Help please: Hi all, I'm having a hard... - Adenomyosis Advic...

Adenomyosis Advice Association

823 members157 posts

Help please

Nicgoody profile image
7 Replies

Hi all, I'm having a hard time, not sure what's going off but long story short it's similar to all of yours, however I don't suffer with prolonged heavy bleeding, but the back, pelvic, pain an sciatica pain are horrific, sometimes sex is painful, I've had the injections to start the menopause however that ended due to an allergic reaction, last September, but during that time I was pretty much pain free, the doctor at the hospital says he won't go down the hysterectomy route as everything looks OK and the leg, hip and back pain might not be related,!! Total hypercrites as the reason for doing the injections was to see if that helped, but because I don't have the long heavy periods I don't fall into the category, my scan revealed now endo, my mri revealed a bulging lower disc, at my wits end, everything seemed good last year when I was on these injections, now it's back to sleepless painful nights, when I had my first period after the injection wore off it was OK no pain, the second one was a bit painful with sum leg pain, this last one I had was worse more pelvic pain, sciatic pain, always right leg, so to me I can see a pattern,

Anyone out there that's similar and had the hysterectomy and been OK after??

Just feel like I'm in limbo now

Thanks

Written by
Nicgoody profile image
Nicgoody
To view profiles and participate in discussions please or .
Read more about...
7 Replies
ajb1969 profile image
ajb1969

Hi,

Sorry to hear about all the pain you’ve had to go through and still suffering.

I’m similar to you, apart from I don’t have sciatica pain down my leg.

I have severe agonising and excruciating lower back pain and pelvic pain. I have adenomyosis, fibroids and recently found polyps, which didn’t show on the ultrasound.

Gynaecologist have refused a hysterectomy for me, they don’t think the pain that I’m suffering with is from adenomyosis and they want me to wait for my menopause, as I’m nearly 52.

They recently started me on Provera the progesterone pill. Which has stopped the sporadic bleeding, however it’s not stopped the pain at all.

I’ve been taking that for three months, three times a day. However the pain is still horrendous.

I am thinking of speaking to my doctor about the medication, I have previously read about but can’t remember the name, which you mention, which brings on the menopause, what was the medication name again, if you don’t mind me asking?

I’ve got a doctor‘s appointment tomorrow and I might discuss this, as I just can’t stand the thought of another horrible episode. I Can’t believe I’ve suffered with this for so many years and I’m still here.

But you’re not alone, there’s a lot of us suffering. I’ve been advised to go private and get a hysterectomy but I can’t afford it.

I don’t see why I should go private when I Haven’t been able to work, for over eight years because of ill health & because of this.

Sorry that’s my little whinge out of the way :) I hope you’re having a pain-free day today

Amanda

Nicgoody profile image
Nicgoody in reply to ajb1969

Hi, thanks for the reply, I'm not sure what it was called just that it medically brings on the menopause, it was fantastic, I was virtually pain free for 5 months, then I had a reaction too it, my doctor prescribed pill before that but it made me miserable, I've recently had a letter from the hospital saying I've no abnormalities, which seems strange considering they induced menopause to see if it was adneymyosis and my periods causing issues. I've had 3 periods since coming off it and to be fair they've never been as bad as before, however it's still very painful an causes the sciatica, so until the doc phones me next month to discuss what's next I'm left in limbo. Definitely ask for the medically induced menopause it's a needle in your bum every 3 months, the side effects of hot flushes varies, but I thought it was worth it, good luck

ajb1969 profile image
ajb1969 in reply to Nicgoody

Hi

Thank you for the reply, that made me laugh when you said it’s a needle in the bum but who cares if it helps with the pain.

