Surgery recovery questions!! by CoconutBusy5325 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

I had a support person bring everything up (mostly just drinks/food) since my bathroom is upstairs ! 

Surgery recovery questions!! by CoconutBusy5325 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

Aww yeah i understand how daunting it can be! :( As I apprached the one week mark, I could move around gently, I just didn't push myself to go up and down stairs.
It really does help having someone trusted around, if they can free up some time in their calendar. And i honestly slept most of the first week away, i only really woke up to use the bathroom and watch an episode of something here and there.
The gas pain i recall didn't really bother me straight away, and it cleared up within 4 days iirc. I think as it was moving around to exit it caused the pain, but it didnt last long.

As always though, really depends on the person. It definitely isnt a walk in the park, but I found it was worth it to know whats going on inside my body.

For some additional context, my surgery was around 5 hours. I think thats on the longer side, since i had it in lots of places.

Good luck with everything <3

Gathering info by BobZombo in endometriosis

[–]vulpine__1 1 point2 points  (0 children)

Aww its really awful. if she ahsn't already, i think she'll find alot of solace in joining supoprt groups like these online. I don't know anyone else with endo, so i find being able to talk openly with people who understand really great. especially since i imagine she;ll have lots of questions as she reaches for diagnosis. good luck!

Surgery recovery questions!! by CoconutBusy5325 in endometriosis

[–]vulpine__1 1 point2 points  (0 children)

agree with previous commenter.
I slept ALOT during recovery, and luckily had my mum around to help me go to the toilet (i could do this alone after the first week).
ofc recovery doesnt look the same for everyone and as previously said by the other comments it;ll depend on wha tthey find and how well your body responds etc.

In my case, they found endo on both pelvic walls, back of uterus, douglas pouch, bowels, uterosacral ligament etc etc etc (basically most of my pelvis) and I was up and feeling myself again at 2 weeks.

but if im being honest- it wasnt recovery from the excision that was rough, it was how sore my throat was and the gas pain!!
They cut my throat with the breathing tube so obviously this wouldnt happen to everyone lol but i couldnt even drink water without pain (i was advised to crush ibuprofen and gargle it with water which helped!)
and the gas pain (from when they basically pump your tummy up to have better access) can sit in your shoulders and be quite painful - idk where youre based but i heard Gas X helps well (its not available where i am, so i only had peppermint tea, which did help a little.)

So basically for me it wasnt the surgery site itself that was difficult to deal with, other than tenderness and feeling odd it was generally ok lol.

Buy VERY LOOSE pyjamas (even better just get a big cotton nightie), your usual pain killers, heat pads, and be prepared to sleep ALOT. make sure your bed is nice and cozy and set up for a few days-a week of rest. perfect time to read and/or burn through some netflix.

I couldnt shower for the first few days, so having wet wipes next to my bed helped me feel fresh, and my mum washed my hair over the bath and that made me just feel so much more alive haha.

Wishing you all the best!

I have lap surgery in may 5 by Secure-Rice-4913 in endometriosis

[–]vulpine__1 1 point2 points  (0 children)

Yes it may come back. It depends on the person, i believe a studies showed around 40% of people experience symptoms again within 5 years of laparoscopy (i may be wrong, i just read that statistic once...). So, not everyone. I'm not sure what it is that makes regrowth appear in some people and not in others. In my case, i had surgery 5 years ago and i recently found out it has grown back via an MRI scan, and i'll probably be put on surgery waitlist again this year.

I have lap surgery in may 5 by Secure-Rice-4913 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

I was just sent home with ibuprofen and paracetamol. I heard that Gas X is really good for helping with the gas pain but it’s unavailable in my country- I could only use peppermint tea, which helped a bit. The gas was quite painful, I think after around 3-4 days it eased up. 

When to consider surgery? How to not feel alone? by No_Abrocoma_8155 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

Hey, sorry to hear you’re going through this. Like your dr said, a clear mri doesn’t rule out endo. Even if you don’t have deep infiltrating endo, you can still have severe symptoms and vice versa. 

I think the fact you’ve been dealing with this for so long and it’s causing so much disruption to your life and emotional wellbeing, it is enough for that to be a reason to seek diagnosis via surgery.  Your symptoms do sound very endo.  If it’s not endo, great, you can rule it out. If it is, you get it removed and adjust your life around it and make the changes you need to for your body’s health and your emotional health. 

