Fobbed off by NHS

Hi all, new and seeking support.

Feeling very fobbed off by NHS. In a nutshell:

I'm 36, TTC for 18 months.

6 months ago went to GP for heavy periods, severe period pain (across back and shooting down leg) and fertility.

Was sent for trans-vag ultrasound & hysteroscopy. Was told verbally I have an ovarian cyst, a fibroid, and a 'ridge' inside my womb (must be either adenomyosis or a uterine septum? but the Dr patronised me by only referring to it as a 'ridge'). Was also verbally told I would need surgery once results came through.

Have waited 5 weeks for full results only to receive letter today stating that all is fine and no further hospital follow up is required?!?! What?! Clearly, follow up is required and was verbally alluded to!

Feeling very lost and frustrated. I know there is something preventing me from conceiving but feel fobbed off by NHS.

Anyone been in this situation or similar? What next? Back to GP?

Thank you so much for your help xx

16 Replies

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  • Hi TrickyRicky...

    I'm sorry to read your story. It's so frustrating not to have proper answers.

    I would definitely go back to the GP asap. Tell them about the investigation and that you want to be referred to a fertility specialist as you have been trying for over a year and are 36 yrs old.

    The ovarian cyst is likely normal and they usually resolve themselves. The fibroid need deeper investigations to see if it's bulging into your uterine cavity.

    I had this investigation done and had to have surgery. It took months by the time it all finished and now in the process of ivf.

    They just need to refer you so you can get this sorted asap and I would push for that.

    I wish you the best and hope you can get this sorted. πŸ€

  • Thank you Beebeestar. Tuesday is soonest I can get back to gp so am going to call for an appointment then. Am mostly concerned by the 'ridge' as I even saw it myself on screen during the hysteroscopy, so it feels very confusing and frustrating to be told there's nothing wrong when there clearly is.

    It's just good to share and feel heard, so thank you xx

  • Yes I completely understand.

    Not great you have to go round the houses after such a long wait.

    Once you see the GP again I'm sure you'll feel more assured.

    I hope you get the answers you need soon...

    🀞

  • Hi, I have had an ovary and tube removed and only have one ovary which is PCOS, I have cysts on that ovary . I have been discharged from gynae for now. If you are in pain go straight to gynae at hospital other than that they say keep scanning may make more worries than needed as usual for cysts to come and go for any person. Just be vigilant for signs of issue, I.e irregular painful periods and or pain in the lower abdomin.

    Hope that helps not the same issue but thought I'd tell you my story. I know how you feel the is very worrying!

  • Thanks girl15 x

  • It's so annoying having to fight for medical attention all the time!!

    I would look at contacting PALS at the hospital where you were seen and file your complaint/concerns and they should pick it up and get it sorted out for you x

  • Thanks Hollibob. I hadn't heard of PALS before so I've now been able to look up my local office. Much appreciated x

  • Definitely go back to your GP and request some proper answers, hopefully a consultation with the doctor who examined you in the first place. Or a copy of the detailed test results that you can take to another doctor. Even if your test results were "fine", you need yo understand why the initial concerns proved wrong. I too had very heavy period, sometimes two in a month and got medication for it and was told to overhaul my lifestyle. Furthermore, I have a fibroid that EPAU thought might have caused my MC last year. I got a referral from my GP to get it further examined but got so frustrated about the endless waiting process that I contacted my clinic again to ask about other options. I even checked for prices for private fibroid removal in my frenzy - at 3-4K very expensive! My clinic did then a relatively cheap Aquatest (around Β£200 if my memory serves me right) to see if the fibroid was blocking anything (there's a more scientific explanation to it lol) and it all came back clear, which - after some careful thinking and sleepless nights - prompted me to try yet again. The fibroid is visible in my scan picture and having my clinic explaining me exactly where it is, how big it is, why they don't think it is any danger etc. has helped me enormously to deal with everything. You have even more going on there with the "ridge" (I just hate doctors who can't express themselves properly). Knowledge is power and you will need that to feel safe to be able to proceed in your journey. Hope it all works out for you xoxo

  • Thank you Nesfin, you just explained everything I'm feeling at the mo! You're right, it's the fact that no-one has actually explained anything which is the most frustrating. Good luck to you too xx

  • So sorry to hear this! I'm afraid I don't hold much faith with NHS where fertility concerned as they did very little to assist me.i would go back, insist that this needs to be looked at in more detail. The examiner shouldn't have verbalised these concerns to u if he wasn't sure so they cannot expect u to reassured now there's a complete different answer on your results!! They've messed up! If they want to more u can raise a complaint x

  • You must be very frustrated and upset by this to me it's sounds like am admin error dr told you one thing letter another I'm sure if you go back and explain all this there will be a follow up. I was 29 when I realised I had fertility problems and had to wait two years for nhs fertility tests and treatments but I think the time to wait is less once your over 35. I'm with nhs and my friend is private and we both feel that the simplest admin errors are made (too many patients) so I think it's a case of doing as much research as you can and ask questions. I turned up for my booked scanned this week which had to be ticked off before ivf only to be told appointment cancelled once i arrived as the nurse hadn't informed me and the blood centre missed one of my tests now I have to wait another month take more time off work and delay treatment -I'm trying to stay clam and think this is part of the bigger plan in store for me. Wishing you all the best with your next appointment xxx

  • Sorry to read your sorry I found the NHS very frustrating and unhelpful too. I was described as having a polyp and only got good help and advise when I paid bupa to treat this (even though it turned out there was no polyp! So they do make quick errors on scans when they see them on hysterocpy) I can't see your GP being able to do much other than refer you back to the same department that just discharged you. After the experience I had I would suggest, if you can afford to, go private for the tests again. You will be seen and have honest results within no time and then you can take the results back to your GP if you do need an op and get on an NHS waiting list. I found the NHS completely soul destroying at times as it was clear from the first specialist appointment I wasn't getting a free go at IVF so they didn't really care. Even getting copies of my file took weeks and weeks to get. Good luck xx

  • Thank you all for your support, really appreciate it.

  • I feel your pain! I'm 36 and was TTC for 18 months but had really painful periods for about 3 years. I'd been to various doctors and nurses who just swapped pills, told me to stop the pill, did internal examinations and told me nothing was wrong. To cut a long story short a year ago I went into get a polup removed and it turned out to be a fibroid so large it filled my whole uterus, the surgeon was quite surprised by the size of it and even if we had conceived the embryo wouldn't of been able to attach as their was no where for it to go. So my advise would be persist, persist, persist. You have to make sure you get all your bits and pieces sorted so you can concentrate on getting pregnant.

    Since then I've had one failed IVF embryo transfer but then fell pregnant naturally over Xmas time so don't loose heart. It can happen, I was starting to think it never would.

    Good luck!!

    Fiona

  • Thank you Fiona, that's encouraging xx

  • Hi

    I work at a hospital and have had many fob offs in my time, don't waste precious time with your GP, go straight to the gynae secretarys and lay it on thick, they should be able to sort you an appointment based on you scan - re-referral from the GP will take soo much longer and you need to get everything sorted as the next step of being reffered to the fertility consultant and getting on the waiting list for IVF could push you over the cut off 40 mark.

    Go get em girl!! xx

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