Endometriosis UK
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Teen New To Endometriosis

Hey there,

This is my first post on here and I'm pretty new to the whole thing really. I'm 17 and in my last year of A-Levels (so getting rid of the pain is kinda urgent so I can sit my exams!). I've been in constant pain since January, with excruciating pain when I'm on my periods. I have always had really horrible heavy periods with pain causing me to be bedridden, so my Doctor has put me on the pill so my periods have stopped but because I've not been on it for that long, I still get worse pains when my body "thinks" I should be having a period.

I have been to my GP countless times and been diagnosed with a bunch of things before he asked me to move to a female GP who's been a lot more supportive, she referred me to a gynaecologist which had a 3 month waiting list (I've now only 17 days to wait) however the pain got so bad my dad took me to the A&E a few weeks ago and I managed to get an emergency gynaecologist appointment. I have also had two scans, one that showed a cyst, but they said it was just a normal cyst and on the second scan it had gone, thankfully they couldn't see anything else, but that still doesn't help me with the pain!

The gynaecologist said that because of my age it's unlikely to be endo (she said that endo was caused by retrograde menstruation and that it's unlikely that such an amount has built up to cause pain whilst being so young) but she told me to change the way I am taking the pill to a tricyclic regime so now I take the pill for three months at a time and then have one period. So far, the pill hasn't really helped me much with the pain but I've only been taking it for around 2 months. The gynaecologist who I have seen already also said that she wouldn’t advise the lap right now because of how young I am and she said that sometimes they don't even stop the pain so they wouldn't really want to operate on a 17 year old.

I don't really know what to do going on from here but I'm still in pain and I've recently cut down on how many tablets I'm having a day (pain killers, anti inflammatorys , antispasmodics etc.) because it used to be over 20 and I was worried about how many I was taking, now I mainly take paracetamol (I've been put on cocodamol and naproxen but the gynae advised not taking strong pain killers for a long period of time, which makes sense!) but the pain is still always there. I used to be really active and went to the gym around 3/4 times a week but since this pain has started I can barely walk around my village and a lot of the time I'm bedridden. I've missed a lot of school because of this and it causes me a lot of stress, especially about my grades! I'm really worried that they won't investigate further or if they do they'll find no signs of endo and I'll be left just in pain with no explanation. I was wondering whether anyone had any advice about any alternatives or treatments that have helped them or any questions you think I should definitely ask the new gynaecologist I'll see in a couple weeks.

I'm sorry this has been so long!! I'm just really worried and seeking help! Thanks guys,

21 Replies
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first things first, if you’re old enough to have periods, you’re old enough to have endometriosis! I hate to say it but you’ve got to fight for your treatment, you’ve got to keep asking and begging for a laparoscopy basically, that’s the only way they can diagnose endometriosis, I started asking around 16/17 and they finally did it just before my 19th birthday, it sucks, but gynaecologists really don’t take young women seriously! ☹️ x

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Thank you so much for the words of confidence honey it really means a lot to me! My mom and I sat through reading the replies and I’ll be super to keep this in mind when I next see the gynae! Thanks so much!

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If it helps, download this app called clue or start a pain diary, personally I use the app, and it helps track your cycles but you can also track non-cyclical pain, it helps if your doctor can see it in front of him, and then you’ve also got evidence to back up what you’re saying, boots sell stick on heat pads that are disposable and were an absolute life saver for me when I had to do some exams recently! And talk to your teachers, explain, my English teacher was an absolute gem when I had my GCSE’s, just be honest about why you might miss some school and might look like you’re in incredible discomfort during your alevels, you’ll get there! Just don’t give up the fight 💪🏻 x

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Hey honey! Clue is such a great app I find it so helpful and I’ve been looking for a pain diary app but I’m finding it quite hard to do everyday! I may get a physical diary! Heat pads are a lifesaver but I’ve got horrible burn marks on my stomach now from constant hot water bottles which makes me feel even more conscious about my body! My teachers have been really helpful and able to send me work home on those days when I can’t get out of bed and keep reminding me to put my health first. Thanks so much for the support honey xx

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Hey Louise,

I’m sorry to hear how tough a time you’re having at the moment. I feel I ought to say however that the ‘advice’ you have been given about your age making the cause of endo very unlikely is not true. Endo can flare at any age and though it’s more likely to appear later that doesn’t rule it out. When my first symptoms started appearing I was 19 and I got absolutely nowhere on the NHS so at 21 my mum paid for me to see a private specialist consultant as we were so worried about the symptoms. I found this consultant by just googling online. If youre in the U.K. then google things like ‘endometriosis Spire hospital’ or ‘endometriosis BMI hospital’ and something should come up. I know most people may advise you to change NHS gynaecologists or GPS to try and find one with a greater knowledge however, paying to see someone privately for an initial consultant (around £180 - which I know is a lot) was the best thing I ever did. The level of expertise compared to the NHS was shocking and although I was re-referred back into the NHS, the waiting time was a lot less. It also meant my diagnosis time was months instead of years which it often is on the NHS unfortunately.

