First flare up since surgery: Hi everyone... - Endometriosis UK

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First flare up since surgery

DobbysGammySock profile image
7 Replies

Hi everyone, I've just experienced my first flare up since surgery and I genuinely thought I was dying. I managed to get the pain under control with some morphine but I am so frightened of the point when that wears off.

What do you all do for aiding with your flare up pains?

So far i've tried the following:

Hot water bottle (I rely on this)

Tenns machine (not as effective)

Certain yoga positions can sometimes help me

Rocking/pacing (if I'm able to stand!)

But I feel at my witts end. I'm a nurse and cannot go into work if I have had morphine, so i'm really starting to worry how the absences are going to effect my job (i've just recently had three weeks off for emergency surgery to treat my endo)

Thanks in advance

Leanne

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DobbysGammySock profile image
DobbysGammySock
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7 Replies
StefaniaJW profile image
StefaniaJW

I would love to know your situation and try and help you better. Would you email me at s.dellarovere@live.it or send me a PM so I can send you my phone number?

veneerofclass profile image
veneerofclass

Hiya there, I’m really sorry for hear that you’ve been in this much pain. I hope that it gets easier to manage. I’m on morphine myself for flare ups so appreciate how much that affects getting to/being able to work.

I’ve not had much luck in finding things to help when it does get that bad, but I’m getting flare ups a lot less due to preventative measures. I’m on pregabalin/lyrica for nerve damage but it’s also the helped with the endo pain and I’ve had a lot less instances of being in severe pain since I’ve started this. I’m on the pill and take this back to back which mostly stops my periods. And when I’m able I do Pilates (just at home) but this has been helping to strengthen my pelvic muscles and in my case helped with the pain.

Sorry I don’t have anything better to suggest for the flare ups other than to see your doctor again and see if there’s anything else they can do? And perhaps some of the above may help you get the pain less often even if it can’t help when the pains bad, having less instances of it happening is a start. I hope you manage to figure something out with your doctors and that your managers are understanding of your situation. X

DobbysGammySock profile image
DobbysGammySock in reply to veneerofclass

Hiya,

Thanks so much for replying, it's often you begin to feel alone when you suffer with endometriosis (my support network is incredible, but it's not the same when they can't completely sympathise or understand what i'm experiencing).

I actually ended up having to see an out of hours GP who prescribed me tranexamic acid and gave me some more morphine. It's tough, i've been on the mini pill before which helped for a short while and then almost seemed ineffective, I've recently started the injection to see whether that will help, but thus far it doesn't seem to have made a tremendous amount of difference.

I hope your flare ups remain minimal! It's great to hear that someone else has been able to find treatment which works for them. I'm hoping i've started that journey and will be close to your path sometime in the near future :)

Take care x

Thecraftyadder profile image
Thecraftyadder

You may already have tried these but I found volterol suppositories really good during a flare. Before my surgery last year they were the only thing that helped and for me they were more effective than opiates for the pain. They last 18hrs which would see you through a shift if you were able to get to work. I was given some during a hospital admission and my GP was very good prescribed a small quantity for occasional use during a bad attack when I asked.

Hope the worst of your flare up is easing now! X

DobbysGammySock profile image
DobbysGammySock in reply to Thecraftyadder

Thank you, I will definitely look into this! I have previously been given a suppository whilst in hospital, but cannot think of the name of it! I wonder whether it was the same thing, I did find it quite effective too.

x

Thecraftyadder profile image
Thecraftyadder in reply to DobbysGammySock

Volterol is the best known brand name, occasionally called diclac but dicolfenic is the proper drug name. I'm sure it must be the same as you were given. Hope your GP can prescribe you some :)

Tee85 profile image
Tee85

Hiya I know what that worry is like. Sounds like you have a few worries apart from the pain which is completely understandable. To control the pain on the ward if they won't or can't administer morphine injection. They should be able to give the tablet firm oxynorm/oxycontin depending on what the Dr on the rounds prescribes you. You are not long after surgery so it's been known to give this but to wean off it gradually as it's a controlled medication usually given for cancer patients or after hysterectomy if one can't have diefine or ibuprofen meds. If you can tolerate diefine/diclac (think is brand name) you can get this as a sopository lasts about 8-16hrs from what I remember. X

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