Unsuccessful pain management

[Jessicat87]

Hi everyone,

Last night I ended up being taken into my local A + E by ambulance after ringing 111.

I’m on the second day of my cycle and have been having my usual symptoms; sickness, headaches, fainting, diarrhoea and feeling extremely fatigued. The pain this month is the worst it’s been, it just seems to be getting more severe each cycle.

I’m currently taking co-codamol 30/500mg, 250mg Naproxen and tranexamic acid 500mg. Yesterday it was hit and miss as to whether the medication stayed down and when they did it wasn’t touching the pain.

I’m not on any hormone treatment and not wanting further surgeries at the moment as my partner and I are trying to conceive and have been for over four years. We will be starting IVF soon.

The A + E doctor sent me away with some 60mg codeine and anti sickness after giving me some oramorph which really helped.

I’ve had to let my boss know I won’t be in for the next two days. I am having to take a lot of sick days recently. I work in a preschool and it’s quite a physically demanding job which is impossible when I have a bad flare up!

I really need to try another approach to deal with the pain, other than the ones I currently use; painkillers, heating pad, yoga etc.

My question is has anyone had any success with diet and/or tens machine or have any advice on how to manage my pain better?

Sorry for the length of my post just wanted to give a bit of background info.

💛

[HikerGirl]

Hey Jessicat87 I’m so sorry to hear about the pain you’re living with. It sounds like you’re having an endo flare up at the moment? I remember going through the same last year and how unbearable it felt, especially when the painkillers just kept coming back up 😣

I’ve heard good things about the TENS machine though I haven’t tried it myself.

One thing that’s really helped me is a massage oil with menthol and eucalyptus gently rubbed on my abdomen and back. I think the combination of the muscle relaxant effects of the essential oils and the calming feeling of a light massage (in my back as I can’t stand anything touching my tummy when I get endo pain) really helps get some relief.

I’ve experimented a lot with diet as my endo is affecting my bowel. The best advise I could give isn’t to follow a prescribed diet but to keep a diary of what you eat and how you feel afterwards. from that you can pick what foods you think might be hurting you and cut them out for a month or so, long enough for your body to adjust basically. Then if you go back to it for a meal you will usually know instantly if it’s an irritant for you. Everyone’s dietary needs are so different with endo that there’s no genuine one size fits all diet- it’s just best to listen to your body. So far I’ve cut out, bread (except sourdough), pasta, tea (well down to 1 a day), red meat, pizza and jacket potato (which was actually the food that ended up getting me diagnosed with endo as I had such a bad reaction to it).

I’d be interested to know what yoga you do that helps with your endo as I’ve been wanting to try this.

Also, we’re all different but I find a bath or hot shower helps and also lying in my back in a ‘giving birth’ position as I like to call it 😂 basically knees up and I put pillows under them so I can sleep like this.

Hope this helps, you’re doing amazingly! I’d definitely try to see your gynae again if I were you as I’ve heard that women with endo that are trying to conceive tend to have the best chance immediately after a lap when the endo should be at its most minimal (if you’ve seen a good surgeon of course) ❤️

[Jessicat87 in reply to HikerGirl]

Hi HikerGirl

Thank you so much for your reply! 😀

I will start logging what I eat then. There have been times I have noticed that bread, especially white bread (which I don’t eat often) has irritated my Endo. I think your suggestion is much better than just cutting out food groups. I love my food and really enjoy cooking and I really don’t think I could give up cheese. Cheese is my chocolate!!

The massage tip was great too. I suffer with constipation due to the Codeine I’m taking and end up getting so blocked up even after taking laxative or eating prunes etc. My Mother is always telling me to keep prunes stocked in my cupboard. This just adds to my pain and discomfort. I tried a massage to relieve constipation I found on YouTube. I did it last night and this morning and... I’ve managed to clear out! 😌

As for the yoga I am in now way a professional or knowledgeable again I use YouTube. I find doing simple stretches and poses both relax me and I like to think it stops the adhesions sticking too much. I used to do gymnastics and dance when I was young and I’m still quite flexible. I can only manage it when my pain is at a minimum. Look up: Yoga for Endometriosis on YouTube there are some stretches you can do with your legs up against a wall which I would only recommend if you have the space and aren’t in too much pain. I ended up getting stuck in the bedroom between the wardrobe and door, 🤣.

I’m really tempted to invest in a Tens machine and try and cut down the amount of pain killers I’ve been taking recently.

I’ve woken up this morning with awful side effects of the codeine, I’ve got the worst headache!

I will ring the specialist nurse today, she is great. Even if you just need to cry to someone who understands. I’m lucky to have such a great specialist team at my local hospital.

Do you mind me asking how many surgeries you have had etc and what stage your Endo is?

