How do you find out how severe your endo is?

[EllieJade95]

Hi guys, bit of a random one but just needed some advice as I am very new to this.

I'm having an internal examination at my doctors in a couple of weeks to test to see if I have endo, luckily i'm booked in to also see a consultant literally straight after my test to go through my results.

My main question is, does anyone know if I will find out how severe it is on the day or if I only found out how bad if I have a laparoscopy? I've seen the odd thing about people being told they have stage 4 and i've heard from a couple of people I know of that they get told that on the day a certain percentage chance of having kids (not sure if that's just horror stories) I wanted to know how true that was & whether after your initial examination you do find out how bad you have it, or just that you have it?

Sorry if that's confusing but just want to prepare myself if you do get told quite a lot on the day of the examination.

If anyone has any advice i'd really appreciate it!

Thank you,

Ellie

[Goldencat]

Hey elliejade - by internal examination I’m assuming you mean a vaginal examination - whilst that can give some indication as to where the endo is it is not in itself diagnostic and Will not be able to tell you the grade of endo or if it is superficial or deep. The only definitive way to know is to have a laparoscopy with a reputable surgeon where they will be able to visually examine for endo. I’m not a doctor but I’m fairly confident that following a lap your surgeon will be able to tell you if it’s likely to impact on your fertility depending on where they find it - but in terms of giving specific percentages I think that’s nonsense. I asked my surgeon post lap if it was likely to impact on my fertility and she said until I start trying there’s no real way to know. Hope that helps x

[EllieJade95 in reply to Goldencat]

Hi Goldencat,

Thank you so much for your reply! Yes the exact examination is called a Trans-Vaginal. I did have a TA (Trans Abdominal) last year before I was suspected of endo but my doctor said that only picks it up if you've had cysts form because of it - so now i'm having a TA. Thank you so much for telling me that! I've been a bit put off because of a couple of things I have heard about percentages and i've always wondered how exactly they would know. My doctor has always told me it can affect fertility but as i'm young & you can have a lap it's not the end of the world right now but a couple of people have injected the fear into me!

In terms of laparoscopy, I haven't really looked anything up regarding it. Is it painful/an awkward surgery to have? My main concern was whether they would definitely be able to tell if I had it or not at the doctors as I wouldn't want to be told it's fine then not have a lap and find that I actually did have it, I haven't even thought about a lap yet!

Thanks again for your help, put my mind at ease a bit! X

[tinkerbell971]

It’s unlikely you will be told you have endo just of an internal examination. The only way to properly diagnose it is through a laparoscopy. If it’s severe it could be seen on an MRI but it’s quite uncommon to even be offered an mri xx

[EllieJade95 in reply to tinkerbell971]

Hey thanks for your message.

The doctor that I see is a specialist consultant in endo & related things. She didn’t want me to go for the stomach scan as she said it won’t show up but she did want me to have a TV scan which may not show extent but should show something at least. Well that’s what I’m hoping!

I think I wasn’t referred straight for a laparoscopy because I only have one symptom which has only just started - I can’t be sure but I think that may be why.

I just wanted to hear opinions so that I know whether I should insist for a laparoscopy x

[tinkerbell971 in reply to EllieJade95]

I would insist for one as I’ve read on here people have had scans and not shown nothing. I myself have had just a normal ultrasound which shown nothing but I insisted for a lap because I needed a cause for my pain. If you feel something is wrong then fight for whatever you want to have because it can be hard for gynaes to believe you and most of the time they are wrong as we know our own bodies. Good luck xx

[EllieJade95 in reply to tinkerbell971]

Ah god I didn’t realise that happened so much the only symptom I have had is bad back pain the first day on my period but it only lasts for a couple of hours. I think my doctor just wanted to be on the safe side so referred me for this.

May I ask if you don’t mind, what we’re the symptoms you were getting and was it outside of your period? Did you have a laparoscopy and did they say anything about fertility? That’s my biggest worry! Xx

[Goldencat in reply to EllieJade95]

Hey Elliejade - just reading your messages. My symptoms started as pain after sex that progressively got worse - fast forward 7 months later I was in agony following sex and this would last a good two days afterwards . By this point I was also in daily pain and pretty much couldn’t leave the house. Never had heavy periods or painful periods - my pain wasn’t cyclical. The difficulty with endo is that it is so varied in symptoms for each individual often depending on where it is. Like I’ve said the only way to assess this is with the lap. I would say have a discussion with your consultant - especially if you’re under a specialist and ask their advice about whether they think you should proceed with surgery with your symptoms. Surgery comes with it’s own side effects that can impact on your issues like risk of adhesions. And as endo has no cure the chances are high you will have to have further surgery to help manage your symptoms. For me my lap hasn’t managed to get rid of my pain although maybe it has slightly alleviated it - I’m two months post surgery now - the surgery itself is fine as it’s under a GA - like others have said It’s more the recovery that is the harder part. I’d have a discussion with your consultant as well about non surgical options such as the coil (which I had fitted and is designed to limit the growth of endo - being local to that area it is thought of as being better than taking the pill back to back ). At the end of the day you know your body best - a lot of the time people are desperate for a laparoscopy just to get a diagnosis - I know I felt like that after a 10month wait I just wanted someone To confirm that it wasn’t all in my head and it was getting so stressful with my work and taking time off when I had no name to what I was going through. just make sure your consultant goes through all the options with you so that you can make an informed decision. And do your research ☺️ Endo uk is a good place to start. Best of luck x

