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

Oh OP, I truly sympathise. I wasn't quite as bad as you but it was near enough. I know how horrific it is when your entire life (and career!) is held hostage by your periods. I was lucky in that the pill managed to reduce them significantly.

I think you need to be very forceful with the doctors and make sure they know that this is destroying your life and you need a more practical solution.

OP, ive been thinking of you ever since I read your thread. It’s so miserable and so true no man would be left in such pain for so long.

I’m going to suggest something utterly crazy. Because you said this I also really want children. I’m going to suggest you consider trying ASAP.

Several reasons. You have endo, but you still have age on your side at the moment. If you do get pregnant, it will give your body a (sort of!) break. If you have to take strong meds, it might mean you need time to come off them before ttc. You might be one of the lucky people whose pregnancy resets your periods. If not, you won’t be worse off.

I don’t know what you’re qualified for, but my last job (civil service) had a part time policy where the part time was counted over the whole year. Theoretically if you worked 50%, you could do full time 6 months and gave 6 months off! Could you ask to work extra hours for 3 weeks so if you need time off, you can?

Hi OP-just want to add my thoughts. Myself, maternal aunt, mother and grandmother all have had endo and or early hysterectomies due to massive internal problems. Theres definitely a hereditary link . I suffered for years with extremely heavy and painful periods, resulting in going to A&E a few times and given paracetamol and told to go home! However saw a female gp who ordered bloods and an internal scan which discovered large (10cm) cysts on each ovary. Finally after 4 years in the system and an amazing nhs surgeon I am somewhat free at the moment of stage 4 endo . However there is endo on my bowels but that's for another op in the future. He also suggested a merina which I had fitted in the lap ( took 3.5 hours instead of the 1 hour they originally thought due to the unknown extent of endo )
I also suffer from hormonal migraines so was reluctant to try the merina however it doesn't seem to have aggravated them and 4 months in I haven't had a heavy bleed at all. Its life changing!
I'm on an endo facebook group which is very supportive-makes me realise how lucky we are with the NHS rather than a wholly private US system. Where are you OP? I'm in N London and would recommend my amazing surgeon ( Mr Hemant Vakharia) Infact I discussed if I should go private and he asked me not to as he felt the expertise is better in the NHS and has more accountabilty as a previous poster said.
Lots of endo sufferers turn to a more plant based/dairy free diet which would also help with the migraines. (However I'm not very good at giving up my morning tea so maybe this is something for the future!)
Another thing would be to consider having some eggs frozen for a later date-I would perhaps think about this rather than paying privately for surgery .
Sending you lots of healing vibes and hugs

I really sympathise - I suffered for years before finally being given the help I needed. It was the mirena coil that solved my problems. I haven't had a period or symptom of endo since I was 36 and I'm 50 now.

I had previously had laser treatment twice but the endo came back even more aggressively each time.

The problem I had was that I wanted to have a baby so the mirena wasn't offered to me until I gave up TTC.

I wouldn't change anything now as I have two lovely adopted children but I'm convinced that if I'd been given the mirena when I was much younger and then had it taken out to allow me to conceive when I was ready I may have been able to have bio children. I may be wrong about that but I do feel that I was fobbed off by doctors for a long time and lost my fertility as a result.

I wish I could have children right now but I’ve only been with my partner 8 months and money would be a struggle at the moment. I can’t up my hours at at the moment as there aren’t any more hours to give.

The pain is back the codine hasn’t worked I cant sleep but going back to a and e really isn’t an option as I’m so exhausted doctors haven’t phoned yet so they probably won’t until tomorrow

What stage endometriosis have you been diagnosed with ? Have you had laser surgery to the endometriosis?
It is common to have a Mirena IUS put in during gynaecological surgery for awful periods - was this offered to you?

I too suffered for years. The GP fobbed me off for years saying that they needed me to come in when having an 'episode' - sorry, but usually an episode meant I was unconscious somewhere, passing out from the pain of my horrific periods. And yes, vomitting etc. 'Luckily' my periods were so haphazard I didn't get them every month and therefore couldn't plan a GP visit in time... And I travel a lot on business so there are few countries I've been in where I haven't been taken to hospital by an over zealous hotel staff seeing me unconscious...

