I'm so pissing angry

[RiddledWithAnger]

Suspected endometriosis. Sympathetic doctor. Waited a year for my appointment at the hospital. Had it today.

Apparently they don't routinely like to try to diagnose it or "give it a label" as period pain is so common.

Given options of tablets or mirena coil. That's it. Because there is no reason to do a diagnosis. Fuck me, my doctor could have told me that?! I waited a pissing year for that?!

I don't care how unreasonable I might sound but is it so terrible that I want a fucking diagnosis? Or, ya know, someone not to just put down my horrific pain as normal? I just want to rip my womb out. If men suffered from this I'm sure more money would go into it.

On a side note, exactly how painful is the coil to put in?

Thank you, the appointment cost isn't too bad it's the cost of surgery I'm worried about

Ask your doctor to refer you under NHS choices to your nearest private hospital, most do an amount of NHS work to keep waiting lists down.

OP you don't have to have the surgery privately. You can pay to see the consultant, and then go on an NHS waiting list for surgery - at least you would have seen someone with the time and inclination to examine you properly, and recommend alternative treatments. You may find that you could have other treatments privately - a laparoscopy may not cost thousands, since it is keyhole - it's worth asking.

No expert, but as far as I know private health insurance would not cover you for a known condition - or if they did they would charge you so much it would be the same as paying yourself. Insurance works on covering you for the risk of the unknown, rather than assistance to pay for something you know you have.

Best of luck

It seems as if the major part of the battle is actually getting on the list for a laparoscopy. Having the initial consultation privately should allow that to happen, as based on your symptoms it's a fairly obvious next step in the investigation.

My parents have done this loads of times

1. Book to see a private consultant for a consultation on X issue

1. If the consultant recommends surgery/laproscopy, ask to be put back onto the NHS

1. Wait for NHS slot.

1. Any followup care needed, see if NHS will be helpful, if not go back private for another appointment

You can mix and match private and NHS to get things moving and have a proper diagnosis that isnt based on the cheapest option they can get away with. If you are diagnosed, the NHS have to treat you using the recommended pathway from the consultant.

The only part you have to be cautious of is if you need blood tests etc to be diagnosed. Sometimes its best to do that privately too and can add to the cost, but you can and should be up from at the first private consultation about being on a limited budget and wanting to stretch it as far as possible.

My Neuro consultant saw me private for my first appointment & then moved me to his NHS clinic for the scans & other tests the week after.

Amazing everybody, thank you so much! I think this will definitely be the route I go down now as I am clearly fighting a losing battle.

I am so angry for every woman like me, especially for those who don't have the option to go private. What a tucked up system.

Sorry I have another question
I've already had the bloody tests and a scan done that all came back clear under NHS. So can I just make an appointment at my private hospital and tell them that? Will they be allowed access to my medical records to prove I had the scan etc?

Or does my doctor have to refer me to them? Their website allows me to book consultant appointments etc so I don't think I have to have a doctors referral? I just want them to be able to see my records.

"I've already had the bloody tests and a scan done that all came back clear under NHS. So can I just make an appointment at my private hospital and tell them that?"

Yes and I did this too. I told them that a recent blood test had come back "normal".

Will they be allowed access to my medical records to prove I had the scan etc?

They won't need such access. My previous records were not accessed at all when I went for my ablation surgery; I told them what happened previously with regards to fertility treatment and my subsequent diagnoses.

Or does my doctor have to refer me to them? Their website allows me to book consultant appointments etc so I don't think I have to have a doctors referral? I just want them to be able to see my records.

I self referred as a private patient without consultation from the GP and I did that when I was getting nowhere further with him (my scenario was no further appointments being available for three weeks after a blood test came back as normal. I was by now flooding as well as bleeding continuously; I felt like I was in real difficulties).

Just book yourself in.

You can tell them about your previous test results, if they need to see them, they will find a way to access them. You could also try going to your GP and asking for a copy of the results to take with you, or for them to be forwarded directly to the private consultant.

But basically, just make the appointment, everything else will sort itself out. You need a laparoscopy, its the only diagnostic method for endo. I dont know why they even bothered to scan you. They dont need scan results and blood work to decide you need a laproscopy

I just want to thank you all and give you an update from PALs. Honestly, thank you so much for the advice as I would just accepted it and suffered for years!

PALS update:
They phoned me this morning to tell me that they had forwarded my complaint email straight to the gynae department Apparently the doctor I complained about responded to them within record time of about 10mins! He offered a face to face appointment and expressed that he wanted to "improve my experience". PALS were very good and said that they knew I was probably thinking well why didn't he give me a good experience the first time round but at least he had responded quickly.

They gave me the option of either seeing him again or being referred to the other doctor but if I did that there would be a significant wait time. We agreed in the end that I would see the same doctor as he wasn't rude etc and I felt better equipped to argue my case. PALS also said that they very rarely had a doctor respond to a complaint in such a short amount of time so it was refreshing to them and they felt that it probably showed the doctor did take some responsibility for it.

I've since had the doctors office phone to tell me they will book me in but at the moment they will need to phone me back as it is done on a week by week basis because of COVID.

So...a better result? I'm genuinely terrified of facing that doctor face to face and I won't be allowed to take my husband to the appointment to help me fight my corner.