As far as a lap not guaranteeing pain relief in my experience this is true. I’ve got my fifth lap coming up as I’m stage 4 (worst stage). My pain got worse after my first lap but whether that was because of the severity of the disease or the scar tissue from healing surgeries I can’t say. However it is the only definitive way to diagnose endo or even to rule endo out as you need to know what you are dealing with. Again by seeing a specialist they will be able to advise you on what’s best. I’m not a medical expert by any means but even when I was first getting symptoms I never heard I was too young for a treatment so again I would get a second opinion on that.

If you’re quite new to all things endo have you heard of the endo diet? If not google ‘endo resolved’ which is a great website which discusses diet and nutrition for endo. I warn you it’s very restrictive but many of us on here have found it to be very effective when following it. There are also a number of books around endo well-being and nutrition. Caroline Levitt has a great book out with many recipes.

As far as meeting the new gynaecologist that you already have an appointment for. I would firstly try and establish whether they have an expertise in endometriosis - you could just google their name or the hospital you are seeing them. Because if they don’t they may not be the best person to help you. However one thing you could do which may be quite helpful is to take a full symptom list to that appointment with a bit of a timeline so that have a really clear picture of what’s been going on. My initial symptom list I took to my appointment went back a few years! I just felt I needed to give as much information as possible as I was at my wits end.

Pain- relief wise I completely get where you’re coming from with not wanting to take a bunch of tablets. Unfortunately I’m relient on high doses of codeine to function but if you’re able to get by at the moment without that’s brilliant. Again seeing the right person should help you manage the symptoms and perhaps even discuss other options with you.

I hope some of that’s been helpful and I hope you get the help you need soon, sweet! Xxxxx

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Hey Catness,

I can’t explain how much it means to me that you sent such a detailed and helpful reply, both me and my mom are so thankful and appreciative! I’ll definitely do some research into going private even just for the initial stages and may go through with that depending on what the gynaecologist I have the appointment with says. I’m so sorry to hear that you’ve had to struggle and go through so much pain,

I know how hard it can be and I’ve only been like this for a couple months, I worry about having this pain for life, it’s so debilitating I’m scared about the future! But it’s reassuring to hear others stories and see strong role models all around me!

I’ve heard of the endo diet before but wasn’t entirely sure what to follow when it came to what to eat and what not to so thank you for referral to ‘endo resolved!’ I’m very willing to do anything that will help soothe this pain even if it’s restrictive!

I have been pretty good recording all my symptoms (I’m a bit of a control freak!! ) so I’ll be sure to take them with me and I do worry a lot about forgetting something so I’ll definitely be sure to write down everything I need before going!!!

I’m sorry to hear that you’re having to take so many tablets, I know it’s not fun but if it helps that what matters! I’ll do some research into my gynaecologist and see how that goes! Thank you so so much for all your help and support!!

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Hi LouiseBelcher,

Welcome to the forum! I'm sorry to hear you are in so much pain and that you have been given misleading information. The other girls on here are right in saying endometriosis can happen at any age from when you start menstruating.

Endometriosis UK have some helpful information on their website if you want to learn more. In particular, about diagnosis and treatment etc so you can go to your next appointment as well informed as possible. Some links are below:

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

It may also be helpful to keep a pain and symptoms diary:

endometriosis-uk.org/sites/...

Good luck with your appointment with the new gynaecologist and let us know how you get on!

Take care!

RicEndoUK

Volunteer Moderator

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Thank you for the support and help lovely! I really appreciate the links!!! Your support means so much to me

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Hey I’m 19 and when I was 18, I got told the same bs that I was too young to have endo and it’s just normal pains. I paid to see a private endo specialist which cost £214 and he was amazing! He suspects endo and explained it so much I felt like I was back in biology in high school 😂. Anyways he’s put me on the nhs waiting list for a lap but with a different surgeon as he doesn’t work on the nhs anymore.

