Extreme endometriosis

[Dustydoggo]

Hi lovely ladies,

I have recently been diagnosed with extreme endometriosis and am awaiting confirmation on having to have a full hysterectomy. I’m in quite a bit of pain, most of the time, and was wondering if anyone had any solutions to help? I’m currently on Menfenamic acid for the pain which doesn’t seem to be working to be honest. Paracetamol doesn’t help either 😢 I’m getting a lot of pulling on my right hand side (apparently both my ovaries are completely stuck to my uterus, and bowls) and my stomach feels like I’m 8 months pregnant ! I’m really scared as the consultant said they may have to take out some of my bowls too depending on how bad it is... not sure what that will then entail 😢 sorry to rant as I know you are all suffering, I’m just not sure how to alleviate some of the discomfort and pain. Any help would be much appreciated. Take care all of you. This really isn’t nice. Xx

[TennisAM]

Hey, so sorry to hear that. Mefenamic acid only helps me with medium pain. You could try Etoricoxib which is also a NSAID, it's very good. Its primarily for arthritis but my GP gave it to me. It needs to be taken with omeprazole.

Worth discussing pain relief with your GP or consultant as there's no way Mefenamic acid is good enough given what's going on internally. If the GP isn't helpful then contact the consultants secretary so they can advise. However the GP should be able to help

Worth trying a probiotic which could help with bowel symptoms such as bloating, diarrhea, constipation etc.

There's something called Serrapeptase which can break down adhesions caused by endometriosis. Important to check drug interactions etc. I had pain from scar tissue for over 2 years, after taking serrapeptase lowest dose (80,000 iu) daily for two weeks the scar tissue pain stopped. I also think my bowel was starting to stick, after 2 months it doesn't hurt anymore. I'm pretty sure serrapeptase saved me from a fixed colon.

Really important to always start on the lowest dose to see how you feel on it. It can increase pain for a couple of weeks but it does then stop. I went up to 160,000iu daily which worked very well for me.

Best wishes

[Dustydoggo in reply to TennisAM]

Thank you for your advice, I’llLook into it all

Take care

Anna x

[Smokey2020]

Gosh can’t believe you only have mefe. I’m in the same boat as you and take dichlofenac sodium x3 a day with stomach protector, paracetamol and top up with tramadol if ever needed. I only started this routine about 3 weeks ago after an appointment with the endo nurse as I’d been left like you by the GP with minimal pain relief. I’m now so much better each day that I can function and not be in bed. Surgery a few months away yet for me but feel I can cope with the wait now whereas before I was a mess. See if you can speak to your GP again and get a better pain relief routine. I hate taking so many pills but honestly the quality of life is so much better that I’ve come to terms with it!

[Katroy646]

Hey 😌

I usually take Feminax express which eases pain rapidly... it’s ibuprofen lysine and works in like 10 mins. It gets rid of my endo/period pain everytime... maybe different for others, but I carry it everywhere for whenever a flare occurs!

Hope this helps 😘

[CryBaby91]

Non medicine forms of relief that I've found useful have been;

•TENS machine, really good for distracting you from the worst of it. Not going to take the pain away but very useful. I spent £30 on mine, it had extra electrodes too

•Heated pad, similar to a heated blanket where you plug it in and set the temperature. It has an auto shut off feature for if you fall asleep too you can lay on it and it is great for back pain, mine was about £20 from Amazon.

•Hot water bottle. I have 2 kinds, a long one which is good for back pain and legs, it can stretch all the way down your back, and the other is a basic small one which is good for tummy ache.

•Hot baths, if you have the energy of course.

•CBD oil. I find CBD products really useful, I get bath salts and everything. Certainly doesn't take the pain away but it is better than nothing.

•Cutting out certain food like wheat, gluten, dairy, alcohol etc. Some foods trigger endo, but you may want to get advice from a dietician before doing anything drastic. I just cut our milk to see if it helps, next I'm doing gluten, hoping to eventually find a balance that helps with bloating.

Other than that sweet, some breathing can be helpful for me. Bit like giving birth lol I try focus on my breath and not the pain, it's not a guarantee but it can be helpful. When used in combination with some decent pain killers and the other stuff like the hot water bottle it can be much more manageable. Xxx

[Hidden in reply to CryBaby91]

I second the tens and heat pad. I got a tens machine through the nhs pelvic pain clinic and they said some GP surgeries have some to loan out and if it works you just keep it but otherwise they could refer you to a pain clinic to look at alternative medications and things like that. I also bought the boots mini tens which is just a small patch you can Chuck on anywhere and away you go. Sometimes I can’t have the cables around me from the bigger tens machine at work so that one is a bit easier.

My partner bought me a heat pad just from Amazon which was was like a miniature electric blanket…he also got me one of the massive pregnancy pillows even though I’m not pregnant but just for comfort and that’s more just a nice thing to have when you feel a bit rubbish or if you get any nerve pains for positioning in bed! He’s a good one haha!

I did find that removing dairy helped with inflammation and symptoms, but I’m not very good at avoiding it 🤭 it depends on what type of pain you’re having and whether it’s nerves or muscles or period/inflammation type pain for what medication will help it so definitely start with your GP. It’s a bit trial and error or a mix to find the right thing. Good luck x

[Vickster23 in reply to Hidden]

I third the tens machine and heat pad!

I had something very similar - adenomyosis and endo adhesions between my womb and bowel and ovary and pelvis wall. I'm now 9 weeks post-hysterectomy and endo removal and I barely get any pain. So you really do just need to get through to your op. I'm amazed you're coping on paracetamol and mefenamic acid. I was on Naproxen, a full codeine dose which I topped up with Oramorph when I needed it. It was all managed by my GP so go back to yours and if they don't help, find another one! The only other thing I could recommend is diet changes as others have said - I cut out gluten and dairy and I think it helped - and rest - I didn't leave the house for about 4 months before my op but that's easy during lockdowns. I'd ask about hormone treatment too. I was on Prostap for a couple of months before my op. It reduced the size of womb and really settled it down my symptoms. Its not fun, I had a huge bleed two weeks in (which is common) and I took HRT to manage the symptoms but it definitely helped with my pain. Just keep pushing the doctors for what you need.

[Dustydoggo in reply to Vickster23]

Thank you for your message, it has reassured me a bit knowing that what I’m experiencing is normal and the there’s a light at the end of this long tunnel ! Im hoping to hear about a date soon, at least then, I’ll have something to work towards. Take care and keep healing xx

[Marcia71]

If you have severe endo then you need to be referred to a bsge centre so that you have the multi disciplinary team operating. Are you already at a specialist centre?Also a hyster won’t help endo it needs to all be excised at same time and hyster only helps adenomyosis- so do you have that too?