I showed off, ‘what Felt like the whole world’, my posterior, as the operating theatre was full of nurses and Drs. I recently had some injections, it was called a low volume, caudal and ganglion impar block, to help with this pain but unfortunately it hasn’t worked, well not For this labour type pain I keep having, but my lower back feels a lot better, fingers crossed 🤞

I walked from my doctors surgery yesterday, to a local shopping centre and I couldn’t believe it. I didn’t have any pain at all. I daren’t even speak out loud, just in case I jinx myself ha ha

It was lovely to hear from you, fingers crossed you have lots of pain-free days and you get the help that you need, soon.

Amanda

Nicgoody profile image
Nicgoody in reply to ajb1969

Is your pain all the time? Mine starts up a week before I'm due on, continues while I'm on an then ends, but I'm left with dull like contractions for a few days, it's just the leg an back, it interferes with walking, wakes me up at night, it's terrible

ajb1969 profile image
ajb1969 in reply to Nicgoody

At the moment, it can be at any time, Day or night and I don’t have a set pattern.

I did have a set pattern about a year ago for 18 months, where it was every single day and a week off and sometimes it still happens that way but at the moment, it’s all over the place and I don’t have a pattern.

I spent all of last August and two weeks of September, in pain every single day and had to sit everyday with a cold compress and the hot water bottle, after taking two naproxen everyday for a week, the intensity of the pain subsided a little but then it still really hurt and was painful but it wasn’t intense every day, it’s very confusing and I’m sure the doctors don’t believe a word I say.

When the pain becomes so intense I just take naproxen and I take an extra morphine tablet and double my pregabalin and take a load of paracetamol.

I’m obviously taking an overdose but I don’t care because I’m in so much pain because the doctors don’t seem to give a damn, anyway I’m still here :)

Nicgoody profile image
Nicgoody in reply to ajb1969

Oh dear that sounds awful, I tried the naproxen, made me ill, u could do with being hooked up to a drip hahahaha, I hope you get some resolution, when you see them, stamp your feet an tell them enough is enough, inject ure bum with that menopause stuff!!!You can't live like this it's like waiting for menopause before having a better quality of life an that could be another 8/9 years, how's ure insides going to be after all the years of pain killers,!!. mines 2 week a month where I'm in pain, walking like a gimp struggling to sleep, literally just giving up, even my husband knows that during that time we eat more take aways because after been at work all day I've nothing left, I come home have a couple of codeine an sit or lay on settee with hot water bottle. Before those injections I had a week off work every month because walking was an issue, I was on my first warning at work!! But thankfully I've not gotten that bad again, I really think those 5 months break gave me chance to exersice more an help build up some knackered muscle after 2+ years of pain an a weak leg

ajb1969 profile image
ajb1969 in reply to Nicgoody

You’re suffering all the time. It’s just ridiculous. Having to go though this all the time.

Hi

I’m definitely going to discuss it with the next Gynaecologist that I speak to. I’m waiting for an appointment to see the gynaecologist team, to have a colposcopy, so I’ll hopefully discuss it with them then.

I was really hoping, that it was just this fibroid and polyps that’s causing all the issues and then I might be sorted if they manage to help me with that.

I’ll have to write down what I need to say because when I actually end up at appointments, I completely forget what I want to say because my memory is so atrocious.

I’m always scared of losing my temper, so I better get practising.

I might even have to resort to taking a video recording of myself, in agony, so I can show them how much pain I’m in. :)

It was lovely talking to you, thank you.

I hope you find a solution soon and it’s so sad to hear that you’re allergic to those injections.

You may also like...

Help! new to all this

week of continuous bleeding and pain, had an urgent gynae appointment last week, the Dr attempted...

Adenomyosis and the Mirena coil - advice please!!!

Hi everyone, Two days ago I had a transvaginal ultrasound and then had the Mirena coil fitted to try

Adenomyosis & Injections

see it on my last lap 4 years ago) my Consultant put me on Prostap 3 injections, I had previously...

Hysterectomy for Adenomyosis and endometriosis

no other option apart from having a hysterectomy. I have have had several procedures and opps since...

Excruciating lower back pain

excruciating lower back pain due to adenomyosis? I have seen a registrar, who thinks that my pain...