Hi, I'm new to this and to be honest I don't know where else to turn so I thought I'd ask people who have been through it all!
I started getting my cycle when I was about 12 or 13, and it was irregular. It didn't come back for 6 months then 2 months and so on, but once it got a bit more regular it got heavier and more painful to the point I was constantly leaking and often had to leave school. It's generally more on the first 2 days of my period, but things escalated back in 2013 when I went on a uni open day.
I was on tranexamic acid and mefenamic acid but I'd been finding they were starting to stop working, and I could feel how sick I felt. I got spots in my vision, my ears were buzzing and I felt too hot and ended up collapsing in a stairwell. I was sick, the pain wouldn't stop and it wasn't until builders found me and the staff called an ambulance that it began to subside. (It always seemed like after these most painful moments it subsided a bit) I was sent to the GP and put on bionovum and told it was probably just hormones. I've been on 5 different pills and only the one I'm currently on has worked in any way - but now the pain is starting to come back and I'm starting to be unable to get out of bed on the first day or so. I didn't collapse for a while after that but it happened again when I went on holiday a year and a bit later, I was sick and couldn't move. Then it happened the next month, and the next.
I'd always get pain in my legs and in my hips, it felt like there was no blood flowing in the lower half of my body it felt numb and achy and now that's starting to come back too, but none of the GPs have listened, or the nurses. They said it wasn't worth the hassle being referred to anyone, but I don't know how much longer I can go on waiting for the pain to come back so badly I collapse again. I've started getting just general pain in my lower back a lot of the time and dull cramps every few days, (tmi maybe) as well as bowel problems which seem to be getting worse.
I'm 21 now, and I really just don't know how to get anyone to listen? It doesn't just feel like hormones!
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georgiabee
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Second of all change gp! Find someone who will listen, read the N.I.C.E guidelines on endometriosis diagnosis and treatments print it out take it with you.
Thirdly, Then make sure you are referred to an endometriosis specialist clinic, there are lists on any that are closest to you. I had to travel an hour and a half to one for my treatment after being treated diabolically at a ‘general gyena’ department, the risk of them not finding it or successfully treating is too high.
Thank you that's really encouraging to hear, I was starting to think I was just a wimp and didn't deserve to talk to anyone about this! I'll have a look at lists closest to me so I know what I'm dealing with, I've heard so many stories now of people missing it so I want to know it's done properly - and thanks for telling me about the guidelines I'd never actually seen them before! x
Hey, I know how you feeling when doctors don’t listen. It took me a year and £214 to get my lap done which was last week.
After I went to a private endo specialist he referred me back to the nhs with one of his colleagues. General gynae can miss endo but mine didn’t and he managed to remove it all.
You just have to basically annoy your doctor and keep going back until they do something. Advocate your symptoms and argue until they refer you to a gynae etc xx
Yikes it's wild how they won't listen it's really disheartening, but I'm glad you've managed to get diagnosed and sorted it - Just a shame that's come out of your own pocket to find it! But at least you're on the road to managing it a bit better and that's definitely where I want to be x
Hi I hope you are well today definitely change your gp it doesn't matter how many times you go keep going until you find a gp who will listen to you and your needs which is one to be referred to a specialist and two some strong painkillers it took me a long time to find a gp who would refer me to a specialist and made sure the referral was made asap please don't leave it you need to find out what is causing you to be so poorly good luck i hope you get the help you deserve 💕💕
I'm well thank you though I've woken today with a sore back and bloating which is not what I had yesterday! I'm really hoping when I go back there's appointments with a female doctor because I was in and out of the last man's office in 1 minute and he didn't even ask how the pill was affecting me. I really hope I find out too because it's worrying me a lot <3
I wasn't as bad as you but endo ruined my life for decades. I diagnosed myself when I was 47 and paid £200 for a private consultation with someone on the BSGE list. He diagnosed endo and put me back on the NHS list for MRI then a lap. If I'd left it any longer I'd have had to have a colonoscopy.
I just can't believe that professionals quite often won't listen and it takes ourselves to take extra measures to keep our bodies well and find out what's wrong, but I'm glad you got it sorted ASAP!
