Struggling with doctors : Hi, I’m 16 and... - Endometriosis UK

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Struggling with doctors

_isobelle_
_isobelle_

Hi, I’m 16 and have been struggling with endo symptoms since I was 14. Recently I’ve had a problem with my current doctor. I recently had a phone call appointment with him for the first time and it didn’t go too well. After 10 minutes of reading my notes and asking me 2 questions he came to the conclusion of “this has nothing to do with endo or gynaecology, why don’t you go on a diet and try running” (running has caused me to have major flare up that stop me from standing up let alone run). He also said “lots of young girls like you struggle with pain, if it’s really that bad we’ll keep you on the pill for a few years” even tho I had told him this still was causing me complications. He believes that I in fact have IBS (even though after taking IBS medication for 3 months and had no effect) or something wrong with my digestive system. I was so shocked, angry and upset at his response that I didn’t say anything at the time. For over a year I have been seeing female GP’s, female doctors and talking to other women with endo, telling me that I should seek help, that my periods aren’t normal and to then be told something completely different and that I’m probably fine, to try going on a diet! I feel like he doesn’t believe me that I’m just another young girl that can’t cope with pain, I feel like he dismissed what I said because he had already made up his mind about me. I don’t have anyone to go to for support because of lock down I don’t know anyone else my age going though this and it has made me feel so alone and scared, I don’t know what to do.

32 Replies
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Sorry to hear you’re having a rotten time. I had a very similar start to the beginning of my journey. I kept a pain and symptom diary and presented it at a review, they saw how bad I was and then agreed to operate on me. But it was a fight the whole way.

Are you on any Facebook groups for local endometriosis support pages? I believe they are listed on the endo UK website. My local group has an online virtual meeting which is nice :) xx

Hi thank you, no I’m not on any Facebook support groups as I don’t have Facebook but I’m thinking of setting up an account or something to get in touch with people. xx

Hi

I put a link earlier which has some great tips for dealing with GP. Please don’t take what you’ve been told to heart, you know your body. The NICE guidelines are really useful. Speak to a different GP. I’d recommend using the online form to make an appointment, it gives the opportunity to write symptoms the doctor can read before you talk to them.

Do you not have anyone around at all?

From what I can see doctors go straight to IBS, ask reasons why? Tell them that this is one of the reasons it takes so long to get gynae issues diagnosed.

Hi, I do have support from family at the moment but I’m used to going and seeing my school councillor and getting support from women in our community who also have endo but i can no longer do so. I also don’t know anyone my age which can make it difficult sometimes.

I will check out the link you mentioned and the NICE guide lines. I will also make sure I ask questions when IBS is next brought up.

Thank you very much x

Hope you get sorted. Maybe have the next call on speaker with your mum listening, give you some support.

Take care, try not to worry too much 😊

The forum has been great for help. Endometriosis UK site has a telephone support system as well. I’ve used it in the past.

Oh wow I didn’t know that that’s really useful thank you x

Hi

So sorry to hear your struggling. All the way from when I was 11 up until only recently I had to fight hard to get someone to take me serious enough. I was also told for ages that it was IBS despite been on treatment for it that didn’t make it better. Have you seen a Gynaecologist at all or has it all been through your GP??. Just because your 16 does not mean you can’t have Endometriosis so whatever you do, do not take No as an answer. It’s hard advocating for ourselfs when so many professionals don’t believe you, however it’s all worth it in the end. 100% if you have a Facebook account look for a Facebook group called Teens with Endo, they are really helpful and it’s full of people your age who are suffering and feel alone. Good luck, I hope it all works out for you in the end ❤️

_isobelle_
_isobelle_
in reply to Lover124

Thank you so much, see this is the problem this doctor that told me all this is a gynaecologist he has discharged me and I will be going back to my GP so I’m going to ask for a referral to a different hospital. I’m also going to set up a Facebook account soon so I’ll check out the group. x

I find some male professionals don’t really understand it at all. When you ask for another referral ask to be referred to a a Gynaecologist who specialises in Endometriosis especially for teens. There are loads of them around and I’m sure you’ll be able to find one in your area x

_isobelle_
_isobelle_
in reply to Lover124

Thank you, I always feel bad when I say I feel like they don’t understand. I know it’s what they do but it can be difficult to be told by a man that I probably just have bad periods. Thank you so much again for the support it really help x

