ?

  • It has been a bit of a complicated journey - I'd had dreadful periods right from the first one. It was dismissed through my teens, I spent my 20's on the pill or pregnant then through my 30's things just got progressively worse. I was taking more and more painkillers and had some really horrendous bowel problems (mucus, bleeding, endlessly constipated). I kept being told my periods were normal and I had IBS. Sigh.

    I then started to have really, really bad abdominal pain and ended up in A&E, where they ruled out appendicitis and said they thought it was gynaecological. The Gp (who had insisted it was IBS) did a CA-125 blood test - this came back raised and he said it was probably ovarian cancer and sent me for an ultrasound, which found no cancer but did find cysts and hydrosalpinx (fluid in the fallopian tubes) but nothing sinister. I was lucky enough that the practise nurse and a different GP then took charge after that- I had a sigmoidoscopy, which was clear, and a referral to the gynae who said straight off that he was sure it was endo, because of my symptoms plus the persistently abnormal CA-125. He arranged the lap, which I waited 8 very painful weeks for, and intended to laser out the endo and fit a mirena. Unfortunately, the endo was too extensive for laser treatment so he put in the Mirena and then put me on injections to put me in temporary menopause and stop my periods to buy me some time until I can get more appropriate surgery. I have now been referred to another specialist at a different hospital (one of the specialist centres) as unfortunately I have a lot of disease and my uterus and bowel are stuck together with my ovaries trapped inbetween (what they call kissing ovaries, where the ovaries are pulled back and touching).

    It was about 14 weeks from the initial referral to the lap, sadly there is no quick fix for endo.

  • Wow you really have been through a lot. It makes mine sound like a walk in the park!

    What is mirena? What does that achieve?

    My main concern at the moment isn't even the pain. I am 24 and have always wanted children and the more I read about endo the more worried I get that I won't be able to conceive naturally but I guess that's a bridge I will have to cross when it gets to it

  • the mirena is a type of coil which has a hormone in it, some women find their periods stop when they have one in. It didn't suit me and I had it taken out after 8 weeks (because it caused constant bleeding) but a lot of women find they can get some pain relief with it.

    Most women with endo can get pregnant - my SIL has it and was able to get pregnant after laser treatment.

  • Please be aware that although we hear so often that a lap is the only definitive way to diagnose endo, it so often isn't. It depends entirely on the skill of the surgeon doing it and their pre-conceived expectations. Many general gynaecologists believe that endo is only to be found on the reproductive organs and so only look there - sometimes alarmingly quickly given the short time so many of you are in theatre. Consequently such women with symptoms of deep rectovaginal endo but none on the reproductive organs are sent away as not having endo when they do. They can then go for years having no diagnosis and being told they can't have endo because they have had a lap. It is so vital that the first lap is done by someone who has the skill and knowledge to do it properly. Even a proper lap only examines the peritoneal cavity and is only definitive if a rectovaginal exam is carried out at the same time to feel for nodules of endo in the rectovaginal septum that is outside the peritoneum and therefore beyond the scope of a laparoscope. Have a look at my post on the diagnostic lap that confirms the procedure to be carried out as contained in the ESHRE guidelines and the one on the peritoneum. Everyone having a first lap should be sure the person carrying it out is qualified and intends to follow this procedure and not to just quickly look at the ovaries.

  • Thank you again lindle.

    I'm really hoping my gp suggests referring me and I don't have to ask.

    I have found an endo centre at my local hospital (portsmouth) and a gynaecologist specialising in endo when I see my gp and I able to request this particular gynae ?

  • If you are in England you are able to request referral to a specific consultant lead team so if there are more that one named gynae at a centre (as per the BSGE list) then you may be allocated to any one of them. But you can request referral to the centre.

  • Hi everyone

    I had my ultrasound results back today . Of course they came back clear of endo so my gp is referring to me a specialist which is all I can ask for I guess!

    However, he did say they had found 9mm of free fluid above my uterus . This is all he said about it so I'm a bit confused.

    Any ideas what this could be?

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