Feel so angry my gynaecologist missed my endometriosis for years and now I have to wait so long for treatment.

[Whostolemyporkpie]

I am so frustrated about this and don’t know what to do anymore.

For 20+ years I’ve been back and forth to the same gynae department for various gynae issues. Since 2013 I have seen the same gynaecologist every year for various treatments and scans. I have had around 5 hysteroscopies during which recurring uterine polyps were removed. I was always promised these would not grow back but they always did. I had to have one lot removed via day surgery as there were so many which could not be reached via hysteroscopy. I became so anaemic that I needed iron infusions due to such heavy periods. I keep all of my paperwork so know I have had some kind of procedure every year since this date.

Eventually, in 2022 I opted for a uterine ablation. That did solved the heavy periods but I have just ended up swopping heavy flooding for immense pain and my gynaecologist concluded that I had ended up developing Post Ablation syndrome having assured me pre-procedure that this is extremely rare (since found out it is not rare at all).
So December 2023 I asked for a mri to find out exactly why I have this awful period pain. Turns out that I have deep endometriosis and diffuse adenomyosis. Gynae is not an endo specialist so referred me on.

I have seen the endo specialist who stated that I shouldn’t have had the ablation as it has allowed the endo to penetrate the uterine walls and therefore develop into adenomyosis. I am so upset especially as I now face a laparoscopy which has a very long waiting list and I won’t be seen until at least early next year. I am now left struggling with pain management. They suggested the mini pill which is making me feel awful with unpredictable bleeding (I’m in pain every time I bleed as there is no where for the blood to go because of the ablation scarring).

I started a thread on this a few months ago and many suggested complaining to PALS. I did this and whilst they were very helpful they then passed the info onto the management team at the gynae department. I had several telephone calls from the manager who, whilst very pleasant, could only state they were sorry and would ‘make notes’ so they can learn by this! That is great for future endo sufferers but doesn’t actually help me right now.

I have to say that I am also not overly happy with the Endo specialist I’ve been assigned. Although, in all the previous years I have had the same gynaecologist (who was a pleasant guy). I have only once had any dealings with my new gynae. This was during a telephone consultation with him back in 2020 during lockdown. No idea why I ended up with him for that one off call but I found him to be extremely brusque and quite rude, he didn’t allow me to talk or ask questions, he spoke over me during the very short telephone conversation. The manager stated that this gynae offered me a laparoscopy during this conversation but I declined. I genuinely do not recall this and I have no post consultation letter from this telephone conversation so nothing in writing stating this (I have kept all of my paperwork from gynae over the last 15 years and usually receive a post consultation letter following most appointments).
I have asked for a copy of the post consultation letter but they have failed to do so. Anyhow, because of this conversation I feel that they are basically saying that I was offered the chance of a laparoscopy back then which could have picked up the endo and therefore avoided the situation I’m now in but this was never mentioned or discussed by regular gynae and he never once suggested checking for endometriosis or adenyomyosis or mentioning the offer of a laparoscopy by the other gynae yet I notice there is a suggestion of possible ‘small adenoma’ on the ultra scan results I had which was arranged by the telephone gynae in 2020. Surely that should have been followed up?

I honestly don’t know what to do anymore. Do I just plod on in pain every month and wait patiently for this next year to get this laparoscopy and excision surgery or push them to expedite my laparoscopy? I hate complaining, I’m a naturally very quite and passive person but I just feel they cocked up and have just left me to it with band-aid/sticking plaster treatment until I can get the op.

You have to wait more than six months for a laparoscopy? That is appalling. As is all the treatment you’ve received so far.

I suspect that had I not paid for just one private consultation, my own diagnosis might have taken several more years. That wasn’t fair then, and it isn’t fair now - when the NHS is a hundred times worse.

I can’t advise on the correct course of action - but I’m afraid passivity will get you nowhere with this. Only money or noise will move things on.

I sincerely hope you have someone actively supporting you through all this, whether partner, sibling, parent, or friend. And that you’re able to take time off from work or study when needed. I’m sorry you’re going through such misery.

Thanks Weirdle yes, sadly it’s over a year’s wait at my hospital.

Most endo sufferers in our area recommend one gynae and I did pay to see him at a private hospital a few months ago but the lap there is £7500 and I just can not afford that so no point carrying on seeing him there at £250 a time. I was hoping he would be my assigned gynae at the NHS hospital but sadly not. He is obviously in great demand.

I worked for the NHS for many years and we had a saying in the office that it was only the squeakiest wheels which ended up with the oiling! It’s true only money or persistence seems to get you anywhere these days. Difficult when you aren’t naturally that way or when we are constantly being told just how under pressure the NHS is but I’m under pressure too, I am struggling to work (have to though as I’m self employed) as I feel so crap. I think they are hoping that because I’m 51 I’ll go into menopause soon and they won’t have to deal with me but endo and peri is not a great combo.

We're moving this thread to our Women's Health topic at the OP's request.

hear hear. I started my periods at 9 and have 20 years of me going back and forth with doctors about concerning symptoms including bleeding so heavy i pass out, debilitating pain and more. Yet it took 20 years for them to even say Endo. MENTAL.

i wish i could have paid private but thats not possible for me unfortunately so i could see particular specialists :(

It boils my blood there are so many of us. My sister was told at the age of 45 she had ovarian cancer, upon waking from the operation she was told the good news that it was actually endo (she too has had years of pain and issues and fobbed off with an IBS diagnosis), that was 5 years ago and she’s never been offered a follow up.

I really wish I could go private and find out exactly what’s happening and the best way to treat all my issues but it sadly seems these days that only those with money enjoy good health.