Embarrassed to ask…: Hello all! I’ve... - Endometriosis UK

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Embarrassed to ask…

Hooplove00 profile image
26 Replies

Hello all!

I’ve posted a couple times since my lap, but now have another question I feel someone on here can help me with😊

I had major surgery in May of this year. I just now started pelvic floor PT, and will be attending each week for the next month(probably will end up going longer afterwards). My overall fatigue and ability to much of my daily tasks are still pretty challenging.

Anyways, my GP had said to lay off of work for now and if I do: find an employer that would understand sitting/standing too long will cause terrible cramping. Thus, finding something flexible. I made the decision to go back to school full-time. The instructors seem to be willing to work with me and understand I will miss a few days out of the week.

I’ve had a couple of PT appointments already and noticed that I flare for 2 days at least! All I really can do is sleep or lay in a quiet room.

I guess my question is, is it logical that I’m going to school full-time for now? Is it justifiable to go back to school instead of going back to work?Has anyone else experienced this, and what’d you find worked for you?

I’m just wondering if I’m in well over my head.

Thanks so much for reading, and hoping to receive some good insight!💛

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Hooplove00 profile image
Hooplove00
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26 Replies
Endowarrior1807 profile image
Endowarrior1807

Hey

I had surgery for stage 4 endo in June and I’m still off work - I too have found that fatigue and day to day tasks challenging still.

My current sick note ends in 2 weeks and I think I will have to go back to work regardless due to financial constraints.

I think just listen to your body, if you find that you can study then that’s okay but maybe the extra pressure will cause worse symptoms at which point you might need to re-assess.

Also, I’ve been to my GP so many times about my fatigue but not really getting an answer - do you know why you’re still so tired?

Hooplove00 profile image
Hooplove00 in reply toEndowarrior1807

Thank you for your response!

I haven’t gotten much of an answer in regards to fatigue, except that it’s my body still healing? I just wish I knew it would be this long a recovery time 😓

Endowarrior1807 profile image
Endowarrior1807 in reply toHooplove00

I had my follow up at like 7 weeks with my consultant and she told me there I was looking at 4-6 months. Before surgery I thought it was like 6 weeks recovery so I was so shocked

Hooplove00 profile image
Hooplove00 in reply toEndowarrior1807

Right!I thought it would be 6 weeks as well. Now,I’m hearing 6-12months 😳

SavageGold profile image
SavageGold

I know this is not endo related but the principle still stands... when I broke my wrist and the hospital refused to give me a cast for it I was unable to work. I ran out of money after 10 weeks and still couldn't work. I tried. I still couldn't use my hand or wrist. So I went to college instead which gave me a years rest for my wrist to recover before the heavy stuff kicked in with practicals for assessment. As long as your not going to get bitten for fraud claiming finances from the wrong government department going back to school to learn a new skill better suited to your new circumstances that's not hurting you, it's probably the right move for you. I also had a relative who did this but for mental health reasons. She ended up going back to her old job but now had new qualifications. Things change every year.

And lastly lol yeh the recovery is not short for abdominal surgery. I refused surgery with lack of faith in my surgeon when she said 'it's a two week recovery'. I laughed in her face. This group teaches you the dark side they hide from you in hospital. And it's probably not out of meaness. They just have no experience on the other side. they have no time to follow you home and see real life.

Hugs

Hooplove00 profile image
Hooplove00 in reply toSavageGold

thank you for this! it’s crazy how they expect us to be super human 😣 it also puts so much pressure on us because we feel like we need to be “better” by then. At two weeks, I was still debilitated! I really do appreciate this group!

everyone varies ! It’s taken me a year.

Hooplove00 profile image
Hooplove00 in reply toBloomingMarvellous

Yea, I’m wondering if that’s going to be me as well . Everything seems to be a chore!

