Diagnosis at 16

I have symptoms that are very similar to those of endometriosis sufferers. My aunty has it and I've spoken to her (and others) about it and they thinks I have it. I've had sever (mostly unbearable pain) monthly for about 3 years. Most months I actually pass out because of this pain. I'm currently waiting for an appointment with a gynaecologist, but have had a ultra scan (nothing showed up luckily). I'm on the combined contraceptive pill but doesn't really help me much other than helping to regulate my period so I can kind of know when the pain will begin. I've also on mefanamic acid, but it just makes me really really emotional rather than helping much. Paracetamol and Ibuprofen don't even slightly stop the pain, they're no where near strong enough. I've taken prescription co-dydamol before when I had it which helped a bit. But it's just really difficult not knowing whether I actually have this condition or not, my GP has told me that it is 'very very unlikely someone my age would' but I've researched it and apparently i can and it seems like other people think I do... It's horrible. The pain is like i've been stabbed and then my whole lower body is contracting, like everything in my lower abdomen is being squeezed really really tightly. It's very intense and kind of dragging constant feeling. I normally have quite a high pain threshold, and this is why i don't think this can possibly be normal. I don't know anyone else that passes out every month because of pain... but the doctors make me feeling like i'm stupid.

Any ideas or help? Sorry for rambling....

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  • Hi, I've had a really similar experience to you. I've had bad pain since my periods started when I was 13. It took 10 years of visiting my GP before they even referred me to see a gynaecologist, so it's great that you're going to see one soon :) Even though I have a lot of pain every month and am usually off work for a couple of days, I only have mild endometriosis. The amount of pain you have doesn't correspond with the amount of endometriosis you may have, if you have it at all. I compare the pain to what I'd imagine it would be like to have a canon ball fired at my tummy! For a long time, I thought that I was making it up because my GP said that it was just normal period pain. My GP told me that the pill was the only way to stop the pain, but as well as the pain, I put on a lot of weight and they made me depressed ( I went through 7/8 different types over 2/3 years) so I've deceided not to take any more hormone treatments as they don't work for me. I really don't like the fuzzy feeling that pain killers like co-codamol give me so i try to take paracetamol and ibuprofen just before or as the pain is starting and then i curl up with an electric heat pad which is much better than a hot water bottle because it never gets cold. Hope this helps :)

  • Most of us have had signs of endo from when we began having periods. I am only saying that based on the numerous accounts on this forum. There are ladies who didn't show any signs till later in life or after a pregnancy, but the majority I would say have difficulties from puberty onwards. In my case it took 29 years to get my surgery...the average wait is around 9 years. and the reason for that is because Doctors DO NOT LISTEN to what you are telling them.

    So there is no reason at all why at 16 you couldn't have endo causing your cyclical pains.

    You could have had it for a few years by then, so it certainly does need referring to a gynaecologist. Now that is the tricky thing.

    On the NHS you have to ask your GP to refer you.

    If your GP refuses because he is a dinosaur and not at all up to date on endometriosis, then you have options.

    Firstly see a different GP within the same practise (preferably one dealing with women's health issues) or if needs be, transfer to a different practise altogether and tell the practise manager at the old place why you are moving..because they are not taking your medical situation seriously and not refering you to a specialist. They need to be told and told and told till it sinks in and the system changes for the next unfortunate teenager in distress..

    Another option is dependant on the bank of mum and dad or grandparents.

    That is to book a private consultation with an endo specialist gynaecologist..not an ordinary gynaecologist..but an endo expert.

    He or She may from your symptoms then refer you back to the hosp for NHS scans and then NHS treatment, but this is the quickest way by far of getting an appointment...if you can afford it.

    the list of accredited endo centres is on the following website:

    bsge.org.uk/ec-BSGE-accredi...

    some of those are private some are NHS.

    Otherwise the waiting lists are very long, simply because there are far too many endo ladies in the country and far too few endo-specialist surgeons to meet the demand. Plenty of regular gynaecologists but you need one who knows what they are doing when looking for and removing endo.

    Often the 1st diagnostic op is done by a regular gynae and often too they are not nearly experenced enough to spot hard to see endo lesions in young ladies, so you could end up with a negative diagnosis for endo, even if you do infact have the disease.

    What you also need to do is stop having periods. If you do have endo, or even if you don't, clearly having amonthly hell is not doing you any good whatsoever.

    This is something to discuss with your gynaecologist.

    The Mirena Coil would take around 5 months to start working but when it does it stops your periods for up to 5 years, which would be ideal and allow you to get through exams and higher education or starting work without being crippled by periods.

    Best way to get that put in is at the same time as the diagnostic laparoscopy operation to look for endo.

    Another option is back to back birth control pills, don't stop at the end of week 3 and have a period, just carry on with the next packet of tablets right away.

    This way you can have a period every 3 months not every month, but it does rely on you remembering to take them each and every day, whereas with mirena: no tablets, no tampons, towels or pain killers at all. Saves a fortune and gives you back at least a quarter of each year without being pre-occupied with blood and pain.

    If you don't have endo, you might have fibroids though that would show up on ultrasound scans most of the time and not require surgery to be diagnosed.

    You have done the right thing joining this forum, we have all had to battle to get diagnosed and then tried many different treatment options. The earlier your disease can be diagnosed if it is endo, the better your chances of having it operated on before it threatens your fertility prospects any more than it has already.

    The weird part of endo is that the less of it you have the more the pain tends to be.

    Even though you may be in agony each month, it could mean very little endo is there and what is there just happens to be on very sensitive nerves.

    Step 1 check out the costs of a private consultation.

    Then discuss with the bank of mum and dad if they can afford that.

    If they cannot, then you will have to book an appointment with a different GP at the local surgery and take a parent with you for moral support. Don't be fobbed off, you do need to get this investigated by the right people. Insist your GP refers you to a gynaecologist but be aware that it could be months before any appointment comes through on the NHS.

    In the meantime try out birth control pills back to back to give you a break from periods for a bit. It won't stop the endo, but at least it will stop the periods which is just as hard to put up with...perhaps even more so.

    Keep us posted and any questions just ask on here. No topic is too gruesome.

    Some of us might be a lot older but that doesn't mean we can't remember being teenagers with endo. It is seered on our brains what we have been through especially when we were younger. It is not something you can forget even if you want to.

  • My daughter turned 17 in August and started with a gynae in September. He thinks she likely has endo, tho it is unusual it does still happen. .. esp if it's in the family. I have severe stage 4 endo. She see's him again in Dec whereby he will likely arrange for a lap. She had the scan and it showed nothing... but that is often the case. Ur not alone honey and it really can happen as young as u. Isla has had alot of probs since she started her periods aged 13 too. xx

  • Thank you all for the advice, it makes such a difference to actually talk to people about it, can be really lonely as I'm sure you know! I am booked in for a gynae appointment in a couple of weeks so hopefully I'll get a little bit closer to diagnosis then. I just think it's crazy that people who are in so much pain or clearly have something wrong have to wait so long for diagnosis/help - so sure this wouldn't happen with any other disease or condition! Thank you for the support x

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