Hi, never done this before. Sorry in advance if it doesn't make sense. So I started my period at age 12. Suffered with them really bad and they were heavy. I thought that was normal at first. I then had other symptoms like migranes, serve cramps in stomach and back, tired all time and having to have naps. Throwing up. Having time off of school. At age 13 and a half I decided to go to doctors. They then told me to monitor it for now. I did this. It still didn't improve so went back. They then decided to put my on the contraceptive pill only the on that you take for 21 days. My periods always only last for 4 days. The pill didn't really do much. Still had headaches, cramps, heavy periods.
Fast forward to 2022. I started to get dizzy and lightheaded. Knew it wasn't normal. Went to doctors and the said it was the pill. So I change to a different one which is the one you take everyday. I have been on that pill since. It did stop my periods. I didn't go on it for that. I just wanted to dizziness to go which it did. From then I still had the occasional sharp pain in my private area which I just put it down to a water infection.
8 weeks ago, I woke up and started to have the really bad pain in my lower stomach and back area and in my private area. I also notice it hurt to go to toilet before during and after. So I went to the doctors. I thought I would be an urine infection. They said it will be a kidney infection so did tests sent them off and gave me antibiotics. Tests come back all clear and I was still in pain antibiotics didn't do anything. Next thing they tried to say was that I have IBS, PID. My symptoms didn't really match with them but I went along with it. They the kept testing me for everything. I have been in hospital 4 times in the last 8 weeks. The pain is getting worst and worst and now is effecting my lift. I can't work, drive or walk. When I walk I can't walk far without feeling like I could fall because of the pain. My last 2 hospital visit have been awful. I have told them I think I could have endometriosis I explain my symptoms. They just keep saying your too young, it's just chronic pain you will have to learn to live with it. We don't k ow what it is nothing we can do. All your test are clear your fine. Your not seve enough. Your not an emergency. It's so frustrating to feel like you are jot being heard. Everytime I was admitted I would cry because of the pain and frustration. My doctor believes me but can't do alot as its down to the hospital. A and e staff think I have it ED staff think I have it. But the ward it get put into keep dismissing it. I am at breaking point. This is the lowest I have been. I don't know what I can do.Then the gynaecologist I saw in the ward said that's it's not endometriosis. She just said my age and symptoms dont match which is disbelive. I could tell she couldnt be bothered. I have managed to move my gynaecologist appointment from 14th October to 30th September . Not sure how that will go. I also had an internal and external scan done. Couldn't tolerate internal to painful so did an external. I have never felt pain like it. Which again isn't normal. But it all come back clear. I know my next steps are to have an MRI scan and possibly that surgery. No one seems to think there is anything wrong and don't seem to take me seriously. I found the endometriosis uk website so helpful. To hear the other people's experiences have bene similar is crazy. I thought I was the only one. I thought I was crazy and that I was just making it all up. I just hope I start to get answers soon. I keep doing this. What can I do moving forward. I can't go private can't afford it. I have been on all sorts of medications. None are working. I have been on morphing that's not doing anything. What can I do. I haven't got the energy to keep fighting. I will for now but I feel like I will never win.
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You definitely aren’t crazy or imagining the pain and other symptoms. Although it could be other things there is also a good chance, unfortunately, that it’s possibly Endo. You should definitely say you want an MRI, although not always conclusive (we are so lucky 🙄) ultrasound can be good if the person doing it knows what to look for, there aren’t many though. Is the Gynaecologist you’re seeing knowledgeable about Endo?
Write down your history and symptoms so you don’t forget anything. Is someone going with you? I had an appointment the other week and had a friend on speaker, it does make a difference.
I initially paid to see Gynae, which was about fibroids on ultrasound but he diagnosed Endo and thought fibroids weren’t much, far more of those in the end as well as Endo.
I will have someone with me when I have my appointment. In the hospital the gynaecologist I am not sure if they had knowledge but didn't seem like it. I just feel unheard. I have had enough. I am exhausted. And I really so think I have endometriosis. All my family and friends have said the same. I will definitely push fir MRI but how.