Hello, your pain is the story of so many others too. Thank you for sharing. I would say that changing GP is quite possibly a dangerous thing to do as they could continue to fob patients off with similar symptoms to you. Put your experience into a letter (you can pretty much cut and paste what you write above) and set out exactly what you want to happen and preferably by when. Declare your expectations in an assertive way to your GP and mention the consequences of you collapsing one more time. Explain you are happy to get a second, third...fourth opinion, that your experience is not normal in any way. It disrupts your life, your mental health and your ability to plan ahead. This is a human rights issue. A quality of life issue and with the GP’s duty of care it will affect the surgery and their future if not dealt with correctly (Ok, I would only hint at taking further legal steps if your issues are merely fobbed off one more time...).
Once it is in writing you should use the letter as your agenda for each meeting with your GP. If they fail to act then you have evidence that your case was not handled appropriately. There may be waiting lists for investigative appointments but write a letter to each consultant every time; your letters will expedite this waiting process, as you have had the same symptoms since you were at school and this should mean this is not a curious one off case of illness.
I constantly say this to people: write a letter setting out what you expect to happen. This will shape your healthcare future, give you a personal record and give you some power back.
And eventually, if you do decide to change your GP you will know that you did all you could to get them to listen and they may well start looking out for young women’s health earlier on. You will have made A difference.
Thanks for listening! I'm definitely going to be writing a letter listing it all off and I might also keep a diary of everything I've been feeling just so I can see and they can see when it's often worse - I've woken up today feeling bloated and a sore back so something has clearly changed again overnight. I hope one day a change will be made I honestly do.
My GP has been dismissive for 6 years, and I went armed with the Pain Diary from the Endo organisation website and wrote down all my symptoms. She was extremely patronising, and told me that my "symptoms don't seem to indicate endo", but they really do. She finally agreed to refer me to a gynae. So keep trying! I also had an issue that there was only one female GP in my surgery who could give gynae referrals as she was the 'women's doctor', but I absolutely despise her and the care that she gives to patients who complain about any issues to do with their reproductive organs! I found back at uni the Student Health Service was amazing, but their solution to all problems is to put you on multiple contraceptive pills until your symptoms subside for a month and you stop bothering them. You're symptoms need to be looked at ! Keep fighting for yourself gal
Yes this is exactly what my uni nurse has done! She has put me on every single one under the sun and said if it doesn't get better we can try another contraceptive, but I don't want to be on the pill forever. I even went the afternoon that I'd collapsed and she just said it was probably hormones and put me on a different pill, but when I went to the centre in town for an emergency appointment the woman was quite concerned I hadn't been referred at all. Thank you my lovely x
Go to your gp, ask who the newest doctor in the surgery is or if there is a locum available - oddly I have found gps who are fresh of the boat or who only work part time are more enthusiastic and helpful. Say very clearly and assertively - 'I have had gynae issues over the past decade since my periods began; every month I am in intense pain to the point where I am bed bound, I have collapsed previously due to the pain and been hospitalized, I have ibs symptoms, vomiting and my mobility can affected. The symptoms are so severe that it is seriously impacting my quality of life. I have tried 5 contraceptive pills and numerous painkillers and none of them are working. I need you to refer me for an appointment urgently due to the impact that this is having on my life, with a gynae consultant, preferably one who specialises in endometriosis as I believe my symptoms are indicative of this.'
Keep trying until you get through to it, bring your mum, or a relative you trust, somebody who is very assertive.
Here's a list of specialist centres in the uk, see if you can see one of the consultants listed in your area (not all of them are listed here ie. northern ireland has specialists but no centre, but it's worth a shot). bsge.org.uk/endometriosis-c...
Also check out the endo resolved website for a list of symptoms, tick them off, print it out and take to your gp. endo-resolved.com/symptoms....
Good luck and hope you get sorted soon x
ps. agree with kendo16 re. writing a letter - something like a combination of what you said, she said and I said - so that it's on record. And the other girls that you may have to pay a few hundred for a private consultation to get referred back to the nhs. x
Ah thanks I'll definitely be writing this all down and taking it when I go next, I don't want to be a bother but after hearing other people's experiences I really don't think I can take the worry of wondering when it'll happen again and knowing that I'll basically be unable to do anything for 2 days at least. What you say about the newer doctors is true, though, I went to a newer one when I had my period for 3 months straight and he got me blood tests straight away because I was napping 5 times a day (something that hasn't really changed in all honesty but at least he tried!)
Maybe a bit more on the left than the right, I think - It's not something I experience as often but I know that it used to be a bit more achey on my left side!
