Seeking advice - anyone in a similar situation?!

[Consumer_researcher]

Hi everyone,

Not posted in a while but would appreciate if anyone can help!

Just seeking abit of advice/ reassurance if anyone in or been through similar outcome.

So I’ve just heard back from the gynaecologist regarding my recent mri scan to see if there was any underlying endometriosis that had grown back after having an operation last August and having superficial endo removed successfully.

Since the op I had a few months pain free but it’s stepped up pain wise the past 3/4 months with pain almost all month round. I started a PhD full time in January so life is stressful and will only continue to be more so as is the nature of a PhD!

Where I am at now, as no deep endo was shown, is they are referring me to pain management. I am hopeful to see what they can offer me, although sceptical at the same time as have I already tried many medication previously which hasn’t worked for pain and already do quite abit of exercise.

Anyone in a similar situation??

Feeling very mixed emotions as pain management is now my option and I’m concerned for what’s to come especially the undoubtably painful flare ups that will come with stress!! 😩😫

[Aurora20]

Hi, I don’t know if I can really help!! Are you on the pill to help with pain and slowing down the growth? I had my op same as you pain free for about 4 months then it started again and had a scan it grown back!! My gyno said the pill helps with the pain and I went on and it has helped tbh x

[Hayayaya in reply to Aurora20]

Just putting it out there that the pill doesn’t help everyone. Didn’t help me at all.. tbh I felt like it worsened my endo pain which I found really strange as the pill is meant to slow down these growths..

[TinyRoo]

Hi,

So sorry to hear your dealing with this. I'm in a similar position as I'm doing a PhD too. I have been off since my operation due to pain (it seems worse) and my studies interrupted. I was full-time too (started last October) but unfortunately probably going to go back part-time as I'm not sure I can cope going back full time yet as I'm in constant pain. Have the university /supervisors been supportive? That was my first port of call so that I knew they understood what was going on. This gave me a sense of relief.

I know how you feel about pain meds (my consultant said the pain clinic might be next for me) . I have exhausted every drug class for pain..then there are the side effects. Amitriptyline has probably been the best for me but I think that's because I have nerve related pain. Have you tried hormonal treatments? or a TENs machine? I also sometimes use a hot water bottle to distract myself from the pain for a bit.

Try to be kind to yourself as much as possible. I know it's difficult as a PhD is stressful and hard but I think it's important to listen to your body too and its healthy to take time away to re-set or do something you enjoy if it does flare up.

[Hidden]

Hello,

I am really sorry to hear about your situation , but I just wanted to share that the university is often willing to help so it's worth asking early on ,

I was in the final year of my PhD and am going part time but for me this is only because it's taken until this year ( after 10 yrs) to be told suspected endo and waiting on surgery . I also wasn't on anything to manage this at all .

I told the university after falling behind and I was so suprised there is all kinds of support.

Flexibility on deadlines

Extra breaks for viva

I am also in the process of requesting a better chair and standing desk for my final year as I am finding my pain is aggravated by sitting .

I just wanted to say it would be defientely worth mentioning early on if you haven't to see what can be done to help make it flexible for you , it's one pressure off your mind.

I also find homeworking for desk work is helpful for me as I can do flexible hours if I have been really busy doing experimental work etc. It allows me that extra hour of rest or to be a bit more comfortable on bad days.

[Consumer_researcher in reply to Hidden]

Just want to say thank you so much for the suggestion of requesting a standing desk and chair!! I have managed to secure funding from Student Finance for a standing adjustable ergonomic desk and a specialised ergonomic chair for my home office! I can’t believe it! I start second year of my PhD today…and I’ve had a really bad few months of endo flare up. So, thank you for your suggestion, as off the back of that I followed the procedure for requesting funding 💺🖥💕

[Hidden in reply to Consumer_researcher]

Hey super late reply but that's great news I am glad you managed to get funding for better home equipment i hope its helping a little !Hope you are getting on okay with your PhD