endometriosis

[Addy2016]

Hi all, I’ve been suffering with pain for years at first I thought it was back related pain from having my children but after lots of tests they’ve found endometriosis in my pelvic ligaments, I’m currently on a waiting list for surgery and I’m taking double desogestrel tablets and strong painkillers but I’m in the worse pain ever to the point it’s affecting my day to day life and work, can anyone give me some remedies that will help pls

[Moon_maiden]

Hi

Sorry it’s so bad at the moment. Really wish I had a good remedy, I still find heat successful on top of the medication.

I suffered bad periods for years but ignored it. It’s a horrible disease.

[Tangoandmax]

Hello,

I’ve just had surgery for endo on pelvic walls and ligaments.

What painkillers are you taking? I’ve often had to be on an opioid, anti inflammatory, wear tens machine on front and have hot water bottle on lower back. There isn’t much of a remedy I’m afraid but the combination does make me more comfortable.

[Addy2016 in reply to Tangoandmax]

Hi I’m taking zapains and naproxen, they literally don’t make a difference at all, the pain is literally travelling all down my legs up my spine. How are you now with the pain after surgery? Has the Endo pain gone ?

[Tangoandmax in reply to Addy2016]

Hi, that’s the same as me, meds wise. If it’s not taking the edge off at all, I would go back to gp and ask for other options. I’m actually going to be making an appointment for the same this week. I really suffer with the leg pain, sometimes it’s so bad I can’t be upright 😕

As for pain post surgery, I’m being told it’s too early to fully asses. I’m seven weeks post surgery, consult said it would take 4-6 weeks to heal and then months to settle/see benefit. I also have Adenomyosis, post surgery I’ve still been having severe bouts of pain, pain down the legs. Some days are good some are really bad. I’m currently having my first period post op and the pain is worse than before, but I’ve read that can be normal. I’ve still got hope, struggling to be patient though. I had no choice about the op, needed cervix treatment and organs detaching from one another so we can try for children. It’s hard because I can’t differentiate between endo/Adeno pain xx

[Addy2016 in reply to Tangoandmax]

How long did you have to wait for your surgery? I’ve been on a waiting list now since January this year and the estimated time is up to 18 months. Just want to get my life back to some kinda normality as it’s effecting my work, my bosses are male and young so they don’t understand what I’m having to put up with on a daily basis.

[Addy2016 in reply to Addy2016]

See I’ve had a MRI which has confirmed endometriosis on my pelvic ligaments but said they won’t know what else is going on until they’ve gone inside to have a look, sometimes it’s difficult to have a wee so I’m thinking it’s effecting my bladder

[Tangoandmax in reply to Addy2016]

I was extremely fortunate as my surgery was expedited due to daily bleeding and the biopsies/treatment needed on my cervix. I was referred to the specialist centre for surgery in Feb and I had surgery in August. My initial referral to Gynaecology at local hospital was November 2022 😔 Biopsies have thankfully come back clear for anything sinister. The standard wait time for surgery at my local specialist centre is 32 weeks, it’s appalling.

I’m sorry to hear that your management aren’t very supportive, I can’t imagine having that to worry about on top of struggling with this every day. Do you have a HR team/occupational health you can involve should they become difficult?

[MRBO]

Hello, I’m so sorry to hear that you’re in pain. I would really recommend the book ‘healing endometriosis naturally’ by Wendy Laidlaw. In this book she mentions the use of bio identical progesterone cream as it has no side effects. I am in the same position as you and am going to give it a go. Also what’s worked for me is eliminating things from my diet such as coffee and alcohol but these things might be different for everyone so also look into the AIP diet and check out endo spectrum on instagram for more info on this. Really Hope you feel some relief soon xxx

[Addy2016 in reply to MRBO]

Hi thank you I will give this a try 😊

[Shabs2024]

I have been the same, i have stage 4 endo. Waiting for surgery, i have completely cut out caffeine. Only decaf drinks, i have completely cut out dairy. And i have noticed a difference this month. I am working on gluten and sugar too.

[MRBO in reply to Shabs2024]

Heya thanks for sharing. Do you have any dairy alternatives you’d recommend? I’ve heard goats milk can be a good alternative.

[Shabs2024 in reply to MRBO]

I haven’t tried goats milk. I use almond or oat milk.

[QT76]

Hi, sorry to hear you are in a lot of pain. I lived on co-codamol and mefanamic acid along with hot water bottles. Spent a lot of time in bed on the bad days. It eased it though, different meds work differently on everyone, so maybe try others. Hope your surgery comes round soon xx

[Addy2016 in reply to QT76]

Hi yes I think the pain meds are not working because I’ve literally been taking them for years. My body is immuned, I’ve asked for something different but because I’m on an anti depressant called sertriline there’s not much more they can give me that won’t interact. Have you had surgery or are you waiting?

[QT76 in reply to Addy2016]

Well hopefully you will get surgery soon. I had a bad miscarriage 9 years ago, had surgery after that then 2 boys, didn’t have any problems for 4 years after the kids. But over the last 3 years it’s been a bit hit and miss but now in the perimenopause.

I believe the surgery after my miscarriage helped loads.

[Cocoacupid]

hun sorry your pain is severe I advice you to see a pain clinic dr and say you have endometriosis and they can give you stronger pain medication . While I waited for operation it was a years wait was in terrible pains but no matter what my gp gave me for the pain it didn’t help much but then the pain clinic dr said as I suffered so long with the pain I have fibromyalgia as well . Take it easy even pain clinic dr can be a little wait but they look at you holistically .

[BloomingMarvellous]

Hi Addy,

Sorry to hear about your situation and the wait you are having to go through.

You might be better off with a central pain medication that works on nerve pathways as they are often involved with ligament Endo. Endo tissue itself is nerve rich with fibres that are minus the protective myelin sheath on them. So you are literally dealing with raw nerves with Endo. Opioids and anti inflammatories don’t function at that level. Your GP should be able to help with a trial of either amtriptyline or its generally better tolerated nortriptyline. The lowest dose of the latter is 10mcg but I found that sent me to sleep most of the day and I had no brain but it knocked the pain out . After getting the dose up after 4 weeks ( takes two to really take effect ) I dropped it to half the tablet nightly of 5mcg - for me it works fine.

I combine it with other things too - best book for research based alternatives I’ve found is by Katie Edmond’s Heal Endo. My best help has been from high grade omega 3 for nerve pain, reservatorol and quercitin with bromelian. Do get your GP to do a Vit D test because the worst pelvic pain and Endo into the nerves is with the greatest deficiencies. If you are low then it will need a D3 supplement with vit K. You may need to add calcium into the picture as pelvic floor issues with Endo are often hand in hand with a low level of calcium. It’s worth researching pelvic floor physio and look at the referrals in the book for that. Taken gently it can significantly reduce the pain. More info is accessible on an instagram account @endometriosissummit . They have a lot on ligament Endo that’s worth boning up on.

Lastly I use Curable to help with the pain. You can trial the app for a couple of weeks free to see if it may help you. It’s certainly not a cure but a great management aid.

[Elsie400]

I found acupuncture and osteopathy were amazing. That's exactly where my endo was first time round. I was on the mini pill continually too with no breaks. I have had it for 32 years an now peri menopausal and it is back with a vengeance. So important to get the correct pain control x