Feels like me life has come to a stop!! - Endometriosis UK

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Feels like me life has come to a stop!!

Jenaust1985 profile image
7 Replies

Hi Ladies,

I am waiting for the comfromation of diagones but I have suffered from crippling period pain since I was 14. Heavey bleeding and dizziness/ fainting.

I have tried many treatments over the years from orale contracetives, hormone injections which seams to help. But due to developing a blood clot I carnt have any thing hormone based!

I was steralised 4 years ago and they removed adhesions from my womb and overais at that time and that made the world of differance- no pain and no extreame heavey bleeding.

The last 12 months have been hell!! Extreame pain in my pelvis, back and hips, chronic fatigue, nausea, vomiting.

Been back to to the g.p that many times, I need my own chair!! Now Iron deficent on b12 injections. Had a marinia coil fitted 6 months ago and things have gone for bad to worse. Was admitted to hospital in october due to constant vomiting for 6 wks and being in chronic pain- just sent me home with co-codamol and anti sickness meds and to go back to see my g.p.

Now have pain meds from ibrophen to tramadol and every thing in between!!

Sat here in chronic pain!! Dont know where to put myself- taken the max dose of pain killers and havnt touched the sides!! And period hasnt even arrived yet.

Has any one got any advice as dont know which way to turn but carnt stick the pain any longer!!!

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Jenaust1985
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7 Replies
Tillyfloss profile image
Tillyfloss

hi. How you feeling? Have you pain meds helped?

has your gp mentioned endometriosis? Sounds like you need referring to get some answers. I've no experience of the coil but I'm sure someone on here will have some thoughts.

is your pain and sickness constantly through the month or at certain times?

have you asked to be referred to the pain team? I found them brilliant and there advice has helped, I'm still bad some days but I usually manage to get up and kind of function most days!

keep going back to your gp till you get a referral as the understanding of endometriosis is so varied it's pot luck.

good luck. Xx

RexyTony69 profile image
RexyTony69

Hi, you sound like your coming to the end of your tether. Without a diagnosis it's hard to treat. It certainly sounds to me like you have PID and endo. You need an ultrasound done and ASAP. Don't be fobbed off by your GP. Demand a scan and tests done. All the best love xx

Jenaust1985 profile image
Jenaust1985 in reply to RexyTony69

Thank you both for ure reply- The G.P is now thinking its endo as hes has exhusted all other options, I have had ultra sounds done as the first 1 they were looking for PCOS which came back o.k. Then had a second to check placement of the coil, at the time said it was fine, then when I saw g.p 2 weeks ago he reviwed it again and said things looked very imflammed and treated me with Antibiotics for PID just in case and to go bk in 2 wks in no better and couldnt get an appointment last week although I did resort to begging!!!

Pain is horrific today, can barely walk- sit or stand- hugging my hot water bottle for grim life, had a hot bath, taken pain meds including tramadol( only take that as a last resort as knocks me off my feet) and nothing is touching it!!!!

Sickness tends to be the day before and 1st day of peroid and then a day or two after peroid ends- feels excatley like morning sickness.

Every time I go to g.p just leave with another bag full of meds and to come bk in 2 wks.

I am at the end of my teather, its the crippling pain and just feeling completely exhausted all the time 😢

But thanks for the supportive comments at least I know its not completely in my head!

RexyTony69 profile image
RexyTony69 in reply to Jenaust1985

Hey, you know what I'd do in your situation , go straight to A&E. When they examine you your pain barrier will go completely thru the roof. They will keep you in and do tests. Why wait and be like you are? That's what I did and ended up having a lap to remove endo. .........

RexyTony69 profile image
RexyTony69 in reply to RexyTony69

Also was treated intensely for PID. Take my advice and go to A&E, get admitted and get something done. Has pregnancy been ruled out? Sometimes ectopic pregnancies don't show up till the tube bursts. Hope you get sorted. No one should suffer this pain xxxx

Tillyfloss profile image
Tillyfloss

hi. How you feeling? Sorry your having such a painful time it's both physically and emotionally exhausting and I completely get it.

going to a&e is very good advice, I always feel a bit of a fraud on here as I've not had the years of battling with doctors to get diagnosed. I was taken to a&e with sudden abdominal pain and after three days, various mishaps and in the end my mum calling a surgeon whose children I used to babysit for they finally operated to remove my appendicitis - I still have it as what they found was a slow leaking chocolate cyst, my appendicitis was submerged in the blood and debris and I really am very lucky as I was repeatedly told the next day as the powers that by at the hospital came to apologise for all the mishaps! Whilst the did there best to patch me up and clear as much of it away as they could they found endometriosis on my bowel, bladder and womb and cysts on the other ovary.

you really do need to get a diagnosis and the level of pain your describing is not manageable, get someone to take you to a&e or call 111 or 999 if needed ( I had to do that 3 weeks ago and they were amazing).

it's not all your head. good luck. Xx

Jenaust1985 profile image
Jenaust1985

Well went back to g.p again on Tuesday and saw a different g.p who was amazeing in all fairness!! She had the time to listen to what I was saying and didnt just dismiss my symtoms as period pain- especailly in agoney and my period hasnt even arrived yet.

Has made an urgent referral to the hospital- yay- might finally get some answers and some effective treatment! She has signed me off sick from work(which Im feeling a bit a blue about) but due to my job- im a care home manager- i carnt look after myself atm let alone any one else!!

She is trying to help me to manage the pain- bucket loads more tramadol but taken regularally does appear to be taking the worst pain away. And I go bk to see her next week to review.

I know still got a lot to get through but feeling so much better just for being listened to!!

Thank you all for your comments and being supportive x

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