Coping strategies for endometriosis

[Lilyanne96]

Hello, I am currently awaiting a laparoscopy on the NHS. I am desperate for any tips that you may have when on your period to cope with the pain/be able to function and go into work. I currently find I have to sit in a scorching hot bath or shower for hours to gain any relief. At the moment I take ibuprofen lysine and paracetamol and I use a bulky TENs machine on my lower abdomen, it’s not ideal as I’m an NHS midwife and at work I get questions from patients asking about the wires - as you can imagine a woman in labour doesn’t particularly sympathise with period pain/endometriosis haha, so I try to hide it best I can. I’m open to any tips - medical or alternative ANYTHING. Every period is getting worse and worse and I’m scared of what’s to come. It sounds awful but sometimes I lie in bed and think someone just please take my uterus out I can’t do this anymore. I’m not a huge fan of the idea of having to take prescription pain killers every month but I can’t see any other solution. Thank you

[Yotom]

Hey, I found that for me mefenamic acid (for pain relief) paired with tranexamic acid (to stem blood flow) worked wonders for a while until it kind of just... stopped. I was told that taking a break from them might help as I got too dependent which it did and have since used only mefenamic acid but it’s not been as effective anymore. I was on femodette for a while and found that revolutionary for me and have only recently stopped using it as I have now had a laparoscopy and a Mirena inserted but would def suggest mefenamic acid if you’re compatible with it and have not given it a go. Wishing you better days xx

[Hansen82 in reply to Yotom]

I didn’t think you could take mefamic acid with tranexamic acid together? I thought they were from the same medicine group? I swear by tranexamic avid

[Yotom in reply to Hansen82]

I thought so too but as my periods were so heavy, long and intense I was given the go ahead to use them together. It worked wonders while it was effective but then it seemed entirely pointless when it stopped slowing my flow so I’ve since been told to stop using tranexamic acid as it was pointless to use it without any benefit...

[kelsbels88]

Hi Lilyanne96,

Sorry to hear you’re suffering. So for me controversially I bought a little machine called a Livia feel free to google it. It is potentially a little pricey and is essentially a tens machine but I found it worked really well and is soooo discreet. It did take a little while to arrive though as it came from abroad but I did a lot of research and watched lots of YouTube videos and read a lot of reviews and decided to take the jump. That being said there may be alternatives but I stopped looking when I found something I thought might work.

I also use microwave wheat heat pads and am taking a combination of cocodamol (I only take one) and ibuprofen which for me seems to be working for now until I get my surgery date. Hope this is helpful and be gentle on yourself this is not an easy disease to live with xx

[Tiger999]

Hi, sorry you are having a tough time this illness is not a nice one. I currently take co codamol and ibuprofen, some days I only need to take this first thing in the morning- always make sure you eat something with the tablets though.

I also have mefanemic acid and tend to only take this when I have a period and take it instead if the ibuprofen.

Hope you find something that helps you soon x

[Hansen82]

I take diclofenic and paracetamols for the pain outside of periods and then add tranexamic acid when I have the period. That works for me and I don’t find that the worse time of my cycle now. I also take 1000mg of evening primrose capsules to even my raging hormones . I also swear by tens, hot water bottles and heat pads you can wear under your clothes (maybe that can be an option for you as more discreet!) . I swear I coped with a natural birth simply because I was used to that level of pain from endo

Best of luck finding what works for you x

[Hajnal]

Hi,

I hope you can find a way to cope with pain. I know too how crippling can be.

For me the pill helped, but I was on it without 7 days breaks. If i had break the pain was back in 2 days. Cocodamol helped but it made me feel crap so i didnt take it. Couldnt poop, felt nauseous and like a junkie. Diclofenac was my preference.

Now im 1 year and 8 months pain free, 2 Ibuprofen on the dirst day of period. I dont take contraceptive or any other medication. I had 3 surgeries in the last 5 years. I firmly believe that diet helped a lot. I went on completely plant-based diet. Fingers crossed it remains like this. It also makes me feel im in control in my life. Wish you the best!

[Lex4]

Hi,

I would second the suggestions of heat pads and hot water bottles - I found specifically that tucking a water bottle in the back of my waistband or sitting back on it helped the most (rather than at the front as I first assumed was where the pain came from).

Everyone's different, but I also found that eating a more liquid diet in the 24 hours before my period was due (i.e. soups, stews, plenty of water) and eating reasonably little (not going hungry though - I was always more hungry just before a period!) helped: this might not help everyone though as it turns out my endometriosis has restricted my bowel and I expect that's why this helped. Worth a try though!

[Littlepeax]

Try the AIP Diet - works wonders!! ♥️💫

[luthien]

Hey, this may be a bit out there and not the normal medical route others are suggesting; have you looked into aroamtherapy and essential oil massage? It may not be your thing but worth thinking about and trying.

I've been having aromatherapy oils massage which I feel really helps a few days to the evening before my period, it helps calm my body and the oils are chosen with my pain and inflammation in mind, so specific to me. I love the 121 attention too! She combines that with a specifically dosed oil rub with again a combination of oils suited to my needs. I use this on my abdomen up to 4 times a day five days before my period and during it. It doesn't completely get rid of the pain but it definately eases it. She alters it slightly every few months as the body can get use to certain oils. It can be used with other pain medication and hot water bottles but wait about 30 mins for the oils to absorb first.

It obviously can't be used with TENS in that area but you could for example do the oils on your abdomen and tens on your lower back.

I would recommend the above! My aromatherapy massage lady is also a nurse so she knows a lot about endo and the things we go through. Mine is tailored towards stress - I find that the worry of my impending period plus PMS mood swings actually makes it all so much worse so she's given me a little sniff stick - (like an olbas stick for colds) which I can use anytime I need to relax the week before my periods. I have it with me all the time.

I'm looking into accupuncture as i've heard some women say it really helps.

I know some people say there's no evidence for alternative therapies, however I'd rather try options that have been about for centuries and see if they could help than just ignore them completely x

[CelestialFluff]

Hi. I find stress makes my pain worse too. I do take a combination of painkillers but combine this with yoga, aromatherapy, meditation, TENS and plant based diet. Sounds like farahziya you have a good aromatherapist - I feel like I have just been playing by comparison!! I may look into this further and get expert advice... yoga distracts but also loosens things up down there - evidently with endo we get very tense because of the pain and this makes the pain worse.

I have also used an app called curable. I only got to the free bit (you can pay for more but I am poor!) However it was really useful as it made me look at pain in a different way and panic slightly less. It is what introduced me to meditation. I now have an app for this and found after a while it started to improve things too although it took a bit of practise. Again reducing stress helped I think.

For me, adding all the extra complementary bits and pieces in made me feel more in control and less helpless. Panicking when the pain started has stopped too. I have other health conditions and knew fear makes pain worse but it took me a while to connect the dots with this.

Hope you find something that works for you too. Xx