Effects of pain vs effects of meds

[PenelopeClearwater]

After a full hysterectomy three years ago, I’m struggling with nerve damage (caused by 15 years of undiagnosed endo) and excessive internal scar tissue, all causing excruciating pain. The GP keeps increasing my doses of pregabalin, which helps the pain (until I get used to it and need a higher dose), but I also get to the point where I can’t speak properly or remember what I’m doing - I basically feel incredibly stoned. I’m in the process of applying for PIP, but I really want to get back to work. Either way, I can’t function and I feel really lost and let down by the healthcare system. Any advice? 😔

[dodgeviperdiva]

hi hun how's u? hope you are well? I feel your pain! I'm currently on 30mg/ph butrans patches, 30mg dihydrocodine and 600mg of pregabalin (which due to a cock up at the chemist ive spent the wkend withdrawing from!) I also smoke cannabis for pain (It works).

I've recently been awarded pip for endometriosis. I used to be a fully qualified Councillor but haven't been able to work for yrs on my good days I make tutu's and sell them 😂

I understand you when you say you feel lost and if you ever want to talk plz msg me, I'm in the same boat xxxx

handmade tutu, a distraction technique to help with pain xx

[Sheep2016]

Hello Penelope,

I hope you could find a new GP who will listen - your medical history and present nerve-damage trouble. I am into my 5th year now (only ovary retained) but can say, is back to normal life now. You will probably need recommendation from GP to find out the base cause. Increasing pain killer dose is not a good lifetime solution. Hope you've found one by now.

[PenelopeClearwater in reply to Sheep2016]

Thank you 😊 you’re absolutely right. It’s advice I give, but never follow through with for myself. I will try. I’m so grateful for this forum - I don’t feel so alone with it all anymore ☺️

[Sheep2016 in reply to PenelopeClearwater]

Please do not feel alone in this. When I shared mine, I found comfort knowing I'm not alone too, learnt a lot about endo and related info and about my own body too.

Take heart, ditto to SallyBowles, don't give up on finding a listening specialist. In the meantime, try it reduce pain killer in exchange with natural oil, rest when possible to minimise long term effect.

[SallyBowles]

Hi there - I’m also post-hysterectomy - five years ago, and still suffer from the effects of Stage 4 Endometriosis having played havoc in my body for over 20 years before being diagnosed. I also still have daily chronic pain from adhesions but currently manage it with codeine. I was also on Nortriptilene for nerve pain but have recently come off this due to a glaucoma scare. The first thing that struck me is that you are relying on the GP to manage your pain and I don’t think that’s the best way forward. I agree with Sheep2016 below, the GP seems to be treating this as your only pain management option. It isn’t.

You should ask for a referral to either a pain clinic or an endometriosis specialist centre. Don’t take no for an answer. If the GP resists, see someone else or if you can afford it, seek out a private consultation. Don’t give up- there is more to offer and your life is just that, your life- it can get very small with constant pain but you deserve to be offered more than one option.

[PenelopeClearwater in reply to SallyBowles]

Trying to reply to you, I managed to reply to myself… 🤦🏻‍♀️ hopefully you’ll see it below… I’m very new to using this app 😅

[PenelopeClearwater]

Hi Sally

Mine took about 15 years to get diagnosed and then several years until it was taken seriously, by which time, I had the nerve damage. My sister had to have part of her colon removed as a result of untreated endo - it is just appalling how long it takes medical professionals to look into it and take us seriously.

Anyway, I didn’t mean to rant! Thank you for your reply - I really appreciate the advice and will go back to the doctor and push for more answers.

I wanted to ask whether you had your ovaries removed, because I had a full hysterectomy and have been really noticing just how much our hormones regulated the whole body!

[SallyBowles in reply to PenelopeClearwater]

No problem! Rants are allowed

Yes I had a total hysterectomy, I'd already had my right ovary removed with previous endo surgery, but by the time I had my Hyst the damage in my pelvis was so widespread (inc bowel) they took uterus, cervix and remaining ovary all out and excised a lot of endo. It was 5 hour surgery with a bowel surgeon present. I'm very happy I had the hyst, I was under no illusions I would probably still have adhesion problems but the benefits have been huge.

In terms of the hormone drop. I hear you! I didn't get much in the way of hot flushes but I had insomnia for about ten years, due to the Zoladex/Prostap courses messing with my hormones. So I've probably been in and out of menopause three times including the 'final' surgical menopause. It was making me completely demented but resisted HRT for a long time as I was so scared of it flaring up any remaining endo. I did extensive research and got my lovely GP to refer me back to my original hospital who ran a Menopause clinic. Same nurses who worked on the Endo specialist centre. I was put on a very low dose oestrogen only patch and it's been a miracle to be honest. I now have the best sleep I've had in years which is obviously life changing.

If you are hesitating, it takes nothing to find out your options. I wish I'd done it sooner as the insomnia was ruining my life. There is a really good resource here, and specific advice for surgical menopause and endo.

menopausedoctor.co.uk/resou...

Anyway, good luck, I'd best go and do some work now!

[PenelopeClearwater in reply to SallyBowles]

Thank you so much for taking the time to reply - I really do appreciate it. I can’t focus properly at the minute, to read, so I shall have a look later 😅 the pregabalin messes with my cognition…