hi all, hope someone can give me some advice! I’ve been suffering with painful periods and fatigue for as long as I can remember, it’s painful to the point I’ve been sent home from work and can’t do anything but curl up into a ball and cry. I’ve been to the doctors about it a few times now. The first time I was told the only thing they can do is put me on the pill, I’ve heard lots of horror stories about it and said I didnt want to do that and basically got told I’d just have to suffer then. The second time I was prescribed mefenamic acid which hasn’t really helped (I also don’t want to be on a prescription forever and want to know the cause) and now I caved in and have been on the patch for around 6 months. I still experience crippling pain when I take my breaks but I feel that if I go back to the doctors I’m just going to be told there’s nothing they can do. I feel so lost and am also starting to doubt myself and think it’s not really that bad when I know it is. How do I get my Gp to take me seriously?
Not being taken seriously : hi all, hope... - Endometriosis UK
Not being taken seriously
Hi, I'm sorry you're not being taken seriously. This is something most of us have had to deal with sadly.
One thing that really helps is keeping a record of all your symptoms. I use an app called Clue. You can track your pain, your bleeding, and tons of other symptoms such as fatigue and pain. Then when you next go the the docs, you can take that with you as evidence and then ask them to refer you to a gynaecologist.
Lots of people here pay for private scans and consultations, so that's a good idea if you can afford it (I never could afford it so I'm not very knowledgeable about it myself, but many people here are).
If you stick with the NHS, you will have to get good at advocating for yourself. You shouldn't have to, but that's the world we live in right now. Can you ask for a different GP?
At any future appointment for suspected endo, go in armed with physical copies of records of your symptoms and make it clear how much this is affecting your day-to-day life. It took several GP appointments for me to get taken seriously, but I eventually found a doc who did, although he did make me go through tests to rule out everything else first.
I’ve defiantly considering saving up to go private, just so expensive! Thanks for the advice x
I hear you!
Here is my advice.
Be the difficult customer, ask for an ultrasound because this isn’t normal.
Tell them if it’s affecting your sex life (unfortunately this got me more attention than any other ‘symptoms’, I’m appalled but it’s true and at this stage, my condition affecting my partner was a bigger deal than being able to do my job). 😩
Keep going back, use phrases like ‘I can’t cope’.
You are within your rights to refuse hormone treatment, I always have. Progestin doesn’t suit everyone, causes depression for some.
Mefamic/Transexamic don’t kick in fast enough for me. I’ve tried for years.
Ask to find the root cause of the pain, if it’s anatomical eg uterus size shape adeno/fibroids or hormonal endo etc. (or all three) knowing what you are dealing with is helpful.
I’m only just learning all this myself but am getting somewhere by booking repeat GP appointments (eg if it’s not this can we investigate gastro), emailing secretaries with more questions or follow ups.
Don’t settle 🤗💕
Thanks for the advice I really appreciate it, hope you get the answers you’re looking for x
Make a list of your symptoms throughout your menstrual cycle for a couple of cycles then go back to the doctor with a chaperone. (This is where menstrual tracking apps are useful. Just check they are based in the EU. ) If you have private health insurance or can get it through work this is the time to join, mention it and use it.
I actually have adenomyosis so my symptoms presented like yours plus throwing up and passing out on some periods. I also have periods with large blood clots which I had since a teen and random bleeding. I have also been anaemic and iron deficient multiple times.
I am aware that the pill can work for some women with it which is the first line of treatment. The second line is the Mirena. For example Naga Muchetty has adenomyosis and the Mirena works for her. However she had to fight and pay privately to get that.
NHS gynaecological waiting lists are very long and to cut them they go through them to remove women who don't fit certain criteria. Some GPs will also not even entertain putting you on this or any waiting list if you haven't tried certain treatments, had certain tests or have other issues.
The problem you have is that due to the first line of treatment for painful periods/heavy menstrual bleeding being the pill only if it doesn't work, which you will probably end up arguing with GPs about as they don't believe you, will you be investigated further.
However what your treatment options are depends on your age and whether doctors insist on preserving your fertility. (Then in your 40s you end can up arguing with them as they will be insisting that you will go into the menopause soon.) The treatment options are poor due to lack of research into women gynecological problems.
You are also likely to be made to have a transvaginal ultrasound before being referred on. Again this comes with issues as only about 50% of cases can be picked up on ultrasound and that's only if the sonographer is skilled enough. Ultrasounds only scan the uterus and ovaries so if you do have endometriosis instead or in addition to any other condition, and it's not in those areas then it won't be picked up.
