At wits end... I won't stop bleeding

[CinnamonSwirl82]

I feel I need to vent. I'm so defeated. I don't know what's wrong with me and the doctors keep telling me nothings wrong and my tests are normal.

I've been bleeding constantly since Oct 2022. Not even light spotting, or here and there. Its just constant. Constant heavy bleeding.

I'm tired. I feel so drained I struggle to get up on a morning. I'm waking 3 times minimum each night to change myself so I don't leak everywhere. I've ruined our new mattress to which I feel awful but DH keeps telling me it's fine and stop stressing. I can't stop though because I'm so tired and cranky and I feel guilty.

I've had scans done and nothing wrong shows so doctors tell me I'm fine. They've tried taking blood but can't get any out of me (I've probably ran out 🙄). I've been prescribed norethisterone which does stop the bleeding after a week, but as soon as I stop taking it, it comes back and it doesn't stop.

I've had problems with my periods & cycle since I was 12; I'm 30 now. I've been in and out of hospital, 3 investigative surgeries, tried every form of contraception and nothing works, I bleed through everything. I tried norethisterone for 3 months and ended up bleeding so heavily through that to the point I was hospitalised and had liver damage.

I'm at the point I can't see any end to this other than taking my life. A hysterectomy is out of the question for doctors because I've not had kids, despite trying for them for 8 years with 4 failed rounds of fertility treatment.

What do I do. I'm so lonely in this and I'm stuck and I love my life but I can't keep living like this.

Op I just came to this thread- I understand why you wouldn't want a coil and not sure why commenters keep repeating that.

Someone upthread mentioned tranexamic acid which worked wonders for me, it's very low risk simple mechanism, can you ask for a prescription for that in the short term?

I have periods up to ten days long and cycles of 28 days so I'm bleeding more than a third of the time and the periods were so heavy before TXA, I had fainting and giddiness constantly. They stopped for a while when I was breastfeeding but then my first few periods were 16 days long...! Well over half the cycle...! TXA doesn't stop the bleeding or reduce the duration but it massively reduces the quantity of flow so at least you won't be flooding thru clothes.

Your GP will be able to prescribe it over the phone immediately if you ask for it, just in the short term while you wait for bigger solutions

Ps I don't have endometriosis or polyps or anything that I know of - I think some women just bleed more.

My dh thinks I might have a clotting issue which my midwife is having looked into.

In any case for me, TXA is enough to make life livable -it's really worth trying in addition to investigating surgical solutions

Reading this thread is horrifying. I’m so sorry you OP and everyone else on here have to wade through this bullshit of medical gaslighting. Being told it’s normal and to get on with it is disgraceful, I’ve never suffered with anything like this at all and I don’t think most women have so dismiss this as something to just get on with makes me rage for you. I really hope the private appointment is productive for you.

Oh and I’m with you on the coil, I would never have one.

Let us know how you get on today! X

Sorry I've not updated those that have asked. I've been in a really bad place health wise.

Things got a lot worse after I started this thread. I paid privately for a consultant who whipped me straight in to surgery.

I have endometriosis that has spread everywhere. It's all over my uterus, ovaries, fallopian tubes, bladder, cul de sac, bowels, uterosacral ligaments, hips & pelvic side wall. I also have adenomyosis and severe inflammation in my uterus (good job I've been declining the coil or there's a chance I'd be dead!). To boot, they found 2 polyps. The endo has completely engulfed my organs, there's patches of black endo which are then covered by an endo film which has wrapped around my organs and embedded deep into the muscles. The rest of my insides look like they've been covered in spider webs and everything is stuck together. Because of that, they couldn't surgically remove anything.

I've been told my only option is now a hysterectomy. Because of how bad things are, I was told I will never have children and my chances of IVF are nil as, even if an egg did implant, my body would most likely expel it as the conditions are too hostile. A hysterectomy will stop the bleeding, however, there is nothing they can do for my other organs and my life will now be a miserable existence.

I'm going to be in pain for the rest of my life and there's nothing they can do about it. I can't even piss normally and I'm constantly pooping blood.

Fuck I hate the NHS.

I’m so angry for you. I remember the thread originally. I’d sue. I really would, ignoring you all this time and telling you everything was fine. Bollocks to them. Get a solicitor who specialises in medical negligence and sue.

This was my experience.

Adenomyosis picked up on external ultrasound it was so severe. 2 failed coils that came out as I bled heavier.

Eventually bled for 82 days consecutively and said enough. Took northisterone for 18 months daily and then had hysterectomy.

So sorry you e been left so long that it's got so bad.

Honestly - the woman's health treatment in this country is appalling

A bit of discomfort to have the coil fitted is better than feeling suicidal.. they spray numbing spray into you now..
You need a proper clinic with experience not a GP.