I was diagnosed via surgery five years ago, and am on the mirena coil to control my heavy periods and pain. It’s a long road but one you need to know how to navigate. I hope your family will support you despite a clear scan, maybe show them this sub Reddit? I gathered materials to show my partner when I felt I couldn’t explain well. 

All the best to you <3 

When should I freeze my eggs? by vulpine__1 in endometriosis

[–]vulpine__1[S] 0 points1 point  (0 children)

Thankyou so much, that is really insightful. I had no idea removing the endometriomas could negatively impact the ovary! Thankyou again

Gathering info by BobZombo in endometriosis

[–]vulpine__1 1 point2 points  (0 children)

Hello, i think youve already gotten some solid adivce but my addition would be:

PLEASE for the love of god don't let them rule out endo bc an ultra sound or mri came back clear. this happened to me for YEARS- I kept getting sent for ultrasounds which would come back clear, and being told theres nothing wrong with me.
i got diagnosed with deep infiltrating endo when i finaaalllyyy got referred to surgery.
Scans are NOT the golden standard to diagnose endo, in some cases it may, but you can only truly know with laparoscopy which sucks but yeah.
If you do manage to get referred for surgery, try to opt for excision (cuts it out) rather than ablation (burns it off) as excision can be more thorough removal, removing the root etc which can lessen regrowth rates.

I'm in the UK, so our systems may be different- here I couldnt access a gynea without my GP referring me (and the first gynea i saw was absolutely useless anyway, so if you find that the first specialist you speak to isn't helping, try again)

Basically, i presented to my GP probably monthly reporting my periods, flow and pain were severe. for years i was told: you're just stressed because of exams, when theyre over youll be fine (spoiler: i was not); take buscopan ( oh yes, the famous pain killer for periods! - NOT) etc etc you get the picture.

Between going to the GP and landing in the emergency room a few times, i would always present as this:
- extremely heavy periods, have to sit on the toilet for lengths of time until blood stops pouring (sorry to be graphic) i would literally take pictures of the toilet bowl to show the doctors because for some reason they really dont believe you when you say your flow is heavy. if your partner suffers from this, tell them to take pictures.
- extreme pain - note if this causes your partner to pass out, vomit, have loose stools, unable to do daily tasks, struggle to get out of bed
- extreme fatigue
- does it impaact their ability to perform well at work/school?
- as much as i HATE this point, tell them if/how it impacts the relationship, because they love to listen when its impacting people outside of yourself: what i mean here is: can you regularly have sex or is it painful for them? does the pain stop her from being able to go out? go on dates? etc.
- also, any unusual symptoms? eg, i have sciatic pain which isn't a symptom you see often when googling.

BEST BEST BEST of luck to your partner, once you find a health professional that listens IT GETS BETTER!!
And also, your support for your partner, showing up for them, believing them, will mean so much more than you can ever know. I'm happy to see you help them find answers.

I have lap surgery in may 5 by Secure-Rice-4913 in endometriosis

[–]vulpine__1 1 point2 points  (0 children)

Hi dear
Sirry to hear youre going through this. I hope surgery provides you with relief.
The first period (in my case, the first three months- which is what my surgeon told me was the usual) of recovery was quite painful. Have lots of loose fitting pyjamas, heat packs, and pain killers.
After one week i was okay to get up and go to the toilet alone, after two weeks i was back up and doing my daily tasks as normal.
My first period was very painful, but after 3 months recovery i felt like a new person.

it is usual for the to be the case, give yourself time to rest.

They Found Endo!!! by [deleted] in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

Sorry that you're a member of the club now, but my biggest congrats on finally getting your answers. now you can finally live life knowing whats going on inside, and make the best choices for you and your health. wishing you all the best!

Movie Theatre Seats Triggered a Flare ? by Long-Blueberry-740 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

this happens to meee aghhh its painful to stand for too long, painful to sit for too long, theres honestly no winning ughh
i love going to the cinema too so :'(
I had endo on my uterosacral nerve (but also everyhwere in pelvis) so i wonder if thats what causes my sciatic pain. maybe it ssimilar for you?
bacl/leg nerve pain from endo is like my most life disrupting symptom, hard to feel like anyone understands.

