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.

So Sorry for what you are going through.

I was under gynae 6 years (after 10 years of making do with the GP’s suggestions & treatments) before I finally got my hysterectomy. I only got that because after a follow up, several months after trying their latest pill suggestion, I broke down and sobbed and basically begged for a hysterectomy.

I swear if men had periods, and the associated problems some women face, that gynae would be better funded and there wouldn’t be the hoops we have to jump through now to get our issues resolved.

Are you still under gynae? I think I would say exactly as you’ve said here, or even better, put it in writing. State clearly that it is seriously affecting your mental health and you are verging on being desperate enough to attempt a permanent solution yourself and ask them to put you on the list for a hysterectomy.

If you aren’t under gynae still, then write that to your GP and request re referral because you want to be put on the list for a hysterectomy.

I had to actually wait 13 months before actually having my op after they had agreed I could go on the list, I’d looked into private but couldn’t afford the £7,500. I was so ridiculously happy when the day finally arrived, it really has been life changing for me. So sorry you are having to go through the same ordeal to be able to live your life pain free. I hope you can get someone to listen to you.

Have you asked about adenomyosis?

What tests have you had?

I had heavy bleeding daily for long periods of time (painful but could control it) and tried mirena (twice and both fell out!) and ended up on northisterone.

My ferritin was 6 due to the constant blood loss.

I was referred last April to gynae to talk about surgical options. Saw gynae in October and had biopsy of endometrial layer at the consultation.

I had a hysterectomy last week. I'm 41.

Thanks for the replies. I've not had a blood test but will arrange one on Monday. I've just had an ultrasound and awaiting the results. I want it to "be something" so it can be treated rather than the usual bull of its just heavy periods. Last year I had to call 111 to see if I could get a prescription for the pain as nothing was helping. They sent an ambulance and I said to the paramedic I was so sorry as I felt I was wasting their time. He said no one should be sweating with pain and took me in to hospital. They did a laparoscopy but found no endo. Would that show adenomyosis or is that not visible on a laparoscopy?
Since then I've had nothing. They seem to have dismissed me as usual.
I'm so so desperate for a hysterectomy so I can live my life and the pain to stop.
I'm in a battle mood now because someone has to listen to me. Women are fobbed off way too much.

I had endo, adenomyosis, cysts and a huge fibroid at various points over a period of 25 years. I finally had a hysterectomy last month.

Endo doesn’t all show up on scans, for a start. Apologies if I’ve missed this, but have you had any investigative surgery to explore endo? Do you have any fibroids or cysts?

I was 46 when I got the go-ahead to have my surgery so older than you, which may have made a difference. When I saw my gynae, they had a questionnaire to fill in: one of the questions was ‘how does it impact your daily life?’ I told them the truth - I had no social life due to heavy bleeding and exhaustion. I used the words “I cant
go on like this”, which I think made the difference.

If you have a decent GP, suggest you go back to them and tell them what you’ve told us. Explain how bad the pain was. Tell them you’re done having children or don’t want anymore. Go into detail about the impact on your life. Ask for a referral to a gynaecologist that you can talk to about having a hysterectomy. Don’t ask if you can have one, use statements like “I want a hysterectomy as soon as possible. How can we make that happen?”

It enrages me what women are expected to endure and view as normal. I bled every day for over a year and between 35-46, i had six operations and 3 A&E admissions before my hysterectomy.

Three DAYS after the op, I was in less pain than I’d been in for over a decade.

good luck x

Adenomyosis wouldn't show up on a laparoscopy. It may be diagnosed from your ultrasound but might not be, that doesn't mean it's not there.

Totally agree with PPs that you need to explain the impact on your life to your GP and insist on referral back to Gynae. Ask specifically about adenomyosis. I'd also suggest you join the Hysterectomy Sisters UK Facebook group and ask there for advice for good gynaecologist consultants in your area who will be happier to operate on you given your age (there are a lot of much younger women there who have had hysterectomies).

Finally, is there any chance you can afford to go private? In my experience the NHS will do anything to avoid operating and even if they did agree it would likely be years long waiting list. Most private hospitals have monthly (0%) payment plans. Again the FB page will give you an idea of costs in your area.

Best of luck. I had a hysterectomy earlier this year (age 41) - best thing I've ever done!

If endometriosis is present the surgeon could have missed it during the lap op. It does not always present typically and it can be missed.

You need a diagnosis first and foremost.

You do not need a blood test as much as another gynae who will actually listen to you properly. . Settle for nothing less. If you have the financial means to go private to get an initial consultation I would do this.

An ultrasound may well prove inconclusive or show nothing and if it is do not be surprised. It won’t detect endo if it is there (I have had more internal ultrasounds than I care to mention and none of them showed the vast expanse of endo throughout my uterine cavity) nor adenomyosis.

You will need to be persistent in order to get answers. keep pushing.

My eldest has endo and wants a hysterectomy at 25.

The GP said "what if your DH wants children"

FFS

I was 45 when I got a hysterectomy. I had to make an official complaint at the hospital I had been referred to against the consultant I was seeing who was doing very little and wanted to discharge me. They put me on somebody else's list pretty quickly after that and I finally got the hysterectomy.

I had endometriosis and adenomyosis with a big lump of tissue the size of a tennis ball at the top of my uterus. I was bleeding and in pain all the time. I even had to be taken to hospital in an ambulance once while I was at work after I started hemorrhaging in the office corridor...after that I was in A&E pretty much once a month to the point the the ward was as familiar to me as my living room...

I had so many tests to try to diagnose what was going on scans, MRI, endoscopy.

They first made me try a mirena coil (it was rejected by my body after 3 days), hormones, various contraceptive pills, tranexamic acid even an endometrial ablation.

