I know NHS is on its knees as somone who works there and am studying to work within it I feel like I have been significantly let down.
I had my first gyno appointment today and my ultrasound test was fine but I’m still in immense pain. The pain has definitely decreased dramatically since straying the pill and then moving to the mirena
All I got told was to loose weight and wait for surgery. I think I may just go private
Also ultrasounds are not very good diagnosis tools for any pelvic disorders but I was to overwhelmed to mention it. Everything the doctor said i had already heard from the internet.
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Littlebug77
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Living with the life ruling pain is so isolating and long! I hate being in limbo with it all. Not only the pain but the constant guess work of what the Hell is going on in our pelvis 😏
I have a scan next week, my gut feeling tells me it will be "everything looks fine" just to only leave feeling even more crap.
It's all such a physically & mentally draining battle isn't it 😞
Omg i nooo 😥 I keep thinking the same.I remember going into hospital back in August with severe pain, a Gynea doctor said to me "sometimes woman have pelvic pain & we don't know why!"
I swear his words haunt me! I keep thinking there's no way all the stabbing, burning deep aching pulling life dictating pain is happening for no reason! 😢 x
Trust me, I strongly dislike hearing this phrase. It’s nonsense. Pain never just happens. Pain is a s signal that something isn’t right and it’s their duty to figure out why especially if it’s constant or recurring. It’s not in your head ladies.
I feel your pain so much, I spent years like that too and finally last year I had a hysterectomy. I know its not the op your having but omg it totally changed my life. I had/took so many different painkillers, prostap injection, zoladex infection, marina coil and more. Nothing helped me and finally out of the blue I had the most amazing gynecologist and she told me nothing else would work, my life has totally changed for the better, at 38 I feel like I can actually start living and not overwhelmed with pain. Good luck to you.
Do you think I could ask for one and freeze all my eggs. I think the NHS would say I’m too young - I’m 20 but my youth has literally been wasted by my uterus - funny cause I study this in uni
But I just want to be able to be free again and not have to worry about carrying hundred of pain killers
Ahhh it's so sad, I hate knowing how much pain your in. It's definitely worth an ask in my opinion. Let me know how it goes. I wish you all the luck going forward.
I feel your pain, it took me about 6/7 years of breakdowns, different painkillers, being told to lose weight (which I am now offended by as I wasn’t that big looking back!) being put on the pill, told to switch to the coil which I refused to do, 2 smear tests and poked and prodded I don’t know how many times to get an operation then another 2/3 years to get pain management and now on the wait list for pelvic physio after my GP ignored the first letter saying I needed referred for it and only because I brought it up with my pain management consultant at my second appointment 6 months later and he had to fight to get it done!Will admit the pain is better at this point but I am still in agony when I come off the pill especially trying to go to the bathroom and they’ve run out of painkillers to try is what I was told!
I really hope you can it get someone to help you soon x
Things like this is the reason I want to study to be the head gyno of NHS. I don’t. Know why they aren’t purring more funding towards this and research. It’s makes me cry when I read everyone’s stories and I feel so happy I’m not alone. These illness convince you that you are crazy it’s all in your head and no one else’s has it. I’m so happy I can speak to people who can relate
Yea I get that, I’m always happy when I know I’m not alone but then sad that there are so many other women going through the same struggle and I 100% agree we are made to feel insane! At one point I was actually told it was in my head and that’s just the way periods are! So of course I Googled and diagnosed myself as even friends and family just did not understand and called me a drama queenIt is nice to hear that you want to try to get into the system and change it though, can only hope there are more people like you who really do want to make a change for people like us. I get its not going to kill us but really what sort of quality of life is it when we feel like this
My daughter has been in pain for over a year and a half which we hve been fighting to see a gynaecologist ! I was fed up with waiting . Her scan was normal but thick uterus tissue, she passes decidual casts frequently and was told to carry on pill with no gap.I still wasn’t happy so I will ADVISE to go and see PRIVATE gynaecologist for a consultation . We went 2 weeks ago and asked for work advised to be done by NHS . We now have had a nhs appointment after Els passed another decidual cast last week and the private appointment I feel rushed the nhs.