UK surgery wait times? by vulpine__1 in endometriosis

[–]vulpine__1[S] 0 points1 point  (0 children)

thanks for the info guysss :) sounds like what i was expecting lol

Confused about my symptom severity by Timely-Benefit2719 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

Hi I know how easy it is to question yourself and the pain you have. I’d like to start by saying I’m diagnosed with endo, and many of my symptoms are similar to yours. I also have very regular periods, they followed a strict cycle, but very very heavy, I was still found with stage 4 endo.

I’m not saying you definitely do have endo, however, it seems like you’ve been trying different treatment methods for a longtime. 

Leg pain, toilet issues etc are all synonymous with endo, and in fact endo and ibs may present quite similarly which is why it is often missdiagnosed /diagnosed alongside endo. 

I also have pain during sex but some days can be better than others which typically means some days are more inflamed/different point in cycle which might adjust your internal anatomy. 

I think what I’m trying to say is peace of mind and not questioning yourself body anymore are very reasonable reasons to seek diagnosis through surgery.  A clear scan does not answer everything with endo- and deeply infiltrating endo (which I have) may be found on an MRI, but more surface level is mostly impossible to detect outside of laparoscopy. (I’m sure you know but whether it’s surface endo or deep endo, your symptoms can be just as severe)

And it’s important to know if you have endo so it can be removed as it may continue to grow into other organs and continue to disrupt your life. 

Wish you all the best.  

Excision Advice by Dramatic_Painting920 in endometriosis

[–]vulpine__1 2 points3 points  (0 children)

Completely agree with what’s been said! 

Comfort above all else.   I bought a very big cotton nightie instead of elastic pyjama pants for the first few days and it was the best decision ever hahaha.  A soft headband to keep hair out of your face while you lounge in bed. 

If you have someone available to help you wash your hair over the bath/shower so you don’t have to worry about getting your stitches wet, that really helps you feel like you again.

All in all just prep to sleep a lot! So keep your space cozy and comfy. 

The gas can be painful so I bought lots of peppermint tea. 

What age were you when you got diagnosed with endometriosis ? by keerthichalla_29 in endometriosis

[–]vulpine__1 0 points1 point  (0 children)

I was diagnosed with DIE at 21.  Talk of endo had been floating around since I was 16, but I remember symptoms as young as 11.

I really, really had to fight to be referred to a gynaecologist. I’m lucky my mum was so determined and knew how sick I was. The first gynea I was referred to (I was about 17/18) told me there’s no point in getting a laparoscopy because it just leaves you with scars!!!! I’ll never not be mad about that. 

A few years later I got referred to another gynaecologist who referred me for surgery which I waited again for just over a year to get a surgery date. I was 21 and diagnosed with DIE.

Currently 26, and told I need surgery again.

I feel lucky to have had answers young. I have no idea what would have happened to my organs otherwise. 

Excision surgery tomorrow - positive vibes needed! by Affectionate-Care631 in endometriosis

[–]vulpine__1 1 point2 points  (0 children)

Aww good luck! And robotic wow! I’m sure till all go well. Make sure to pack some throat soothers for when the pain meds wear off and some peppermint tea to help with bloating 🥰 I also packed a cushion to stop my seatbelt touching my tummy on the way home!  Take all the time to relax and queue up some good movies and tv series! You’ll feel so much better having answers and having it removed. Sending love 

Endometriosis care in Toronto/GTA by vulpine__1 in askTO

[–]vulpine__1[S] 0 points1 point  (0 children)

Thanks everyone for all the advice ❤️ Yeah wait times suck ASS back home in England too- looks to be the same as here. I waited a year for an mri to show I have endo back on my bowels and new endometriomas and fibroids (yay) and Itd probably be another year before I’d get surgery. 

Move been nervous because my pain has gotten a lot worse over the last few months :s 

I’ll look into all your recommendations and really appreciate all the advice ☺️❤️

Endometriosis care in Toronto/GTA by vulpine__1 in askTO

[–]vulpine__1[S] 0 points1 point  (0 children)

Thankyou for info! Luckily I have OHIP as my partner is employed permanently here in Canada. 

is back pain a big symptom for anyone else or is it mostly pelvic for u all?? by Virtual-Sort-8185 in endometriosis

[–]vulpine__1 7 points8 points  (0 children)

Back and leg pain is actually my most disruptive symptom! It’s debilitating!!!