is everyone else not getting diagnosed or much treatment?

[pinkie25]

I’ve had severe period pain for years, when I wasn’t taking painkiller in time I would be sick and feel faint. I have tried paracetamol and ibuprofen in the pad which did nothing. I took naproxen 500mg which used to completely block my pain but now only stops it being severe. More recently I’ve been given co codamol (the lowest dose) and mefenamic acid 500mg but both didn’t do anything. My gp wouldn’t prescribe anything else and said I can’t have more naproxen cause I’m on the highest dose. I’m going to try the patch soon but I have to have the week break.

I’m not diagnosed, i said to my gp about endometriosis and he said it was possible or it could be fibroids. I had an abdominal ultrasound, she didn’t do the internal ultrasound cause she said the abdominal scan was clear enough for her to see everything, she said everything looked normal. He said the waiting list for a laparoscopy to check for endometriosis, is several years and he wouldn’t put me on the waiting list cause I have to see if birth control works first.

I feel a bit like nothing is really being done.

[smee3life]

I think you need a new doctor. You are not obligated to put endless medications into your body just because someone doesn't want to do an ultrasound (which does not reveal most endo) or put you on a waiting list for a more standard diagnostic procedure (it's a waiting list, how can that hurt?!). That's not cool, your instinct is correct.

[pinkie25 in reply to smee3life]

I have to try different medication cause if I don’t take naproxen I always vomit from period pain

[JEWM]

I think you need to return to the dr and explain that if it takes years to get to the top of the waiting list, then you need to be on it now. You can always take yourself off again. Also, a lap would need a gynae to refer you and the waiting lists for a gynae are long also…. Insist on the referral to gynae.

If they refuse I’d deffo be thinking about changing drs.

Decide for yourself if you’re happy with various contraceptives or not…. These also have side effects too and for me most have been unwelcome. I’m currently trialling the coil and it’s been ok until this last week which has been mega painful (1st period with it), but I’ve been encouraged to persevere for a few months. Other side effects seem to be absent so far.

Good luck Pinkie!

[pinkie25 in reply to JEWM]

My mum has to deal with it for me and mum said there’s no point anyway being put on a several year long waiting list and she’ll look into private if we have to. I’m going to try the patch but I’m worried it will just make it worse.

[Maggieeeeeeeeeeeeee]

I think we should write a petition to Parliament.

[Jade2006 in reply to Maggieeeeeeeeeeeeee]

Thats really bad advice , would defo change doctors they are totally dismissing you .

If you can I would pay privately to see a specialist in endometriosis usually £250 , you need a internal scan and a mri really,

They can possibly put you on the list for surgery, and it’s not years for surgery that’s a lie ( you can always go a different hospital not in your area if the wait to long )

But you need to be on it

Do not give up .

[pinkie25 in reply to Jade2006]

The ultrasound technician said she didn’t need to do the internal scan cause she could see everything really clearly with the abdominal scan and my ovaries looked normal. And how do you know it’s a lie that the waiting list is several years long. My dad has been waiting for ages for a skin cancer operation and he recently just got sent a letter asking if he still wanted an operation.

[Jade2006 in reply to pinkie25]

Was the sonography technician trained in spotting endo , where they just a general gynaecologist and not a specialist in endometriosis.

I don’t see how they can see without doing a internal but I’m not a doctor .

If your happy with their advice that’s fine .

Birth control doesn’t stop endo from growing it may help with pain though but for me it just masked lots of serious problems .

I suppose on the waiting lists it goes on location , severity x

[Nilamoon]

My Gynecologist in South Africa asked me not to go for laproscopy to find if it is endometriosis as this will be another surgery. She said it will be for the confirmation purposes only as the lining will regrow even if removed. I was 40 then and she suggested I must manage with pain killer as long as possible or until menopause which would be in the next 10 years. I realised that strength training especially deadlift was causing the unbearable pain. Now I just walk and the pain has significantly reduced. It might be the other way for some people. Please try alternate route for managing pain. Change diet , excercise etc you might find a quicker solution.

[Chel91]

This happened to me for over 15 years. In the end I went private, best thing I ever did. I had severe period pain since my first one at 11. After surgery I had complete pain relief on very first period.

