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?

Why not take them up on the Mirena? It could completely resolve this.

You have your answer though - a thickened uterine lining absolutely can cause heavy, long and irregular periods. It can be linked to hormonal imbalances, but also obesity. I don't know your age, but perimenopause can be a factor too. I no longer get five days of a heavy-ish period, I get two flooding days - or at least I did before HRT. Depending on your age you can ask for a hormone test to see what's going on there - but why on earth wouldn't you take the mini pill which will stop this in its tracks? I am on the mini pill - taken continuously - and haven't had a period for months. I say the pill because I have no experience of the Mirena because when they tried to give it to me it turns out I have a heater-skelter of a uterus!

Right it is highly likely you have endometriosis so you need to do the following:
get a referral to BSGE insist on one
keep a diary of symptoms and yes photos are vital
use key terms such as ‘suspected deep infiltrating endometriosis’. Mention that the chocolate cyst was already identified and that you need to know its impact on your surrounding pelvic nerves.
Explicitly tell the neurology team that you have a confirmed chocolate cyst and ask them to consider if pelvic endometriosis could be compressing the sciatic or sacral nerves.

ask the reception to speak to a gp that knows about endometriosis and keep pushing

don’t forget if you get a long wait to go through right to choose via nhs. If you are in the SW I can help you further

I get clots like this, I have PCOS and have been told it's not unusual, I take iron and for a long time took the pill, but don't want to anymore. I've been offered a mirena and am thinking about it, but I just use period pants in addition to tampons and it's no more painful than is every been. I get cramps and back ache but I can still live my life. My periods are usually 8/9 days.
If it changed recently how old are you? Could be peri

I’m 35. The thing is if it was a few days a month I could manage but I’m bleeding almost all of the time. So 2what I would previously have called heavy bleeding 50/100 days and bleeding with these clots several times a day 40/100 days then a few light days. I have like a 2/3 day of no bleeding then it all starts again.

I don’t want the pill because it made me suicidal previously. I don’t want hormonal coil for the same reason but also because I have a bulky inverted uterus and I have sisters that had a coil migrate. I forgot to mention but one of my sisters is diagnosed with endo. The gp know all of this information

Thank you, this is really helpful

I wear either pads of pwriod knickers with tampons because if I don’t these clots fall out but don’t absorb so I end up leaking outside/off the pad or knickers if that makes sense? The tampon works as a sort of plug for the clots whilst absorbing liquid and because I flood the pad catches anything extra too

The pill made me suicidal and I have a bulky and inverted uterus so I don’t want the coil plus my sister had hers migrate. Also if I had endo I want to know especially if its now growing outside of my womb etc

Fair enough. I gave advice based on the information you provided. I’m not a mind reader and was trying to help.

I have endo (undiagnosed due to it being such a PITA to confirm without surgery but suspected) and the coil made things so much worse for me. I do think it was peri starting for me that really amplified things, as I had one ok year on it. After that year it felt like I was having multiple menstrual cycles in a month. I was in so much pain that I always had the car seat back warmer set to boiling in the heat of summer, was constantly bleeding, cramping and just miserable. The minute I took my mirena out and went back on the pill it got almost completely better. Every 3-6 months I have a few days of cramping in my cycle, but it is a world of difference. It also tends to come when I can feel peri symptoms coming in a rush (acne out the blue, sudden irritability, moods, sleep loss etc). It seems to come in waves for me. I understand that hormonal contraception is not for everyone, this is just my experience and it might be useful to share, if not to you, maybe someone else, I think that's how I found MN. I had huge mood swings on the mini pill in my 20s, hated it. Ended up taking the 24 Fe type pills which also only give a 4 day break, and have been on them ever since without issue except for having children and the giant mistake of going on mirena. The sheer relief I felt the month I came off it was unreal. I hope you find a resolution.

Editing to add I have a familial history of endometrial cancer, and a close relative passed from it. I also have the fear (whether irrational or not) that my body could already have or could cause a ticking time bomb later in life. The combined pill (like the one noted above) can reduce this risk 30-50% I think there are blood tests that can be run as you get older if you have endo or family history to see if there are elevated markers. They can pick up other things so aren't fully conclusive, but they are helpful. In the UK you may have to go private for that, but for the peace of mind I would if I had the spare money.

