Is it normal to be in THIS much pain?

[Somuchpain_]

The pain is crippling. I’ve had 2 ultrasound scans which showed nothing. The pain comes and goes in waves. On a bad day it’s really bad. The last 7weeks the pain seems to be getting worse. I’m waiting for a date for my laparoscopy. Is it normal for the pain to be mild one day and extreme the next day. Some days I’m having to take time off work or I find myself trying to convince people that I am in agony. I don’t even know what pain killer to take anymore because paracetamol, ibuprofen and codeine don’t seem to touch me anymore. Please help!

[Ellletay]

I have no advice as I am having the exact same struggles. At the moment I am in constant pain, sometimes bareable and then all of a sudden the scariest pains will appear. Ripping pains, stabbing pains. I'm currently waiting for an appointment with gyno after finally finding a GP that took me seriously. Hoping I won't be waiting too long with the delays due to Corona 😑

[Somuchpain_ in reply to Ellletay]

Update girl! I’ve had my pre op assessment so things are moving. I’m continuing on Decapeptyl, to tibolone and mefenamic acid. I take the odd codeine for days I can’t stand the pain. The lower left back pain is a killer though. I’ve had it for a few weeks now

[SKhan13]

Until you have your Lap & they can give you more info, I would suggest starting to do exercise, in particular to strengthen your abdominal muscles. What I found - before I had my Lap and before I went on the Pill to manage my Endo - as soon a I joined the gym, the pain reduced quite a bit. About 2 years ago I also started Yoga. Along with the Pill, my pain level has been reduced by about 90%. I now have a period once every 3 months as I take the Pill back to back. I can still carry on life as normal during those 7 days and sometimes there is almost no pain. Just remember where your pain is. Strengthening that area will help you ALOT xx

[Somuchpain_ in reply to SKhan13]

Thank you. I’m a runner. I’ll try slightly increasing my runs here and there and see if that helps. I used to think that running would aggregate it but no harm in trying eh

[SKhan13 in reply to Somuchpain_]

No harm at all lovely. Take it easy and only when you are feeling up to it. Deffo look into doing yoga though. I cannot explain to you how much my internal strength has grown. Even for now if you just follow some basic postures off YouTube x

[annatonina in reply to SKhan13]

Endometriosis UK have started running virtual pilates sessions on some Mondays which are aimed at abdominal strengthening, I keep meaning to dial in but keep forgetting...

[SKhan13 in reply to annatonina]

Deffo look into it - within a few months you will start to notice a huge change in how much pain you are in

[LavenderLady12]

Hi, it's totally normal if it is endometriosis. I remember having these same struggles prior to diagnosis, it's actually part of why it often takes so long to diagnose. Endometrial tissue responds to hormones as well as pulling on things if you move in a certain way, and bleeding during your period. I would say try some relaxation yoga, I find the breathing technique so helpful for any pain, and focus on relaxing any tense muscles (it really helps). Heat pads, baths and peppermint tea are my absolute go to for a flare up. Also, if there are foods that cause you to 'back up' avoid them because they only increase pressure and cause pain.

Unfortunately, endometriosis is really painful and you do eventually get used to a baseline level of pain during flare ups, and find techniques that work for you. The beginning is usually the worst, but it gets better. Keep your chin up, this group is so helpful and if you need any help, just ask xx

[Imyogi]

I feel you, I had my surgery in Feb, they removed my damaged tubes but couldn’t remove any Endo as it had fused everything together - uterus to rectum, covered my ovaries etc. Since surgery my pain is as you describe. It was so bad I called the ambulance but got sent home with the same pain killers I was already on. I’m waiting to see the specialist about a large cyst in my ovary but in the meantime they put me on a Prostap injection. Really suffering this month but the second injection is supposed to really help with the pain but it does bring on a fake menopause.

My electric heat pad and ova tens machine help a little but some days I just can’t move. Endo does suck. I’m still on my journey but everyone is different.

They may go in and remove any Endo and you’ll be fine. You’ll have to wait and see. But def invest in an electric heat pad/blanket

[Rjb_88]

I find that mefenamic acid is good with cocodamol, it helps me a lot but it has to build up a few days before it works so start it straight the way. It’s expensive so GPs aren’t as keen to prescribe it but it’s good and it’s cheaper than an a&e session for the NHS!