How to gets GP to listen to me

[hellotomrw]

I have had 20 years of very regular 28 day cycle, normal flow but painful periods. Had two kids the past 6 years last one 2.5 years ago. In Oct my cycles started to go weird, at first I missed periods but now I am constantly bleeding. Was referred to gynocology who did a hystercopy and took cells but found nothing abnormal and discharged me. They did say I have a thickened womb lining but thats it. But surely bleeding 40 out of 50 days and passing clots this size isn’t normal. They also did an ultrasound where they also saw the thickened womb lining and said they could see cysts on my ovaries the tech said they were chocolate cysts but id need an mri for them to see better. But then I was referred for the hysterscopy and the consultant who then saw me dismissed them and didn’t seem concerned. They did a smear and swabs earlier this year too, all normal.

i have a gp appt on Friday and I dont want them to dismiss me. I’m 35.

Take a man with you and get them to explain how this affects them.

Dunno whether to laugh or cry and this as I know you’re actually right

I find that Drs tend to take things more seriously when you say how it affects your life e.g. the things you can't do because of the pain, or you have to go to the toilet every hour to change products, or you leak X times a day because of the clots, or whatever it is. Basically explaining how it affects your quality of life as well that it's painful and you want to know the cause. Also photos of things like big clots to show you're not exaggerating. It doesn't sound normal and it must be bloody exhausting, wishing you luck

Edit: just seen you do have photos of clots. If your GP is a man I would explain that they don't soak into pads/tampons and lead to leaking or discomfort as I wouldn't be surprised if men don't actually know that

My periods became very heavy and unpredictable at 37 (after having dc2). Saw 4 different GP's, had a scan that showed a small cyst - this was monitored for a while and they weren't concerned about it. I had days where I wore 4 night time pads for the flooding and clotting. Periods all over the place, no pattern at all; some lasted for weeks on end and then another would appear 2 weeks later!

The last GP I saw said she saw no cause for concern and this was typical perimenopause. Prescribed the mini pill which I have just come off at 53. It eventually stopped my periods and it has taken me through the peri-menopause stage with no symptoms.

I had no idea of the symptoms of peri-menopause before and was convinced that something was really wrong. I hope this helps. The last GP who diagnosed me with peri asked me what I was worried about and I said cancer (I lost both parents to it in their early 60's).

Am I not too young for peri? I’m 35 my mum stopped having periods in her 50s

I’m a gp, with a special interest in women’s health. I also have similar ish symptoms, my youngest is nearly 3, I’m mid- late 30s, my periods have been everywhere, heavy, I became anemic, lots of hormonal symptoms I’d never had before, sweats etc.
never had any of these problems before kids.

Ive just had a mirena fitted. It’s been ok, not the panacea I’d hoped for but controls things well enough for now.

i think what Pp said is right. What is it that you want answering? often a lot of treatments focus on controlling the symptoms. Difficult to comment on the thickened endometrium as it depends on cycle stage etc.

Acknowledge that you understand they haven’t found anything that gynae consider to be causing the issue, but emphasise that regardless, the bleeding is affecting your ability to carry out daily life activities, being really explicit - eg size of clots, frequency of passing them, what this means in terms of impact on your working life.

For the number of days you’re bleeding at a time, I’d also mention the impact on your sex life/relationship.

I recently saw the nurse and subsequently the GP for similar reasons, although mine is due to peri, and the key seemed to be emphasising that this (a) wasn’t normal FOR ME, regardless of whether still in the realms of acceptable overall, which triggered some investigations, and (b) that regardless of any underlying cause, I needed something to reduce the bleeding, as I couldn’t leave the house to go to work. I’ve since been prescribed Mefenamic acid, which based off one month’s evidence, worked brilliantly - much lighter flow, very minor occasional clots and no flooding, and shortened by about a day.

That was exactly what I beleived but no, it can start at that age. I actually made a point of asking my mum before she died about her menopause (I knew that she was not going to be around to ask). She had regular periods until her mid-50's. Oddly, I have 2 cousins on my dads side who have had the exact same experience with the menopause as me. I don't know if it can work that way as I always believed it came down the maternal side (no idea about this). I do also have an underactive thyroid but it is kept in check with Levothyroxine - but maybe this did affect things.

I do agree with the previous poster who recommended telling the GP how it is impacting your everyday life. Good luck.

i have four sisters, two have been diagnosed via laparoscopy with endo and the other and adenomyosis so I guess this along with my symptoms and the cysts on the ultrasound makes me think it could be that? But also my grandma had a hysterectomy in her 30s and no one knows why and my other grandma died of vulva cancer. So just a lot to consider in my head

So I couldn’t say what stage I am ever in my cycle because I am bleeding 80% of the time no exaggeration. But thickened lining was seen on ultrasound and hysterscopy which were 6 weeks apart

This is good advice thank you

thanks for the advice so far

Sadly, this!

😔

I'd ask for a pelvic and transvaginal ultrasound (check for fibroids, adenoymosis, etc) and, depending on the results, push for an MRI. In the meantime, get tranexamic acid to help with the bleeding and clots, and a mirena coil, after the ultrasound, though (it will be difficult if you have fibroids, for example). Then see how it goes, but have a symptom diary, and record things in it, push for an MRI and go from there. It seems like adenomyosis, which can be triggered in some people after childbirth etc, but can be cured but a big decision for many women on whether to do so, and have a hysterectomy.