Els now has to go on injection to stop periods completely every 3 mths and ………
She’s referred el for an MRI which I’ve been fighting all year for
And on the nhs! We feel we are finally getting there.
Worth a private gynaecologist consultation £250 I believe it speeds it all up ❤️
Hi,I have to say, going to a doctor that is helping me to lose weight is making a huge difference. I lost very nearlyb5 kilos in three weeks and the pain overall has nearly gone and so the pressure down there.
I am sorry you are going through this. I had a similar situation and I went private all the way including the surgery because they could not diagnose me on the NHS for a long time and then when my private doctor wrote to them re. suspected endo, they indeed put me on the waiting list but it would have been at least 6 months until the lap could be done - so I just decided not to wait. It is not cheap, I had no private insurance, so self pay (the total cost was around 7.5k with scans and one consultation included - back in 2020) and for me personally it was well worth it.
Hi Mia,I'm sorry to hear you are in so much pain. I guess almost everyone on this site is. 1 in 10 women have endo and most spend years being fobbed off before they get a diagnosis. It's really strange that your pain would increase on the pill, which versoion was it? I don't know about Mirena as I haven't tried that but the idea of both is to stop your periods and that should reduce the pain. Did it stop your periods?
Ultrasound is considered the best way to spot endo because (I didn't realise this until I spoke to a specialist sonographer)the sonographer can actually feel if things are tethered. I had an MRI not lutrasound but it showed up lots of issues ovaries tehetered to bowel, adenomesiosis, almost everything in pelvis stuck together. But I have been told by lots of specialists that ultrasound is even better, but it must be a TV ultrasound andit must be done by a sonographer who is a specialist in this field. If a general sonographer does itthey might not be able to recognise a lot of what they should.
It's the same if you just go to any gynae for my first op I went to a general sonographer who missed most of what they saw then had a general gynae do the op and just burn of the endo instead of cut it out. So it came back really quickly.
Some NHS services apparently especially the BSGE are much better and you can get the right treatment with them some are not very good at all but it's the same with private places, some charge a huge amount and the outcomes aren't any better.
What you need to do is research the best sonographers and the best surgeons and go to them. Professor Jurkovic in London is meant to be he best at this in the UK he works at the Gynaecology Ultrasound Centre. I think there are also numerous good sonoggraphers in the NHS at certain centres. Maybe you should ask on here who has had very effective scans and where ?
I went private for my second op to a surgeon with a gret reputation privately but he misssed most of the endo and didn't do a brilliant job at all. At least if you have a poor quality op on the NHS you aren't 10,000 out of pocket too. I wish I had done more research. There is a facebook group for endo information where patients are allowed to leave honest feedback and recommend or not their individual surgeons, if you look on there the same two or three seem to come up with very good feedback repeatedly so I think they are the best people to see. Goodluck xxx
Hello lovelyI absolutely understand how you are feeling. 6+ Years I’ve been fighting this battle to get answers and it still seems like a long way to go. You know yourself and your body best. I’ve been told over and over my pain is due to anxiety/stress/it’s in my head until I switched GP and he looked back at all my records and recognised that I had a chronic condition that needs to be sorted.
I’ve had one gynaecologist appointment telling me to go on the pill 2 years ago and all my other appointments have been cancelled over and over again and yet I’ve been in worse and worse pain as time goes on.
I’m 25 now so knowing you are so young I can absolutely relate.
Keep going. be persistent. Even if you think you look mental. You aren’t. The pain is real and you need real answers.
All the best and shoot me a message if you need it.
Thank you so much what’s making me feel sick is that this if my first year. I can’t see myself wishing 5+ years that is debilitating especially if I’m in med school it will eat me alive. Thank you so much for the reply
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