[EllieJade95 in reply to Goldencat]

Thank you so much for your detailed reply! As someone that has had no previous understanding of endo it's good to hear people's stories and opinions. I'm going to see how the scan is & what comes from that and have a conversation with my consultant about what the next steps are. I'm hesitant to have a lap as I only have one symptom being really bad back on my period but again it only lasts for a couple of hours and actually my last period was completely fine. It's that debate of whether I put myself through a surgery when I only currently have one symptom (touch wood) - I think the best thing for me is to see how my symptoms develop. Like you say we all know our own body, at the moment I feel like i'm fine but I could be wrong. Again thank you for your help, and i'm sorry to hear you're still in pain! I hope it gets better for you soon xx

[tinkerbell971 in reply to EllieJade95]

I had a lap last September and only a small patch of endo was found and my bowel was stuck to my left ovary. Most of my symptoms are outside of my period however I do get bad pain whilst on it. I’ve always suffered with bad period pain and heavy bleeding since I started my period but it got better once I went on the pill. However about 2-3 years ago my bloating got so bad and I started bleeding randomly outside my period and after sex. I then started getting daily pain like a dull ache on my left side around where my ovary is with horrendous back pain. During my lap he said he checked my tubes and everything looked fine and I shouldn’t have any fertility problems - this was also one of my main worries. I’m still getting pain now every day even though the endo has been removed. Hopefully you find an answer xx

[EllieJade95 in reply to tinkerbell971]

It's so difficult as I think everyone has different symptoms and it's hard to tell. At the moment I just have the bad back on the first day of my period, but that only lasts an hour or too and my last period was fine. I have nothing else outside of that touchwood, so I think I will see how my symptoms devlop before I decide to commit to surgery. Like yourself fertility is the main worry for me and that's pretty much the only thing that makes me want to have a lap to see. Thank you so much for your help and I hope you find a way to deal with your pain. It's really horrible the things us females have to go through xx

[Rachel_1666]

Evening EllieJade,

Hope you have had a good day...

The way to definitely determine endometriosis is through laparoscopic surgery.

Which is all keyhole. It can be uncomfortable afterwards as they use gas, which will leave you bloated for a little time after (and maybe pain in your shoulder)

Hopefully in a couple of weeks when you meet your doctors (I am guessing within the gynaecologist department) they can answer questions further and potentially put you forward for a laparoscopy if they think that is what is best.

Let me know if you have any other questions .. hear if you want to talk.

Rachel xx

[EllieJade95 in reply to Rachel_1666]

Hi Rachel,

Thank you so much for your message. I did think that a laposcropy would probably be needed but I was just hoping if I had it, it would at least pick it up beforehand so I knew.

My biggest problem at the moment is (touch wood) the only symptom I have is a bad back for 2 or 3 hours on the first day of my period. Apart from that .. nothing. So I feel like I may put myself through the anxiety, time off work & pain of a laparoscopy and may not have anything. But then at the same time I would rather be safe than sorry!

May I ask if you had a laparoscopy and what your results etc were? Xx

[Rachel_1666 in reply to EllieJade95]

Hi EllieJade,

Maybe just see what comes of the scan next week. Like I said the gynaecologist/professional will be able to assess if they feel that it would be best with doing a laparoscopy to investigate further.

How long have the symptoms been for?

So my “story” as such is 2017 Jan was very bloated, even to the point where couldn’t to up my trousers 🙁, had month long periods, tender boobs etc so 2017 May they done the ultrasound which discovered I had two chocolate cysts (one in each ovary)

I then done another ultrasound 4 weeks (so after a cycle) to see if the cysts had changed, but they were still there. So then had my laparoscopy 2018 March, where they removed both cysts. And I am currently on Zoladex so in a state of menopause, as the endometriosis is serve. So they will then do a 2nd surgery.

Rachel xx

[EllieJade95 in reply to Rachel_1666]

I think that's what I will do - it's best for me to just see what results come back and take it from there. I think I need to monitor my symptoms and see what develops from that.

The symptom I have is bad back during periods, but it's only on the first day and only lasts a couple of hours. To make it more confusing, the last period I had was fine so i'm a bit confused now.

I'm sorry to hear of your symptoms & your pain, I hope you find a way to deal with it or for it to get better somehow. I guess we all have to keep striving on even when it feels like we don't want to! xx

[Rachel_1666 in reply to EllieJade95]

Yeah that is probably best.

It is hard sometimes to monitor the symptoms!

No worries .. just frustrating more than anything. I am pleased with the team I have at my hospital though - seem very helpful.

Have a good weekend

Xx