Stage 4 endometriosis

[Bry1991]

Hi everyone I'm wanting some advise, I went in for keyhole surgery to check for endo and when they have went in they found I am covered in it, they got rid of some but it's all stuck to bowel, ovaries and bladder and they need to go back in which waiting for surgery which will be 6 month or so, I'm currently in pain and suffering my periods are bad and they fitted the coil in, they are wanting me to get the prostrap injection but don't know how I feel about it cos he explained really he wanted to give me a hysterectomy but I aint had kids yet, been in hospital 6 times in 2 weeks sin e surgery my heads a mess, don't know what to do 😢😢😢😴

[Reethi19]

Hi, sorry to hear you are suffering so much. It’s a very nasty condition. Could you revisit your options again with the health professional that you saw? I haven’t tried prostrap so can’t comment on this. Things that have helped me include depo provera, mefenamic acid, heat patches and taking ibuprofen as soon as I notice any pain. I have also given up gluten and take turmeric capsules and fibre supplements which helps with pain and bloating. I also listen to relaxation/mindfulness recordings bass around pain relief. There will be lots of comments on here about things that have helped other people too. Could you request psychological support whilst you are waiting for surgery? Thinking of you and hope you feel better soon x

[Tillyfloss]

Hi. It sounds like you are having a bad time of it. I also have stage 4 deep infiltrated endometriosis, with bladder and bowel complications to. I had the surgery then the prostap, they hadn’t realised how bad my endometriosis was otherwise I would have had the injections first. Prostap has a mixed reputation and it doesn’t agree with everyone but it was brilliant for me, I had 6 months of it before going into ivf and I didn’t have any problems, just the occasional hot flush. As already mentioned I found the endo diet really good and it might be worth a try. Cx

[mich]

Hi, sorry for your pain and situation, feel for you.

Try a TENS machine maybe?

Also heat may help.

If your coil is a marina coil, it releases progesterone. You need to give it a goodv6 months to work and know wether it is helping you.

Wishing you the very best.

Keep away from all sweet food and sugary food products as this will increase your inflammation quite often.

Change to a really healthy diet, diabetic one can help but if you have irritable bowel , too much roughage can over stimulate bowel and make it worse in my experience.

Get refferal to pain clinic.

Do stretches first thing in the morning, simple yoga type stretching.

Massage may help.

[Dee_EndoUK Moderator Endometriosis UK]

Hi Bry1991

Sorry to hear you're having a difficult time of it at the moment. Finding out that you need further surgery on top of your recent hospital visits must have been extremely overwhelming and stressful.

I'm really pleased that so many of our forum users have reached out to you - it makes such a difference to know that other people have gone through a similar experience. We also have face-to-face support groups all around the UK, where you can discuss your issues and concerns with other endometriosis sufferers. You can find out if there's a group in your area at endometriosis-uk.org/find-a...

With regards to the pain you are experiencing, everyone is different and what works for one person may not work for another. On our website we have a range of options that you may not have considered, as well as some complementary therapies that could help not only reduce pain, but also stress. You can download the entire treatment pack at endometriosis-uk.org/endome...

Wishing you all the best - take care x

[ACLParkes73015]

I’ve had prostap injections since September and my god I could not recommend them enough! All the pain and discomfort went away.

Far as the surgery I’m due to go in tomorrow so I haven’t got any advise on that yet xx