@CinnamonSwirl82 im so sorry to hear what you have been and are still going through. The medical gaslighting of women is real and devastating. I have nothing useful to add, but sending you love 💜

RTFT

Omg OP. If you have the strength, you need to consult some legal help here. You have been badly let down and they deserve to be sued for the way they’ve treated you.

Just to add - That was a second private consultant that I saw in October. The one I saw in August fobbed me off with a prescription for Norethisterone and said they wouldn't bother doing a hysteroscopy to find out what was going on. Charged me £200 for the pleasure.

I was hospitalised beginning of October as large chunks of dying tissue was falling out and I could barely stand or string a sentence together. I went to my GP who rushed me to A&E. The doctors fobbed me off, lied to me about Ultrasound report (sonographer found polyps, doctors told me it was clear), said I was making everything up, refused to believe I'd lost chunks of tissue, didn't believe I'd been bleeding since Oct 22, kept telling me I wasn't anaemic (blood tests say I am with iron deficiency) then gave me provera and told me to disappear. They contacted my GP and told them I'd agreed to have the coil fitted and to book me in. I didn't.

That's when I truly lost my nerve and, having talked myself out of suicide, went to a second consultant who took me very seriously from the minute I stepped in the room. Funnily, she used to be the head of Gynaecology at the NHS hospital mentioned above (retired) so I've no idea how she can take me seriously, yet they don't?!

@LutonBeds I've got a solicitor involved. The Gynae who carried out my surgery in 2017 wasn't qualified in endo and obviously missed it. As did the surgeon before him.

I got hold of my medical records and in 2019 they also did an MRI and told me the results show 'I absolutely do not have any evidence of endometriosis'.

If they hadn't missed it, and hadn't fobbed me off then it wouldn't have been too far gone to excise it and my life would be different.

I'm so so angry. I've cried, hated myself, and now I'm in war mode.

Good luck, I wish you all the best.

Did you even read the update 🤷🏽‍♀️

OP I am so so sorry for you. How horrific. Absolutely get some restitution from those people who gas lit your symptoms. The older I get the less naive I am about the way women's problems are dismissed.

Jesus Christ, I am so, so sorry.

Definitely sue. You deserve compensation to help you be as comfortable as possible, given the severity of your condition has been caused by medical negligence.

I would recommend contacting your MP, especially if they are one with a good caseworker. There is massive variation here, but having a good MP and their caseworker(s) on your side can be a great comfort. If you ask them to write to the Secretary of State, it can also help to make sure steps are taken centrally to stop this happening again to anyone else - if you feel strong enough to take this on.

(tip: don’t write directly to the health secretary, as that doesn’t guarantee a ministerial response. Instead, write to your MP and ask them to write to / forward your letter to the health secretary or prime minister. Parliamentary etiquette requires that the minister writes back to any parliamentary colleague who writes to them, so you’ll get a ministerial response)

@AngryBirdsNoMore I don't suppose you have any extra advice for contacting MPs? I've emailed mine, twice, and had no response. I've had a Google and I'm not sure if he left the position in December but it doesn't say if anyone else has taken over. I'm all for taking this as high as I can to get as much recognition and support for the other women who have had their lives ruined by medical gaslighting. Any help I can get, I'll take it ❤️

Try here for your MP

https://www.theyworkforyou.com/

Thank you. Unfortunately, it's bringing up the same MP so I must just have awful luck in life!

I'll keep pressing him and hopefully I get somewhere.

Do they fuck. I screamed blue murder last January with the witch of a GP who put mine in.

Bloody hell op, that's terrible and I am angry for you, I hope you get recourse.

In terms of the MP, if you aren't even getting as much as a polite 'thanks but talk to someone else' reply then that's not on. Make sure you've emailed the correct address and then send a letter by registered post or drop it off by hand to the constituency office and photograph yourself doing so. If you still don't get a reply, then use social media to shame the MP for not even having the decency to reply.

Good advice from @MaggieFS and @LutonBeds.

Good advice here.

Also, try contacting both their constituency and parliamentary email addresses / addresses. When writing to your own MP, make sure to include your residential address - they are only allowed to do casework with people in their constituency, except in exceptional circumstances.

If you don’t hear back, as well as shaming them on social media, consider contacting the Chair or members of the All Party Parliamentary Group on Women’s Health. Gillian Furniss MP and Gillian Mckrory MP are the co-chairs.

EDIT: to add - try to make your letter as easy to read as possible. A typed, well formatted letter with paragraphs, stating what your concern is / what you want, is ideal. It is much easier for a caseworker or correspondence officer to quickly skim such a letter and pick up what they need to do - meaning they’re incentivised to deal with it immediately. The opposite - no paragraphs, badly written, illegible handwriting, no clear objective - can end up languishing at the bottom of a busy junior official’s to-do list.

Really good luck. I don’t know anything about health but I do know about ministers and MPs!

To add - turnaround times can be quite lengthy for correspondence, even more so if they choose to contact a minister or officials on your behalf. Weeks, not including periods of recess.