Menorrhagia & heavy clotting

[FlowerWitch]

Hi everyone,

Just a warning this post is going to be super gross.

My sister said it would help my anxiety if I joined a forum. Both my sisters are mums and have dealt with similar symptoms when they had kids, as well as my own mum when she had us, but I'm not sexually active or a mother, so it's very frustrating I have to deal with this crap for no apparent reason. And I have been dealing this crap for nearly two decades now: my first period when I was a teenager caused me to go to the hospital for surgery. Then a few years after that I was diagnosed with PCOS.

Then I was diagnosed with anaemia, but I wasn’t given any meds for it and I just carried on. Then a few weeks ago, now I’m in my early 30s, near when my pill was due to end for a break, I felt some clotting pass. The sensation really freaked me out. I came off the pill for the break and the clotting was insane. I caught some in a tissue so I could see what was going on, and it was handfuls of this large, unseparated mass. And it wouldn’t stop. I filled nightly pads, maternity pads, and even adult nappies in the night. I could barely make it to the doctors without leaking. And dealing with that at work was mortifying. I’d just stand up and this load of organ tissue would be sitting underneath me.

I was prescribed transexamic acid, then after a blood test some iron tablets, and meds for hypothyroidism which I’m on for life now, so that’s great. I’m to stay on the pill for three months and then have a short break, but I’m absolutely terrified of having clotting again. I can’t go into work with it happening, I’ll have to call in sick and stay near a toilet the entire time.

I’ve been referred to a specialist but that could take months. The doctor asked me if I was sexually active and when I said no, she said she could rule out a miscarriage. That scared me a little, especially since on the surface it does look like my body is trying to expel something huge from my body. But there is no pain whatsoever when I’m clotting, not even period pain. Although that might change on my next pill break.

Since I have to wait to see the specialist I’ve just been worried and anxious that it could be something really bad. I wonder if I’ll have to request a hysterectomy just to make it all STOP. I’m exhausted that I’ve had to deal with such gross stuff for two thirds of my life. I just live alone with my dog, who can actually be really comforting when she wants to be, but I feel so alone. The grossness of the clotting freaks me out so much but I feel bad for talking about it to my sisters and mum. Thanks for reading this and I hope it wasn’t too gross.

Your GP ought to be able to offer you the Mirena coil which is the first step usually of treating heavy periods. Did they not discuss that at all?

I suffered like this for years.

The TA helped but it didn't sort things totally. The pill doesn't agree with me either and I refused other hormones like coils etc.

The thing that has worked for me was an endometrial ablation. Quick day surgery and I know how a super light 2 day period. It's great.

However, you cannot have children after having it done. So if a family is in your future plans it's not suitable.

You’ve just described my monthly periods for 25 years, the last 14 years I was on
prescription iron tablets 3 x a day along with tranexamic acid and mefanemic acid. I also have a thyroid issue but DM also suffered horrendously with her periods so I just assumed I had to ‘get on with it’. Super plus tampons and maxi pads I’d have to change every 40 mins, sleep on a towel but still jump out of bed 4 x a night to change when I leaked, terrified when at work and cramps so hideous they made me vomit.

when I finally went back to the dr for a referral to gynae I spent several years under them as it turned out I had fibroids. During the years under gynae I had Mirena coil, progesterone only pill, laparoscopic investigation then, finally the offer of ablation. I read up about ablation and knew there was a risk of the lining growing back so I refused. I’d had DC (and 4 miscarriages) I decided enough was enough and begged them for a hysterectomy.

Happiest day of my life having my hysterectomy. It has been amazing. I am cross though that the hysterectomy confirmed I also had endometriosis which they had somehow failed to spot when I had the laparoscopy 13 months earlier.

The waits for gynae are appalling, I am of the opinion that if men suffered with any of these symptoms, there would be. Lot more funding and shorter waiting times. is seeing a consultant privately an option or do you have health insurance through work?

I had the implant for a year while I was abroad and I didn't get on with it. The doctor mentioned a 'bum injection' but it was the same type of contraception as the implant so I'd suffer the same side effects. The coil sounds absolutely frightening to me, since I have developed vaginismus due to my past trauma.