I got told I couldn’t have a lap either due to complications it can cause in the future (build up of scar tissue) but we are pretty young so my new doctor said it probably won’t be a problem. My new doctor is a bit better like he actually listens and thinks if I do have endo, then it’s spreading to my bladder and bowel 🙄

You just have to keep annoying your doctors and demanding answers. There are non medication methods you can try such as castor oil packs (but not when it’s your period), the endo diet which basically cuts out gluten and dairy.

Also make sure you have a supportive family and friends, mine are useless and my parents just shout at me when it’s my period or when I’m in pain since I’m bedridden. My boyfriend tries to understand a little bit but with a supportive team behind you, it can help feel like you’re not alone in all of this. ❤️

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Hey honey! I will definitely push for the lap and if it comes to it I may follow in your footsteps and go privately because I really need answers and to be relieved of this pain!!! I hope your lap goes well lovely!!! I’m not the most confident but I know that when I have my appointment my mom will be sure to get to the bottom of this issue and push for answers! Thank you so much for the advice honey!!! I’ve tried the endo diet for the first day today and I really think this could be great for me!!! I’m so sorry to hear your parents aren’t super supportive when it comes to your endo and I hope that you also find support and well being lovely! Your reassurance means the world to me!!!

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No worries, yeah I go to all my appointments alone mainly because my mum doesn’t like talking about periods and I have to talk about my sex life with the doctors and my mum thinks I’m a saint 😂😂 I hope you get answers soon but it will be a long journey of anger and stuff when gynaes don’t listen. I’ve seen about 6 gynaes in a year in order to get a lap and got told weird excuses along the way xx

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I’m so sorry you’ve had to go through so many gynaecologists just to get simple answers it really shouldn’t be that hard I’m so sorry lovely!

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Hello, I completely empathise with you here, this sounds exactly like what I went through. It’s a good thing that you’re already on the right track to getting a diagnosis though because I was left to suffer from 13 to 28, I was told it was normal to have pain and super heavy periods and that perhaps I just had low pain threshold 🙄 anyway my advice here is DIET DIET DIET !!!!!!!! Honestly please please try it out and see the difference. Check out the endo diet. I have next to no pain at all (seriously) when following endo diet. So, no Wheat, dairy, sugar and reduce red meat & chicken (because of the hormones) it is shockingly hard at first and I imagine even harder when you are a teen but I promise you it works! Periods become light and almost pain free. I don’t agree with your gyny that you won’t have had enough time to build up the endo and pain, from the very first day of my period I was wiped with pain and could barely hold a pen I was in so much pain and weak. Endo is an inflammatory, oestrogen dominant disease so ANYTHING you can do to reduce those two things will most certainly give you relief. So no inflammatory foods and no foods that will increase oestrogen. No alcohol at all. Plenty plenty plenty of cruciferous veggies. I find eating broccoli and cauliflower more effective that any painkiller as they almost instantly reduce inflammation. Good luck give it a try. But make sure you eat enough to keep you going, don’t starve yourself. And try reduce your stress best you can as that is inflammation. Xx

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Hey lovely,

Thank you very much for the response, I have started the endo diet today for the first day and really I don’t miss all that processed stuff, even if the pain continues I feel better eating healthier!!! It’s really encouraging to see people looking after themselves naturally because it does worry me taking so many tablets and I’d hate to become dependent!! Thank you again!!

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Hi! I'm 18 and also in my last year of A Levels (absolute nightmare) I was diagnosed in October last year so I can assure you that you're not too young to have endo! I know it's really frustrating when your doctor won't listen to you - I was in the same boat to an extent as my gyn didn't want to do a lap but I pushed for it because I wanted answers before exam season really kicked in. Because of the horrendous times on the NHS I went private as have the insurance and although my consultant wasn't an endo expert she was actually pretty helpful and when I pushed for a lap to get some answers she agreed. As for being worried about it affecting your grades etc- speak to the exam supervisor at your college. Talk to her about what's been going on as there's the possibility you can get rest breaks etc if you're struggling with pain during the exams, as ten minutes or so out of the room to have some fresh air and a drink of water can really help, especially in a long exam (though I don't know what subjects you're doing).

Hope you get some answers and send me a pm if you need any more advice on being a teen struggling with endo xxx

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Hey honey!!! I’m really sorry to hear that you’re struggling the same as I am, I know it’s hard to balance this with school work but remember that you, your health and your happiness are more important than school and grades honey!!! I shall definitely push for a lap when I see the doctor and hopefully all goes well but thank you so much for the advice!!!

