Endometriosis diagnosis timescale? - Endometriosis UK

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Endometriosis diagnosis timescale?


Hello, I know it's very different for a lot of people but I'm wondering about the timing of things.

Right now I'm in a lot of pain, and next friday I have an appointment for a scan, swabs, and tests (which I'm terrified about)

But after this, I'm expecting to have to progress further, because I do have a sinking feeling that I have Endo, how long did everyone have to wait to get a Laparoscopy surgery?

And then what is the timescale for recovery?

For my university degree, we have a residential trip for a week at the end of may, which we have to attend, and despite me providing a doctors note and saying that I'm really not well enough to travel and last a whole week away from home, they're still being ignorant towards it and forcing me to go or they'll fail me. I'm just wondering about recovery time, if I did have the surgery in the next few weeks/months, I'm guessing it would probably be around the time I'm supposed to attend this trip.

11 Replies

I had to wait nearly 3 months for my appointment for my lap to come through, after nearly a year of test and scans etc. I had my lap at the end of January, I tried to ignore being told to take at least two weeks to recover (I hate not being in work), but you'll really need it. I also had a few issues afterwards, so it took a little longer, but if I learnt anything, it was that there's just some times you can't get away with pushing yourself. Don't be afraid to go above tutors etc to get time off, your health needs to come first. We've got your back😊

xximilixx in reply to Nemofudge

Wow I cant believe you had to wait 3 months! I can see how it drives people crazy thinking they're making it up when these test results come back fine, I'm so glad I've read up on other peoples stories beforehands to know to push for an operation. But then again, it took me a month just to get this doctors appointment!

It's a tricky one because I just want it out the way and to know whats wrong, (and to avoid this trip because I know I'm not up for it) but then if i did get the surgery in the next few months, it's exam season too...

I've had an absolute nightmare with Uni at the moment, the main reason being I've been having awful migraines that knock me out for a whole day, don't know if its related but my doctor said with how much blood I'm losing its probably not helping. But I handed them my doctors note saying that I have migraines, and anxiety, most of my anxiety does stem from feeling ill all the time and not being able to help myself, so being in a hostel bed miles away from home for a week isn't going to help the situation, my tutors reply was "Well I don't have it, so i can't relate sorry, you're going on the trip." So i went above him to the head of my course, who responded "If you really had migraines, you'd be sat in the dark all day, and your attendance and grades are fine" which most of the time I am... So i gave up for now, but I went back to my doctor and he's really mad that they've turned down his note, so he's writing another, more in depth one for me to send in so fingers crossed they listen.

Nemofudge in reply to xximilixx

3 months was a blessing after a year of waiting to be honest 😂 It's hard because people don't get it. I've had a lot of 'it's just period pains, suck it up' over the years. They don't understand it's so much more than that.

I've also learnt that it weakens your immune system, which explains why I've had flu 4 times in the past year!

xximilixx in reply to Nemofudge

All I've been getting recently when I tell people I don't feel good at all is "Yeah, but you always feel ill" like the effect is wearing off and no one is taking me as seriously anymore.

I'm always ill too! I didn't realise it could be linked but it would explain a lot, I have the flu right now!

Nemofudge in reply to xximilixx

I didn't realise either! Turns out it's Endo awareness month, it's been very enlightening 😂 so many things have started to make sense!

xximilixx in reply to Nemofudge

It's crazy, something that always seems to happen to me is i hear about something, and then it suddenly becomes very relevant to me...

Taking it really practically here I think there are a couple of tings that you need to consider

1) my experience, and what my consultant told me to expect, was 1 wk recovery, 2 weeks if they removed anything. In the end they removed a lot of deep penetrating endometriosis from a couple of locations including my bowel, and pelvic ligaments and some superficial stuff from an ovary.

2) I could drive, look after my chunky three year old son after week 1 etc., just not pick him up, but I'd had a uterus repair after c-section at the same time and was under for 7 hours; I did rather feel bruised and 'not myself' for a bit. Fluffy headed, weepy and so on. So if your course is residential -truly then you'd probably be ok after week 2 but maybe not so much hitting the bar and late nights after class. If it's a geology field trip and you are going to be in ditches and up mountains then it would be difficult.

