I want rip my own womb out!

[Unicornspirit]

I'm in agony, I have been bleeding now for 10 weeks and the pain is awful. I'm on dihydrocodeine and a hyocine transdermal patch and it's not touching it. T just turns me into a zombie which I can't be due to having to drive and to work.
I've been asking for a hysterectomy for about 4 years now but it's always denied due to my age. I'm 40.
I have àlways had painful periods and heavy bleeding but this is new to me to be bleeding for so long. I can't function properly because I just want to curl up and hold my belly. I'm exhausted I guess due to the constant bleeding and I actually sit and fantasise about sticking a knife into my belly and cutting my own womb out. I can almost feel the relief from the pressure inside my belly.
I don't have endometriosis but all I get fobbed off with is well its not that so its just painful periods and many women have pain and its normal. I can't live like it anymore. It's not normal to be in this much pain.
I seem to have been abandoned by gynae when they said I didn't have endometriosis. It's like they can't find a cause so just get on with it.
I need to start a battle but does anyone have any advice on how I can get them to actually listen to me and for me to get this hysterectomy because mad as it sounds I'm getting to the point where I think I might actually stick that knife in.
I just can't cope with the pain and it's affecting my job, my home life with my daughter and no one bloody listens to me.

I could actually cry. The ultrasound showed as normal apart from a small ovarian cyst. How on earth am I going to get a hysterectomy now. I seriously can't cope with the agony.

Not a daft question at all, OP. They now diagnose endo from laparoscopic surgery, which obviously has a long waiting list. And still doesn’t always show everything!!

One thing I wanted to say - if you can’t get anywhere quickly on the NHS re the anaemia, you can have an iron infusion privately. Just Google ‘iron infusion’ and your town. If you’re anywhere near London, there’s an Iron Clinic on Harley st. It’s not cheap so shop around if you need to.

NHS blood tests had been coming back as ‘fine’ for 20+ years for me - then I found out that the NHS threshold for ‘fine’ is far far too low. I was so severely anaemic I had to have two transfusions before they’d do the hysterectomy, plus one in surgery and two afterwards. I feel like a new person now.

Sorting out the anaemia won’t deal with the underlying causes (and a transfusion won’t fix things permanently while you’re still losing blood) - but it will make it easier to cope until you can have the surgery.

Thanks Helen, I will look.
I'm so gutted because the GP basically said oh but your only 40 and the scan was normal. Wondering if I will even get to see a gynaecologist now but I am going through Benenden so am hoping they will see me and might be more thorough if as you say the NHS guidelines are low.

My scans were normal. When they did the hysterectomy, the surgeon told me I was ‘riddled’ with endo.

I know how awful it is. And I know how wrong it is that when you’re ill and utterly exhausted, you have to keep fighting to get the medical treatment you need. It’s so unfair.

best of luck to you x

I had horrific periods and after my second child I decided enough was enough.

I refused all hormonal help and insisted on a gynae referral.

They never found a reason but they did agree to an endometrial ablation. They told me the nhs waiting list was 3 years long so I went private (if you can afford insurance get it as it might cover it) and had it done in Feb.

The hospital rang me a few weeks ago and said that they had a date for the nhs surgery so the waiting list might not be that long.

It has been life changing!!!!! I'm 38 and they were a bit push backy about me being young, but they agreed.

I still bleed but I can use a regular tampon for the proper amount of time. I'm bleeding for half the time and it's so light. I feel well for the first time in years!!!

I found that I really had to push and push and push to get the referrals, however they tended to be happier to do it when I said I'd be going private for the procedure.

Thanks both. I'm not crying in a panic now.
I'm willing to try ablation. Done everything else they said. They even put me into a medical menopause and I felt great. Unfortunately they would only let me be in it for 3 months.
NHS gynaecology tried saying it wasn't period related and was my bowel.
The only thing I refused was a hysteroscopy because they wanted to do it with no anaesthesia and I was terrified. They said it wouldn't hurt but going on experience of all the pain I have and the agony of 2 coils being fitted I was too scared to do it. They said if I didn't have it done then they wouldn't allow me to go through and have more tests or see the gynaecology dept again.
Benenden have said they will still see me.
It's so awful what we have to go through and what's considered "normal" and just be expected to get on with it. X

So sorry you”re going through this. For me the key was finding a sympathetic, female GP. I had been fobbed off for years.