Anyhow, had 2 ops to help reduce, was diagnosed with adenomyosis too and being pre-children didn't want a hysterectomy. My Gynae also gave me the Mirena - changed my life! Its not the same as other hormonal contraception (and I know it doesn't work for everyone) such as the pill as it only releases micro doses of hormones very locally, not like the pill which is macro doses throughout the body. Definitely worth trying in my opinion; it takes a few months to settle down but honestly, i was pain free and no more heavy periods (until I had kids).

No it wasn’t offered it I have the endometriosis cut out from the root and not lasered off. I wasn’t given a stage well if I was I’m not awear of it it will probably be In my notes I have a folder of medical stuff I’ll look through when I find it recently moved house

I suggested pregnancy helped because the op was saying she didn’t feel able to have kids due to the debilitating pain, whereas I got my life back after pregnancy as the pain is now much better.

Yeah, first question my gynae asked me was whether I could get pregnant soon as that often sorts it out. For me at the time, I wasn't looking to get pregnant so operation, mirena and then another operation a few years later sorted it until I got pregnant.

Yes pregnancy is something I really want but my partner wants kids around 30 he’s 27 we’ve only been going out 8 months it’s to soon

I'm so sorry you are going through this @Overwhelmed245 my own experience was dismissal of pain. I got referred to A&E for a ruptured ovarian cyst, for which that consultant told me I couldn't possibly have as I wouldn't be standing. It was a ruptured cyst the size of a golf ball, after another ruptured cyst my private health insurance referred me to a private surgeon who also lasered the endo. I was much better and had a child, unfortunately after my second child I had more ovarian cysts that kept rupturing and endo. After a year I had further surgery on the nhs, the consultant told me that food intolerances, particularly for dairy and soya where very common with endo sufferers. I paid for private testing and was diagnosed with a dairy intolerance among other intolerances. Giving up dairy has made a massive difference to my quality of life. The consultant told me that endo, ovarian cysts and food intolerances can all have overlapping symptoms. Mine included fatigue, pain in ribs, ovaries & back, digestive issues, headaches, insomnia and nausea.

Yes I can’t eat too much gluten or lactose I’m not intolerant to them but they do affect me so I’m carful with what I eat

I feel for you, endo is awful. I had 2x surgery to remove endo and GnRH injections which stop all hormones and helped++ with the pain (although they do have some significant side effects). Pregnancy did help and since then Mirena coil had changed my life. The key is to stop the bleeding because the internal bleeding that stays in your abdomen is ridiculously painful. Please get referred to a specialist and ask them about GnRH injections and the Mirena coil. You shouldn't have to live like this.

Crying in pain again but can’t face another taxi ride to a and e codine hasn’t worked

I was also going to recommend looking to diet. Dairy and refined sugars are triggers for many. You could try a raw vegan (so nothing but raw nuts, fruit and veg. just water to drink) for a month and see if you notice an improvement. I'm not advocating it as a long-term lifestyle choice - if it works you can start to add things back gradually.

There is lots of advice and suggestions here: www.earthclinic.com/cures/endometriosis.html

Good luck!

So upset by all of this I’ve had bad periods since I was 12 and they’ve just got worse 14 years and no proper relief I’m also alone tonight and just craving being with my mum or boyfriend

So sorry OP

Please speak to your doctor about the mirena coil - as mentioned, it releases a tiny, tiny amount of hormone that is very unlikely to cause any side effects. It’s definitely worth a try.

Also ask for pain relief - explain you can’t keep going to A&E

Eating lean protein and salad / veg (no processed goods / sugar) and exercising 3-4 times a week helped so much - I didn’t even get period cramps!

I had migraines too but was still recommended the coil by top doctors

OP so many women on this thread are saying the Mirena worked for them. I really think you should ask your doctor about it even if it's not yet been suggested to you. Even though Mirena contains hormones, it is at such a low dosage and delivered locally so even women who normally suffer bad symptoms with other hormonal methods generally do fine on it. It's hard to hear how badly you're suffering.

@Highfalutinlootin totally agree, mirena coil has changed my life, just got my second one there last year, endo has not gone away but life is alot better

Mirina has been spoken about before but it’s the last thing the doctors want to try due to medical reasons I had it when I was a lot younger and my body rejected it and it worked it’s way up inside me

Called gp there to busy so will call me tomorrow I’ve been waiting since Sunday