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Hi Louise,

I’m so sorry to hear you might have endometriosis at such a young age. You deserve to be living life to the max and I know how hard that is to do with endo. It can lower quality of life quite dramatically because of the waiting times and misinformation provided by gynaecologists. My best advice is as follows:

1. Take what the gynaes tell you with a pinch of salt. They can make wildly inaccurate remarks about endo. The disease isn’t widely understood by medical professionals. You’re obviously an intelligent young adult. You might prefer to do some research yourself.

2. Please consider switching to the endo diet. Of all the things I’ve tried, this helps me the most. This diet has kept my endo pain under control.

3. Hot water bottles.

4. Strong pain meds.

5. Vitamins and supplements: I take Nordic Naturals fish oil, and Pharma Nord multivitamin antioxidants with minerals. The first reduces inflammation and the second provides a wealth of friendly vitamins and minerals your body needs.

6. A good quality probiotic can help reduce any bloating and also bolster your immune system which can suffer from living with a chronic disease.

7. Cysts, I’m afraid, do come and go. Some stay a while to grow problematic, some rupture, some are pain-free and leave as quietly as they came.

8. It sounds like you have a really supportive mum. Thumbs up to her. You deserve lots of support. If you’re armed with research and facts, you won’t be easily fobbed off by the health professionals which might result in faster diagnosis.

9. Laparoscopy is the gold standard for diagnosing endo. It’s a procedure involving tiny incisions so I don’t know what your gynae is on about. I would insist on a laparoscopy. Tell them how much it’s ruining your quality of life.

10. I was told that the pill has a 60%-ish success rate in helping with endo. You need to see what’s going on, though.

Good luck! I hope you get all the help you need.

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Hey Thalia,

This is such an amazing response thank you so much!!! You’ve really helped with the growing anxiety around going to see the gyn and I’ll be sure to keep this all in mind! Honestly hot water bottles are a life saver but I have funny burn marks on my stomach now from them which makes me a little conscious but the heat helps! I tried today for the first time on the endo diet and although I’ve only just started I don’t really find myself missing all that processed food and anything to help get rid of the pain sounds good to me!! Thank you so much for your response, it means the world to me! Truly I am so blessed to receive all this support!

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Hello Louise,

My 15 yr old daughter had surgery last November and has endometriosis. She has been taking codeine, naproxen, paracetamol regularly for two years. She was referred to GOSH as she is under 15 and the pain clinic at the hospital where she was treated would not manage her pain as she was under 16!

She still has constant pain, but does lots of relaxation techniques (headspace app has helped massively) and has been told to walk everyday - not massive amounts, but keep moving not matter how painful everything is....she does this although it hurts as she has realised it does help her as well as yoga (following someone on youtube). Not moving means you loose stamina, and then can't attend school. She is now down to 2 codeine a day from 8 and her time at school is increasing slowly.

With regards to exams (she has her GCSEs in a few weeks) ....keep your exam office informed of what is going on. Keep all letters, get a doctors letter to say you are in chronic pain as they may be able to get 25% extra time, so you can have those moments you need to cope during your exam without panicking. Also, request a comfortable chair with arms/supportive back and take a cushion in - again, speak to exams, they should help you!

You are not alone, and it is an uphill struggle to get support, you need to find the right gynecologist who will listen.

xx

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Thank you so much for the reply! I will download the headspace app now and see how I go with that, I attempt to do mindfulness when I have the time and I know it helps me sleep well which is rare with the constant pain. I’ve been trying to walk a bit more recently (as the suns been out) and yes it’s causing more pain I guess but it’s really nice to get some fresh air!! I have been meaning to try yoga as well, I read it was helpful for some women w endo and before I started having the pains I used to really enjoy yoga so it’ll be nice to go back to even one small bit of life pre-endo!!! My mom and I are going through all the replies and it really means a lot to us both that you’d help me out, thanks so much! I hope your daughter is doing as well as possible and good luck for her exams!!

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Good luck with your exams too! One thing we did end up doing to get Lucy seen earlier was pay for a private appointment with a gynecologist who had a clear interest in endo - not one that listed amongst other interests. This did cost £200 but, it was the best use of our money - he really listened to Lucy and her symptoms, said it was endo and not in her head or other such stuff (like you have probably been told), put her on his NHS list and saw her in his NHS clinic before putting her on his surgery list. I really believe we would still be waiting with her in chronic debilitating pain if we had not done this, as the original gynae consultant wanted Lucy to take the pill back-to-back for 6 months - she managed 6 weeks before breakthrough bleeding ....again (5th variation of the pill she had tried). The second opinion was invaluable, but you need to do the research!

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