I write everything down either on an econsult or to take in with me. It helps both me and the GP focus. I discuss what I would like to happen and if the GP doesn’t agree I ask for reasons why not.

This might sound confrontational but actually sometimes once I understand the reasons I can discuss other options or counter those reasons.

If I think it’s going to be a long discussion I book a double appointment. I think a diary as suggested by a pp is a good idea. We often feel so rushed we miss important details.

I tried the medication which wasn’t helpful so had the Mirena coil which worked very well for me.

I've learned that when GPs don't listen, I stay sitting down in the chair. I don't do any of the pleasantries like saying 'Thank you very much/sorry for wasting your time/I'm sure it is nothing.' I just sit for a moment until the silence and lack of movement is noticeable. And then I repeat very simply and clearly what is wrong and that I would like to see X and Y specialists to rule out A or B. This usually leads to them offering an appointment with a specialist.

I have had an abdominal and transvaginal ultrasound already they didn’t find fibroids but found the thickened womb lining and the chocolate cysts. Thats when they referred me for a hysteroscopy but all they found there was further evidence of thickened womb lining and nothing else. I will push for an mri, thank you

A laparoscopy would be more helpful, though, as they need to look at other organs outside of just your uterus. The cysts can go down on their own over time, and that is normal, so if the most recent scans don't show a cyst, that's fine. I would, however, be following up as chocolate cysts are a sign you have endometriosis; it could be more asymptomatic until now, but it fits with some of your issues. For a thicker womb lining, a mirena coil is the best treatment as it thins the lining = less cramps and less bleeding. Essentially, it mimics the luteal phase, which stops estrogen secretion and prevents further tissue growth. So I'd get that inserted as soon as possible (you can get lots of pain relief, Lidocaine injection, numbing gel, etc).

Are your symptoms just on her period or elsewhere during the month? Use this as a good way to push for further intervention. If you have symptoms not on your period - what are they? Is the pain worse on or off the period? Ask your GP for mefenamic acid and/or naproxen (NSAIDs, which help a lot) and tranexamic acid (helps reduce heavy bleeding) - start taking it 3/4 days before, and it will be much better.

The main symptom of endometriosis is not actually period pain because endo is not a period condition - it's a whole body inflammatory condition where the endometriosis tissue even produces its own oestrogen and the pain is felt throughout the month, not just when on your period. Often, endometriosis on the ovaries can form cysts containing old blood called endometriomas (also known as chocolate cysts). Another popular cyst is a haemorrhagic ovarian cyst with endometriosis.

Crucially, you can still have endo even if they don't see it on the scan. The only clear way for diagnosis is a diagnostic laparoscopy, and then management can look like pain medication, depending on how severe your pain and symptoms are (can be opioids, NSAIDs) and contraception and hormonal treatments (gonadotropin-releasing hormones).
The links below have much more detailed and useful information.
https://www.leedsth.nhs.uk/patients/resources/endometriosis-2/
https://www.nhs.uk/conditions/adenomyosis/

Thank you for your detailed reply @TheLivelyViper I don’t even know when my period is anymore as I bleed 4/5 weeks. I bleed for weeks then have a few days off then bleed again for weeks. Some of this bleeding is lighter and some of it is very heavy there is no pattern seemingly.

I don’t want the hormonal coil, I have avoided hormonal contraception for 15 years as the few years I was on it between 15-18 it made me suicidal

I really appreciate all of your advice thank you

This is a good idea thank you

i tried the direct approach and it did not work but maybe you will be successful so give it a go. If someone like your partner can support you so much the better.

I ended up going private for my constant bleeding and from that the consultant wrote a stiff letter to my GP saying I should have been referred at the time of my initial visit. I had ablation surgery to stem the bleeding which was successful.

I did not want a Mirena coil (again this only treats the symptoms rather than the cause) and infact that was never suggested.

I was prescribed tranexamic acid tablets and these sadly had no effect whatsoever. The only pill that worked for me was northisterone. Ultrasound scans indeed showed thickened womb lining.

My uncontrollable perimenopausal bleeding was caused by constant rises and falls of both progesterone and estrogen. This could be happening with you as estrogen levels and endometriosis are closely linked. The fact you have chocolate cysts is an indicator of endometriosis. Endometriosis can also go down the female line.

Often if you balance the mirena coil (which has changed a lot), with watching symptoms at the start, you'd likely not have the same effects. Obviously it's up to you, but it does thin the lining (which is the cause) and thus results in less cramps and bleeding, it mimics the luteal phase, which stops estrogen secretion and prevents further tissue growth.

I think you'll find a lot of resistance in going for something higher up treatment line, of ablation etc if you haven't tried it, with consultants etc but until then tranexamic acid and/or northisterone, can be prescribed from your GP. I'd try one for a while and see how it goes across a few week, then you can bring up what else the GP thinks, as working in collaboration with them will get a lot farther.

If your ultrasound was recent, then I'd be asking the GP to organise a follow-up one, to check whether they've gone done on their own or not, and then following those results you can discuss some options you'd want. You could discuss these when you see them for the meds for heavy bleeding and about organising the scan, to get a sense of what they think, removal is an option but there are others you can also do.

Have you booked a GP appointment to discuss this?

Yes it says so in my op that my appointment is on Friday