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

I always advise people to use/get a private help if needed. But once you have, you then use that to get a specialist via the NHS. You then 'get back' into the NHS treatment.

There are reasons for this. It's all recorded on your NHS record then. And thus it's so much easier to follow up, make complaints, get things actioned. Because there's traceability. A timeline.

I was seeing an nhs endometriosis specialist team I still am but I also got a second opinion from the private specialist

I could have written most of your first post OP.
Stage 3 here, frozen pelvis as well. The pin is like no other, but the fatigue! My god the fatigue! I cope with the pain by using codeine, tranexsamic acid, ibuprofen, paracetamol and heat! The burn from hot water bottles is preferable to the pain of Endo. And there's not much more you can do about it.

I had the Nexplanon contraceptive implant for years and that helped a lot but it's not for everyone. No good if you want to start a family though as I've learned.

Feel free to message me if you ever need to rant about it. I follow a lot of fellow warriors on social media as well. Doesn't help with the pain but makes you feel less alone

Have you had full bloods done? There’s actually a thread in here somewhere saying people have noticed their period problems lessened when taking vit D. This jumped out because I could have said the same I’m constantly in pain I get fatigued so even when I’m not on I’m exhausted. I was severely vitamin D deficient and I’d always put it down to my periods.

I was put on cerazette and it helped immeasurably, once I got through the initial few months! My gynae advised against the mirena due to endo and against injection incase it got worse as you can’t stop immediately like you can with the pill.

I’ve been taking vitamin d for a year now

I used to have to attend A&E for menstrual pain. Buscopan IM injections worked better than morphine for this type of pain

Flurbiprofen tablets changed my life, ask your GP about it. No more crippling pains.

Cody has worn off to I haven’t slept all night I’m
To exhausted to go back to a and e for any more morphine also don’t think that they will give me any I hope the doctors calls today

Have you been prescribed anti sickness tablets as well? I found cyclizine really helped when my other meds were making me sick.

I really hope you get some effective treatment soon. Often it feels like in the NHS you are hurting your head against a brick wall. It is even harder when you are in pain and vulnerable to have to constantly advocate for yourself. Wishing you the best x

Thank you I’m taking note of all these suggestions to speak to my doctor about some I have already tried some I haven’t I take anti sickness already but it dosnt always help especially when it’s the pain making me sick

OP this is not on. I am concerned the specialist you saw may not in fact be an endo specialist (a lot of gynaecologist say they specialise in this condition, but they don’t). I remember eventually getting in front of an endo specialist when I was 29 who was horrified when I was talking about how I use to vomit in pain when I had my periods and I didn’t think that was abnormal...

I’m glad you are seeing an NHS doctor. You can’t just be left like this.

Are you on some sort of hormone treatment (I use to take the combined pill)
When did you last have surgery? If you are suffering this badly and you’ve tried a hormone option then they should go back in. I had 3 laps in 6 years.
It’s right they don’t like to do hysterectomys, but they can induce a chemical menopause (some surgeons do this after for a period before and after surgery).
I’m so sorry you are going though this. There are more options

OP sorry if I missed it but I don't think you've mentioned yet whether you've tried a Mirena coil? My sister suffered terribly from endometriosis and did eventually have a hysterectomy in her 40s, but before that for many years she had a Mirena, which completely stopped her periods. This stopped a lot of the monthly pain and prevented the endometriosis from continuing to suited to other organs. This was recommended by her doctors. Has this been discussed with you as an option?

• spread not suited

I feel for you as a stage 4 sufferer myself. My GP prescribes mefenamic acid (pain) and tranexamic acid which lessens blood flow. Buscopan helps me a bit as well with some of the cramps. Are you on iron tablets - you may well be anemic if you're losing a lot of blood. Keep pushing your GP and get the practice manager involved if needs be. If a man reported crippling pelvic pain and blood loss that stopped them working you can bet they'd be taken seriously! I waited years for a gynae referral by which time it was all over my pelvis and I had a huge endometrioma which resulted in the loss of a tube and ovary. However, I was still able to conceive so don't lose hope on that front. Feel free to pm me if you want to x

I agree with the Mirena, has that been trialled?

My doctor I paid to see is doctor dr shaheen kazhali he is a top specialist who runs seminars on endometriosis for other doctors he also trained the doctors at nhs endometriosis clinic I visit. I last had surgery a year ago so they won’t operate on me for a while. The coil has been suggested a few times but other treatment has always been tried instead. I’m supposed to be having pelvic floor therapy asked if I wanted nhs or private I said nhs as long as the waiting list wasn’t to long other wise my mum would pay for me
To go private or I would use my savings but due to Covid that hasn’t happened yet

Any hormonal contraception has made me sick every morning almost like morning sickness also get migraines so limited on which contraception I can take due to increased stroke risk

The only thing that worked for me was taking the pill continuously (no breaks) so I basically have no period now. It took over 6 months to properly settle down but the pain is now gone.

There have been a lot of suggestions here. Unfortunately everyone experiences endo differently, so there isn't a one size fits all solution. It really is a bit hit and miss. I may have missed it, but one possible treatment regime is Leuprorelin. GnHR's are not always used as commonly for endo as they might be. Worth a try.

The other conversation to have with your consultant is whether this is, in fact, also adenomyosis. With the worst cases of pain etc, it often is. Unfortunately, the only way of detecting it is in a lab and requires a full hysterectomy - which is also the only known treatment for it. For obvious reasons they and you may be reluctant to go there at your age.

@Overwhelmed245 ok. I can’t believe he has left you in this state without a clear plan and you are having to go to A and E of come on Mumsnet for advice.

As others have said Minera is an option even if you get migraines with hormonal contraceptives. It is a small amount of hormone and effectively targeted at your uterus so people often get less side effects.