Completely understand how you feel, my GP knows I haven’t forgiven them for gaslighting me, but they do what they can to help now.
It is very exhausting, the disease and the fighting.
Be firm that you would like an MRI of the abdomen as well as pelvis, to cover other things. It won’t be easy but try not to get upset at the appointment, been there it just makes you feel worse. Don’t let them put you down. Take a look at the NICE guidelines they are useful for getting what you want at times. They are using scans more these days. MRI is better for Endo than CT as well.
Thank you so much for you support and advice I really appreciate it. I will definitely keep asking for a MRI especially for the pelvis and abdomen. Someone told me to do a CT but I won't as endo doesn't show uo really on there. Honestly thank you again.
It’s no problem, please ask anything, last few years I’ve pushed lots with drs to get things done. They don’t want to be accused of missing anything either so we are in a pretty good position 🙂
MRI is definitely better than CT, I knew that before but registrar the other week confirmed it.
Hello, I’m so sorry you’re struggling. It’s awful not being listened to, it took eight years for me to get answers. You’re not too young, they simply don’t know enough about endometriosis. It’s appalling.
I had multiple occasions where pain was passed off as UTI, then tests coming back normal. I also had IBS, stress and it’s all in my head.
Advice for your appointment at the end of the month…
- Keep a diary of symptoms, literally every single day. It’s hard for them to dispute it when you have recorded everything.
- Take someone with you that can challenge on your behalf. I never did and left so many appointments bewildered and upset.
- Make it clear to them, that you know ultrasounds can show absolutely nothing wrong. I’ve lost count of the amount I’ve had and they were all normal (WRONG - I have deep infiltrating Endo/Adeno and organs tethered together). Unless you have endometrioma on ovaries likelyhood of detection is low, unless a specialist is doing the scanning.
- Use the painful internal ultrasound as proof something isn’t right. They shouldn’t be painful, that’s categorically not right so if they try to brush that off, ask them to explain how or why that’s happening.
- Request the MRI. This was huge turning point for me and they soon realised they’d been brushing me off for years.
Don’t be afraid to complain if you leave the appointment feeling unheard, belittled or dismissed. I complained to my local hospital four times, holding problem individual/departments accountable is the only way they’re going to learn and you’re going to get the treatment you deserve.
Wishing you the best of luck. Get angry and keep fighting - you shouldn’t have to but it’s unfortunately where we’re still at with this disease. xx
Thank you for replying it means alot. I will be your advice too. I won't stop fighting don't you worry. It helps people replying back it makes it seem real and makes me feel like it's ok to feel like this and I am not making it up. Thank you again xx
They really do and it’s unacceptable. You’re not alone.
My last smear, the nurse said I was making the pain unbearable by tensing when I honestly wasn’t. I’d just reached a point where I couldn’t endure a speculum.
I’ve really only seen progress since I’ve got angry, and forced them to listen. You’ve got this!
They said the severe pain I was experiencing during the speculum/internal ultrasound was due to my uterus being attached to other organs. It’s supposed to move but mine didn’t, this was found on an MRI. And then confirmed during surgery, hopefully you have some success with the MRI request.
hi my endometrosis didn’t show up on ultrasounds internals and external . But it did through MRi which showed stage 1 endo. The consultant said stage 1 endo usually causes maximum pain (oddly ) . I would definitely have an mri and push for it. I’m trying to push for a kidney mri as I think the endo might be in my kidneys too, as I have permanent flank pain. Sorry your suffering I know how it feels , often having to miss work due to severe pain.
I definitely will push and it's so annoying the pain hasn't gone. I have now had it for 8 weeks and it seems to be worse. And having to miss work is annoying as I have finally got my new job I have dreamed off and now I have been signed off because I can't do the job. How shall I push for the MRI. Through my doctor or through the gynaecology.