If you haven't already had one you may need a hysteroscopy and endometrial ablation which usually stops or drastically reduces periods. But that's not recommended if you still want to become pregnant. Discuss options with gynae. Easy for me to say I know! No coils or pills, and you might be a candidate for it.

www.mayoclinic.org/tests-procedures/endometrial-ablation/about/pac-20393932

I have terrible flooding periods and clots. Had to goto drs as i was gettitng severe shortness of breath and palpitations and dizziness. I had blood test and then sent to a and e and have a blood transfusion 4 units as hemoglobin was 4. which I think was caused by heavy periods. Pouring out. Had ct and ultrasound that showed thick lining but discharged to gp and told to try mirena provera or mini pill. I don't want the coil either or the pill. Thinking of self funding a hysterectomy. Please let me know what happens as I am in same place as you and totally understand how you are feeling. Hugs

Yep. Me too.

I can’t see how old you are OP but I had exactly the same level of bleeding in my 40’s. Had always had heavy periods but this full on flooding with big clots and it just went on and on. I had scans and hysteroscopy but nothing obvious found. Took iron for quite a long time on advice of GP because blood tests showed I was anaemic. For me it was all part of perimenopause.

I have PCOS and my periods were insane, except for the 12 years I was on the Pill. I'm telling you this out of solidarity more than internet diagnosis, as it seems from others' posts that you probably have endometriosis.

While I was a one-woman bloodbath for up to three weeks at a time, complete with impressive clots, I only ever had one clot the shape in your photos. It looks very like a decidual cast (the whole endometrium sheds in a piece). Look at pictures on Google. Many women shed a cast or two during their lives, but a rare few shed them regularly. If you agree, it could be worth including this info in the medical picture you're working up.

Wishing you some sort of resolution in a reasonable time.

Thos sounds horrific! Why dont you try the mirena or mini pill before resorting to surgery?
In perimenopause my periods became very heavy, no where near your experience though, I had the mirena fitted and no bleeding at all since. I cannot recommend it enough. Have since started HRT and my mirena is the progesterone element, so double benefit. What is your reason for declining it?

So all those photos were taken within a 24 hour period. Probably represent 1/4 of the large clots I had in those 24 hours.

The coil is often a good treatment for endometriosis, it suppresses endometriosis outside womb also. Treats heavy periods of any cause. Not perfect but nothing is.

I know a few women who have had post operative complications down the line, adhesions etc, then surgery for adhesions, then worse again, now no going back, so I’d be wary of this.

I’ve got a coil, took a year to settle in but now I recommend to anyone.

Did you not want to know why you were bleeding so heavily? If I have a medical condition I want to know what it is first.

I’m not able to diagnose on the internet but a chocolate cyst is likely endometriosis.

If cancer is ruled out if I was you I’d want the best treatment for my symptoms. I’m not trying to get pregnant though, that would change things for me.

Hi @hellotomrw I used to have periods like you describe - incredibly long and heavy with no let up - and awful PMDD. In the end, I went private and they soon worked out I had PCOS, endo and adeno. I had a hysteroscopy to check it wasn't cancel, some polyps taking out and a coil inserted. The mirena coil given me back my life. I appreciate you don't want it though but I hope you get some answers.

I have never had heavy or painful periods in my life until a few years ago. I had a ultrasound in which the sonographer asked if I had trouble going to the toilet, which made me think of cancer. My gp phoned me the next day to ask how it went. Then she said I had various masses and cysts in my womb. But the final US report said it was normal?

I'm on tran something acid. Which if I take properly reduces my period to practically nothing. I would like to know what's going on, but I feel to get proper answers I would need to go private. I am.up in the night being sick with period pains now. Filled up a two cups in a hour. All normal according to the nhs. Im sure it is in the range of normal. But it's not normal for me. Taking the meds is a compromise or I would be anemic

Thank you. I'm worried that once the mirena is in I will find it difficult to get it removed. Hardly any appointments at my GP. I was feeling dreadful with anaemia and had to wait 3 weeks to see a GP face to face.

@Rainagainandagain why do you think you'd have to have it removed again soon? Are you planning a pregnancy?