This went on for a year and nothing worked so I put my foot down and said we had tried everything and I no longer had any quality of life so it was time for a partial hysterectomy. I was in so much pain and I had no life. Thankfully the hysterectomy gave me my life back.

You need:

• the right tests and a proper diagnosis
• to get that you need a new, urgent referral to a specialist who will listen to you
• make a complaint to the practice manager if you have to but don't let them fob you off
• The hospital will be able to diagnose you if you have adenomyosis or cysts, fibroids or whatever else is causing your bleeding.

Blood tests and a GP is not what you need. You need specialist care.

I think women are treated appallingly when it comes to issues like this and it is such a shame that it takes such a fight to get the right treatment.

I had ultra heavy periods with bad cramping. Nothing worked (ablation, Mirena, pill). One day in desperation I asked advice on Holland & Barrett and they recommended Raspberry Leaf tablets. They were miraculous! Much less severe periods, no cramps, all manageable. I can't recommend them enough.

Thanks to all of you for your lovely advice. I'm going to try everything you all said re consultants and raspberry tea.
Might sound daft but if endo or adeno might not actually show on ultrasound/ laparoscopy then how do they actually diagnose it?
Re the blood test, I think I'm now anaemic due to 11 weeks solid bleeding so was thinking that might show from a blood test. I know a blood test a few months ago said megoblastic anaemia but they've not treated me for it. Nothing happened at all so I just thought maybe it wasn't bad enough to treat but I feel like absolute crap all the time now and finding it hard to get through a day.
I'm just taking the dihydrocodeine as it knocks me out. Doesn't actually touch the pain. It's just so I can sleep.
Women are treated appallingly yes. We shouldn't have to have such a hard time to be listened to or treated.
Re private, I don't have the money but do have Benenden so even if NHS agrees re hysterectomy then I can get it done much faster at Benenden. It's getting the NHS to agree it first.

I'm so sorry, this sounds horrific.

One thing I do know is that it pays to repeatedly go back to gps and emphasise the low quality of life. Define what that looks like as it sounds as if it is an actual disability at the moment; your life is severely restricted due to this condition and it's one that can be treated.

request a plan for how to move forward. Working with a Gp who can champion your case can make a huge difference.

Saying there's no endo hasn't dealt with the issue. The next step is to deal with the issue at source. It perhaps doesn't matter what its being caused by; the solution is clear. I think though it's the system that the consultants pass back to Gp which means the onus is on patients to continue to ask for help.

My adenomyosis showed up during an ultrasound that was actually carried out as I'd had a coil and the strings couldn't be found and I was still bleeding heavily.

Coil was there (it came out a week later!) but scan showed huge patches in my uterus and that it was very enlarged.

Have you tried northisterone?

I took this daily for over a year to stop the bleeding as I just couldn't manage it any other way.

@Unicornspirit Not raspberry leaf tea. Tablets. These ones.

www.hollandandbarrett.com/shop/product/natures-aid-raspberry-leaf-tablets-750mg-60001766

I think that the surgeon missed something fundamental during the lap op you had. Endometriosis does not always present typically so it can be missed during a lap. It can also depend on the skill and experience the surgeon has had with such cases.

in your circumstances as well I would not have a mirena coil. I mention that is this may now be offered. As I understand it currently it is not a treatment for endometriosis.

if you return to the GP I would insist on being referred also to a BSGE centre which are supposedly centres of excellence when it comes to such issues.
a link for this is here

www.bsge.org.uk

i think you'll find if you say you are very seriously considering suicide they will take you more seriously. I had to pull this one for another problem I had and there were results straight away.

May I ask how old you were when you started having painful and heavy periods?. I ask only as I was 14 and this all started with me upon onset of menses at that age.

You need to speak to your gp and tell them exactly how you are feeling and what the pain is doing to you. Can somebody come with you to the appointment to advocate for you?

I cant belive they diagnosed megaloblastic anemia and havent done anything about it. That is dreadful. You should be on high doses of vit b12 and 9 to treat it and they should be looking for the possible causes (although I think bleeding for 10 weeks is likely high up there)

Please go back to the doctor and ask to be treated immediately for it and then tell them that you are thinking of self harming due to the abdominal pain. Dont let them off the hook for either issue.

here is some more info on the disease

my.clevelandclinic.org/health/diseases/23160-megaloblastic-anemia

My friend had something like this. I don't think it was as serious as what you've described but she went to a homeopath and the next month her bleeding reduced significantly.

I can sympathise OP. I have PMDD and every month I feel like clawing out my womb by any means necessary. It feels like the cause of all my issues. I know obviously that hormones are at play but the sore, aching, throbbing womb is like a constant reminder of why I feel shit for 2 weeks every month.

Thanks for all the lovely advice and replies. I've not been on for a few days as have been feeling so rough.
I nagged and moaned at the doctors and they fitted me in for an ultrasound which I had Saturday. Blood tests tomorrow to see I think ferritin and iron etc. Don't know results yet of ultrasound as although the doctors got it yesterday they've not reviewed it due yo staff shortage.
I spoke to the hospital today to find out waiting times for an appointment and they said 7 to 10 months so phoned benenden and they have set up a case for me. They said they need a referral and then will do diagnostics and further treatment if needed. I'm really pushing for the hysterectomy. They said a matter of weeks to see me.
Thing is, I went to the docs about this and no one seems to talk to each other or referrals are promised and not done. I could have already had an appointment by now if they'd actually talk to each other.

I was 14 when I started and they've always been a nightmare with the pain. 26 years is enough x

Thanks, no wonder I feel so bloody awful.