Yoi are defo not crazy its the gynae bods that waltz around and have no education on endo so they cant advise its such a specialost area. I too was dismissed by the gp had so many pain killers thay did nothing. And yes gp just brushed me off.Now in my 40 s and discovery that endo can start in your teens.
Do write down any questions you mite have for your appointment and its a long processs but defo get an mri and ultrasound done. Always trust your gut its your body and you know how your feeling and what symptoms.you arw suffering from.
I had similar experience to yours. Until i decided to get a private MRI for pelvis. I got the results in 2 days and it shows stage 4 Endometriosis, I opened a case with pals and now being taken seriously. I am seeing Gynae this Friday which Pals have arranged. I hope they can do a MRI for you or if you can get one privately. We know our bodies, and if something doesn’t feel right it isn’t. X
Actually. I went through pals this week to make a complaint. I asked for me to be taken seriously, to raise awareness of how the ward is treating people is not ok. I asked to have an MRI scan and explained why. And I ask for the surgery too. Might not get that one but I really need this MRI I am in so much pain all the time. I am so exhausted mentally and physically. I am really struggling. Thanks for reaching out x
Hopefully Pals help you get your MRI. I would put all your experience in writing and email them. They take you more seriously, write all the hospital visits and dates. They have booked me another MRI scan too. Good luck xx
From my understanding the gp can refer you for a ultrasound no MRI. It has to be from the hospital. And in my case because my ultrasound wasn’t showing much. They wouldn’t do it, so i had to go private. I do know pals can help with this. Or when you see gynaecologist push for a MRI. They can do urgent referrals. X
Ok, I will do as my ultrasounds showed up clear, too. They said there was nothing else they could do. There was the hospitals comment. I will ask the gynaecologist when I see them .
My GP sent me for my MRI as an urgent referral - the GP can send you although in your case if push with both as it can’t hurt for them both to be on it.
I am so sorry you have to go thru this. A number of things resonated with my experience and I got an adeno/endo diagnosis 4 months ago so push for that MRI.
I had stabbing vaginal pain from beg of year and it hurt to wee. Worse week of period and ovulation. Negligible back pain but lots of fatigue. Clearly hormonal with cystic acne and breast pain but I was still given 2 rounds of antibiotics for a UTI I did not have. I was then given 5 rounds of thrush treatments even tho I did not have symptoms of thrush which obviously did nothing to help.
I have private med insurance so insisted on a gynae referral. Gynae tried to fob me off with just a pill. I insisted I wanted a diagnosis as I might have endo and wanted an MRI. Lo and behold, MRI showed endo/adeno and some adhesion to intestine. Now on dienogest and contemplating a laproscopic procedure.
Really empathise with frustrating experience of folks trying to minimise it. I have had bad PMS and period pain all my life and several male GPs have tried to put me on anti depressants for it instead of treating it. This is why I only see female GPs now....
Glad I am not the only one. And I only like speaking to females and I feel most male medical problems don't always get where you are coming from. I will keep pushing.
All I can say is I’m sorry you are going through this and many people unfortunately have had a similar experience. The only way to truly diagnose endometriosis is with laparoscopy and biopsy. I myself have had problems since the day my periods started at 12, I am now 28 and only got diagnosed in July this year after laparoscopy with all other scans like ultrasounds coming back clear. I also got dismissed as having IBS and told my symptoms do not seem like endometriosis. Keep pushing for answers. I would keep a diary ready for your next appointment of all your symptoms and how it’s impacting your life. Good luck!
