How to get a dr to take me seriously includes graphic pictures

[hellotomrw]

I think I had endo or something along those lines. Always had painful periods but they were regular and not too heavy and alst 4 days every 28 days. That was until 18 months ago when everything changed. I bleed 90% of the month and 50% of the time its heavy bleeding with clots I will include some pictures I have taken yesterday and today.

When I first went drs they took me seriously and I ended up down a cancer pathway after they found thickened womb lining on an ultrasound. On the same ultrasound they found a cyst that they called a chocolate cyst to me but they could only see it when looking with an external probe not an internal which was surprising as I am overweight.

I had a hysteroscopy which ruled out cancer but showed no fibroids but did show thickened lining.

The gyny team discharged me back to gp but I have been to gp twice and all they want to do is put me on the coil or mini pill I dont want either. I want to find out what is causing this bleeding/clots.

how can I make them listen to me? I have just spent 4 days in a&e for loss of sensation/numbness/pins and needles in my left leg which after an mri of my head they still couldnt find a cause for and discharged me. I am seeing the neuro team as an outpatient but after some research this could also be a sign of endometriosis if it is pressing on spinal nerves?

No. Incase I have side effects. I don't know much about the mirena. I heard it can make periods heavier on here.

F

I mean no, I don't want to a pregnancy - over 45 and want my periods to end due to all the heaviness etc. I've never had a coil before - one family member had one and it migrated / embeded? It sounds a good idea but didn't get any further reading / advice from gynae about a coil? Apart from it thins the lining? I've also got a 8cm cyst they are going to monitor? Two close friends have both had hysterectomy and advise it along with ovary removal. So fed up of it all.
No periods since polyp removal / hysteroscopy which is all abit odd as usually regular.

I've had copper coils for years before my mirena and I think they made my period heavier, the mirena just stopped all bleeding full stop, I can't imagine mirena could make bleeding heavier, only lighter or non existent.
I don't know the stats for migration and you should look at all risks vs benefits for yourself but IMO what you're putting up with currently must out weigh any potential side effects

Copper makes them heavier, mirena stops or makes them lighter
i have had both, currently have a mirena after endo surgery and it’s stopped mine entirely. At worst I get the odd day of spotting once a month which barely needs a liner

Hi OP, so I was diagnosed with mild endo via a laparscopy in my 20s and moderate to severe in my 30s. It was everywhere except my bowel. Clots like in your pics were normal for me but I'd only get them on day 2 and day 3 which were my heavy days and I don't think I had as many as you are describing. I was then diagnosed with thickening of the womb lining in my mid 40s and was advised to get the coil. I really didn't want it but trusted my gynaecologist and enjoyed 3.5 years of womb protection and no periods. It was bliss. I did get some spotting here and there and some mild cramping but it was like night and day. I'm nearly 50 now so had it removed as I thought I might be post menopausal but it turns out I'm not so it's something I'd seriously consider doing again if my now very light and very long cycles change. Or if I wanted to go on oestrogen. If you get it inserted correctly (and just give it a try) you might be surprised and if it doesn't work it's very easily removed.

the mirena makes them lighter, the copper coil makes them heavier. The mirena does have some hormones in it but IIRC it’s the equivalent of one mini-pill every four days but on slow release - it’s nothing like the hormonal intensity of taking the pill (which I also don’t take because it turns me into a raging loon).

it can take a little while to settle; i’d give it 6mo, but if you hate it after that and the GP won’t take it out, go to a sexual health/contraception specialist walk in clinic and tell them you want to try for a baby. They’ll just take it out, and won’t know how long it’s been in there for (or just lie if they ask 🤷🏻‍♀️).

I’m about to have my 5th mirena replaced with my 6th - I’ve used it as my primary contraceptive since I was 18, with a few breaks when we were trying to conceive. I also have a large number of friends who use it and without exception they have found it to reduce or completely remove their periods, so I would say it’s definitely worth a go.

If you definitely don't want to get pregnant ever again, I can recommend a hysterectomy. Like you I had horrific periods that meant I couldn't work, go out of the house without a ton of pads, tampons etc, even the school run was like a military operation involving covering the car seat in bin bags, wearing incontinence pants with extra pads inside. I went choose & book to see a gynaecologist who did a laparoscopy, diagnosed endometriosis & a few months later I had the hysterectomy done keyhole, I was only in the hospital 14 hours & felt like a new woman almost straight away, no pads, tampons etc, I went out wearing white jeans 2 days later.

