Anyone in/near Oxford - trying to find a support group.Also anyone had a lap whilst at uni?

[aliceb]

Hi, I'm new here and whilst I've experienced various symptoms for around a year, I've just been referred to the gynae with suspected endo - so in the event of needing a lap it would be in the middle of a uni term - has anyone dealt with this? If so, what/how much did you need to tell tutors, and how much time off did you need?

I've also been trying to find an (active) support group in Oxford and the closest I've found so far is Reading - I'd really appreciate it if anyone knows anything about one that's closer.

Sorry for the laundry list but does anyone have any advice on telling friends/family?

Thanks in advance,

A

[lm330]

Hi Alice,

I had a similar experience as I had real problems with endo during uni. definately talk to someone at uni to see what support you can get. you dont have to tell your tutor if you dont want to. the only people who need to know would be people in the university support domains such as disability support and counselling. they can help you get extensions for deadlines etc if you need. i would say one week off should be ok although you will probably feel fragile for a while longer than that you should be ok to go back to uni fairly soon after. its painful but its not usually invasive as its keyhole surgery. hope it all works out and you have an awesome time at oxford. x

[aliceb in reply to lm330]

Thanks. It's early days yet, and I won't know if a need a lap for a little while yet. Did you need a week completely off, or (based on your experiences) would I manage to nip to the building next door to my flat and back again for lectures in that time?

If you don't mind me asking - what kind of support did you ask for/get? A

[lm330]

um well i think they only say you need 2-3 days off. it depends on the individual and if they find any endo. they found quite a lot of adhesions for me so i was in a lot of pain hence the week. i mean i had symptoms for 5 years before they figured out what it was. support depends on the uni i guess, thats why its worth asking, but you can get support with deadline extensions mainly and like no hastle if you have to miss lectures, seminars. sometimes you can even get it take into account at the end of the year if you dont do that well in exams etc due to health. just keep them informed and keep a record of all your appointments xx

[aliceb in reply to lm330]

That's great - thanks. Sorry for all the inane questions... Did they tell you the results of your lap as soon as you came round or did you have to wait and go back to see the surgeon? A

[lm330]

no they should tell you straight after. although they will write it down for you to read when you get home as you wont remember what they say to you when you are whoozy. no worries about the questions. ask away xx

[uglyduckling]

Dear Alice,

When I had my surgery I was lucky enough to be unemployed so I did not have to worry about deadlines or going to work.

I was ut of it for a bout a week and had trouble standing up straight as it hurt to much so I ended up walking like an old lady all huddled over which made my back feel a lot worse than what it would do if I had just walked straight.

When I told my gran who has had Endometrosis and needed a hysterectomy because of it she just turned around and said I could not be in that much pain as I did not have a hysterectomy which really upset me.

Some people may be a bit wary of you when you first tell them so you need to be prepared as I now realise they are only like this because this disease is not very well heard of before I had it I had never heard of it before.

You can go onto the Endometrosis UK website to get some information to tell you employer/lecturer and friends/family.

If you need to talk just message me.

[aliceb in reply to uglyduckling]

Hi there - thanks for all your advice. Now I just have to wait and see what the consultant says! A

[peppapig30]

hope this helps, its a support group through facebook for ladies in oxfordshire. They are lovely, hope this helps

facebook.com/groups/Endomet...

[aliceb in reply to peppapig30]

That's great - thank you all so much!

[Emmashead]

Hi there im new to this its nice to see people have noticed my support group for oxfordshire ladies even if ur not quite as near as oxfordshire ur still welcome to join were all planning to meet up soon for an afternoon tea/coffee and a chat or if ur on fb frend request me and i'll add u (Emma Elise Shead) xx

[aliceb]

Hi Emma - thanks for letting me know - I don't know anyone with endo so meeting other people in your support group would be really helpful. Now just have to wait to find out if it is endo... A

[Gemini4]

Hi Emma,

I am currently going in my last year of uni, and a month ago was diagnosed with endometriosis. I have been told I will also need more surgery, so will most definitely mean I miss lectures at uni for a short while until I am feeling better again. As soon as I got diagnosed I emailed my year tutor and director of my course, so they knew my condition and situation and have basically told me they will try and help out as much as possible- for instance, extending deadlines if I have to hand something in that I wont be able to make or exams. After my last op last month it took me a good 10 days until I was feeling better, but everyone recovers differently, and I did get a minor infection, so it all depends on the circumstances. Obviously, as you know, you have to hand in mitigating circumstances if you feel that your work has been affected, but I would definitely recommend telling them about your condition and future ops. Also, as a suggestion, I have bought myself a dictaphone, so that if I miss lectures, I can give it to one of my friends so they can record the lectures for me so I can catch up in my own time, rather than just missing out the lectures.

[aliceb]

Hi,

Thanks for the advice - I have an appointment in the middle of this term so now just waiting and seeing I think,

A