Thanks for your reply. I'll look into that, I haven't heard of it before. Tbh, I have never wanted to have children but the thought of being pregnant is absolutely terrifying. I wouldn't mind having anything permanent done so long as it helps me out.

I'm sorry you had to go through that, it sounds as much as a faff as mine, but the pain for me has been manageable otherwise I'd be crying most of the time. When I had my first period, they thought I was pregnant at 13, and went with this theory for quite a while. I didn't even know how sex worked. It took them a full week to figure out what was wrong, so I fully agree that research and resources in women's health doesn't seem as good as men's health.

They did look for endo but couldn't find anything. I said I was disappointed because although I didn't want it obviously, I wanted a diagnosis and help. It's always been a journey of trying out some new solution and getting on with it until it gets worse.

I'm in the UK and can't afford private health care, and I don't get insurance through work. I can rely on the NHS though, last year they provided me therapy to deal with the trauma of all of this and it really helped and I feel better equipped to handle this, even though it's really awful.

I had to push for my ablation as I'm only 38 and they do like you to be older as it reduces the likihood of it growing back.

I think they won't do it at all if your under 35.

I was told the waiting list was 2 years but actually it was a lot shorter than that (though I'd gone private in the meantime)

As you don't have children they will really make you push because it isn't reversible. You could still get pregnant but a pregnancy would have to be terminated and be very dangerous.

I am worried I'll have to push for a lot of things, if they are a viable option they won't do purely for potential child reasons, and I wish it doesn't come to that. I think becoming pregnant would be dangerous enough for me, having permanent surgery seems the best option for my health.

You could have the Mirena fitted under an anaesthetic.

It is highly unlikely any dr would go for an ablation straight away especially for someone your ae as it's the same effectively as being sterilised.

A Mirena didn’t actually help at all for my heavy bleeding & clots. I ended up on a continuous cycle of heavy period bleeding with clots then spotting every day until the next period started but pp are right, they won’t jump to a permanent option straight away.

I can't imagine being pregnant, your body goes through so many other things, there could be complications, I'd worry about the health of myself or the baby. Which I wouldn't even want. I think becoming pregnant would severely damage my mental health. They should take that into consideration when discussing my options. I feel that effectively sterilising me should be a legitimate option.

I have so many worries. I can't see myself finally getting into a relationship with these health issues in the way :(

Given your other issues it wouldn't be totally unreasonable to have something more permanent done. Though like I said, I have a feeling they won't do it to under 35s because chances are the lining will grow back before menopause.

It's certainly worth talking to your doctor in detail about the options.

There's also a great book called the period repair manual. It won't sort your issues, but some of the tips can help manage some of the symptoms. It also has sections about how to talk to a doctor about your period issues.

Just a few bits to add...
Being pregnant and the aftermath of pregnancy- breastfeeding- was the only time I had some peace from my torrential periods.

I was refused an ablation due to having numerous surgeries for another reason so am on noristolone (sorry if spelling is off) and have been for ten years. Have had breakthrough bleeding once in that time (when I was having surgery and they forgot to give it to me)
Can I ask roughly how old you are if you haven't said? Sorry if you are repeating yourself

I've heard of it growing back so I wouldn't want to go down that route if that was a potential option.

I'll get that book, thank you! I don't know much about periods in general so it'll be great to learn about them. It goes on a lot about not being on the pill in the sample. I can't imagine!!

My sisters have had prolapses and stuff though because of their pregnancies, they sound like horror stories :(

I'm 31 years old

The author isn't exactly anti pill, she's just clear that all the hormones do is mask your issues. This is fine if you want to keep your fertility but isn't always a long term solution.

It is really informative about the menstrual cycle and what actually happens during it.

There's always a chance that any treatment won't work. But the procedure is quick and easy to recover from. It's a lot less intensive than a full hysterectomy. I'm prepared to have a full one in the future if needed, but so far the ablation has been life changing

That makes sense. I'll definitely check out the book, I have a lot to learn. I hope things go well for you!! :)