Given how bad you are I am also surprised you weren’t offered GNHrs before and after surgery.

I hope you get your nhs appointment soon and get some more options.

I just want to add that it’s not acceptable for Gp to just decide not to prescribe pain relief. It’s not a long term fix but until they have a better plan, s/he cannot be leaving you in this level of pain.
I’m another extreme gynae pain sufferer (thankfully much better these days) but I accepted poor care because I had internalised that somehow I had to put up with it. Be loud, be clear exactly how much this is impacting your life. If you feel fobbed off say that and say you will be making a complaint. At your age I was so crushed by the pain and knock on impact that I couldn’t stand up for myself. Learn from my mistake. I also took my husband to appointments as sadly (shouldn’t be this way!) doctors all took me more seriously when I had a man saying I couldn’t stand from the pain than when I said it myself

My neighbours' daughter got significantly better after taking metformin combined with a high plant diet, very unprocessed diet.
Talk to your GP about having a go at metformin . It is a very common drug for diabetes.
Do some research
www.sciencedirect.com/science/article/pii/S1110569012000957
pubmed.ncbi.nlm.nih.gov/25556427/

for dietary changes start here
www.ncbi.nlm.nih.gov/pmc/articles/PMC7044830/ and explore other medical papers

The Mirena coil changed my life. I had stage 4 Endo and suffered throughout my 20s and 30s. I had a number of surgeries, the last one followed a 6 month course of zoladex ( effectively puts you into a temporary menopause so allows shrinkage of lesions). I eventually got pregnant and had DS and then had Mirena fitted.
Pregnancy didn’t really fix much and even with the Mirena I had a couple of attacks in the first year after pregnancy but since then, 16years now I have lived pain free and period free.
I have a lot of scaring internally and my bladder is permanently damaged, I struggle to feel when it is full and have retention. The Endo is all over my bowel and I have lesions in odd places so I still watch what I eat and drink in case it triggers these lesions.
I had a lesion around my sciatic nerve that caused scarring and have chronic sciatica as a result.
I wish that the Mirena had been around when I was in my 20s, I would have been first in the queue.

If I were you I think I'd get another opinion from a specialist.

Your GP should also prescribe anything they recommend.

All specialists have to write to your GP to summarise your consultation and treatment they recommend. This all goes onto your medical records.

Right, so obviously this is not normal and needs to be sorted. Quite frankly your GP is shit, knows you are in pain and won't prescribe meds. Your consultant should have prescribed you meds and then sent a letter telling him to continue prescribing.

My own story -
I had horrific painful periods from 12. Told I was a wuss, suck it up, blah blah blah, (even from my own mother) they put me on the pill at 16 which helped but it was still very painful. Over the counter meds didn't touch it. I was prescribed Ponstan at some point. Anyway, long story short I had very high blood pressure and aura migraines so they took me off the pill permanently. Symptoms came back.

Saw a female GP who suggested endo, referred me to consultant. Condensed this is how it went and we moved onto the next stage each time

Pure progesterone - Dydrogesterone (Duphaston)
Chemical menopause - Nafarelin (Synarel) aka GnRh analogues, plus HRT for osteoporosis for 6 months.
Laser lap & dye surgery for actual diagnosis but also treatment and to check if my tubes were clear inside.

Told it was a fucking mess inside with scar tissue (no shit Sherlock) told I would need IVF to have children. I was 28 and married for 3 years, with a full time job. Next step was mini pill for 3 months whilst my body settled down. Saw him again, he said it was all back and I had an aggressive type.

Basically he said try for a baby, it won't happen and then we can put you on Chlomid to make you release more eggs in 6 months and start the IVF route at 12 months. I was pregnant 2 weeks later that shocker miracle pregnancy is now an almost 18 year old. And that tells you how long ago it was and how little it has moved on in terms of treatment.

I did end up giving up working due to the fatigue around the time Ds1 was a toddler, PIP is almost impossible to get for endo I believe. I will say that being able to listen to my body, sleep when I need to (every fucking day, and no I don't enjoy it, it spoils holidays, weekends away, visiting friends, going out for the day with friends) I get to just potter around. I have been a SAHM for 16 years. I have a very supportive and understanding husband.

I currently use a TENs machine for my periods plus Migraleve Pink, for the anti-sickness med in it and the small 8mg dose of Codeine right when it all starts. I also have 30/500mg co-codamol but tend to only take that at night as it makes me a zombie. I hate the feeling.

I had 2 C sections so a coil would be more difficult for me but I would think about the coil with the hormone for you. My mate had that and massively relieved all her endo symptoms.

Loads of advice here for you , unfortunately what works others might not work for you. I was the same severe pain during my teenage years, vomiting, days in bed etc every month. Was fobbed off so many times luckily enough 10 years ago managed to get sent to a specialist when my usual doctor was off and I saw the on call, since then I have 5 laparoscopy's. I cried going into theater last time as was so fed up of it. I do need a hysterectomy however my lovely surgeon doesn't wasn't to bring on early menopause etc and am grateful for that. I got the Mirena coil put in and have to say that has really helped me. I wont be having children and don't see why this should be a suggestion to help relive your pain. Only have a child if you really want a child. Another thing has helped and I know its so hard to do is try and get a little exercise. even a 15 mins walk a day will help. I also started light swimming aswell before covid lockdowns and that helped . I take iron, magnesium and bercoc boost every day aswell, reduced my sugar too. The tiredness is the killer though, I find I am exhausted after doing simple jobs such as wash the kitchen floor means have to go sit down for a bit, so pace yourself with this. I am lucky am in a position to pay for a cleaner to come each week to help me. Please go back to your GP and ask for more help, look up endometrioses groups on Facebook etc too they can help too.