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?

Honestly the very idea of the coil makes me want to vomit. Also I read it takes up to 6months for periods to settle? Fuck that, I'm on my feet at work all day! I don't have time for that!

I point blank refused hormonal contraceptives unless I was properly diagnosed (I get quite bad side effects from them so not worth that for me if I wasn't sure there was a reason) so at that point they had no option but to try surgery and my surgery was booked in soon after, could try saying the same? I've found with endo stuff sometimes you need to really push, I've turned up to my appts with highlighted copies of NICE guidance before, I had to learn to be my own advocate especially after dealing with a consultant who asked why I was even there since I wasnt actively trying for a baby!!

@Groovee

Why is their answer always a mirena coil?

I point blank refused it and got an ablation but I had to be really clear with them. Even on the day of my surgery the surgeon said she would put a coil in. I was furious and had to really fight my corner.

It's cheap and, if the user has negative side effects, well, it's not them having the side effects, and she can be fobbed off for months with 'it will settle'.

That being said most doctors have been fantastic its just the odd few but they can delay things massively!

I told him on the phone that I absolutely would not take the pill due to the effect on my mental health. He told me the mirena coil was progesterone only so would much better but I am still very wary.

I've just fired off an email to PALs.

Ah yes the baby question, he tried that with me. I refused to commit either way which is why I got the solution of further painkillers or mirena coil depending on whether I wanted a baby.

The thing is, the tablets help the pain but they DONT stop me rushing to the toilet with upset stomach or the waves of sickness I get! To be honest that interferes with my work!

A year for an appointment? That is what stood out for me, you poor thing.

Ah but the NHS is brilliant.

Imagine having to wait that long and be fobbed off. I feel for you OP.

So sorry OP, they said the same to me about mirena not having the systemic side effects (I was near suicidal on the mini pill) so I asked for evidence, peer reviewed articles etc and they came back with "there aren't any but in my experience.." I said that wasn't good enough to risk my mental health potentially unnecessarily and he knew I wasn't messing about then. I did get one inserted after my surgery while I was still under (asked for it if endo was present), it made naff all difference to my endo but I didn't suffer emotionally at all. Every woman is different so it could still potentially be worth a shot. Do you go with a symptom diary? I found they had way less room to argue when I could link my symptoms to the middle and end of my cycle. Deffs push with your GP to be seen again sooner, the sqeakiest wheel gets the grease and all that. I'm not sure if they'd give it without it being confirmed with surgery but the injections to go into temporary menopause have been life changing for me, I was v scared of the prospect but its honestly been amazing so just wanted to put that across in case you had the same concerns I did!

@Endogal I had a different experience. I had zoladex injections for 6 months after my first endo surgery and it hit me like a hammer. I was tired, emotional and almost depressive. I kept bursting into tears at work - I know it was the injections as before they took effect I was delighted and upbeat at being pain free, whereas Cerazette has no bearing on my emotional well being.

@RiddledWithAnger

I told him on the phone that I absolutely would not take the pill due to the effect on my mental health. He told me the mirena coil was progesterone only so would much better but I am still very wary.

I've just fired off an email to PALs.

Oh, yes, they told me that for months. I was using it for contraception and it worked great for that: I never stopped bleeding for months, I had NO libido and my depression started circling the bowl. 'It will settle, it will settle, you have to give it 6 months.' No, actually, I don't have to give it anything, I told them I withdrew consent to having it.

If you've a history of depression and particularly hormonal depression (for women who've given birth, antenatal or postnatal depression, for those who haven't, then whilst using other hormonal contraception), there's a chance the Mirena can have a negative side effect (it's even in their leaflet).

In about 85% of users, it's great, but in those for whom it isn't, it's usually bad.

I've just had a laparoscopy but only after multiple ruptured ovarian cysts. I was diagnosed with endo nine years ago (privately) after 16 years of extremely painful periods. At every stage they pushed for the coil, I'm reluctant to try it as have had adverse side effects from the pill. What makes it worse is that they say it has no side affects and will stop my periods. I'm calling bullshit. They then suggested implant for the same reasons.

@rookiemare its such a mindfield isn't it, everyone responds totally differently in terms of treatment success and side effects, sorry you had such a bad experience with it!

The synic in me suspects all of the funding previously allocated to "women's problems" has gone to the men who pretend to be women.

OP I joined Benenden health so my daughter (17) could get this ruinous condition diagnosed and treated via laparoscopy.
I had a hunch NHS would don her off and they did with a male doctor who I wanted to punch hard when he delivered the 'very normal sounding' diagnosis when missing two years of a teens life and education is clearly far from ok.

Benenden membership is £11 per month flat rate for all. No questions about existing medical conditions or age.

After 6 months of paid up membership if you can get a doctor to agree you need laparoscopy (and mirena) and the wait time is beyond 5 weeks they will fund the Bupa route.

Good luck. It's a horrible disabling soul destroying condition. Wait times are a joke.

I was diagnosed age 40 after years of pain and a diagnosis of IBS
mine was all over my bowel and bladder. I have had 3 surgeries in 2 years!!

how rude to dismiss it as no more bother than period pains!

