Living with endometriosis

[Leah_363]

Hi, i’m on the waiting list for a laparoscopy so i can be formally diagnosed but while i wait for that, would anyone be able to give me advice or tips on how to manage my condition. I get cramping most days but i can power through it but i get my bad days and im bed bound and nearly pass out from the pain. It’s taking a toll on my physical and mental health, so I’m wondering how all of you get through it xx

[Hunter-23]

Hi, I'm in a similar boat to you!

I'm awaiting my MRI results and then hopefully will be added to the lap wait list.

I have constant pelvic pain and like you just power through. I find it much easier to just try and block out the pain especially as I have young children and also working full time so lots of people rely on me.

But I have learnt that I must take time for me and not do too much when I can. I've had a bad flare this weekend and has spent the majority of it in bed or on the sofa with painkillers. When I have been feeling like getting up I've just done doing small things to keep the house ticking over as it makes me feel good too.

You'll have to figure out what makes you feel better and happier. It will depend on your home situation. Have you a partner/kids? Are you still at home?

Having people that understands really helps too. As soon as I can feel my body telling me to slow down then I can reiterate this to my husband and he starts taking on more daily tasks that need doing just to give my body a break.

Hope you get your lap soon with some answers and relief 🤞🏻 I probably haven't helped much but just know you're not alone and there isn't a right or wrong way to deal with it - just look after yourself.

[Leah_363 in reply to Hunter-23]

Thank you so much for replying, i don’t really know anyone with the same condition so it’s comforting knowing im not alone in this. I’m currently at uni but i’m doing it from home until the lockdown is over so luckily i have my parents to help out when things get bad. I’m going to start trying different distractions when the cramping gets worse to see what helps take my mind off of it, thank you again i really appreciate it

[Hunter-23 in reply to Leah_363]

I like using a TENS machine - the only issue is setting it all up and I hate messing about with things like that when I'm already agitated with the pain.

I've really been getting into reading which is a huge distraction and essential oils

[Leah_363 in reply to Hunter-23]

I’ve heard of them but wasn’t sure if they were helpful but i’ll have a look into getting one, i might have to wait until i move into my uni house as my room at uni has no space for anything aha. I’ll try the oils as well i always find lavender quite calming so i think i’ll find some that i can put on a pillow or cloth

[lawrins]

Hello Dear, I have Endometriosis too. I have had 3 op for this and was never told about anything that it would reduce the chance of pregnancy. When I looked into it, it was actually shown that the first 6 months are those when people were more likely to conceive. I think this case wasn’t for me but could be. My hubby also has low count sperm which is an extra issue. After trying for 2 years we went to our doctor. They told us because of the endo we didn’t have to wait for 2 years. So, I’d booked in with my GP and saw what they recommended. Any advice will be appreciated.

[Strawberryal]

If you can keep a diary of what you eat and stress levels that might give you a better idea of what makes your pains worse. I personally find what I was eating had a huge effect on my endo pains. There's loads on reducing pain through cleaning up your diet. I reduced all foods that cause inflammation and went from needing my tubes removed because they were so bad and was not ovulating (was assigned to one of the top endo surgeons as they were so concerned about my endo) to conceiving my son 2 weeks after was told this! It took me around 3-4 months to really get my body back to a normal state but I felt the affects of eating better foods after just 1 month and had no endo pains, which obviously led to a massive reduction and reversal in my endo. It's hard work but it can really want to manage the endo. After a few months I'd started to reintroduce inflammatory foods back and ate in moderation so doesn't have to be forever! Good luck.

[Leah_363 in reply to Strawberryal]

Thank you for replying! I tried cutting out gluten and dairy to see if that would help but i think actually writing down what makes it worse would definitely be easier and more helpful. Im so glad you got to eat the things you cut out as well after a while because that’s one of the things that really gets me down about endo, that its completely changing my life. Thank you again i really appreciate it and i’m glad you’re doing better!

[TennisAM]

Hey, worth discussing with the GP, there's a painkiller called Etoricoxib (for rheumatoid arthritis) which I got given for endo. It works really well. Make sure they give you Omeprazole with it as you need to protect your stomach. Works really well and I haven't had any side effects.

Happy to share my research of natural things that work with you too. If you send me a private message I'll send it to you.

[Leah_363 in reply to TennisAM]

Thats really helpful thank you! I’m on codeine at the moment but i hate using it all the time because it puts up my tolerance so knowing what to ask for is a big help. I’ll Pm you now as well!