Endometriosis UK
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Desperate for help and no one seems to care

This may be a long one, but just feel like I need to get this off of my chest. I went to work yesterday late(woke up with horrible cramps). I took this new medicine my dr. prescribed to me which was Toradol. It's supposed to be a super strong version of ibuprofin and is supposedly very good at helping dysmenoria. After taking it I immediatly passed out and then woke up about an hr later still having same amount of pain. I've missed alot of work recently and been needing to catch up on my money so I tried to go in anyway. After about 4 hrs I started my period and the pain was unbearable. I called my OBGYN and told them that the medicine they gave me did not work so the nurse told me if it was that bad I needed to go to the ER.

So I somehow managed to drive myself to the ER. I got there, was crying uncontrolably in terrible pain and was told I would need to wait about 15 min to get a room. 30 min later they came and took me back. I settled in and then another 30 min later the nurse assistant came in. She made some condescending remarks that I should be on BC if my period is this bad and then left. After that another 45 min passed and some woman came in and gave me a 60 mg shot of toradol and then left the room without saying much of anything besides that she was giving me the shot. 1 hr after that a male dr. comes in and asks how I'm feeling- I asked when the medicine would work and then he openly admitted that the toradol does not always work. He then told me he was going to write me a RX and send me home. So after that I'm waiting outside and I realize they wrote me RX for ULTRAM (which is tramadol) which is something I have taken in the past that also didn't work. I have 2 bottles of that crap in my house already. So I went back in and was told I'd have to wait for the nurse to be free and then she'd come talk to me. She finally came out and I told here what was going on. Without even asking what does work for pain she went and wrote me a RX for hydrocodone which I can't take b/c of side effects. I told her that percocet works. So after that she came back with an RX for that but only gave me 5 of the 5 mg pills, which I need at least a 7.5 mg dose for it to work at all.

By the time I got home and took the medicine the pain was so bad it didn't even really help that much. I was so upset I called the suicide line and even after that didn't feel better. They just said I should go to the ER again, as if I have another $200 to throw away on another visit that will most likely have the same result.

Last nite I was hurting so bad and I was so upset I started cutting myself(which I haven't done in 5 years) just so I could distract myself from how much my abdomen was hurting. I'm starting to think that maybe I just deserve to be in pain like this every month- because obviously these doctors I've been to do not think that it is a priority for me to have any sort of relief from this hell. My condition is so bad that I'm actually quitting my job (put in my 2 weeks notice last week) because I'm missing so much work that it's not even worth it for me to go in.

Anyways- my doctor mentioned trying Mirena since she thinks I shouldn't have any side effects with it. I'm going to call Monday and set an apt for them to put it in. Worst case scenario is it doesn't work and then they'll finally quit bitching at me to try it. Anybody else with endo used Mirena and gotten positive results? Also if you've had issues would like to hear about that too.Just kinda nervous about putting that thing in my body.

1 Reply

Hi Nikki, I am so sorry you are in agony and no one seems to be taking it seriously.

You have posted on a united kindom endo forum - and most of us are familiar with the British NHS system and don't have much of a clue regards how the various US health care systems work, so this does limit to some extent the advice we can give you.

Likewise the drugs available to you are not necessarily cleared for use in the UK, and vice versa so finding forum members that have tried all the ones you have been on might be a challenge.

Have you actually had a surgery to diagnose endometriosis and tests and scans to exclude the other possible gynae causes of your pains as yet, such as Adenomyosis?

And if you did, how long ago was that surgery and did the surgeon make any effort to remove all the existing endo if that was found?

That would normally be the 1st hurdle to cross with endo, providing youwith considerable relief initially, followed up after that with taking steps to stop your periods or at the very least reduce the number you have each year with the aim of reducing the likelyhood ofnew endo spreading in back flow bleeds from the uterus.

Mirena is very effective as a period stopper, but takes 4-6 months of your cycle to gradually thin the menstrual lining regrowth each month to the point where you no longer have a period.

It is the lowest dose of hormone and the longest lasting period stopper. Can be painful tobe inserted and if you find papsmears painful or sex painful then this toowill be painful and you should ask to have it inserted under sedation or anaesthetic. Provided of course your health insurance covers the costs. I would hope that they do.

It isn't a substitute for surgery, but it can make a huge difference to monthly pains.

Surgery is the ONLY way to be able to remove existing endo and it should be a priority - and we always recommend you skip the standard OBGYN surgeons because they rarely have the skills and training for complex endo surgery which is a specialism and you need to source an expert in the field of endo to ensure you have the most thorough surgery that can be done.

You could be going back to a standard surgeon a dozen times in your life and it's totally unnecessary, if you hit the jackpot with a proper endo surgeon in the first place to a thorough job from the start.

There are other period stoppers available in the UK which you may need to check are available to you locally.

Nexplanon is an arm implant which works for 3 years as a contraceptive and also stops periods in the majority of women after a few months of use.

Taking birthcontrol pill packets back to back for3 or 4 months at a time should reduce the number of periods you have from about 13 a year down to 3 or 4 a year.

As for pain relief -from what I can gather Toradol is similar level of NSAID drug to Naproxen and Diclofenac which are the ones we commonly use in the UK.

Tramadol is an opiate painkiller and a level up from the NSAIDs.