Finally got a hysterectomy at 43 yo,. That was 6 years ago and it has made such a dramatic difference to my life. I had Adenomyosis (womb the size of a 5m pregnancy) and a huge fibroid. The resultant anaemia caused pruritus (constant all over itching) which meant I hardly got any sleep for 2 years. It also caused my bladder to prolapse, which could have been prevented if anyone had taken me seriously earlier!

Adenomyosis still isn’t well recognised. When I had the GP organised scan, I was told I had hundreds and hundreds of little fibroids. It was on my gyno surgeon that rescanned and diagnosed Adenomyosis.

you really need to keep pushing to see a gyno specialist.

I feel for you.

Try the ablation. It's a day case and very easy recovery. They did tell me that about 30% of women do go on to have a hysterectomy within 5 years, but I'm ok to do that if I have to.

I honestly hadn't realised how sick my periods had made me. It's like night and day now. I honestly feel amazing.

NHS gynae punishing you for refusing an un-anaesthetised hysteroscopy is appalling. A significant number of women have severe pain from this procedure (look at Hysteroscopy Action) yet gynae persist with the lie that it doesn’t hurt.

It’s equally appalling that women don’t get surgery for very painful periods unless there’s a specific diagnosis of a disorder. And we aren’t allowed to make decisions about having children in the future- if we’re not too old, we’re a potential brood mare.

I hope you get sorted. I read of one woman who eventually got treatment when her husband complained- went to an appointment with her and said that they did NOT want more children and his wife was suicidal. Funnily enough they listened to him.

I was really scared at the thought of an in-anathesitised (you know what I mean!) hysteroscopy but I couldn't feel a thing. There was one point they warned me I'd feel pain but - nothing.

I had (in order) transa-thingy acid; ultrasound; ablation and Mirena coil; hysteroscopy; then total hysterectomy. It took 6 years of awful periods and anaemia to finally get the operation.

Think you've been treated appallingly by the NHS who have also failed you to boot.

Re your comment
"I'm willing to try ablation. Done everything else they said. They even put me into a medical menopause and I felt great. Unfortunately they would only let me be in it for 3 months".

Was danazol prescribed?. I ask only as this is often given to women who present with endometriosis.

I have had ablation surgery and in my case it ceased all bleeding.

Is there a BSGE centre near you; there are far more of these around these days too. www.bsge.org.uk/centre/

This is not right. You deserve proper care, keep fighting.

I had similar issues. No cause was found on scan or hysteroscopy. Had an ablation, which unfortunately didn't help. Was then offered a hysterectomy and went for. This was at 38.

Best decision I ever made. Incidentally - they found adenomyosis then.

I do wonder if I might have the adenomyosis, I've been taken into hospital several times due to the pain, normally off my face and giggling due to gas and air but in such agony. They take bloods, I've had scans and that's it. Painkillers that don't work but never been offered anything else apart from the hysteroscopy.
I read that adenomyosis is difficult to diagnose with a scan.

You may well have adenomyosis as well but given that you've had problems since teens I would think endometriosis is also possible (this can also cause heavy bleeding to arise).

Bloods and scans will not detect either adenomyosis or endometriosis (I can certainly attest to that fact). It was only laparoscopic type surgery that revealed the vast extent of endo present in my uterine cavity. It sounds like A &E have not referred you onto gynaecology either which is also poor practice so I would consider involving PALS (patient advise and liaison service) now.

Just an update, induced menopause for 6 months then hysterectomy. I'm so happy.
Thanks to all you lovely ladies for your kind words x

So glad it sounds like you finally have a solution.
Just in case anyone else finds themselves on this thread, I would strongly recommend that you play the NICE guidelines game. They’re really not interested in pain, bleeding, anaemia etc etc. Tell your Dr that your sex life is suffering and they’re far more likely to take you seriously!!! Wonder why that is?
it took me years to finally get referred for a hysterectomy (at 43). The pain, bleeding, anaemia, puritus was fobbed off. My Adenomyosis has swollen my womb so much that my womb, bladder, cervix, vagina had all prolapsed. GP”s weren’t really bothered by my symptoms or incontinence, but inability to have sex pricked their ears up!
As others have said, Adenomyosis seems to be difficult to diagnose. I didn’t get my diagnosis until I met my consultant a week before my op. Multiple scans in the prior years had failed to see it.