Just been to A and e at my wits end with everything

[Overwhelmed245]

Brief background
Always had painful periods since I was 12.
Got diagnosed with endometriosis by surgery 3 years ago.
Have since had a second surgery.
Have been prescribed loads of contraception and other tablets/ pain relief over the years nothing has drastically helped and the contraception has all made me so sick.
It’s got so bad all the pain that I’m bed bound for 2/3 days of the month being sick and just crying.
Was prescribed some morphine at Christmas by my gp as a one off for a bad attack it helped take the edge of and let me sleep.
The periods are also so heavy I’ve lost 2 jobs over my sickness or being ill at work as the pain constantly makes me sick was sick in front of a customer In my current job.
I’ve seen a specialist and have paid and seen the best endo doctor In the uk and he’s suggested pelvic floor therapy and to keep on top of my pain meds but the gps reluctant to give me to many.
I’m constantly in pain I get fatigued so even when I’m not on I’m exhausted.
I can only work 3 days a week at the moment and I’m really struggling for money.
I’ve slept all day or cried while trying not to be sick. Finally couldn’t cope when the codine wouldn’t mask the pain and had to go to a and e.
111 sent an ambulance last month for me as they where worried.
My boyfriend is so supportive but it’s so hard as I always feel guilty that he does so much for me.
I’m 26 I should be enjoying my life but I can’t my last long weekend away was spent being sick crying and sleeping.
The doctors can’t do anything more really except pain relief but I don’t really want to be dependent on it for a normal life.
I’ve ended up in a and e tonight where they gave me morphine I cried the whole time as I was in so much pain the morphine finally kicked in and took the edge off.
It so hard as there is no cure I’ve tried all the meds going and the ones I am on are not working on the really bad days.
I exercise eat healthy when I can but my life feels ruined. I can’t be out of action for a week every month I can’t afford to loose another job I also really want children but how can I look after them if I’m like this.
Sorry for the long ramble I’m over tired and full of morphine

What can I do I’m waiting to see a pain management specialist but it’s a struggle with Covid I also get told by my specialist I should be on stronger meds but my doctor won’t prescribe tjem

So sorry you are going through this. It sounds bloody shit.

Maybe look up the NICE Guidelines for endometriosis and gynae conditions and make a formal complaint to your gp if they aren't following them.

Are there any nhs advocates that cover your area? Or a PALS for the NHS Trust that your gp falls under?

I feel so bad for you OP. Nothing as bad as your situation but when I was a teenager I had really painful periods for a couple years and ended up on strong painkillers that would knock me out. I always thought I was being weak and was sure the doctors thought I was too but then I gave birth 6 months ago and realised most of the contractions up to very close to the end weren't even as bad as the period pain I used to have! So I can imagine the pain you are in is really tough. Did the endo surgery help at all?

You are struggling so badly I'm sorry. Maybe being pregnant will help? Obviously no period for 9 months, but it might kick start your body into behaving. Have one baby, see if things improve, and if not you could consider surgery.

No the surgery didn’t really help but the private doctor I saw trained the team that did my surgery and he assures me they would of removed it all. This week I was so horrible and snappy to my partner I apologised and cried and he’s was so lovely he had to go back to his flat for work but all afternoon he watched me sleep stroked my head and then made me some dinnner before he left

I can’t financially afford a child at the moment I can’t even really work yet raise a child I’m speaking to my gp this week but since I’m 12 I’ve been trying to get relief and I haven’t

Also the specialist won’t do a hysterectomy as it’s not a cure you can still continue to have pain after I also can’t walk when that pelvic pain is bad I’m also very low with my emotions and then suddenly very happy due to hormones money wise if I can’t work I don’t think I can claim anything either

That sounds so awful. I have nowhere near the same but did have surgery for painful endo and usually bleed so heavily just over a year ago a i ended up having a blood transfusion, well four actually (two blood and two iron infusions over a couple of weeks) for anaemia. I am on iron tablets and also Transexamic (Sp?) acid to stop me from bleeding so heavily. This has helped with the bleeding and anaemia a bit, I still have 3 very heavy days and a lot of tiring period symptoms so I’m going to have the mirena coil as it has been suggested that might stop my periods. Has this been mentioned to you?

Have you tried medical cannabis ? It can be very useful for endo. Good luck.

I wonder if you could be eligible for PIP since it certainly seems to be disabling you? Endo is so poorly understood it really should be researched more, unfortunately I think its just another problem that can affect only women so is largely ignored. I know there is a charity - endometriosis UK, I expect you've already discovered that. Sorry OP I wish I could say something to help.

I have considered pip but online test said no I probably won’t be and I don’t no anyone with endo In my I’m group that has received it just on endo alone

I really sympathise, it is awful. I was exactly the same for years, passing out with pain. I had to plan my life around one week a month because I knew how bad it would be.
You said you saw the best endo doctor in the country? Who was it? I only ask because I travelled all over seeing specialists who were meant to be amazing and the top specialists, but ultimately felt fobbed off. I did then visit a specialist who is known to be amazing. He did a couple of ops to give me relief for a few years, sorted pain relief out then as soon as I felt ready he did a hysterectomy. He is amazing in my eyes and did what many endo experts failed. You are right, a hysterectomy isnt a cure but I am 90% better after mine. However, you say you want children so this isnt an option you will want at the moment but a good endo expert should be able to help you in the meantime to at least get you out of the amount of pain you are in. Have you tried zoladex? Maybe another option to explore. Whereabouts do you live, my specialist may not be feasible depending on where you are.