If we visit our A&E accident and emergency departments /equivalent to your ER, in agony- we would normally be provided with an intramuscular injection that lasts several hours and then it is between us and our GP to determine what prescription strength would be the most suitable depending on the individual patient.

We only get see a gynaecologist for the purposes of surgery. I was in my 40s before I saw my first gynaecologist. We have nothing like annual OBGYN exams or assigned OBGYNS over here.

So the management side of endo is between the patient and their general practitioner.

Pain killers need to be kept going. Preferably taken BEFORE a period starts and never left to run out before topping up. That is the most effective way to use them. And that was advice given to me by a cancer pain nurse in the family, and she was absolutely right.

I used to wait in pain till i could bare it no more then take pain relief. Absolutely the worst thing to do, as it then takes so much longer and is so much harder for the body to process that pain relief and for you notice it making any difference. Because by then your pain nerves are going manic and your heart rate is up, blood pressure goes up and you end up in a far worse pickle.

Taking pain killers preferably before but certainly at the very 1st inkling of a cramp or period pain and then not letting them run out makes a huge improvement in how they can work for you. You may not even need stronger painkillers if you have nipped the pain in the bud before it takes hold.

Sudden onset paralytic pain is often caused by a burst ovarian cyst which is 9/10 on the pain scale and can take several hours to subside- even with morphine level pain relief. You can passout on that level of pain and go in to shock too.and it certainly is the kind of pain where cutting out your organs yourself would be a breeze -as would self harming. I don't recommend either option obviously and i am sure you know how dangerous self harming is, so please do not do that again.

These levels of pain are intense but they won't kill you.

Self Harming on the other hand can. I've had many bouts of kidney stones since i was 15 years old. They are the most painful of experiences and the pain is full on for days and days till the stones pass. I can without question tell you that they are worse than exploding cysts, or endo (i have stage 4 severe) and last a lot longer at the top of the pain scales. And many is the time i have been so close to getting a sharp knife and cutting out my afflicted kidney (which ever side was causing the problem- as they both created stones.) So i do understand why you cut yourself- it is a desperate situation but the right thing to do next time and every time is get to the hospital and stay there till they listen, and give you the pain relief you require.

In the event that you have had a cyst explode - and the pain level you describe sure makes me suspect that that could be what has happened, the ER should have scanned you and can still scan you to check for cysts or remains of cysts if one has burst. Remnants of a burst cyst can be seen weeks later not just hours or days later.

The good side of burst cysts is once burst and the pain subsides most are gone.

But there are bad sides- the possibility of pelvic infections needs to be monitored, and cysts can refill up again within a few weeks so rescanning a couple of months later to check it has really gone or check if it has refilled is a useful thing to have done.

The nurse that you considered gave you a condescending remark about you being on birth control was actually giving your VERY SOUND and WISE advice.

If your situation is routinely most painful when you are on a period then by far the most sensible option is to avoid having periods.

Surgery is great- but you still need to cope with the in between times too.

If the extreme pain you experienced was more to one side than the other and came on really suddenly and eases off a lot in the next 48 hours, then a cyst has to be top of the likely causes.

If you are experiencing this intense pain level with the start of every period then it probably isn't cysts but could be endo, adenomyosis, or hydrosalpinx -you might also get checked for fibroids too and if there is any slight remote possibility of a pregnancy then get checked for an ectopic.

A scan may not detect endo but it can check on a host of other possible causes and pick up cysts and even recently exploded cysts too. So should you find yourself back at ER - please ask them to get you an ultrasound on the pelvic region. It is a great foundation from which to determine the direction of any investigations to diagnose what's going on and get you on the right treatment.

There are thousands and thousands of ladies who have endo and who have had cysts burst too whether or not they have endo. Believe me you are not alone in experiencing this terrible level of pain, and we don't all get the right pain relief right away either.

When i was a lot younger - kidney stones were an old man's disease not young girls. I had the devils own job persuading ambulance paramedics that i needed the strongest pain relief, that i had a history of kidney stones. Often I'd get to hospital and be forced to wait for ages for x-rays on my kidneys to see if there really was a stone before they would treat me. It was torture.

We are talking 30 years ago before computerised records became the norm. So it was my word against the doctors thinking i was some kind of junkie desperate for a fix !!

In the end my GP prescribed me glass ampules of opiates to take with me, and should I need them all i had to do was call a nurse or doctor to supply the syringe and administer the drug. Not ideal but better than not being believed and not getting prompt pain relief when needed.

As for endo and years of heavy erratic and long lasting periods-Mirena was my life saver, i hope, when it settles in and gets to work, you find it transforms your experience and stops periods, PMT, pains and pimples. It does all that once it gets working. Marvellous little gadget. I've had mine 3 years now, just under 2 to go till it runs out and i sure will be getting a new one put in. it has been liberating to be free of periods. I can't recommend it highly enough but it does need to be left in there long enough for it to get working properly. Do your level best to put up with it what ever side effects you might experience at first, they do not last & you will be so thrilled to be rid of periods once they stop.

There are a lot of mirena fans. Sadly it doesn't suit a very small but vocal number of people, and it can be removed if that turns out to be the case for you- but with somewhere over 11million women in the world now having mirena, the numbers opting to have it removed early are a teeny tiny proportion and the numbers delighted with it and getting on with enjoying life are not likely to be the ones talking about it online.

Sincerely hope you are feeling a lot better soon and your OBGYN or GP can sort you out with decent pain relief and mirena too.


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