Persistent pain and no periods five months after miscarriage surgery; how to get NHS help?

[GalwayGurl]

I'm going to try to keep this concise but it'll be hard, excuse me. Anyone with any knowledge of how the NHS works and what I could do to further my cause much appreciated.

Background

-I had surgery for miscarriage (second loss, no living children) at the start of April and since then something has been really wrong. Symptoms have included constant low level pain, ovulating regularly but never getting a period, very intense crippling pain during the week I 'should' get my period, vaginal pain, severe lower back pain, exhaustion.

-I became worried about Asherman's (uterine adhesions) and contacted my GP who agreed and put in an urgent referral for gynaecology. At first they rejected it altogether asking me to wait, then they accepted it eventually but told me the waiting list was approximately a year to be first seen, then 1-2 years for surgery after this.

-I therefore went private to get consultations, scans, and a hysteroscopy which confirmed adhesions and removed them. I hoped this would help with symptoms but it's not.

-Post hysteroscopic surgery, I still have no period (last one January), am in constantly worsening pain to the extent I've had to take time off work and get occupational health involved.

-GP are helping with pain management (I'm on a cocktail of the strongest drugs they can prescribe) and have generally been very sympathetic but say there's nothing they can do to speed up gynae wait.

-I've basically spent all that I would be wise to spend on private care now. I can't really afford much more. So I'd love to actually get treated on the NHS.

Any recommendations for me?

For info, I have already done the following
-Asked if there's a more urgent referral that can be done (there's not- mine is apparently flagged as urgent but the waiting list times here are awful)
-Asked if I can be referred to the emergency gynaecology unit in the hospital (I can't- apparently you need to be heavy bleeding/collapsing to get a referral from GP, and you can't just 'walk in')
-Contacted the EPU which arranged my initial surgery. Been told that regrettably they couldn't look at me/refer me on because I'm not pregnant any more.
-Asked for a referral to the fertility services, given that I don't have periods and am TTC. Have been told that my GP will refer me but at the moment the average time from referral to actual treatment is over two years, and by then I'll be 40. If I was to need treatments like IVF, this would rule me out.
-Complained formally to the NHS about a few different aspects of my care post surgery which I feel were insufficient. Complaints were closed with the NHS satisfied they followed all protocol successfully and that I'm on the correct pathway for my symptoms.

I'm heartbroken, my mental health is shot to pieces, and I'm exhausted from living in pain all day every day post surgery.

Is it basically private or accept that I never get to have kids/be free of pain?

I hope this information might be of use to you, bless you that’s all so trying www.nhs.uk/using-the-nhs/about-the-nhs/your-choices-in-the-nhs/

Friends of mine had toe surgery done in a private setting, under the NHS.. or can you see where the waiting lists are shorter and can you be seen there, an AI assisted search tells me “The shortest non-cancerous gynaecology outpatient department (OPD) referral wait times in England are found at Oxleas NHS Foundation Trust with a median 2-week wait, followed closely by The Hillingdon Hospitals NHS Foundation Trust and The Christie NHS Foundation Trust. Data tracked by independent monitoring sites like Hospital Waits and WaitRadar highlights the top performing areas. 1, 2, 3]”

@Mullaghanish thanks so much for taking time to reply. It is so appreciated.

Should have mentioned I'm in Scotland (guidance you sent is for England).

I have checked guidance here on waiting list times but in Scotland gynaecology is exempt from the usual waiting list guidelines so as far as I understand you can't request an alternative pathway. I do really appreciate you sending that info though.

re “Post hysteroscopic surgery, I still have no period (last one January), am in constantly worsening pain to the extent I've had to take time off work and get occupational health involved” would 1 more OPD with the surgeon who did this be worth it?

@Mullaghanish I'm actually thinking he was not a total Asherman's specialist so I would perhaps seek someone else for another surgery, but that's another story...

Anyway, I could perhaps stretch to one more surgery but they're not cheap (around £5000 per surgery- and I've spent around £6000 so far on total treatment- so another surgery would see me at about £11k spent so far) so if I had to get another one privately I'd have to think really really carefully about it. I don't have that money sitting around.

I just meant I more out patient appointment to see what’s the story? I got vertigo for 3 years in my early 40s and couldn’t understand how I’d be left in that state from day to day. I can’t imagine what you’re going through, having pain but no definite cause??

Would you be able to let the hospital know that you can accept a short notice/ cancellation appointment ( if you can attend at short notice)?

@Mullaghanish ah, got you. So I have one follow up appointment included in my follow up care for my surgery in a few weeks. But from emailing the consultant so far it seems he’s pretty clueless as to why I’m still in so much pain and can only think to recommend another surgery.

@Changeisstillpossible thank you, I have done this from the start so since May 2026 have been on a cancellation waiting list, but even with this have been advised it will likely be March of next year before I receive a first triage appointment.

My good friend developed Ashermans after a miscarriage. Same symptoms as you. She required two specialist surgeries with a specialist consultation and surgeon in London. It it nowhere near a hysteroscopy surgery at a local hospital level of treatment.

@Didimum thanks so much for your response. I’ve booked a phone consultation with one of these specialists in London next week to get his advice on next steps. You’re right it’s already so much more complex than I could have ever imagined 😢

@Didimum I guess I just also hoped the NHS could step up and help but I may have to accept not

If it helps to hear, she fell pregnant quickly after her surgeries and had an uncomplicated, successful pregnancy.

It’s very rare and the NHS just doesn’t haven’t the people or resources to put into it. My friend could not even get NHS gynaecologists to take her seriously when she brought it up as a concern.

@Didimum the sad thing is that when you research into it, it’s not actually that rare, just hugely under diagnosed. There are quite a few studies suggesting that up to 40% of women who have a D and C end up with Ashermans to some degree, but they either don’t realise (if they don’t have physical symptoms- they might just find themselves with secondary infertility) or don’t get NHS diagnosis. I’m part of some groups online just to get other people’s experiences and there are thousands of women having to go private all the time just to get diagnosed because the NHS doesn’t believe them.

Thanks for sharing the tale of your friend and hopefully one day I’ll manage to sustain a pregnancy too.