Lover124
Lover124
in reply to _isobelle_

Men just don’t understand at all if they had to go through it then they would. Don’t worry we always support each other, I’ve definitely got through it a lot better with the support of other girls who are suffering with it too. I hope you get some answers soon and if you need anything don’t hesitate to ask 💛

_isobelle_
_isobelle_
in reply to Lover124

Thank you xx

Male doctors should not be treating women with complicated periods!! I am so very sorry you had to deal with that idiot. Many women with endo also suffer from IBS...... good grief. ..... stupid ass should pick up a book!! You poor, poor girl, you are not alone in this struggle and many of us have had to teach our doctors a thing or two. I refuse to see any male doctors and think it is well worth your time to research a female ob/gyn in your area. Sadly, they still do not know what causes endo or how best to treat it. From my first period at 13 yrs I had terrible pain and problems. I agree that keeping a diary of pain, periods, bloating, IBS etc is important to a diagnosis. Stay true to yourself and don’t let any doctor mistreat you. We pay them to do their job and if they don’t, walk away.

I hope you find a competent and compassionate physician to help you

Thank you I’m so glad to know I’m not the only one who doesn’t get along with male doctors x

Please don’t take offence, I had more help last year from male GP than female, stupid comments from female who said I should expect UTI, etc. None of them actually took gynae stuff onboard though due to my age. I have had stupid comments from male doctors in the past as well.

Most of the time I’d go for someone with the right knowledge than whether male or female. I wouldn’t go back to the same GP though. There’s also a nurse I’d never see again either.

Sorry to interrupt.

No need to apologise we’ve all had all had different experience and I think it’s important to hear a range of opinion. Every ones has been very helpful x

I was told from around age 13-14 that I just get painful periods, by this time I had been having periods 2-3 years and just dealing with the pain as that is what I thought was normal. I even had an emergency call out as my GP thought I had an appendicitis but it was my period coming. I've been given various pain relief to deal with my excruciating pain over the years and none of it has worked. Mid last year, my first male GP ever must have got fed up with me keep going back to him for my pain relief and I had really low iron levels from the amount of blood I was losing and again i was asking him to refer me (i had asked many other GPs, all were female) and he finally agreed but first I had to have an ultrasound. I think lucky for me I had someone decent do my ultrasound, she was really sympathetic, went through my symptoms and said from what she can see on screen, I have adenomyosis. I'm still awaiting a referral to gynae as I'm pushing to see whether I also have endo and won'tstop until it'seither been ruled out or found. I have had 3 ivf cycles and I have asked every consultant whether my painful periods could be because of endo and each one has dismissed it. Please don't give up and don't be fobbed off. You are young, if you can get your diagnosis early, hopefully you can get the help you need. I'm 36 and still waiting but still pushing for my referral. Can you ask your GP to refer you and let a specialist in the area decide whether they will investigate you for endometriosis? I wish you lots of luck and courage xx

Hi, thank you so much, I’ve been sent back to my GP and will be asking for a referral to a different hospital to speak to a different doctor.

Hope your able to get the referral you need. x

I actually said to my male GP that if it wasn't for the fact that I wanted children, I would have a hysterectomy just to get rid of my pain. I'm not sure if the enormity then sunk in and how much my pain actually affected me, I mean having 3 IVFs and loads of other fertility treatments would hopefully show how much I actually want a child and to give up on that dream because of my pain must mean something. Who knows what he was thinking that day.

There is all this "research" that shows certain things, like with adenomyosis, it's woman who have given birth or have had surgical procedures that has left scar tissue that are diagnosed with adenomyosis as well as in woman in late child bearing years. I have had no surgery to cause scar tissue and I haven't ever been pregnant. There are a lot of us that don't fit into the typical "boxes" when it comes to diagnosis.

Maybe try the symptom diary, if you've not already done it. Explain or even write it down, how your pain impacts and effects you daily life. Like when I'm on my period I have to know where I'm going has a toilet or I'm not too far away from home so I can get to my toilet or change if I need to. I also managed to get an appoint with my GP on the day of my period so that he could see how I felt (I looked like 💩🤣) I think it was important for him to see how drained I looked (because that's how I felt), how much pain I was in, how bloated I was, how sick I felt and how it took all my energy to get to that appt. I remember looking a complete mess and feeling a complete mess but it was like no one believes me because I am so good at hiding how it makes me feel xx

It sounds like your having a really hard time and I hate how women like us feel like no one believes us, it’s such a difficult thing to go through as it is and having no one believe that it’s there, it’s worse.

