Hi my names Stacey new here .. looking fo... - Endometriosis UK

Endometriosis UK

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Hi my names Stacey new here .. looking for help with pain relief

Stacey87
Stacey87

Hi,

Looking for some help on any pain relief for endo ... usually i take cocodomal 30/500 and mefanamic acid but i think I've been using these as a pain relief that long that they dont work anymore! Either that or its getting worse.

Right now I'm curled up, burning hot, cant move, pains in my pelvic area, hips, thighs and back .. feels like my insides are being severed!!

Quite high pain threshold as been dealing with this since i was 16 so 14 years but now every month i feel it's getting worse.

Only had 1 lap when i was 24 which i found helped for about 6 months.. not sure whether its worth going through it again.

My doctor isnt very knowledgeable on endo so i havent discussed anything since i pushed them to do keyhole surgery back then.

Any help would be appreciated :)

7 Replies
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Try TENS Machine for pain. Fennel Tea helps with cramps and inflammation as does Belladona from Health Food Shop. I

Hi Stacey

So sorry things not great at the moment,I know the old methods but heat helps me a bit,I have a bit water bottle long and thin which goes around my waist and ties,makes me look like a revolutionise but get some relief,peppermint tea helps with cramps sometimes,my husband bought me an inflatable hot tub so when things are bad it soothes.Not much help sorry.

Clergy sage oil and Basil oil. Rub into the area. They say frakensense oil spelt wrong sorry. Helps to but Basil oil helped alot. I had a removal of overies and an ablation... 8 tumors and some weird thing with my tubes. all out of pain now. Hot flashes do suck. But better than the pain by long shot.

Hi I'm not sure if your the same Stacy as before anyway doesn't matter all I'd say is alot depends on what they did in the lap was it just s look or did they excise any endo . ? Also skill of surgeon and knowledge, I've been in alot of pain since a hysterectomy in 2016 I should have walked away when they started talking about leaving ovaries in! Granted not the main guy . Know it's getting a bit of rap for abuse but tradadol is a step up slightly with paracetamol and possibly ibuprofen or memfamic acid ,although got a nasty kick back if stopped same with a lot of meds it then goes to things like oxycodone I think then morphine and I found even all that didn't help .i Also got like pain in the withdrawal phase at least from tramadol but it went after 7 days of hell. I feel for you so young and I know how crap it can all be . Sorry but I'd recommend real drugs but try it you never know with this oil thing and yes it's awful being beholden to a drug you can't just stop because it will hurt your psychological and physical state just coming off but sometimes it's what we have to do or take. Lowering hormones always seems to work for me although I've been told i don't have endo !!! I used to have and it responded very nicely to zolodex and tibolone combo ( hrt add back ) . I was almost normal . Why it isn't the same after the hyster with ovary removal I don't know 🤷‍♀️ but I noticed taking less hrt helped ! Always does , but I am worse now than before I could take a whole tablet and now it's just crumbs I have which just about works . I had some adhesions divided then finally removed last year but I don't think it made any difference but reducing hrt did . Trouble is they only usually give zolodex for 6 months! Which is so unfair as you just go back to how you were after ! Hope I haven't depressed u all just adding my experience. That and work troubles constantly. Take care I hope get helped soon . I even paid of rather my mum did for private ops £15,000 as NHS too long and wouldn't help for ages at first now I travel to the south to see an expert there xxx

Thanks everyone i will give all them a try .. i already have my hot water bottle on my stomach just now lol have a couple in my office too that i use on tummy and back while i work.

Caroline I'm just new so I haven't spoke with you before, sorry about everything you've had to go through.

To be honest i didnt really ask the surgean many questions as I didn't know much about endo (still dont) they offered keyhole surgery as last resort as ultrasounds didn't pick up anything .. when i woke up after surgery i was still a bit off and surgeon told me they had lasered endo away but risk that it could come back again .. i have no idea where they zapped or how much.

Not sure if the pill was helping too but had to stop as started lethyroxine last month due to underactive thyroid.

I've also been been prescribed iron tablets and other supplements due to low b12, iron and blood count i think this was mostly due to heavy periods.

Just wish it would get better and i hope to have a family soon but no sure what my chances are depending how bad my endo is ... think that why I'm wary of more surgery.

caroljane80
caroljane80 in reply to Stacey87

no problem ha ha i always seem to be helping Stacy;s . Yes sadly im sure these medics know more and you find out after when its too late!! or retrospectively anyway.

Ive heard laser isn't really very good they reckon excision is much better the gold standard for removal, only talking from what ive heard rather than experience . Like now it really hurts so im thinking i will not take any hRT tomorrow or is it because of gravity? Because ive moved about alot today I have a pelvic toner to try counteract the gravity theory, but i dont really know. I was excised several times never made any difference to me i think.

Its sad but keep trying but i wish they'd just say if they cant cure it rather than meddling and walking away !!!

god bless xxxx

Hello Stacey, I hear you as when the pain is so bad I don't find any relief through painkillers either (even Tramadol or Codeine) and the doctors will not give me anything stronger.

I'll be travelling soon and so in order not to encounter problems with customs/traffic controls I'm trialling no painkiller usage (difficult!!!) and instead have purchased Voltarol Gel (high strength version, so usually behind the counter or locked away in pharmacy/drug stores). I was initially going to buy some heat patches, however as I will need to be sitting down for long periods, decided not to go ahead as they will be restricted by clothing and body position.

Can't say it's magic, however I have noticed it slightly numbs some of the tension/pain/swelling (caused by pulling pains in ovary and hip bone area), as has a cooling effect and no strong "give away" smell (so can also be used in public/shared places like work,etc.). Saying that, do not believe the hype that it lasts 12 hours! (fat chance!!), but at this stage any relief I can get is welcomed.

I have also experimented with Tiger Balm rub and that also gave some light relief (just be careful not to use with valuable clothing, as stains!)

The other thing I would recommend is to be referred to a Pain Management Clinic, they have more knowledge of how/what to use to improve patients' quality of life by treating pain using different strategies such as pelvic physiotherapy, TENS machines, nerve pain medicines,etc.

I still haven't approached one yet, as waiting for a referral letter to reach my GP and then take it from there.

Best of luck and remember you are not alone in this battle!

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