Docters or clowns??

So I've been going to the doctors for about 4-5 years with my symptoms and haven't been told anything at all.. And I just started to think that maybe the absolute agonising pain I was going through every month was normal for women who have periods.. But then the very heavy blood and large clots started, and it was so I couldn't leave my house for the 9 days (my period lasts I've also had a few times that my period has lasted longer than one month) because one time I did brave it took lots of pain killers and go out of my house and the worst thing happened, even though I had a tampon and a pad fresh in within an hour I'd leaked completely and had no way of changing or cleaning up, I was 16, so embarrassed and scared I didn't know what to do, was the worst day of my life, ever since then even now I'm 21 I don't go out when I'm on, I'm scared its going to happen again and nomatter what type of towels I use nothing holds longer than an hour, the amount of times I've been rushed to a&e from the sheer pain of my periods and been told its constipation was unreal so one day I was in absolute agony and I thought I'd have to go through to hospital and went to the loo before hand so they couldn't say in was constipated.. Low and behold the still said it was my bowels! No matter what I do they don't seem to want to help me, I have doctors again tomorrow and I'm not leaving until I get some answers, I know what I've got and I know the difference between constipation and the pain I have! Which is like no other pain I've ever had, no matter what painkillers they give me which have gone from paracetamol, highest strength cocodamol to tramadol. I'm getting sick of dosing myself up eithnpain killers and having periods that last longer than a week!! I'm just wondering if anyone knows or any advice as toehat I could say to the doctor tomorrow as I have tried most things and they look at me like I'm crazy and I'm getting so sick of it :\ sorry to keep going on and thank you in advance

8 Replies

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  • Oh crap! That's horrible!! I can't believe they can fob you off like that! That makes me so irate!

    Can I ask how old you are? I find that younger women get such a shit end of the stick when it comes to the early days of trying to get diagnosed properly, and that's consistent with the statistic of it taking about 7 years on average to get a proper diagnosis. I think when you're younger they just expect you to be having painful periods and you just need to get over it and get pregnant and get out of their hair. When you're at or near the end of your reproductive life, women turn into a right nuisance for them because we start demanding investigation, because we have difficult questions to answer like "can I still have children? Time is running out. Do you help me now that it's almost too late?" And if you've no interest in having children, like me, then god help you. They've no interest in helping you stay healthy unless you are trying to have kids.

    So, when you go in, I'm not sure what to ask for, and I don't know where we now stand on the idea of retrograde flow out of the tubes, but I suspect early on I bled like crazy out of every opening my uterus could bleed out of, and that's a concern. Be absolutely clear about the amount of bleeding you're having, because that is NOT normal. And it stands to reason you're not just bleeding ex-vaginally.

    Tell them to eff off (well, maybe not in those terms) with the fixation on constipation, unless you are constipated. And if you are, you are either constipated due to the tramadol, or adhesions on your bowel. Either way, constipation is a SYMPTOM, not the problem. Be strong about that one. Don't let them fob you off.

    I'm really hoping someone else might have some really good advice for you, but the last one I'm going to suggest is perhaps a Mirena coil? I have been using it for 10 + years and it's made my periods that were exactly like yours for years and years to almost non-existent. It can be tough to get used to them at first, but once you've settled down after 3-6 months, usually it's an absolute godsend.

    Some women prefer to go on some kind of pill, but I like the coil because its localised in its hormone delivery, I can't forget to take it, it lasts for 5 years, you can use it again an again indefinitely, and its immediately reversible if you decide you want to get pregnant. Maybe you can ask and they can see if its going to be a suitable option for you? Some women can't have them, so after that, a mild pill might be the option.

    Also, an internal trans-vaginal ultrasound just to check you're ovaries and the health of your uterus and overall reproductive system would not be a bad idea! That would be the first step in determining if you've got abnormal follicle development on your ovaries and any debris floating immediately nearby in your abdominal cavity, and will show if your uterus is looking fibrous in any way which can produce prolonged bleeding and pain.

    If surgery comes into play (assuming you haven't had any surgeries to date) due to any findings of cysts or pelvic bleeding, that's the next wave of research. Don't do that lightly. In fact, if it gets to that point, come back here and lets look at the options and the prognosis. The last thing you want is to opt or surgery with the wrong consultant who doesnt know how to treat endometriomas on ovaries or lesions, and then have reoccuring growth as well as surgical scarring! So, one step at a time.

    I hope you get what you need!!! Please let us know how you get on! xx

  • I am 21, been going through this for so long and thank you for all the advice I'll try and get something outta the doctor tomorrow

  • Ok. Yes indeed, this is the ageist said of early endo diagnosis. I don't know why it's appropriate for them to think young women just naturally live in a state of constant, heavy bleeding and give it the "gosh, that's just bad period pain" treatment. This is not normal. And based on where I am now at the age of 40, having be exactly where you are now, you're headed for a lifetime of bullshit so lets get this sorted as early as possible.