Periods don't make you .....
spend hours trying to go to the loo
make you feel like fainting daily
Give you B12 deficiency
Make you have a 9 month long solid period
Make you have serious issues with fertility
Give you daily pain that can only be partially controlled by morphine
Make intimacy unbearably painful

Give your head a wobble Doc!

Maybe you should forward this to him! www.thesun.co.uk/fabulous/12482756/woman-endometriosis-undiagnosed-17-years-wins-500k-payout/

I had a copper coil before having kids and the GP had trouble getting it in. All pretty uncomfortable.

Hi OP. Are you near any accredited endometriosis centres? There are 17 in the UK & 20 working towards being an accredited centre (all NHS). If your GP will refer you to one (assuming you saw a gynae consultant rather than an endo specialist) you stand a better chance of a solution that will suit you. Best of luck.

OP, were these male doctors? If so, maybe request to see a female doctor about this?

My hospital appt was in June for very similar. Consultant agreed to do laparoscopic surgery to diagnose endo and also insert coil whilst I'm under but only if I could lose weight.. follow up phone appt is in December. I really want a hysterectomy, I have 3 young kids, severe PCOS and suspected endo. My family is complete and I've had to give up my job because of the pain and bleeding.

I'm so depressed. I'm praying they follow through and actually do something for me after my follow up.

Fingers crossed for your

Riddledwithanger

As someone who has also suffered with endometriosis for many years (since the age of 14, I recognise that now) without anyone realising, I share your feelings. I was formally diagnosed at 31 when undergoing fertility treatment and underwent laparoscopic type surgery. I saw the photos of my endometrosis a week or so post op and it looked like a Jackson Pollack painting; I remember thinking no wonder I have been in pain all these years!.

Many previous internal ultrasound scans as part of this fertility treatment did not show any of the endometriosis which was all throughout my uterine cavity. It is saddening to learn that there is still much general ignorance surrounding endometriosis even now amongst some of the medical profession (there have been Commons select committee meetings into endometriosis and its management and they have demanded change).

I once had a GP tell me that endometriosis was uncommon; I replied that it is the second most common gynae problem seen in women after fibroids. He did not respond.

Mirena is cheap and is often suggested to women (a GP within the last year suggested this to me as I was having uncontrollable bleeding which was subsequently dealt with by ablation) but I think its still not a licensed treatment for endometriosis (I told my GP that and he did not disagree). I would stand corrected if advised otherwise.

You were indeed fobbed off big time here and I am glad you have complained to PALS. I would always advise women to seek a second opinion and from another hospital consultant or different hospital. Have a look at the BGSE website and see if there is an accredited Endometriosis centre near you:-

www.bsge.org.uk/endometriosis-centres/

Re PALS if you could surmise their response this could be helpful also to other women in this situation. I would also urge you and other readers to look at Endometriosis UK's website:-

www.endometriosis-uk.org/

You will need to be persistent in order to get answers. Be persistent!!. Do not be fobbed off as I was back then.

Even in more recent times I eventually had to bypass the NHS for gynae issues. After sending me for blood tests for my uncontrollable perimenopausal bleeding over several months they declared my hormone levels "normal" so no further action was to be taken. I was then advised that I could not see any GP for three weeks as no appointments were available!. In desperation I then phoned the local Nuffield and paid to see a gynaecologist; after some more tests he advised ablation surgery. I've since undergone this and have had no problems.

Endometriosis is also commonly misdiagnosed as IBS; I often wonder about many women who are told they have this particularly if their problems are cyclical in nature.

WTAF!?! Endometriosis isn’t simply a bloody label! It’s a genuine medical condition with serious long-term complications including adhesions, infections and infertility! I would be fuming also! I would report that doctor to the endometriosis society, write them up on every FB page, etc. They will soon get spammed and re-educated!!!

Thank you so much all, I will have a look properly at all the advice and links.

I've had a terrible night. I woke up at 2am in pain so took one of my prescribed tablets. Then spent 2hours in the toilet with hot flushes, extreme nausea and upset stomach. I am absolutely exhausted. I got to that terrible point where I was laying on the bathroom floor sobbing. I honestly cannot go on. The tablets seem to help the pain (it was like a normal bad period) but then I feel horrific with other symptoms.

I've just phoned the doctor to call me back. Those tablets were a miracle when I first started taking them a year ago but now I'm having other symptoms? Having a cry now.

Practical head on, the hospital told me there was another kind of tablet I could take. At the moment I take Ponstan Forte 500mg? He said I could take another drug but I don't remember the name? It began with an M? I wrote it down and now can't pissing find it and I haven't got time to wait for him to write his sodding letter to my GP.

Ponstan Forte (mefenamic acid) is in the same group of drugs as Ibuprofen, naproxen - Non steroidal anti inflammatory drugs.

I looked up the online BNF, & the only drug listed beginning with m used for heavy periods/endometriosis is this:
MEDROXYPROGESTERONE ACETATE