there is no age limit to endometriosis. It can start when your periods begin and stop when you stop. However, there is plenty that you can do to help yourself. Dian Shepperson Mills wrote a book ‘Endometriosis: a key to healing and fertility through nutrition’. There are some useful tips, she is a nutritional therapist who suffered from endometriosis for years on and off, yes it can go into remission, retrained as a nutritional therapist, been involved with the charities and knows an lot about endometriosis. More information on endometriosis.co.uk/ Good luck
hun i was similar tried everything pill didnt work it was like wasn’t taking anything saw a gynecologist when I was in my early twenties as my ultrasound showed a cyst about 5 cm the gynecologist was not long off retiring age . He did an internal and said I was fine . I wasn’t at the age of thirty seven was diagnosed with severe endometriosis I was told it could be ibs or Ibd or diverticulitis I had my periods at just ten I was mad to believe the pain was normal even though I felt my stomach was being ripped apart every month. Got to the point I had to have a coil which helped me with the heavy bleeding so I light bleed but the pain is just as severe . I have also been diagnosed with fibromyalgia which is a chronic pain condition . I have good and bad days . It’s more common now endometriosis but allot isn’t being done to diagnosis women younger . I am a firm believer that if it a caught a lot younger the disease may not be as bad if found later . Also quite a few old school gynecologist think it’s a middle age condition only which is not true. Please have some
One advocate for you . I had lots of test a over the years and gone to a and e in excruciating pain throwing up them accusing me of being pregnant when I said I didn’t have a bf now I have the diagnosis I feel more validated but I still think I will have to advocate for myself as I have ops but in excruciating pain now five months on . There are a few other conditions if it isn’t endo but the thing is severe scar tissue can look fine on the surface but is a mess underneath . Endometriosis specialist gynecologist s are the people you need to see as they can read scans better as they have a trained eye In recognising symptoms and the signs that they show In mris and the ultrasounds as they use something called
The sliding scale . The other thing is pain
Doesn’t always correlate to stage of disease so you could of minimal / mild endo and have alot of pain and someone with stage four with severe disease may have no symptoms and not know they even have it x unfortunately my pelvis was frozen which meant all my pelvis organs stuck together which is why my pain levels so high as organs out of place can put pressure on your muscles and joints too which is referred pain. Don’t give up keep fighting answers x
Thank you so much for opening up. It really helps to see I am not the only one suffering. It's just so hard when u are told its normal and you will just have to live with it. The more movement I do atm the worst the pain is. So I just have to stay in bed. There is no urgency with this and it'd so frustrating. They are not suffering what I am. They should take it more seriously. No pain relief is working and waiting ti get more but we need advice from pain team which takes ages. So I am just sat here in pain. I am going crazy. I want to phone doctors again but don't want to seem like I am going on. It's so hard and tiring.
hun when my doctors didn’t at first listen to me and I wasn’t given any pain meds if I was in that much pain would go to a and e . I would be doubled and bent over . The thing is they suspected uti s kidney infections and so on but tests were all clear apart from microscopic amounts of blood in the urine . I’m glad was eventually listened to as it’s a relief . Internals and sec was extremely painful so pain with those things not normal . Keep Pushing and. Try and keep persevering . It is so hard to get people like professionals to listen . My mum bless her came to a lot of appointments as am
Autistic so I get extreme anxiety and then start to panic and never know what to say . It’s very handy to make notes on how long your cycle is how heavy your monthly is how long you bleed for whether you have clots etc and most importantly your pain scale but also how it is affecting your life and mental health. You honestly are so not alone . When you feel alone and stay in bed and don’t have a social life that and pain effects us physically and emotionally . I was very very fortunate that where I live now and the hospital I go to they have one of the endometriosis centre attached to the hospital . As it’s a learning and teaching hospital they’re are a few consultant specialists that deal with endo then they have nurses and radiologist bowel and urine specialists and pain clinic drs that all
Are brilliant in there field of expertise . Please don’t do what I did as at first I listened to the gaslighting as they are drs they know best but no listen to your body . If a man was in this much pain they would be treated so differently but women we have to almost like suck it up and I think that has always been . It’s us women that just have to make everything just so xxx
So true and I am suffering similar. When I have internals done I am I agony which isn't normal. Even swobs bring are painful. I will keep pushing and I am not listening to them when they try and say it's soemthing else like an UTI or something similar. Thank you again.