    You be strong, woman! The heavy bleeding and pain needs to be treated right now with either a coil or a pill, and right now would be a really good time to start checking that all is well with internal scans. So ask for that. The earlier you get them to start investigating your case, the better... but unfortunately in this system, it's you that are going to have to drive it.

    Be as stubborn as a fucking donkey. You can tell them your 40-year-old ghost of Christmas Future has shown you how this is all going to end up and has warned you it will get worse if it's not tracked and treated starting now. ;)

    Let me know how you get on. If you need support or reminding about what to say before going in to them, get back on here or PM me and we'll get your back.

    Lots of love! xx

  • Pester power. Seriously keep going back to your GP, or find another one who is a bit more sympathetic (easier said than done a lot of the time). Get referred to a gynae or endo consultant and keep calling (see below). Remember you deserve to be seen as much as someone older than you even though you may not be "typical" of what the GP thinks an endo sufferer is. You have my sympathies on the pain and the whole horribleness of the situation. I know at 21 you are an adult but have you got someone who could go with you, a friend, mom or auntie? I am taking my husband to my appointments (I'm 37) as I sometimes feel they don't listen to me but when he tells them what it looks like when I suffer and how it affects me then they get another dimension on things.

    I am under gynae (first appointment in April), urology and colo-rectal. I need to go back to colo-rectal and was told June. I have been ringing at least once a week to check for cancellations and got my GP to write me a letter calling me urgent, a week on and they hadn't sent it. Paid off as the colo-rectal secretary has called me today with a cancellation - she offered it me as "I know you are desperate". I think she also wants me to stop calling but I don't care now I have an appointment!

  • Hi Hun I feel you pain and frustration, I have been battling with this disease and the NHS for nearly 20years. It took them 5 years to diagnose the endometriosis and although I had 6 year chronic pain free after my hysterectomy its back again my bowel and bladder. It ignores me that a young woman like yourself is still having the same issues. Be strong and you tell that doctor tomorrow. Take care xx

  • Hi - I hope you get this in time.

    To be left all this time with nothing being done really is shocking.

    Endometriosis doesn't cause period problems, they are caused by a hormone imbalance. But because endometriosis is also associated with hormone imbalance they usually occur together. So women with endo usually have period problems, but people with period problems don't necessarily have endo. There are several things you need investigating.

    Painful, heavy periods such as you are experiencing might be caused by pelvic inflammatory disease, endomyosis or be associated with endometriosis. They can also be caused by a thyroid disorder (hypothyroidism). All this blood loss may well have left you anaemic.

    You should be having all sorts of tests done, to include blood tests, an ultrasound and possibly a hysteroscopy to look inside your uterus.

    I am giving you the links below that confirm how you should be treated under NHS Choices - which essentially is the NHS protocol for dealing with the symptoms you have been reporting. Copy these off and take them with you so they know you know how you should be treated. Having the power of this knowledge should enable you to keep calm and not loose your rag with them which is always best.

    First of all describe your symptoms in detail (I assume you will have already written this down so you don't forget anything) and check they report this correctly on your record. If they say you can't have this or you can't have that (e.g you can't have adeno or endo) then refer to this info that confirms that you can and calmly ask them to record that on your record and why. Then again check what they have written - this is your right. Again, if they refuse to do the tests ask them to record that and why. I would very much hope this will get some action but if not you would then need to follow it through with a complaint on the grounds that they refuse to allow you your rights under HNS Choices for the tests/treatment indicated for your symptoms.

    nhs.uk/Conditions/Periods-h...

    nhs.uk/Conditions/Periods-h...

    nhs.uk/Conditions/Hysterosc...

    When you have more time have a look at my post on endo and its symptoms to see if you have any apart from period problems/pain that might indicate endo. But you need all of the above investigating first. A lap would be further down the line

    x

  • My symptoms are,

    Pain in lower belly when on period same pain when not on period

    Shoulder pain when I'm on period

    Blood when wiping after having a poop!

    Lower back pain

    Spouts of confusion

    Headache and migraines more often than not

    Sleeplessness

    Moos swings

    Heavy periods with big clots

    Pain during and after sex

    I have had unprotected sec with my partner for just under a year and u haven't fallen pregnant

  • Hi - be sure to tell your GP of all the symptoms and ensure they are written down on your record. It does sound a lot like endo, but the NHS protocol for first course treatment is the same for suspected endo as for heavy periods - hormone medication, such as the mirena coil. But you should have the investigations done first. Then if the medication didn't help you would want a laparoscopy but they are unlikely to offer you this yet. Take a copy of eveything I sent you links to and stick to your guns in getting the right treatment programme started. x

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