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Coping with Endometriosis pain

(24 Posts)
onecrazycook Mon 25-Sep-17 20:12:15

Last year I suffered a miscarriage and during my ERPC it was discovered that I have Endometriosis. This was news to me as I'd not suffered any tell tale pains, but in the last 6 months that's really changed.

I've had a mirena coil fitted as I was told that it was the best option to control it, but I seem to have strong period cramps almost every day now, with some spotting. I simultaneously get a pain under my right rib on the far side.

I finding it really hard to deal with the pains now and wondered if anyone has any advice or tips on how to relieve it.

onecrazycook Mon 25-Sep-17 22:10:25

Anyone? sad

MyBeloved Mon 25-Sep-17 22:14:01

So sorry youre suffering. Nothing really worked for me, including the Mirena Coil.

I find hot water bottles and salt baths soothing, and also take cocodamol and naproxen.

I'm having a hysterectomy in about 6 weeks.

Good luck smile

Dee03 Mon 25-Sep-17 22:24:55

Hi....I've had endometriosis for over 20 yrs now....being on the pill worked for me but I had to come off that about 4 yrs ago due to my weight confused I tried not being on contraception at all but just couldn't cope with the pain/cramps/greasy skin and hair/painful boobs etc so I had the implant fitted.

The first one I had was absolutely fine, no issues at all but I when I had it changed last year I've had nothing but hassle....18 day periods, spotting, some cramps between periods, painful boobs still, 1 day period then nothing for a week then full on 7 day periods etc...I'm going to speak to my dr in two weeks as it's getting me down now.

I've been asking for a hysterectomy for years now but they won't do it....I'm 44 with 3 older boys.

The dr always mentions the coil but I just don't want it.....I don't know what the answer is.....but I just can't live with the pain of endometriosis sad

Bunnyfuller Mon 25-Sep-17 22:57:41

Dee... To jump in, your periods messing around is possibly peri-menopause and not the implant. Just a thought.

I also have endo and also adenomyosis which is the same thing but in walls of womb. A life of painkillers I'm afraid :-/

Dee03 Mon 25-Sep-17 23:13:35

Maybe....I didn't think of that to be honest blush I'm going to see what the dr says...I may get it taken out and try no contraception for a while and see what happens as on this implant I'm not losing any weight either and I do slimming world and go to the gym 3/5 times a week but on the last implant I lost 1and a half stone! (Not over the whole 3 yrs, during the last couple of months) might not be connected but it's all just annoying!

The only meds that helped me with the pain/cramps was ibuprofen, so I lived on those which isn't great either

barnacharmer Mon 25-Sep-17 23:27:51

I don't react well to hormones so have never done more than a year on them. Be very wary if you are offered progesterone only pills - a common side effect is depression. I had it and it took at least 6 months after I stopped the pills to get back to normal.
I have endometriosis and adenomyosis too. I used a tens machine when the pain was really bad building up to my last surgery. I used to wear it when I was teaching. The control panel was on the waistband at the back of my trousers and I used to wear long cardigans to hide it.

onecrazycook Tue 26-Sep-17 09:11:41

I never thought about a tens machine! What a good idea! Went to sleep with a hot water bottle last night but it was super uncomfortable so looking for a wheat bag now.

No painkillers seem to touch it 😩

AttilaTheMeerkat Tue 26-Sep-17 11:31:57

You have my sympathies and I would seek further help now.

I would ask your GP for a referral to a gynaecologist as the Mirena coil does not seem to be working out. I found that the only way to rid myself of the pain due to endometriosis apart from taking the pill without a break was to actually have laparoscopic (keyhole) type surgery to laser it out.

barnacharmer Tue 26-Sep-17 12:33:45

Tens machines are supposed to continue to be effective after you unplug too, it's a long time since I researched it but I think think pain messages to the brain are disprupted for a while after use. It should give you long enough to get to sleep

Babymamamama Tue 26-Sep-17 12:44:40

Some options are: contraceptive injection or pill as they will dramatically reduce periods and therefore period related pain. My endo was totally masked until I came off contraception and tried to conceive. Pain relief: naproxen and diclofenac are pretty good, hot baths and hot water bottles sometimes help. Longer term: mine was sorted by laser removal under general anaesthetic. I don't think I would have managed to have dd either without this surgery. Definitely ask for a referral to a Gynae who ideally specialises in endo and laparoscopic surgery.

thinkingaboutfostering Tue 26-Sep-17 12:48:42

Heated blanket! Was a life saver for me with severe menstrual pain.

onecrazycook Tue 26-Sep-17 15:17:56

Thanks so much for all these replies. It's given me a bit of hope!