Quick update. Here is a letter that I received from my doctor from the pain relief team. I am not taking medication as they said there is no proof it work for Pelvic and abdominal pain. It's a joke. I am frustrated. I am upset. I don't know what to do.Thank you for your new patient referral. I have placed her on the waiting list to be seen urgently but unfortunately this is still going to be several months away. I think it is going to be difficult to help this young lady with her pain issues until she feels that all the investigations have been completed and she is reassured that there is nothing sinister underlying the pain. I think this is quite understandable and it is very distressing to have severe pain without any obvious cause. While she is waiting for review with us it might be worth trying duloxetine at 30 mg at night increasing to a BD. dose her for 4-6 weeks. This seems to be a better analgesic for pelvic & abdominal pain than other drugs but there is no good clinical trials to back this up. I have put some links below for resources that might be helpful and copied the letter to the patient so she can access these if she would like. They are more of an explanation about the nature of chronic pain , why sometimes we can't give a definitive cause
Sorry it was a usual crap response, I’ve been told the same, I believe there is a cause, they just don’t know enough about Endo or pain. We know there is nothing ‘sinister’ they focus too much on that term and it’s not what we are after. Endo can be microscopic and difficult to see as well as not showing on scans.
Can’t remember if I mentioned I’ve found Duloxitine helps a bit.
Oh ok that does help to know the medication might help a bit. I hope so. I am also not going to stop wanting answers. I will obviously keep you guys posted. Thank you for all of the support through this.
I don’t know how comfortable you will be but it seems that this is an entirely unacceptable situation that’s affecting your education and future if the medics don’t actually take proper care and action. Their attitude is all too common in women’s health care. Getting your plight in front of your local MP, Health Minister and local radio to shame them into proper care seems worth considering. An MRI with appropriately trained staff and radiographers is the least that should happen. This is classic presentation of Endo and needs proper care now and not in several years time.
It took me 48yrs to get diagnosed and not for the want of trying and being totally clear with medics. Don’t be afraid to be loud, insistent and be willing to go large. No one should have to suffer like this whatever your age.
Just a quick question. How would I briefly explain what's be happening, where, how I am not feeling listened to, ignored, let down. Could you possibly help me write the email. Never had to do it before x
Thank you for such trust but I don’t think it’s something I can do for you - but I get it can feel overwhelming! I think you would be far better served working with someone close by as it will probably be more than one email and depending on who you are approaching it will want a different intro to the problem's. I think you’ll need ongoing support to get somewhere and a good buddy locally will serve you way better than me as a random stranger. You don’t say how old you are now or your situation but maybe a parent, school tutor, or mentor of some kind? You need someone who has your back. Worse case scenario try Citizens Advice to assist you. You’ll get the hang of it , keep your cool be clear, look them in the eye 👁️. Ask them what are they going to do about it.
All that said I would do the following to start getting your ducks in a row and put them on separate documents for each section then you can add them to any emails you choose to send or not. Keep it short as possible so you don’t lose engagement with the issue but temper that with ensuring it’s an accurate and full summary of what you’ve experienced.
1) Timeline of the Problem. Date, age , symptoms, saw GP’s ( how many approx) A&E visits, consultants. Treatment prescribed. Keep it very spare. No emotional input or extra detail . Have a look at the EndoUK site they have a symptom checker that may also help you recall. Note what assessments you’ve asked for or treatments you’ve requested and been denied. Note briefly why you’ve asked for them ( like ultrasound doesn’t always show Endo , need for specialist qualified sonographers or radiologists ).
2) Short paragraph on the emotional and mental impact it has had on you.
3) Timeline of the effect it has had on education - has it affected exams, study capacity, ability to do sports, your social life.
These lists are worth taking to your GP , medical meetings and handing over both on paper and by email. They have zero excuse then.
Get someone to check the spelling and grammar and that it makes sense overall.
If you are going to MP take copies to leave and a request for what you’d like them to do for you. Ask them what they can do to help you.
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Doctors Think I Have Endometriosis But Won't Do Anything?? 
I am so upset and don’t know where to go from here…
I just want to cry :-(
Am I being ignored?
