How to end the suffering of Endo???

[valgal76]

Does anybody have any ideas on how to end the pain that is part of Endo??, i woke up screaming in pain this morning, and i got a little depressed about it this morning. Has anybody had their endo surgically removed?, is that even possible?. I thought going through the menopause would stop this pain, but it hasn't. I've just taken my first batch of painkillers, so feel alright at the minute. But boy did it hurt at 7:30am!!!!!

[Littlepeax]

Diet was a massive factor for me and endo pain. Certain foods can make inflammation alot worse for me. I did the AIP diet check it out online xxx

[Salamander88]

So sorry, its so tough isn't it. Are you under a gynae doctor/and specialist and if not can you ask your GP to be referred to one? For me a combination of the mirena coil and mini pill together have made a big difference (plus heat pads and pain killers when needed). But now it's still not enough. It's taken a very long time with the pandemic etc but the gynae drs saw some endo lesions on one of my ultrasound scans and so I'm currently waiting to have keyhole surgery to try and remove those which I hope will help at least for some time, I know it may not for ever/whilst I keep having a cycle that more my form. Obviously its different for different people and after menopause I assume they may suggest different options. Definitely think it's worth pushing to try and get the right expert advice (?and maybe surgery if its right for you) to try and get your pain properly controlled, it's so easy to get fobbed off as women isn't it... thinking of you and really hope you can find ways to get your pain better managed!! Xxx

[valgal76 in reply to Salamander88]

Thanks salamander. I have the mirena coil in me, but due to a health condition i can't take the pill. Its like one step forward and another step back i find!. I'm seriously thinking of getting a referral, so we'll see what happens. What i am hoping for, is that they do my pap smear and coil change at the same time, that would make me feel a lot happier, being under anesthesia! Val

[Salamander88 in reply to valgal76]

That sounds like a great idea if possible. Really hope you do get the help you need! I would definitely consider trying to get a specialist referral so you get the right care. I know that for some health conditions the regular pill isn't allowed but the mini (progesterone only) pill is, so it could be worth double checking that if you still find you have symptoms/a cycle despite the mirena. Take care x

[Avourneen]

Hi Valgal,

Surgery is the only thing that makes a significant difference. But it's difficult to find a good surgeon and even then it might come back. You can take the progesterone only pill to stop periods they helps a lot with the pain but it doesnt stop the endo growing.

A lot depends on how bad it is you are like me in your late forties so you've probably had it for years. At first it just hurts really badly when you have your period then with time it keeps growing until you have pain all the time.

You should get a good scan so you can see where it has spread to. I wish I had got mine checked much earlier before it had done so much damage. Mine has glued my ovaries to my womb and my womb to my bowel and has grown really extensively through the bowel. If it's left it will damage kidneys and grown into diaphragm.

I had really bad pain for ages before the doctors checked me then i was sent to a non specialist gynae for ablation (it doesn't work). The pain really retreated for about three years but because I only had ablation it came back. Then it gone much worse again i had a excision but the surgeon wasn't geat and he left a piece in the bowel.Now 3 years later it is really bad again.

So what I'm saying is get a proper scan then you can see exactly what is wrong, find a really good surgeon who knows what they are doing and get it cut out this should give you a few years with less pain ,sometimes it gives people years and years with no pain but you really need to get a surgeon who knows what they are doing not just a random one with not much idea of endo. If I had had good excision surgery the first time I probably would not have neeeded more now.

You are 46 if you have a succeeful op it might take you up to menopause and things might get easier then (not that they always do) when your periods stop.

Good luck it is a hateful disease and you will need to be strong.

[valgal76 in reply to Avourneen]

Hi Avourneen, i am seriously thinking of getting a referral from the doctor after reading everyone's views and suggestions. I can't stand the pain anymore, i've tried so hard to deal with it on my own, but if they can offer surgery, i'll take it. I'll try anything. Might try to get my painkillers looked into, see if its worth going up a dose. I'll see what happens, or if i remember to ask the doctor!! Many thanks, Val

[Dogmad6]

I assume you've already gone through the menopause? I also have post menopausal symptoms and I sometimes wake up in unbelievable agony, usually in the middle of the night. I've had a hysterectomy and oopherectomy 18 years ago. I agree with other posts, try and find a good endometriosis specialist and get a referral. You need to know what is going on.

I've had 5 operations but nothing recently. Excision surgery is the best option as someone else has said.

I stick to the low fodmap diet which has helped with my digestive symptoms. No other diet has ever helped me in the slightest.

Good luck, it's a horrible nasty disease and so difficult to cope with. Only people who have the illness have the least idea what it's like. xx

[valgal76 in reply to Dogmad6]

Thank you dogmad, i had another painful time this evening, but now i've taken my painkillers and the proper dosage, it has eased me into feeling no pain, thankfully. I would go mad if i didn't have painkillers. My aunt regulates what i take as they are a trifle addictive. But people who don't suffer with Endo, just don't understand.

Best wishes

Valx

[BloomingMarvellous]

Menopause isn’t the end for some women - only a percentage so don’t feel alone. It’s worth asking for them to check for Adenomyosis. It’s often the situation that endo can have a fest at the menopause process with the chaotic hormones triggering more inflammation and pain.