TammySwansonTwo Tue 26-Sep-17 17:40:03

It could be the coil causing these pains. Here's my epic tale.

Diagnosed with endo 13 years ago after 10 years of pain. Had many surgeries and tried every treatment. Five years ago I caved and agreed to the one remaining option: mirena coil inserted during a lap.

Within a few weeks I had awful contractions for at least 8 hours a day. Full blown, couldn't talk through them. Agony. Saw consultant - he said I had to give it at least 3 months. On that date I called my GP to book to have it removed. Had to wait around 6 weeks for a double appt with nurse and doctor. Doctor tried for 30 mins and couldn't get it out - strings were too short. It was so painful. She then referred me to the hospital to have it removed under sedation. Got date for consultation - turned up to find they were attempting removal with no sedation. A very traumatic hour later still no coil. Ended up needing a scan and then surgery to have it removed. contractions stopped immediately after having them the entire year. It is the work of the devil, i tell you.

Did they remove the endometriosis at all when it was diagnosed?

TammySwansonTwo Tue 26-Sep-17 17:40:51

Definitely look for a specialist, one who does excision surgery - laser and diathermy only burn away the surface, not the deep disease.

RonniePasas Tue 26-Sep-17 17:57:08

Poor you, it's horridflowers

The only thing that helped me (apart from a couple of hospital admissions for Ketamine injections) was chemical menopause injections , which are the size of a knitting needle and go in your tummy. Even then, it got worse before it got better as there is a phenomenon called flare effect where your own hormones have a massive last ditch effort and go bananas.

But since then, all ok and now through natural menopause - a bit early

onecrazycook Tue 26-Sep-17 22:11:02

They did remove the part they could see at the time of the ERPC, but I'm certain I've got some up under my right rib. I had an MRI scan to check in March but I never did get the result. Not surprised as the hospital involved in my entire pregnancy and miscarriage was unspeakably shit.

I had the coil inserted almost under duress. The surgeon doing my ERPC was insistent I should have it inserted whilst I was under. I wasn't that keen but was too upset to argue at the time.

I think I need to make an appointment to discuss this then. I kind of just hoped it'd never really affect me much as it never did before. Clearly not the case

Dee03 Tue 26-Sep-17 22:40:17

Did the coil not help at all?

My dr keeps on and on at me about having one but I really don't want too hmm I'm going to ask to have my implant removed at my dr apt in 3 wks as I'm having issues with this one and I just want it out now.

MyBeloved Tue 26-Sep-17 23:30:42

The coil helped initially, but I blame it for exacerbating my endo overall. By the time I had had removed I was doubled up in agony and passing golf ball sized clots. It also gave me cervicitis and I felt constantly irritated.

Dee03 Wed 27-Sep-17 08:46:43

Oh that's not good. Thing is my dr keeps saying unless I've tried every form of contraception then I definitely won't get the hysterectomy I would like, so I might have to just bite the billet and try it

MyBeloved Wed 27-Sep-17 21:33:29

Dee, that is basically what I was told too. The medical profession does seem to like pushing this device. Who knows, it might work for you, but just keep an eye on any unwanted side effects. If you want rid of It, insist your doctor removes it as they do try to get you to keep going with it, insisting it will get better!

I hope you get your hysterectomy. I am counting down the days until mine flowers

Dee03 Thu 28-Sep-17 11:57:59

Ah thank you. Good luck with yours.

If I agree to try the coil I want the dr to promise that if it doesn't work for me I will have it's just such a nightmare! I'm now worrying that she won't agree to having the implant removed ASAP, but I've got over 2 yrs to go until it's due to be removed and I'm not waiting that long hmm

MyBeloved Thu 28-Sep-17 18:59:27

Just remember it is your body. If the doctor will not remove your implant or coil, tell them you so not give consent for this medication to continue. Alternatively, go to the family planning clinic and they will remove it no questions asked x

Dee03 Thu 28-Sep-17 20:09:19

Oh I didn't even think about the family planning clinic, thank you. smile

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