Thank you. I will definitely make appointment at GP I agree that the Mirena far outweighs this that I'm going through. Thank you.

Oh now this sounds ideal. Not worn white or pale jeans in years. Having to cover seats and bed in bath towels. It's been awful and I don't want to be in pain every month. Wearing pads that soak through just walking to bus stop. Having to go to unisex toilets at work all the time too. Having to wear heavy duty pads that rub on legs is horrible. Think I will give mirena a trial and if it doesn't work hysterectomy?. The hysteroscopy was horrible and I dont want that again. So don't know yet what the gynae will do not had hysteroscopy results yet. Lining was 20mm. With polyps that were removed. That make lining thicker.

The tran something medication someone mentioned above is tranexamic acid, which did help a little for me, I had periods from hell! Clotting worse than you've shown and so heavy I would bleed through the heaviest duty protection in minutes sometimes! Would also go on for weeks at a time and the pain was excruciating, extreme cramping from my neck to my ankles! The pill didn't help, just bled constantly, all be it a little lighter. I was eventually given laser ablation surgery to clear the excess womb lining and then had the Mirena coil inserted when the surgery didn't last very long.

The Mirena was a miracle for me (apart from it being inserted which was a nightmare) and my periods almost stopped and the pain disappeared! It was wonderful after so many years of hell and I kept it until recently (not the same one of course, was replaced) when needed HRT and to have it removed first and thankfully I now only get very light spotting with very little pain every now and again. If they think the coil will be safe for you, it really is worth giving it a try.

Oooh! Very interesting and something I'm so willing to try thanks. Bit less drastic than hysterectomy.

I am taking Tranexamic acid 1000mg three times a day. Gone from emptying my overflowing moon cup twice a hour to wearing the same ligh pad all day on day two and three of my period. It's worth a try. I'm sure I was anemic before I started them.

There's also mephanamic acid, but think the tranexamic is the stronger of the 2, I had both at the same time for some reason, too long ago to remember why now, but I'd vote for Merina coil over the drugs for how well it worked.

I really wish people would stop suggesting the bloody mirena coil as though it’s some bloody solution. It isn’t! At best it’s a sticking plaster to mask the situation but does bugger all to resolve it. At worst it makes the situation worse.
Im mid 30s and had to have a hysterectomy as a result of endometrial cancer caused by not being taken seriously for more than 10 years by numerous GPs and Gynaecologists. Pumped full of drugs including the mirena could for years. I’m not infertile and at risk of numerous health conditions due to having a hysterectomy so young. There is a big lawsuit working its way through the US courts about these drugs and the risks that they pose.

OP please keep pushing for answers and don’t stop until you get them. I wish you the best of luck

Who told you you had a bulky uterus?

that’s a sign of adenymyosis which would explain your heavy bleeding . Ask for a referral to a specialist .

I have had deal with something similar.
I had the implant removed to try for a baby. Then pretty much bleed solidly for months, massive clots. Sometimes I would bleed through a super tampon and a pad with in a hour. (Sorry to much information)
I'd wake 2/3 times a night to change tampons etc. It was a grim few years.

I had a baby and then the it started again, I have seen several consultants, had multiple scan, womb biopsy and they can only find PSOC.

The best comment came from a male consultant was telling me it can't be taken bad 😂 and I'll want more kids so they couldn't really do much at this time other than give me some form of contraception (We've not had more kids 10 years later) The only thing that slightly helps me is the implant, the coil did nothing for me.

I now bleeds a bit, might have a few days of very heavy bleeding a month with some discomfort and pain.

I need to go back to th GP, I think it will be a surgery of some sort but I can't really be out of action for an extended period at the moment so keep putting it off.

I 100% feel your pain with this one and know what's it's life to plan your life around when you can get to a toilet next.

I've been in an airport security queue with blood running down my leg, and couldn't get to a toilet due it it being security and had to wait until I was through it. Thankfully I was wearing black !

What a shame! I hope hope you manage to het something sorted xx
I was in meeting once at at work stood up and had the same experience. Thankfully wearing trousers but went on the floor good job it was a tiled floor amd cleaning cupboard was open so I could clean it up properly. Waiting for results so hopefully all will ne OK.

It was seen on the ultrasound scan

Thank you for this, gp made me feel like I was wearing a tin hat when I said I didn’t want hormones

The pill can cause hair loss and isn’t for everyone