If you are referred on via the NHS due to something being picked up then you may have to deal with the poor attitude of some consultant gynecologists, regardless of their sex. The woman I had didn't believe that my ultrasound results were true. Luckily I need up seeing a junior doctor in her department who was kinder and more helpful. (As I was in my mid-40s my treatment options were not about preserving my fertility. )
I don’t even want children but I know that I don’t really have a say in terms of stuff like that because I’m only 21! But thank you for the advice x
"La la la can't hear you"Is how doctors treat women in regards to not wanting children until you are at least early 40s.
Some even suggest that you should have a child to solve your problems. The fact that endo, adeno, fibroids, PCOS etc can make it difficult getting pregnant in the first place and then cause issues with pregnancy are not mentioned.
(Incidentally if you wanted to get pregnant and couldn't after a year - taking account your age- then they would be more interested in finding out what is wrong.)
Make sure when a treatment is suggested to you, you know and understand the pros and cons. For example I didn't realise some women didn't understand that having endometrial ablation meant that you should never get pregnant and hysterectomies are supposed to be permanent.
The main problem you have is when you are finding out about treatments while most relieve symptoms for the majority, they are silent about it so you hear much more about the negatives.
It is worth talking to the women you are blood related to about their periods, how they responded to any treatments, and when they reached the menopause. (The last question is particularly important to ask your mother if you can and she has reached that stage.) I know for example none of my sisters respond well to progestogen only contraceptives so I wasn't surprised when I had issues.
Sorry to be so negative but if you are armed with knowledge about the bs you may encounter you will have ideas on how to deal with it. Some women have been totally devastated with the gaslighting and rudeness of some medical professionals.
My mum advised me not to to go on the pill because of her own negative experiences when she was young so that definitely solidified my decision not to go down that route! I’m very open with her about it, but she isn’t menopausal yet. But I’m definitely struggling with how my doctors have been treating me, I’ve considered moving surgeries but I feel discouraged and don’t want to be disappointed again when they brush me off.
Sorry you’re going through this and you’re not alone! I was like you and didn’t want to just be put on medication without actually understanding the cause of my symptoms/ pain. All I can advise is keep going back and keep pushing for answers, I had to be the first one to mention endometriosis potentially being the cause as the doctors never once voiced that could be the issue. They sent me for an ultrasound which came back normal (which most do as it’s not easily picked up on an ultrasound) But you have to become that ‘pushy’ patient. I would demand a referral to gynaecology and like other people have said be Armed with your list of symptoms and how frequent they are happening, the only true way to diagnose endo is through laparoscopy and biopsy taken to confirm. Keep demanding answers and all the best!
I've had the exact same situation with the patch and please do just demand that they refer you to a gynaecologist, it's the next step forward and as for work and university please do email your university and when you can with any prescription or referral information, personally they were rather considerate with extensions and abdences but do not let yourself be gaslit.I've just had a laparoscopy that turned out clear but I did have yo beg my gp for a gynae referral as she suggested it wasn't likely, endo is rare etc etc and I demanded the referral anyway. The gynae was alot more considerate for me and immediately placed me on the waiting list with alot of suspicion. Unfortunately there were no signs but all the symptoms are there so next I'm pushing for an MRI (used to test for Deep Infiltrating Endo. It's not fair to be living in such pain and not be taking seriously I wish you all the best!
Added bc I usually add but forgot: Be as patient and kind to yourself as you can be it's a frustrating process but so is the suffering and an answer is at the very least deserved!
thank you! I’m very lucky that my work is also very understanding, but I hope you get the answers you’re looking for!
Sending a gentle hug to you. Many of us have been where you are at, and it can be so frustrating. You have to be your own advocate and, unfortunately, it often means you have to search for another doctor until you find one who is actually knowledgeable regarding this horrible disease.
To get a doctor to understand how compromised your life is, I totally agree with CitezenErased... chart your symptoms religiously! I purchased several journals to record daily my symptoms and the severity of pain, but you can certainly do it on your phone or computer.
You are not alone in your frustrations with the medical field and the dearth of knowledge regarding endo. It is a sad reality... but do not give up. Once I found a few wonderful doctors, it helped my mental state greatly just knowing I wasn't going crazy!
Good luck, Cinnabun.
Thank you for the advice, it’s comforting but also very saddening to know I’m not alone in how I feel!
It's really kind of shocking that there are so many of us that still have to advocate for our health. Side note: I get kinda angry whenever I see a Viagra commercial, and ponder how much money and medical research has been put in to that particular condition.
It’s definitely makes the whole process 10x more disheartening to think that if we all had something different down there it would be more funded and researched!
Do I have endo or am I being overly concerned?
Few hours post laparoscopy - no endo found - don’t know what to do now :(
Gynaecology Referral 
How to get diagnosis
mirena coil - is it worth it? Other options?
