Endometriosis and University

Hey ladies! Its been 2 weeks since my lap! I am back at uni now and was wondering if anyone has any advice on what you say to your friends about the ongoing pain? i dont want to sound like I am moaning or not wanting to spend time with them as I just want to battle the pain myself when it comes!

hope the pain improves soon...

also would it be sensible to let the university know? Has anyone else done this? Were they understanding? I may get some leaflets and give them to the university nurse to hand out.

I managed to go out for about 2hours on Monday night then I was just too tired, or not used to drinking again.

hope everyone's pain was not too bad today . Xx

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7 Replies

  • I wouldn't touch alcohol when recovering from surgery - it's enough trauma getting the body to be healing. Stick to water and good nutrious food for a couple of months. Your body will be much happier not having to spend time processing alcohol when it should be spending time making you well again inside.

    I don't drink any alcohol at all nowadays because it does make my endo pains worse, and quite a few ladies have found that to be the case as they trial and error different foods and drinks to find what things they can consume without making things worse.

    Yes you should let the Uni know - so if you need time off you can have time off without it impacting on your studies - so it can be taken in to account. Let your tutors know and the student welfare people know too.

    You can print off leaflets to give to friends to explain endo if they don't know about it.

    There are some on the endometriosisuk website but also smaller flyers and cards can be found with a google image search.

    Tell people you have recently had surgery and are needing time to recover, (there is no nedd to be graphic or give details if you don't want them to know that side of it)

    If they are mature and caring friends they will understand and support you, if they are not then don't give them the time of day because they are childish and selfish and not deserving of your friendship.

    Remember too if they have been drinking they are not behaving rationally no one who is drinking behaves rationally. They may goad you to join them to not be a party pooper or spoil sport but that is the drink talking, and they are not in the slightest bit interested in your welfare but only in their selfish quest to have fun. Ignore them and look after yourself.

    They will hopefully grow up one day.

    Another thing to bare in mind is that over 1 in 10 women have endo. There are bound to be lots of fellow uni students with endo - some may be suffering and not even know they have endo. Others may be experienced with meds and surgeries and very sympathetic to what you are going through, so perhaps ask at the students union or welfare office if they know of other endo ladies, there might even be members of the faculty with endo. But ask around or put up a flyer asking anyone interested in joining you in a local endo support group to get in touch with you.

    It is a very common condition. Or perhaps extend the invite to those with Pcos and Adeno too. There might be quite a number of students feeling alone and isolated with their gynae problems who would love a sympathetic group of supportive students who do understand.

    Do your best to look after yourself and not over do things for a few weeks yet.

    e.g. returning to the gym after a lap ..is 10 weeks. to give you some idea of time frames.

  • Thankyou so much for that. I only had a couple glasses of wine, my choice, but like i said i was in bed 2 hours later! My friends do not pressure me which is great, when i said I wanted to go home they were all very supportive and said if i didn't feel good then its best i go home, and one friend took the decision to end her night too so she knew i was back safely!!

    that's a really good idea and i will look into it more, i felt very alone before being diagnosed so a support group would be an excellent idea and even raising awareness.

    after Monday it shows i still need to let my body recover!! Thankyou for your advice I have taken it all on board!!!

  • I don't understand why women are so scared / hesitant to tell people that they have endo. You would tell people if you had another illness probably. Why the secrecy, it is nothing to be ashamed of and the most awareness WE all create, the better for all of us.

    My view: tell your friends and tell your tutors that you have endometriosis and it causes ongoing dehabilitating pain. If they ask what it is, educate them.

    Why be shy?

  • ..most of the people at my work know. I sometimes get people I hardly even know coming over and asking me how I am feeling as everyone knows I am the lady with endometriosis! I would much rather that than be known as the woman that is always late / leaving work early / complaining that she is tired.

  • Hi anneliives. Hope you're feeling better after your lap. I work in a university and would definitely recommend you let your Uni know as they will not be able to give you any support if they don't know your situation. You may also be able to submit mitigating circumstances form if your exams/assessments have been/will be affected by your illness/surgery (providing your university follows the same procedures). As an employer, my university has been very supportive so far I my endometriosis and I know of some students with endometriosis in our department alone who are supported too. I hope this helps. Xx

  • Hey, hope you are feeling okay after the lap. I am also at university and my endo began at the end of my first year, so I understand what you are going through. I think it's important to tell some close friends because they can support you and be there for you if you need help, also it will help them to understand why you might struggle with nights out and things like that, and they may be more understanding if you have to cancel plans because you are not feeling up to it. Especially when you are away from home, it really helps to have the support of your friends :) Obviously some people are more understanding than others... Hopefully your friends will be caring and understanding about it as much as possible.

    I recently told the university about my endo, as it was having quite an impact on everything and my attendence wasn't amazing. They were very, very supportive, and my lecturers are looking out for me which is really nice. It also means you can get mitigating circumstances, and you are never know when you might need that, so it's quite useful to have.

    Feel free to message me if you want to talk about it more, as I think we are in a similar position at the moment. What do you study? X

  • Hi! I am overwhelmed by the detailed responses, it is so lovely!! I felt like because it was not recognized as some other conditions they wouldn't understand the condition, and I actually hate moaning or pitying myself but I am starting to explain to them what it is and they have even been doing some of their own research, so are becoming more understanding.

    I am going to discuss with my head of year about the condition and how it sometimes effects me on a day to day basis, and see what can be done. I have been starting to do alot more since my lap, e,g walking everyday, going to lunch with friends and returning to lectures full time. Which is good. I had an mirena fitted and also on the pill so still get some bad waves of pain but hoping they will settle in the next few weeks.

    Actually one of the most effective ways to tell my friends about it was to show them my scars, even though tiny they explain what the procedure involves and why.

    My closest friends know and if I am in pain are always on 'call' and sometimes I take them up on the offer for a hot water bottle haha!!

    I think I might start some sort of awareness, once I have caught up with my coursework I am going to look into it.

    Tamsin, I am studying International Equine and Agricultural Management, which is something I really enjoy!! What are you studying?? x

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