You ladies have been absolutely amazing. I'm going to read back over every post and note down any research and advice and go in armed with that. I will be asking advice again before the appointment and I will keep the thread updated because at least it might help somebody else. I might ask mumsnet to change the thread title to include endometriosis" in it to make it more searchable!

I will definitely be booking into the private hospital too if this comes to nothing (as it probably won't change very much) so thank you to those who gave me the advice on private care. I'm a bit worried he only wants to see me to persuade me that the coil will be best!

That feels like progress. Please do take notes with you in case you get flustered.

Good for you!!! May I recommend taking notes on everything this doctor says? (Record in your handbag if you must, but that will be for your use only...) Ot shows that you are not going to be dismissed at all. Definitely don’t go in all angry and arsey, but don’t be teary or upset either. PleSe try and keep it together. I would let him apologisr first and then state that it is utterly wrong to dismiss a genuine diagnosed medical condition in such a manner, and this could have been very dangerous had you been a more vulnerable or uneducated person. If he had been paying attention, he would have already learned that you have a diagnosis already and you wish for an effective treatment... NOW!

Also, take a list with you

first all your symptoms and how long each of them has been going on
second all the treatments you have tried and for how long
third all the treatments that you have been offered but havent tried and why
fourth what you want to happen
fifth any follow up questions you have

Print it out and take two copies. Give him one at the start of the appointment and say you would like to address all the points and thought you would write it all down to make it easier for all.

Make sure the lists are concise and factual, absolutely no feelings unless its a clinical symptom

Thank you, will definitely follow the advice and take a list!

Just wanted to add some intel @RiddledWithAnger

My 17 yr old daughter has been bedridden for a couple of years due to suspected endometriosis but last week finally had the investigative laparoscopy which revealed no endometriosis but 'severe pelvic congestion' due to 'lots of varicose veins' in her abdomen.
Did not see that coming and in fact on picking up with her GP once the surgeons report was received she'd not heard of the condition nor had my best friend's (retired) family planning doctor.
GP said maybe it's one of those conditions that is often undiagnosed or presents as IBS.

I asked for a new referral to a vein specialist but apparently the first line of treatment is, like endometriosis, the fitting of a Mirena coil (nit much use if you're TTC but she is not)

Just thought I'd log this info on this thread in case it is useful.

Oh my gosh @Ruralbliss your poor daughter. That sounds horrendous.

I’m obviously not a doctor but how does a mirena coil help varicose veins?

@Sexnotgender fuck only knows. Something about they are responsive to hormones from my shocked convo with the gynae surgeon over daughter's post-operative head.

GP can't refer until the mirena has been in for 6 months (she had one fitted whilst under the general for laparoscopy) but she then said 'Come back in three of things are still bad and we'll do another referral'

Poor kid now whacked out on mega strength codeine and now anti depressants and left college.

Hi all! So I thought I would update the thread!
After I complained, the hospital promised me they would book me in to make my experience better. They never called me to arrange. What a shock.

I booked and had a private appointment and it went well. The upshot was, she felt it very likely that I have endo. She discussed the reasoning behind taking the pill and the coil, simply it's better to try those first before resorting to surgery. We talked through all my symptoms and difficulties. She was sympathetic and understanding. An internal examination showed that my cervix and ovaries are "free". It could be that I have a "dusting" of endo rather than the more serious types but she pointed out that the amount of pain doesn't link to the seriousness.

I asked what she would suggest. She recommended a laparoscopy, as I've been suffering for a long time, as really it needs to be diagnosed properly (thank you - the NHS don't agree!). Then, if I agree, she could put the coil in at the same time/treat what she can while there.

I can do this privately or she is happy to refer me to the NHS for this. I need to see what the cost will be as I'm funding myself.

So, at least I have my referral!

I would if at all possible have the lap done as a private patient particularly given how you've been treated under the NHS to date.

I would insist to them most strongly that you are given a follow up appointment a week or two post lap op to discuss the findings. This should certainly not be a topic for discussion when you are in the recovery room and apart from anything else it is poor practice. Will be happy to give you a list of questions to ask them re the lap findings at such an appointment if you wish.

In my long and unhappy experience of endometriosis the pill merely masked the symptoms; it did not eradicate the endo that was already there (my extensive endo was diathermised and lasered out). I refused the mirena coil also because of the endo, I was not convinced it was going to help.

"Milder" forms of this can and indeed cause more pain to arise; it is when it becomes chronic that pain can lessen. I was diagnosed with endo and my entire uterine cavity looked like a Jackson Pollack painting. When I saw the photos I remember thinking, "no wonder I've been in pain all these years".

BTW www.endometriosis-uk.org/ is a good informative website.

Good luck, do keep us posted.

If it is endometriosis then the coil will likely help - it’s changed my life - I know you want a diagnoses but it will help the pain etc.

I was diagnosed 21 years ago and it was a struggle back then to get a diagnoses - only through having a burst cyst did I get the diagnoses. Since then roughly every 5 years the pain is awful I have another operation to remove it - the issue now is I have scar tissue internally which the endometritis loves to stick too - 5 years ago had my first coil and I wish I had that first 20 years ago without the numerous operations.
Try the coil it’s the only cure for endometriosis known - if it doesn’t work then push for further diagnoses? Surely the six months to settle is no worse than the pain your currently feeling anyway?

Not sure o should have used the word cure - but eases the symptoms!