Dealing with endometriosis
Hi guys,
I hope you are all safe and well.
I'm happy to have finally found somewhere to discuss endometriosis, as i have and will continue to have many questions of it. Reading good news stories is always something that makes me feel relieved, and I'm sure you'll figure that I'm not the one with it, however it is my partner.
She's 36 years of age and was diagnosed with it with is several years ago. She's had a laparoscopy previously. Last week she had a follow up appointment with her Dr, and is set to have another one in the not too distant future.
It is something she was open with when we met and i took it on board. Unfortunately i wasn't to know how bad the pain gets. I still wont know, but watching her curl up, catch her breath and cry altogether is absolutely heart breaking.
I can't do anything to be rid of the pain, i can only be there for her.
I'll talk to her, hold her hand and tell her to squeeze if needs be, stroke her hair, rub her shoudlers just to try and give her some comfort of a kind. Eventually it'll go, but usually she has to have morphine, it gets that bad. Seeing the stomach bloat and go down is a mega obvious sign of it's impact too.
Last Friday she'd been told she could have a
How do you help someone who wants to shut off from the world to deal with it and you're almost scared to death incase something has happened?? Seeing the excruciating pain she goes through is horrible and is well embedded in my head, so being away from her and she's struggling pains me.
She wanted to help some friends of ours get some shopping as they're locked up isolating. I told her, time and time again not to go out and do all that when she's in the amount of pain she was in, especially when this is the 4th day in a row now and she'd had a bad day with work and a call with her Drs receptionist. I probably wasn't helping either by telling her to rest and not worry about someone else, but it was almost getting heated. I couldnt stress enough about her resting!
She's a caring person and she will plod along and deal with it. How? I've no idea!!! But for once i wanted her to not worry about someone else and rest up. Especially if she's had morphine too. We dont live together at the moment, so to make sure she didn't go out putting strain on herself to help others, i went out to get it done. The only reason i wasn't necessarily going to go was because i work mainly night shifts and she's always telling me to get sleep as i dont sleep too well. That's her caring side again. So i bit the bullet and stayed up, because i cant have her shouldering the weight of other people all the time, especially in her circumstances right now.
4 days of pain. She's saying it's getting worse. Her lower back around the side is painful more so. She's got to wait for this operation to come through, as right now it's anyone's guess as to how long it'll be.
So how can i help, More so than i possibly can right now? I read so much inbetween sleeping, working and general life, because it means so much to me to help her out. I tell her all the time she's not alone with this fight and she wont be.
She expresses concern about her weight. I don't, but if she's concerned there again, needs some attention. She likes a drink at the weekend as we both do when together. We have walks too. Is there anything dietary that can be done, such as perhaps a gluten free diet as I've seen something to do with gluten free foods helping? How much alcohol is ideal to have? She smokes but not excessive at all. How many cigarettes a day is best if not being able to totally quit?
Any help is appreciated. When she's in pain she's negative and it's upsetting and it gets put across to me somewhat angrily. I get she's in a lot of pain and as humans we do get ratty when we're dealing with so much.
She's a bubbly little soul who couldn't do enough for me. So how can i give something back before she has an operation however long it's going to take??
Since you're partner isn't new to endo, she's probably tried eveything, but get pain killing drugs, hot water bottles, warm baths and light foods like a gluten free diet or a low FODMAP diet can help, they might make a difference. Keep being supportive. As for your partner over exerting herself, i think that's a personal thing she may have to realize. Like for me, I realized early on that my body had new limits that it never did before, and if i over exerted myself past such limits, i would pay for it later in pain and a bad mood. So, i hope that helped, and all the best for the both of you!!!
Thankyou so much. It means a lot to me and my partner as well. I've done some more reading to find aid to assist with it. So I'm gonna try and get some of these things into practice and see if it helps her.
That's great to hear! I'm glad I could help, because this health issue is such a dumb one, I feel like there isn't much to offer, but there's always something to try. Research the hell out of endo - you will never know everything, and even I am still learning new things about endo and I'm going on 3 years of it now. Even if you think it won't work or it's not worth it, give whatever idea you have a try because it might surprise you. Endo remedies are like a process of elimination - try everything, and when you find what works best, stick to it.
It's bizzare, and it's horrible that treatment is so limited. There's always something to learn and i like reading up on it to figure something out.
I've got some stuff on order to put together for her in hope it settles some of the pain or limits it to some extent. She'll be scratching her head when they turn up. But we'll see. It's process of elimination alright. Really do hope it does some good!!🤞
I'll let you know!🙂
The only thing you can really do is try, so good on you!! And it really is crap that we have to suffer due to a lack of good mecidal options that actually work.
There's a few different supplies and I've got a monthly organiser coming so I'm gonna whack it together each month to get her going. It turns out, as she's told me today, that she had a clot and passed what could have been a cyst or the lining. Details were a bit grim, but she's on the morphine. This has been the worst I've known it yet. So i hope the supplies will help!
Thankyou for the links. They seem very thorough so i look forward to be able to tuck into them over the weekend with my partner and see what she is prepared to have a go at, amd that's she comfortable with.
I've decided to put an endo diary together aswell. Logging the date, time the pain starts, time morphine was taken and the dosage. Any additonal supplies and what they are. Lastly the time in which the pain settles. That way we can keep track on how many episodes a day the pain kicks in and how long for. If the supplies i have on order are doing something from am to pm, in a pain period or not, we'll have an idea of what impact they'll have. I really am hoping we see some noticeable differences!Also, what just dawned on with, I'll put in 3 sections over the course of the day, for example,
'Food and drink with quantities taken
0000-1159, 1200-1759, 1800-2359'
That way should pain occur, say 1350, we can narrow it down to the period particular food or drinks have been consumed and take it out the following day and see what happens.
She doesnt have a clue about this yet, so i hope she's ready!😂