If you do go privately make sure you do it with a endo specialist, don't just go to a gynae in your local private hospital. Check out Nancy's Nook FB group international surgeon list for some names of specialists who are well used. Look for others reviews and recommendations of who have used them to also form your decision.

Hate to say this, but many general gynaes aren't trained properly on endo and many aren't skilled enough at excision. By the number of horror stories out there where ladies had surgeries and "nothing was found", or incomplete pain relief. Which was later found and rectified by a better surgeon.

You can also go for a private consult with one of the dual private / NHS doctors, and they can immediately send a referral back to the NHS for you. Which can eliminate some of the wait, but depending on your area it can still be a huge wait. xx

[Sunset-lady]

Ultra sounds are useless really. They identified my fibroids as you could see them from space, but not stage 4 endometriosis. Go back. I'm 50 and it's all stuck together now. I can't have surgery and life is awful at the moment. If you have £200 get s private appointment with an endometriosis specialist then they will write to your GP and tell them what to do x

[pinkie25 in reply to Sunset-lady]

Mum won’t want to pay £200 for a private consultation just to be sent back to an nhs gp and she’s not going to pay privately right now, she’ll put it off as long as she can and she won’t ask for me if she can ask a different doctor.

[Sunset-lady in reply to pinkie25]

Don't forget that they send you back to an NHS doctor with a plan. They tell them from their specialist knowledge what they need to do. Good luck x

[Sunset-lady]

And abdominal ultrasound won't spot a thing. I had 2 when they were convinced it was my gut. All came back normal. If your mum is going to pay then go for it. Find your nearest endo centre on NHS look up the lead consultant name and then Google them and you'll find the private hospital they work at. They ALL do private or they'd be poor! My appointment to see the specialist is 25th June 2024 and I saw him in November privately and now I'm on his medical plan. Don't let doctors fob you off. Good luck xx

[JonesGe]

Dont be fobed off with pain killers and lenth of waiting lists! You need to be refered to a gynecologist they are specialists in femal anatomy not a gp and one ultra sound wont show anything, you need and internal one thats how they see i had endo. If the pain is that bad and the pain killers he is prescribing are not enough then ask to be referred to the pain clinic again they look at different options better than a gp. I ended up having to change my GP as i was not listened to, its your body you know it best.

Unfortunately you have to push back at drs and do your research and educate yourself on endo.

Wish you luck x

[pinkie25 in reply to JonesGe]

I was never referred for a pain clinic in the first place, my gp, both old and new just gave me painkiller and it’s possible the patch will help with the pain but I haven’t got it yet.

[1Poppy1234]

Im totally with you all this pain etc on the TV there's Doctors saying there's no such thing as painful periods blar blar and the reality is you can't get help or very much sympathy. I now take Oramorph which takes the edge off it a bit but doesn't take it off and I had to fight the GP for that!

[wonderlander]

I don't know why they bother with ultrasounds as I've seen countless people say they didn't spot anything. I had multiple internal ultrasounds that suggested everything was normal, had an MRI that went completely against ultrasound findings, as low and behold everything was not normal. If they're saying no to laparoscopy could you ask about MRI - I'm now on waiting list for laparoscopy following MRI results

[KirstyCham94]

i’ve been through the same pain and neglect for 11 years now enough is enough had to self pay and go private having surgery on the 15th may hopefully get answers and my life back my consultant said he is going to do ovarian drilling for my pcos and remove any endo or scarring from previous operations. I wouldn't even bother with the nhs they are not bothered and wont do anything unless your dying 🥺 everyday i struggle at work had so much time off the nhs ( oldham hospital ) put me on a 3 month prostap injection 9th dec stopped my periods helped with pain but put me into menopause praying for a period even though i know its going to be painful my pains are coming back now i feel drained physically and mentally the hot flushes from the injection have been awful and had zero help what so ever. I’m hoping and praying after this surgery i will start to feel normal again. Deffo go private they do fixed payment packages mines costing me 5,000 i wish you the best honestly i cannot believe how many of us are neglected gaslighted and left to suffer alone xx

[pinkie25 in reply to KirstyCham94]

I have gone private now though my consultation got pushed back another month cause the clinic had to close on my appointment day. It’s now on the 20th of June

[KirstyCham94]

i’m sorry to hear that i hope you get some sort of help soon 🥺 x