3) now the bit your parents wouldn't like. 😁Is it a first yr class? I'm assuming you are UK? Back in my day ( tumbleweed) the first year didn't count to your final degree classification but you had to get 40% to pass to second year. Is it the same still or at your institution? If you are confident of that maybe drop it. I had to do the same ( geology so climbing and mountains as above!) but i knew I had a safe 80% under my belt anyway; the only stickler is it does show up on your transcript as a big fat 'U' which annoys me to this day.

4) if it's second or third year plus don't risk it. I know you are sore and battered and wondering what's wrong but you have been so strong for so long pushing on to the end of exam period if you can and scheduling for the early summer holidays might be the best.

Your lecturers don't sound like they are being very helpful so maybe see if your Drs have any more suggestions for the the pain to help in the meantime?

I'm sorry you are having to manage this all alone, you sound like you are a fabulous advocate for yourself and your health which will be a very useful quality on your endo journey.

All the best, and good luck with the studies-YOU CAN DO IT!


xximilixx in reply to Freckle81

Is it possible to have that kind of deep penetrating endometriosis at my age of 20? I'm really worried because besides the pain im getting in the general area of all my reproductive organs, I'm getting the same pain higher up under my ribs, just left of my belly button, it hurts when I bend over ect, wasn't sure whether it could have spread that far already or if its something else?

Trust me, I haven't gone on a night out since last year, whatever this is that I've got, has kept me indoors and in bed by 8 most nights, which I feel like my university just don't believe. Unfortunately I'm in my second year, this counts for 50% of my grade for one of my modules, and its an ecology residential trip, we had a similar one last year which involved climbing a cliff, and then a 2 hour walk where we spent in rivers and ditches ect, and I cried for 3 days because i kept throwing up and just didn't feel well at all, this was before it's gotten a lot worse like it has now.

They do offer alternative coursework for people that can't go, but their idea of unfit to go on this trip is being in a hospital bed, despite my doctor writing to them saying it's not recommended for me.

It's all been pretty scary for me, I've been mostly okay for the majority of my life, but since being completely alone at uni without my family all the problems seem to have flooded in! But i'm trying my best to deal with them, I think the reception i've been given from the Uni has just spurred me on even further to help myself!

Thank you :)

I echo what people say on here about recovery times. If you're having a diagnostic laparoscopy, then you should be ok after a week, but if they remove anything give yourself at least 2 weeks. It's your body and your health, and you shouldn't be forcing yourself to do anything that your body isn't up to, and I would be very surprised if the university forced you to do the trip if you weren't physically well enough. You've got to account for the fact the tiredness after the operation can last for a couple of weeks - so whilst the pain and the incisions may be ok, you may still be physically exhausted for a while.

In terms of waiting times, I went privately so I was seen in 2 weeks - the reason I went private was because, where I live, there is a waiting time of 14 weeks to simply get an appointment with a gynaecologist, and after 10 years of suffering, I wasn't too keen to wait that long! Your doctor will be able to let you know what the waiting times are, and I would suggest booking in for after you've gone away on the trip. Whilst this does mean putting off treatment, if you can bear it, rather than going through the potential stress and anxiety of missing the trip, it will mean you can do the trip and then allow yourself enough time post-op for recovery.

It's never easy though, and I hope you get it sorted soon!

xximilixx in reply to rhia0901

My uni have basically said to me that unless i've been under the knife and hospitalised, nothing else counts as good enough to say that health wise I can't go on the trip. Which is ridiculous, because I miss about 50% of my lectures as it is, almost passed out attempting to go to one today so had to go home. Hopefully this all gets managed in time for the trip, I'm not adverse to going, just really don't want to be away from home in a hard bed being outside all hours of the day when I'm feeling as weak as I am right now.

Is it really expensive to go private? It's taken me a month just to get a general doctors appointment :(

rhia0901 in reply to xximilixx

You poor thing! I know it may sound extreme, but have you considered whether to defer this year? Perhaps get this sorted and ensure your health is back on track, and then finish the year next year? I found it really tough being away from home when I first got my symptoms, for some reason they always seem much worse when your family are a long way away!

I get private health insurance through work, so I'm afraid I don't know how much it costs. You could always make some enquiries locally, and see how much it would cost? I would definitely push your doctor to make a referral to a specialist as soon as possible, I have to say once I spoke with someone who knew what he was talking about, it really helped, and just to know someone is taking it seriously and knows how to sort it was a real help - I was told for years I had IBS or it was stress, until I was eventually referred, and then everything happened quite quickly.

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