I'm sorry to hear that you are having trouble getting referred to a specialist. We have lots of information on our website about getting a diagnosis and what to expect when you see your GP or a specialist. endometriosis-uk.org/gettin.... You may find it helpful to fill in a pain and symptoms diary for when you see you doctor
I’m so sorry what you’ve had to go through. It makes me so incredibly angry to STILL be reading so many posts like yours from wonderful ladies who are so desperate to help themselves yet just get continually ignored and made to feel they’re making the pain up. When is this ever going to stop.
There are some super replies already with some really great advice which I would agree wholeheartedly with. I just wanted to give you my pennies worth from someone way down the line in this journey who also got fobbed off so badly by GPs and show what can happen when things are shuffled under the carpet by doctors. To cut along story short I was continually ignored for 15 years. At 39 I was diagnosed with severe stage IV endometriosis which had invaded my ureters/pelvic walls/bowel/ovaries/uterus to name a few, sticking most organs together, the Endo had shut off one of my kidneys and I was being poisoned. Like you, I had awful leg pain and just knew something had been wrong yet no one ever believed me. I’m now nearly 45, have not been able to work properly for 3years, had to stop the business I’d spent years building up, have had major surgeries by great surgeons all paid for privately which have used all my savings and more up in order to get the best treatment I can and I still struggle terribly with pain. I also tried to have a baby for 8 years and paid huge amounts for unsuccessful ivf. It took a doctor in Australia to be the first to tell me that 15yrs of chronic fatigue and pain didn’t just occur for no reason, he listened and a few months later they operated and I finally got my diagnosis. At last I felt vindicated.
So much damage was done internally and all due to things being left for far too long to fester away and get worse, all because doctors didn’t believe there was any real problem. They have cost me my life as this illness has had such massive consequences for me & affected every part of my life, and I blame doctors entirely. I eventually gave up going to the GP because I was made to feel I was a hypochondriac and the pain was all in my head.
Please don’t let what happened to me happen to you. If you think there is something wrong, you push and you push, you do not stop pushing until you get in front of someone who will listen and help, don’t ever give up as it can have massive consequences later in life and I’d hate you to suffer even a quarter of what I have.
Just trying different pills and saying ‘it’s probably just hormones’ is just fobbing you off. Even just being put on hormone therapy has its implications too as it disrupts your natural hormone levels so much. It just disguises the symptoms, it doesn’t treat the cause.
I really hope you get the help you so need and stop being let down. All the v v best to you love, I’ve been there and know what you’re going through & have the upmost sympathy. Xx
Great replies above. I just wanted to reiterate what a poster has said above - it makes my blood boil that women are still being dismissed like this. I'm 43 now and this started when I was 17. At first very very severe periods (debilitating pain, vomiting, sweating, blacking out after the first 2 years of periods being fine), the terror struck when I started getting these symptoms any day of the month and I wouldn't be able to get up off the floor. Prior to that I'd always seen it as you get ill, you go to the Drs, they help, you recover. It's an absolute shock when they dismiss you repeatedly. It certainly made me feel like I was just weak and this was something many women go through and I had to get a grip but once it became daily I was petrified it was cancer. I was dismissed by 10 gps even tho I'd had to pack in college, was bedridden constantly for 9 months with my mum helping me to the bathroom. The bollocks you hear - 'it's stress related and you need to cope with it better' (yeah I'm stressed! I can't get off the floor and being repeatedly told by professionals it's normal!'), 'have a baby', best one - 'it's normal and when you're older you'll find you just don't have the time to get so stressed about it as you'll have much more to deal with in life' !!!!? By this point I was on codeine, tramadol, diazepam, Prozac (??) as they thought it was psychological which sent me mental, constantly crying, threw a plate at a wall and was still in agony bedridden. A gp from London was covering maternity for one of my local gps, she visited and that was the first time I heard the word endometriosis, then referred for laparoscopy. Thank god at least there are forums like this nowadays and you've found support. I would do all of the above re letter, diary, def take someone with you who has seen you in this state to the gp. I would try three gps at your practice (the newer/younger the better), if no joy then join another gp surgery. So good you can print out the NICE endometriosis guidelines now, you could print out symptoms from endo U.K. site and prepare to do battle. It really should not be this way. Little has changed in 25 years and I'm so sorry you're not getting the help you need. We are here, we will help you advocate for yourself and help you get to where you need to be. Post questions whenever they come up. Big hugs and take care xx
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