I'm so angry that my gynae op has caused more problems than ever.

[Keepyourheartopenandyoureyeswideshut]

Sorry, this is so long and I'm not even sure why I am posting this but I just can not get over my anger and frustration with the NHS and how they deal with women's health issues.

I am 52 but have suffered and struggled with gynae issues since my periods began at the age of 12. I have always experienced very heavy bleeding and have been anaemic for most of my adult life (the pill drove me crazy). I would also spot or bleed during ovulation and would be in so much pain during mid cycle. This was always explained away as the simple 'Mittelschmerz' that many women experience but for me it was pain so bad that it would hurt to sit and would last a full week. I had lots of ultrasound scans over the years and even a D&C at 28 but nothing found other than ovarian cysts (once told one was a chocolate cyst but nothing done about that) and recurring uterine polyps. In my mid 20's I started to suffer from awful gut issues and have always been told it's 'just' IBS. The gut issues have never left me are in fact getting much worse with age and I am convinced it's all connected to my gyane problems.

In my late 20's I struggled to conceive and it took 5-6 years to fall pregnant at 32 but again was told all normal for some women.

Periods became much much heavier in late 30's and from 2013 until present time I had an appointment yearly at the same gynae department of my local hospital. Endless hysteroscopies, polyps removed each time but they just kept growing back, even had them removed during day surgery as they were so stubborn and difficult to remove.

Eventually I became so anaemic that I opted for a uterine ablation in 2022. I was very anxious about this procedure as it burns the lining of the uterus and I had read some personal horror stories from women following their ablations failing. I asked my gynae many, many questions about this procedure beforehand but was always reassured by him that it was very unlikely to fail. He even laughed at me during one of my consultations, he turned to his nurse and said 'Oh, this is the lady who asks soooo many questions hahahah!', I wasn't too impressed about that at the time and even more so in retrospect because things have not gone well and I feel that I was justified asking so many questions.

The ablation went ahead in April 2022 and it went well, I chose to have it under a LA as I am petrified of GA. It was ok, quite painful but took less than an hour, I went home the same day and recovered well however I was still bleeding quite a lot during each period which was disappointing but there was no pain. I spoke to the gynae and he assured me that within 6 months the bleeding would stop and around 6 months post op and it did. My period in October of that year was minimal bleeding but oh my god the pain which followed was horrendous and pain with each period after that was agony. The pain seemed to cause awful bloating and would radiate all the way into my actual stomach and would last 5-6 days (I have since asked on failed ablation FB groups and many women experience the same pain). I have suffered from IBS for almost 30 years so assumed this was also exacerbating my gut issues as they are now dreadful.

I returned to my gynae late 2023 and explained what was happening. He confirmed that the ablation had most probably failed and just advised pain relief, I said that wasn't good enough and asked for a MRI as I wanted to know what was going on. In December 2023 I had the MRI and it revealed deep endometriosis and diffuse adenomyosis. I was so bloody angry as my sister was diagnosed with endometriosis in her mid 40's following years of issues. I had mentioned this to my gynae several times in the past but he always dismissed endo as I never really suffered from actual period pain (apparently very heavy periods, very painful ovulation and difficulty getting pregnant doesn't ring alarm bells for endo with him).

I was 50 when I had the MRI, now 52 and still awaiting a laparoscopy.

So late 2023 I was discharged from my regular gynae and referred over to the endo team at the same hospital. My endo gynae is very dismissive. He refuses to discuss my digestive issues and says they are nothing to do with my gynae issues (although all the women on support groups I'm on have many gut problems, surely that can not be just coincidence?). I can not now have a Mirena coil as my cervix is sealed shut from the ablation, hrt hormones seem to make matters worse and so I am now on a waiting list for a laparoscopy and will need to face a hysterectomy to remove my adenomyosis riddled uterus.

I am so angry because I have a huge fear of operations and general anaesthesia. The whole point of my opting for a uterine ablation was to avoid any major operations. If the endometriosis had been picked up before all of this I would have never opted for an ablation and I wouldn't have adenomyosis (no previous scan had shown this before the ablation). I have since discovered the ablation has forced the endometriosis into the walls of my uterus. My digestive issues are now daily and really control my life, I am utterly convinced they are connected to my gynae issues but no one will listen to me.

I complained to PALS last year but all I received from the gynae mananger was the standard 'We are sorry and will make sure this doesn't happen again' - all fine but a bit late for me.

I am miserable tbh. Where do I channel this anger and frustration? I really do not want to face a laparoscopy or hysterectomy, I am so scared to go through with any of it but I am going to have to simply because my gynaecologist failed to pick up something which affects at least 1 in 10 women so NOT a rare issue.

I am sorry you have been through all of that but good to hear the Anastrazole is helping you.

I often wonder if my mum had undiagnosed endo. I have only ever known her to be in pain and she had awful gynae issues too. She too has had breast cancer and is currently on Letrozole, since taking this medication she too seems free of many of her previous issues. I have had a quick google and see it is also being considered as an endo drug.

I will follow with interest.

fireplaceember I am in North East Essex. We have a very popular endo specialist in our area but it is so difficult to get an NHS appointment with him due to his popularity.

I am so angry because I have a huge fear of operations and general anaesthesia. The whole point of my opting for a uterine ablation was to avoid any major operations

It sounds as if you should have had a hysterectomy a while ago but didn't want one hence doing anything at all costs to avoid one, and these procedures haven't worked leaving you in pain.