I do keep a pain diary and it’s come in useful I’ll make sure to keep updating it.

Again thank you xx

Unfortunately after about 9 years I finally saw a female gp who knew what they were doing and got a referral. But prior to this I had been told I ibs, then nearly operated on for appendix, then 4 3 night stay in hospital for what they thought were kidney infections with ct scans and more. To finally seeing a gynecologist who still thought I was being dramatic and that maybe I had an sti. I was furious but I put my foot down and got an ultra sound that showed nothing unusual but I knew something wasn't right. I was always in pain. So I went ahead with surgery against my surgeons recommendation and low and behold I had endometriosis and since my surgery which I won't lie isn't nice- I am pain free for the first time in years! My only advice would be take your mum to appointments i took with my mum or my dad with me as I felt because I was young they tried to fob me off. Keep going! You know your body and when something isn't right.

_isobelle_
_isobelle_
in reply to Alicejrh

Hi, thank you so much, I’ll make sure to put my foot down next time x

I was dismissed by 5 GP’s, 1 family planning nurse and a gynaecologist by the age of 18. Of these professionals, 5 were women (including the gynae AND the GP who referred my mum for endo, who was with me at the time screaming for me to be tested!) The consultant and the surgeon who operated on me were both male and they got me my diagnosis and treatment. Please don’t be disheartened by males in this.

My advice would be to arm yourself with all the knowledge you can get and to be confident knowing that you don’t deserve or have to live with this. If someone doesn’t believe you, thank them for their opinion, and keep going back to other doctors. Once you find one who takes you seriously, request them for each appointment and refuse to see anyone else. It may mean a bit more of a wait for each appointment, but it’s worth it to stop yourself being fobbed off!

I hope you get the answers you need. Your age has very little to do with it, I reckon it’s only because we have to wait so bloody long for diagnosis that they say it affects more women in 30’s.

hi, thank you, I think the only reason I don’t like being treated by male doctors is because so far I haven’t had the best experience and so many other women I know have had the same sort of experience, but I’m not losing hope I understand that there will be male doctors that will be able to help me.

I’m not giving up, and will keep putting my foot down until I find a doctor that will listen to me.

I also don’t agree with the “it effect women in their 30’s”. This is only because it takes a stupid amount of time and I refuse to have to wait that long for some sort of diagnosis.

Thank you again. x

That’s good, I was so sceptical of male doctors still but thought I’d share my positive experience of that side of things 🙂

It’s great that you feel confident enough to get the help you deserve! I believed that I was making things up and all the rubbish I was fed by doctors for so long, I’ve only just had my diagnosis at 27! Even then, I thought I would wake up from my lap and they would tell me I was mad.

Being an advocate for your own health is so empowering, good luck with everything! And don’t feel alone, this community is so supportive x

Thank you so much xx

If you feel able to, you can make a complaint about this GP, the way he spoke to you was completely unacceptable and he will be warned so that he chooses he words and tone more carefully with his future patients.

Simply look at your GP Practice website, find the email address for the Practice Manager and write 'Complaint' in the subject line (or if you can only find a general admin email, write 'Complaint: FAO Practice Manager'), then you can simply copy and paste what you've written in this forum, you've worded it perfectly. If you can remember, include the date and time of the phone consultation.

You should get an apology, which you deserve, and it will hopefully improve things for you and other patients in the future, if you ever end up seeing him again for any reason - he will be a lot more polite and helpful next time! Good Luck!

Thank you very much I will talk to my parents and we will look into this option x

Rosie_Eliz
Rosie_ElizEndometriosis UK

Hi _isobelle_,

I’m sorry to hear about how you’ve been suffering with endometriosis it sounds like you’ve had a really difficult time.

If you need someone to talk to, we do have a network of support services that are available to anybody affected by endometriosis . Our free helpline (0808 808 2227 )is run by volunteers who have personal experience of endometriosis. The helpline is open most days th e times it is open can be found here:

endometriosis-uk.org/helpline

Best wishes,

Rosie_Eliz

Endometriosis_UK

Thank you so much I’ll check out the help line at some point x

Oh I'm so sorry for you. You just got a rotten doctor. Keep going. You'll get there. I'm afraid there's a lot of sexism in the NHS. Keep being persistent. Best of luck

_isobelle_
_isobelle_
in reply to Ala2189

Thank you x

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