Lusciouslips profile image
Lusciouslips

Going to college can just be as hard, not physically, but mentally. Will going back to college open more doors for you in the future, better knowledge and a better job that meets your needs?Absolutely therefore its more than justified. It's hard to find an employer that understands. I have lost 2 jobs because of my health which didn't help my mental health. Go you for going back to studying. I too have gone back to college. I wish you all the best xx

As for fatigue. Your body is still repairing. In time it will get better lovely. You hang in there

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

Thank you for your reply! That was one of my worries, was finding an employer that would be accommodating. I agree with the mental health aspect, it’s the worst feeling ever to be fired. To be lectured on how much work you missed / all the things you’re doing wrong, when all you’re doing is fighting making it through a shift. I realized when I’m in pain, I can’t think. At all.

Lusciouslips profile image
Lusciouslips in reply toHooplove00

Thing is I worked when I was in crippling pain I rarely had time off, yet they still fired me. They have a go at you for being in pain and not taking the time off and then you take the time off and you get told off for that too. You want to work but can't, but then not I'll enough to claim even when you technically are. We can't win, can we x

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

I’m so sorry for hearing that you had to go through all of that. It isn’t right and it isn’t fair. Yep, we can never win!

What are you going to college for, if I may ask? Are you full time? I’m thinking maybe I should drop one class😓

Lusciouslips profile image
Lusciouslips in reply toHooplove00

I'm doing counselling concepts and the i start healthcare professions level 2 (access diploma course) on the 8th November for 7months. Full time I believe well given how many assignments you get definitely makes it feel full time x.

What arenyou studying ?

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

That’s amazing! Hope it’s going well for you. I’m working on my transfer degree. So this term I’m taking 2 writing courses and a math course!

Xx

Lusciouslips profile image
Lusciouslips in reply toHooplove00

Good luck with it all. I have literally just resat my maths awaiting results. The stress was unreal xx

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

Thank you so much! Yikes! I’m sorry it was so stressful😕Luckily this math course is pretty easy, just a lot of projects. If anything, I may drop a writing class.

Xx

Lusciouslips profile image
Lusciouslips in reply toHooplove00

Well of dropping a class will help you. Definitely do it xx

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

I really appreciate that.

Today, I’m having lower back pain and heavy bleeding. Very lethargic. Ugh I guess I should’ve kept in mind if/when I’d have complications.

Lusciouslips profile image
Lusciouslips in reply toHooplove00

Plenty of rest lots of fluids. If you can buy a heat belt, it's so much better than a hot water bottle as it lasts until the power bank runs out. What I do is use 2 power banks, when one dies I swap them over and charge the one that is dead. It has 3 settings hottest temp is 65-70 degree so you would have to wear it over a top x

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

You are so sweet, thank you!!!💛

I believe it’s my cycle. Have you ever spotted before your cycle before? To think that I was going to go see a provider today!

Xx

Lusciouslips profile image
Lusciouslips in reply toHooplove00

No, I haven't spotted before my cycle, but I always know when I'm ovulating because that's when I start with the flare ups. I get about 1week brea out of the month and then it's not a full break as I also have fibromyalgia. X

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

My goodness, that sounds awful! I got in touch with my GYN and they want to do a urine sample and ultrasound. Might be a ruptured cyst 😣

Lusciouslips profile image
Lusciouslips

Fingers crossed that it's not a ruptured cyst. GYN discharged me off their list because the person doing my op thinks he has cured me of endo (no joke) x

Hooplove00 profile image
Hooplove00 in reply toLusciouslips

That’s so terrible!!! I’m hoping it’s not as well

HT267 profile image
HT267

Hey,

I had my surgery in Feb 23 initially told 2 wewk recovery then told due to level of excision will be 6 mths and I'm still not recovered now and having pelvic floor physio too...so I really think they don't actually have a clue so I'm now just listening to my body

Sending healing vibes to you

X

Hooplove00 profile image
Hooplove00 in reply toHT267

Thank you so much for your reply!! I’ve been so hard on myself about recovery. Especially because others think that I should be well by now. I have gotten fed up trying to explain to all of them to be honest.

Sending you healing vibes as well 🫂

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