University and Endo

[KittyCatRockstar]

Hi everyone. So I’m four weeks into my first year at uni and the thing I was fearing most happened- I had an endo flare. My flares always seem to start when I’m at the toilet which is okay when I’m at home because I can just lay on the floor and basically wait it out but I’m in halls and it felt unfair to hog one of the cubicles when there’s two toilets between 8 girls, so somehow I managed to stagger back to my room and wait it out there. My flares seem to last about 30mins at about level 9 pain before dropping to 6-7, so once my pain dropped I made myself a cup of tea and some toast (so I could take painkillers), went back to my room but before I could set my breakfast down, I blacked out? I’m not sure what happened because one second I’m stood there with my breakfast then the next it’s all over the floor but I’m still standing, so I didn’t pass out but I don’t know what happened. But it’s just so disheartening because I was doing so well, yes I’m in constant (level 4) pain but I was still an independent, functioning adult- I was cooking and doing my laundry and attending lectures but then in the space of an hour I became as helpless as a child. My head was so muddled I couldn’t think what to do so I rang my parents (who are 100 miles away and not really able to help) who had to explain to me how to clean it up. I feel really shaken by this because I’ve realised just how helpless I am when I have a flare up. I was diagnosed with endometriosis and adenomyosis in June this year and am now under the care of an endo specialist but my next appointment is in January, which currently feels really far away. Does anyone have any tips/advice for getting through uni whilst have endometriosis and/or adenomyosis? Thank you x

[daybydeni]

Hi

I'm sorry that happened to you it mustve been scary. I managed to get through university with endo and adenomyosis pain.

Some tips I can suggest is:

-disclose to your teachers that you have endo as it sometimes can make your brain foggy or unable to attend lectures seminars; I told mine and they were understanding...there were weeks when I didn't attend because of endo

-make sure you have a snack drawer in your room for when youre unable to get up to make normal food, I always had some food besides my table and drinks as I knew when the pain is really bad even getting up is a struggle

-have you ever tried using a tens machine? I found it can take the edge of the pain combined with pain killers

-i didnt take part in drinking culture as I found it made my endo pain worse but instead I tried to join a club that isnt too focused on that

-be patient with yourself!!

sorry this is all I can say from my own experience

[KittyCatRockstar in reply to daybydeni]

Hi, thank you for your reply. My teachers have all being understanding about missing classes due to illness but I felt really guilty yesterday when I missed a seminar, even though there was no way I was well enough to attend. The snack drawer is a great suggestion, so I will definitely do that. I do have a tens machine which is great when I’m in a bit of pain and still able to go to classes. I don’t drink much either for the same reason but fortunately in the society I joined there isn’t any pressure to drink. I try to patient with myself but I do seem to struggle at times. Thank you for your advice, it’s really nice to know that it’s possible to get through uni despite the challenges of endo and adenomyosis. Thank you again x

[TogetherWeAreStrong Moderator Endometriosis UK in reply to daybydeni]

That's such amazing advice, I have always tried to do similar and have a 'survival pack' whatever that means to you

[Endoff]

Hi there, firstly I’m so sorry you’re going through this. In terms of help available from university (even if I don’t know where you are, hopefully it is a uni nationwide setup service), please contact your Welfare officer from the Uni’s Well-being team. They will be able to help you with mitigation for your deadlines, potentially for future exams etc. The sooner they have you on their radar the better. They also should be able to provide you with an Individual Learning Plan (ILP) so that your health issues are taken into account by academics in case you need to miss lectures, etc. Hope this helps. Any other questions please let me know. All the best x

[KittyCatRockstar in reply to Endoff]

Thank you for your reply. I don’t know if my uni has a well-being team or if it’s just under a different name. There’s ‘disability and dyslexia services’ but I’m not sure I come under that? I was thinking of setting up a meeting with my personal tutor because I’m pretty sure I have to tell them if there’s any personal matters that may affect my performance but also they should be able to point me in the right direction. Do you have any advice on how I could tell them? I’m quite socially awkward and so far I’ve only told a few friends about my diagnosis, so I’m quite nervous about discussing it. Thank you again x