Feel free to pm me, I am so sorry you are suffering so much.

Sorry to hear you've been having such a terrible time with it :( it really is such a nasty thing and despite being very common (in varying severities) surprisingy few people even know about it. I have had similar issues but strangely mine have been on and off, I remember having particularly bad pain at points throughout teenagehood and looking back I'm so angry at how everyone just brushed it off as normal. It's horrendous how these things can be dismissed when they can actually be very serious. Now, after years of this on off pain and also times where I can bleed continuously but little for months on end, I have regular cycles back but I also have a contiuous burning in my pelvis/lower back, that is either mild or severe, doesn't matter what point of the cycle it is. Just wanted to share so you can know that many many people are in similar (if not exactly the same) boats.
It's good that you at least have a diagnosis already, so well done for getting that as not many women are able to, including me. I'm sure you've probably been told about the possible benefits of having a coil fitted? Is it something you would try? I'm sorry if that isn't helpful, please disregard it if it is. Don't apologise for rambling you have every right to compain when it's this bad. I hope you find much relief and things get easier for you.

Have they offered you continuous Norethisterone? When my endometriosis was at it's worse it brought me some relief by at least stopping the horrendous periods that most months were as bad as a miscarriage. I also took dihydracodeine for the pain, it at least numbed it down to a bearable level. I finally had a hysterectomy & thankfully it stopped the pain. Could you ask to be referred to a different gynacologist?

Oh you poor thing. I feel for you cos I am cured from endo and am actually furious for you going through this cos I had mine in the 80's. You'd think since then the medical world would be a lot further along (so many women suffer from it).

Is the endometriosis society still going? It must be online now.

As well as hormones prescribed by the gynae, I also started to research and have alternative healing methods, i.e. acupuncture, etc. (And now with this bastard pandemic, those may be curtailed now), but the combination managed to cure it.

Had a quick google and these came up.

endometriosis.org/

www.healendometriosisnaturally.com/home-page12653782?msclkid=8243541533e51dd22a843402476c7156

I really hope you can find relief from this awful debilitating disease.

I have taken norethristone on a few occasions but it’s made me very sick so I can’t tell which I prefer being sick or endometriosis but maybe if I took it for longer I might adjust to it

I earn between 500-800 a month depending on if I do 2 days a week or 3 I spend about 400 on bills on top I have food prescriptions and I like to have massage therapy if I can afford it once a month if I can I’m also having to furnish my flat I have savings bug they will run out eventually and I need them as if I have surgery or time of work I only get ssp

Can’t sleep at all I’m exhausted on the plus side I’ve planned my partner’s birthday dinner idea

Morphine’s worn off

I used to be the same as you, the pain is unbearable and I couldn't get any doctors to believe me. Unfortunately the only way I got rid of it was a full hysterectomy so I never had kids. Couldn't have carried on like that though. Only advice I can offer is that most of my pain was caused by the endo blocking my bowel and I finally got listened to by the gastro unit of my hospital who did barium enema etc and would arrange my tests and appointments to coincide with my periods so they could see me at my worst and most swollen - the gynae dept were no use. I would have liked to think things had improved for this awful condition since I had it but from what I keep reading it seems they really haven't. Keep making a fuss, it's almost 30 years since I was like this and I will never forget the pain. x

"I’ve seen a specialist and have paid and seen the best endo doctor In the uk and he’s suggested pelvic floor therapy and to keep on top of my pain meds but the gps reluctant to give me to many."

This is not ok. I don't believe your core problem/issue is being addressed.

You should be under a specialist NHS wise. Get your GP to refer you.

Speak to the Practice Manager about your whole 'case'.

People get fobbed off all the time. Told that nothing can be done. Often that's not true. Please fight for your right to proper care.

Thanks for all the advice I’m going to be speaking with my doctor today or tomorrow hopefully

also get told by my specialist I should be on stronger meds but my doctor won’t prescribe tjem.

Then the specialist needs to prescribe them himself, or write to your GP to say that this should be being prescribed.

Is your specialist private? You do realise this could actually be a disadvantage?
do you understand why I'm telling you that your must ask for an NHS specialist referral?

do you really understand the difference, in how it affects your whole NHS Record?

Pre-pregnancy, my periods were terrible. With hindsight, it was cervical pain and as my cervix didn’t close as much post-pregnancy, it has been better —except last month where I nearly collapsed paying a largish clot—

I nearly didn’t get medical help for appendicitis because it wasn’t much different to an average period.

What did help: mefanamic avoid being prescribed, and starting to take it 3 days before my period. Lots of exercise until the day of my period and spending my period resting.