Just Need Some Help

[red5555]

I am just having a horrendous time and don't know what to do.

I have been bleeding every single day since January 2019. I had the copper coil fitted for 7 months and couldn't handle it anymore so had it removed. In that time, I was hospitalised twice due to the pain.

The bleeding has never stopped.

I have had my smear test which came back normal, an internal and external ultrasound that came back clear, a cervical biopsy which came back normal but I cant leave my house due to how heavy the bleeding is, the clots are enormous and multiple every day. No one will take me seriously.

The cramps have gotten to the point where I can't move or stand and have to engage in labour breathing techniques to get through the pain.

My gp has given me Mefenamic acid, Tranexamic acid and utovlan to take 3 of each, 3 times a day "until bleeding stops" which it never does and then gets much worse after the 10 day course.

I have been trying to exercise (I have mobility issues anyway and am exceptionally overweight) to try andget healthier and lose the weight because that's all they throw at me every time I see a doctor is "try losing weight." But it just makes the bleeding so much heavier and so many more clots after exercising.

I also can't take hormonal contraception due to the adverse effects on my mental health so I just feel absolutely lost and alone and honestly don't know how much longer I can live like this.

I am waiting to see a new gynecologist but the waiting list is 39 weeks (so roughly 14th January 2022) from when I was referred as previous one performed a procedure on me without telling me what they were doing so I refuse to go to them again.

I just don't know what to do.

[Nikkky]

Hi, you are obviously having a dreadful time of it and I do feel for you. Is there any chance you could self refer to a private gynaecologist? A lot of them work both privately and for the NHS, so if you can afford a private consultation at least you’ll be seen quicker. Hopefully you can have a more thorough consultation and get some answers or ideas as to what is going on. It might make you feel a little better just from having someone listen to you and come up with a plan of action. Then if you need treatment you’d be able to have it done privately or on the NHS. If you can’t manage a private consultation maybe you could try a different g.p. I know it doesn’t seem like it right now but it will get better so just hang on in there xx

[635703]

I think you could look on the endometriosis website and call the helpline for some support.

I believe you need to explain to your GP that this is not working and the extent to which this is affecting your life. If nothing happens talk to the practice Manager for support.

Then, I would try Patient Liaison and Advisory Service, which is where you make a complaint. They have to investigate your case and resolve it. But this is a list resort.

You can also look at The NICE guidelines for information on what they should be doing.

I hope this is helpful but I know what it’s like to be exhausted and tearful and unable to function because of Gyne issues. So please forgive me, if this doesn’t help you lovely ☺️

I am so so very sorry that it’s this bad for you and you are in so much discomfort. Big hug to you 💐🌸🌷🌼✨❤️💛

[AllthatGlitters]

Hi I bled for a year and a half and I was basically left to it too apart from having an ablation which didn’t work, menefemic acid and the pill none of which helped me at all. Now on decepeptyl injections.Can you get onto your GP and tell them exactly what is going on and tell them what you expect to happen? I think sometimes you have to be straight to the point and find a GP who is willing to help.

Failing that have a private consultation if you are able to, I had one for £200. They can then put you on the list for scans and operations on the NHS.

It’s draining to loose so much blood, after them leaving me for a year and a half (which I am so angry about) I had to have a blood transfusion.

Sending you a hug, please PM if you need a chat x

[thara9643]

ask your gp to refer you

[Princess_11]

Hi Red,So sorry to hear this, it sounds awful. Like above my advice would be that you try and change your GP and also looking into Endo charities for support and advice.

You are in my prayers. x

[USgalwthendo]

I agree with Nikkky. Just having someone listen to you and take you seriously can be some of the best medicine out there. Validation. If you can afford a private consult I would say go for it. Just wanted to send support your way. It sounds absolutely dreadful what you are going through and I can relate with the exercise trying to lose weight and having heavy flow. They like to blame everything on weight even when thinner people have the same issues. It’s easier to do than actually fix your problem just blame you for it. Well it’s not your fault. You didn’t ask for this. And you deserve good care. You may need to push back until you get it and I know it’s hard when you are already exhausted but good help is out there and it’s worth it.

[Sheep2016]

My heart goes out to you, Red5555. Please know that you are not alone in this - bleeding so much for this long certainly drains you out. I pray that you'll find a hearty GP and gynae soon and hopefully the bleeding will come under control ASAP. 🤗🤗

[sparky_me]

I am so sorry to hear you are having such horrible time. If you can possibly get the money for it, even if it means asking around / crowdfunding, I really think it is worth getting an appointment with someone privately to speed things up. I would also recommend speaking to endometriosis UK help line - this is what they're there for and would offer emotional support as well as practical advice. I hope things get better for you - don't give up xxxxx