Xx

[HikerGirl in reply to Jessicat87]

Hi Jessicat87

You definitely shouldn’t have to give up your cheese for endo! We all need our comforts when dealing with this rubbish! Popcorn is my cheese and whilst I’ve been limiting it as it’s basically the arch enemy of constipation, I could never give it up entirely 😂😂

Omg that massage sounds like a miracle Thanks for the tip on the yoga, I’m excited to get started!

I was diagnosed by lap in Oct last year after 7 years of symptoms and the usual drs telling me it’s normal. Unfortunately they found stage 4 with my ovary stuck to my bowel which they couldn’t help with at that time as they weren’t qualified. Since then I’ve been on a battle to get the treatment I need whilst the bowel symptoms have gotten steadily worse, I’m guessing because my bowel is narrowing more from the endo, it’s left me passing blood from my bowel almost every day and otherwise permanently constipated. Fun times!

The lap really helped with my period pain though and I’m still seeing the positive effects of the removal they did do in October. I went from fainting and vomiting every month to working through my period! It was great!

I’m finally back for more surgery next month and a possible bowel resection (woohoo!) but it’s been a full time job making sure I get to this point- so much chasing of appointments etc! 😣😣

[Jessicat87 in reply to HikerGirl]

Thanks HikerGirl!

I too had stage 4, which I wasn’t too surprised about as I was not in a good way! My left tube was stuck to bowel and blocked, my bladder mangled in and covered, the whole of the back of my pelvis was covered too and it was effecting my nerves. I had constant sciatic pain, I remember one night lying on my bed and being pinned there unable to move at all due to it! After a 4 and a half hour operation they had managed to remove most apart from some on my bowel I think, like yours, it was too deep. Unfortunately it has returned and I’m pretty sure it’s not been helped by what was left on my bowel! I had an internal a few weeks ago and the specialist casually commented “yes that would be your left ovary all stuck” after I screamed out in pain and almost kneed him in the side of the head!

It’s so hard to remain positive. My manager is not sympathetic at all. Today she asked so what are you going to do about it? She said, “you can’t keep taking days off like this.” I explained to here that I just had to solider through and that unfortunately there is no cure. She seemed surprised. Feel like printing off some info for her so she can get her facts straight before making out that I’m not helping the situation! Sorry to rant! 🤬

I wish you all the best for your bowel op. I hope you get the relief you deserve!

💛

[Tillyfloss]

hi. How are you feeling? I was in exactly the same position a few years ago and completely understand how you feel ( I even worked in early years 😃!). Do you have a stage diagnosis of your endometriosis? I was a regular at the local hospital for pain management to the extent that nurses even remembered me🙉. Have you asked to see the pain team? They helped me massively to firstly with the specialist to get on the right medication as some make it worse and secondly take it in enough time, I was only taking it when the pain started which was to late. This was fairly successful in getting me through the 5 months to surgery. I found diet did and still does play a huge part in pain. My husband was recommended a book about endometriosis and fertility ( we were also ttc) through nutrition, its a full on book but despite being sceptical I did it, it made a difference very quickly, as I was so poorly I did it to the letter for 6/8 weeks and saw a massive difference. I then introduced one thing at a time so certain bread and cakes are a no go, pasta even gluten free just can't be eaten and I can have milk and cheese just to name a few. It took some effort but it reduced my pain enough to be a wife and mum again. We since found out my bowel has deep infiltrated endometriosis and is inoperable which is why diet plays such a part in it. My hot water bottle was also my best friend 🙉.

For fertility, keep with it, we tried for 8 years for our second, only finding out about the endometriosis three years ago after emergency surgery with complications. 2 years ago after extensive surgery on the endometriosis and full frozen pelvis we were told even with ivf the damage is that extensive it's unlikely to have any chance. That very slim chance through one round of ivf is 5 weeks old and fast asleep on me at the moment so it can happen even when they think it won't. Xx

Ps I found yoga helped to and the breathing techniques good for coping with pain especially during some of the procedures. Xx

[Jessicat87 in reply to Tillyfloss]

Hi Tillyfloss!

Thank you so much for all your advice!

I haven’t seen a pain management team but have been given a med plan from the specialist nurse for my area. Like you I struggle with taking the meds in enough time to be effective before the pain starts and BANG... I’m in agony! I’m not too regular and some months I have a constant niggle all the way through my cycle and others I appear fine and then it suddenly hits me. There never seems to be a pattern to it. I really should write a pain diary but I feel it would make me feel even more sorry for myself, if you get what I mean.

I’ts so helpful to hear about others stories of fertility successes, it gives me hope that one day we will have our very own bundle of joy! It is still hard to remain positive though as all you guys on here struggling to conceive will understand.

My next plan of action is to record the foods that effect my Endo and try to cut them out.

Thanks again!

💛