Did they advise a hysterectomy and you refused? Before I got to the end of your post I was thinking why haven't you had a hysterectomy. You didnt want one.

My friend had one for endo and its the best thing she ever did. Pain free, no bloating.

In terms of channelling anger and frustration, if you were advised hysterectomy and said no you've found the alternatives aren't workable. Ablation was never going to work with adenomyosis.

But hysterectomy won’t cure the endo so it depends what’s causing the issue really

Hey OP, I hear your deep frustration. You placed your trust in someone and a service that is meant to look after you and they failed you.
You did everything and more than you could have been asked. And they still failed you. And it has real consequences for you and your quality of life.
I am so sorry you are in this position.
I have nothing to offer except perspective as someone who is dealing with life changing consequences of a medical experience (emergency ablation following labour which consequently destroyed my ability to have more children).
We cannot change what was done. No other surgery, pill or intervention will restore to us what we have lost. We mourn our lost time, we regret the would haves, should have moments that now spring to mind.
Now, we have to put the anger down, put bitterness away. No one else can feel what we feel to the depth and extent that we feel. Everyone else’s sympathies will always fall short, always be inadequate- not from lack of care, just from lack of simply being you.
So, knowing all that, we choose to just get on with shit. Be brave. Make each new decision fresh - with the aim of making things better for ourselves for the rest of our lives. Dont sit in the ‘but I never wanted to be here’ pit for too long (sit there for a bit, you are well entitled!) but don’t waste your precious life in a misery bin.
Whatever your next steps are OP I hope they feel brighter and lighter.

No, I had never been offered a hysterectomy before I discovered that I have the endo and adeno.

I was offered the ablation in '22 due to my very heavy periods and recurring uterine poylps, a hysterectomy was never offered as a 'cure' for these issues. I went for this option in the hope that I would not have to face a large op such as a hysterectomy at a later date (I was assured this would be the case). I did not have adenomyosis before the ablation and the MRI discovered this in Decemeber 2023, so I now have to face a hysterectomy because the ablation caused the adeno due to the undiagnosed endo being forced into the walls of my uterus by the procedure.

A hysterectomy does not solve endometriosis, only the adenomyosis. Your friend is now probably pain free from the endo because they more than likely excised the endo at the same time as the hysterectomy. Even now a hysterectomy is not currently something the endo gynae is offering as a first line treatment.

I am not sure what you are implying or why you have chosen to cherry pick some of my wording but I have never refused a hysterectomy on the NHS.

It sucks, I'm so sorry. I suspect this is the story for many of us women: but the more conservative options are always tried beforehand, to see if they work.

I'm on the NHS waiting list for hysterectomy but have been told that CURRENT times are 4-5 years. Basically only emergency gynae is happening in my area. I have now given up and have an appointment for a private hysterectomy. I can't lose more years of my life to this.

Thank you. I am so sorry for what you have been through

Of course, you are right in what you are saying here.

Please please google and look up Peter Barton smith, a private wide excision surgeon.

You’ve been utterly fobbed off and are about to have more useless surgery. I would strongly advise reading up and only accepting wide excision and I would also in your circumstance advise on a hysterectomy at the same time and get some HRT lined up.

please don’t let them do ablation. (Laser) and please don’t let a gyane operate.

I think that it is why the gynae was offering up all the other options first, he said the current wait for a planned hysterectomy is around 2-3 years in our area.

Good luck with the private hysterectomy, I hope all goes well for you.

Thank you, I will take a look although sadly I can not afford any private treatment.

I have had a uterine ablation. Laser ablation hasn't been mentioned thankfully (I have heard that isn't as successful as excision surgery). The treatment offered by the current gynae would be a robotic laparoscopy with excision for which I have been on a waiting list since May '24. He is an endo gynae at my hospital which is a BSGE endometriosis centre.

I think because it is a hormone blocker it stops oestrogen stimulating endo tissue. It has also been trialed as a treatment for fibroids.
It is not licensed for endo but some consultants are using it off licence.

If you are not keen on surgery it may be worth a conversation with a specialist endo gyni.
I was prescribed Zoladex to try and shrink lesions in my 30s. I had it for 6mnths before surgery and it was helpful. I suspect that Anastrazole would be more effective ( it’s a newer drug). I think that most of us with stage 4 would try anything. A friend who had radical surgery ( wide excision hysterectomy) has had mixed results but she was put on HRT because she was mid 40s. It took a long time to get the dose right so it didn’t cause flare ups in the endo tissue left behind.
There is a good private endo unit in Birmingham. It was set up by Chris Mann who has now retired but incorporates a multidisciplined team who between them cover most of the abdominal specialties.

Your post really resonated with me. I'm in a similar situation. Age 47, only diagnosed with stage 4 DIE in 2024 by an MRI, also suspected adenomyosis. The bit I can really relate to is being scared of GA and operations. I find so many women can't relate to that and just say have surgery. However, I've been told any surgery would be very complex and could damage my bowel, which might mean a stoma. Can I ask if your situation has changed since you last posted? Have you had surgery?

I developed adenomyosis with two adenomyomas after a womb ablation, ended up with a hysterectomy two years later.
No advice but my health has never been better since that op